Can I Delay Treatment for Rheumatoid Arthritis? part 2
Is it safe to delay Rheumatoid Arthritis treatment?
If you re-phrase this question six different ways, and search using Google, you will get a lot of good information about why Rheumatoid Arthritis treatment should NOT be delayed. So, I guess that’s the Google-vote. But most of us do not make decisions based upon a Google-vote. We need more rationale than that. So, why do some delay treatment for Rheumatoid Arthritis? Let’s examine a few reasons.
Fear:
The side effects to RA medications are startling to behold. Perhaps there is fear that the medication will be worse that the Rheumatoid Arthritis. There may also be a misconception that RA medications are all addicting and will cause lifelong dependence.
Most of the time, the best therapy for fear is information. For example, medicines prescribed for disease control (DMARDs) for RA are not considered addictive. And learning about what Rheumatoid Arthritis can do to a body goes a long way toward making the medicines sound downright safe.
Of course they are not completely safe; but neither is driving a car, walking across the street, or eating rare meat. However, all of them are safer that living with untreated Rheumatoid Arthritis.
Uncertainty:
Not knowing what to do can make any problem worse. So much is unknown when it comes to Rheumatoid Arthritis. We don’t know what causes it. And we can’t say why some fare so much better than others.
However, evidence is piling up that early and aggressive treatment of Rheumatoid Arthritis may be our only hope to reduce future disability. Listen to the doctors at the University of Kansas Hospital: “Early treatment may significantly control the course of the disease…” And NIH says: “Early, aggressive treatment for RA can delay joint destruction.”
No, they can’t tell you why you have RA. They can’t tell you how bad it will get. The cause and the cure are both uncertain. The only thing that is certain is that studies have shown that for some RA-ers, early treatment can slow damage.
Remitting RA:
Rheumatoid Arthritis that remits is more difficult to track. For those who have remitting RA, the disease can lessen at times so that life seems normal. Palindromic Rheumatism (or Palindromic RA) can remit for even long periods. One can go crazy trying to figure out what brings on flares or remissions. However, if Rheumatoid Arthritis symptoms are recurrent, it is important to get thorough exams to determine whether damage is occurring.
Hopelessness:
Sometimes it seems like relief is an impossible dream. Going on the RA meds is akin to wrestling with windmills. Even the folks we know who are using DMARDs have not gotten well. Why take all the risks if it might not even help?
That’s a really tough one. There is NO promise that the medicines will even work! But, some things are sure: Hope can grow stronger if we work at it. And it is worth the trouble because God has a purpose for each of us. Your loved ones need you to survive. Every life is worth living.
Denial:
As I explained in yesterday’s post, it is actually very easy to convince yourself that you are not sick enough to need treatment. Of course, nobody really wants to believe that they are sick enough to need chemotherapy. Actually, you can get a lot of help in this: others would also prefer to believe that you are not that sick.
Denial is useful as a mechanism for managing crises. It is an excellent temporary help in times of tragedy. However, it tends to wear out its welcome… When the time has come to deal with a problem, we might have to throw denial out like bad food.
More?
Maybe you know other reasons. Please use the comment box to tell us about them.
Recommended reading:
- Can I Delay Treatment for Rheumatoid Arthritis? part 1
- What Makes Diagnosing RA So Difficult?
- How Is RA Diagnosed?
- Hope in a Spray Can
Remember: 60-2-3. That’s 60%; 2 years; 3 months
“Studies have shown that damage to joints occurs in 60% of people with rheumatoid arthritis within 2 years. Because irreversible joint damage, chronic pain, and long-term disability can occur if rheumatoid arthritis is not diagnosed and treated early, it is now recommended that a person with rheumatoid arthritis see a …rheumatologist within the first 3 months after symptoms appear. As soon as rheumatoid arthritis is diagnosed, early treatment includes medications known as …DMARDs.” (University of Kansas Hospital)
My was no insurance and too many other things to deal with.
Kelly, Thanks for your comment on my arthritis blog. Bruce was his first wife's caretake for 14 years with 2 different cancers. He never complains, I just wish he didn't have to take care of me too.
I find the quotation from UK (KU??) ironic ("Because irreversible joint damage, chronic pain, and long-term disability can occur if rheumatoid arthritis is not diagnosed and treated early, it is now recommended that a person with rheumatoid arthritis see a …rheumatologist within the first 3 months after symptoms appear.")
I saw a rheumatologist. In fact, I moved to a different state and saw another one. Both diagnosed me with and treated me for "fibromyalgia" (even though I complained only of intense pain in my hands and feet). The second RD even did some ultrasounds, which he told me revealed "inflammation."
So, I was diagnosed and treated for "fibromyalgia" for over two years.
Finally, I sought yet another opinion. In requesting all of my records from the second RD, I discovered that the ultrasounds actually also revealed pannus and bone erosions. WTF? It was clear I had RA. WHy didn't he treat me for it?
The 3rd RD read the ultrasounds and declared I had RA right away, regardless of my negative blood results.
So, a lot of good seeing an RD did me during the first two years of my disease….
So frustrating how many rheumatologists will not look further if blood work is clear! So glad this site is working hard to change that.
Kim,
I have talked with lots of people who have your experience. Hence my campaign to improve the ACR guidelines and educate the "whole world" – including physicians – to be able to recognize RA. There are enough sad stories to fill some books…
I was told by my rheumatologist not to start a DMARD yet. I was diagnosed with RA in December after 3 months of trying to find out what had happened to me and my joints. It had come on so quickly, trying to get to a doctor who could take care of the situation was a feat in itself. Everything I am reading says early treatment is the key so I am baffled why he is being so conservative. He says…..why add more harmful drugs to the body if we can make you comfortable with Prednisone and an anti-inflamatory.
Joyce,
Dear lady. I am not a doctor; please see disclaimer link at footer of website. However, I would like to tell you that I cannot imagine a rheumatologist on earth who would say such a ridiculous thing. If you do have RA, then it should be treated. I hope you will seek a second opinion asap. Let me know if I can help you find any information.
My Rheumatologist is also cautious about starting me on toxic chemicals. He believes Methotrexate is far too severe for the fairly mild RA I have right now and after the amount of research I’ve conducted over the last six months I totally agree.
We started cautiously with Sulphasalazine but that gave me such a severe allergic reaction (the worst he’d ever seen)that I seriously thought I had Stevens-Johsons syndrome. I’ve never been so ill in my life and nearly ended up in hospital.
We’ve discussed my situation and he’s happy for me to try a gluten-free/vegan diet as I’m so anti-drug right now. The caveat is I’ve got until July for it to work because he’s told me any longer than that I could lose the use of my fingers. If things deteriorate or I decide before thent it’s not working then I go onto Plaquenil.
I’m happy with his approach. I’m glad he’s open to other ideas rather than shoving pills down my throat although I understand to someone with more severe RA this would not be an approach he would take.
True, it was a much easier decision for me with severe RA. It was like a life or death decision. Without RA treatment, I would be bedridden certainly, but more, I wonder if I would live due to the Cricoarytenoid RA that makes me gasp to breathe at times (stridor). I hope that taking RA treatments means I may outlive my grandfather who succombed to RA’s attack on his heart.
I hope that having mild RA means that none of these things can happen to you. But, I have to say – I think – if I could go back in time to before the full-blown RA and take the medicine to prevent it from disabling me, I would.
I am in week 2 of my RA diagnosis. I am being treated with Methotrexate. I am tired, suffer bouts of nausea, and sometimes have absolutely no appetite, but … I CANNOT imagine putting off treatment.
My RA symptoms started like a horrible round of flu. In 3 weeks, I was juggling horrific pain that pain medications couldn’t take away. The stiffness was awful. I couldn’t hold a hairbrush, toothbrush, pen, knife & fork, etc. Some of my fingers were horribly swollen and couldn’t be moved at all. And I had no strength. I literally could not lift a sheet up over me. I sat in a recliner, holding my arms & hands on top of my chest, and cried from the pain.
In week 2 of treatment, I still have some a.m. stiffness … some pain (but the meds are tackling it) … I can brush my hair & teeth. Every day, I feel a little stronger. The nausea (from treatment)is an inconvenience, but it is nothing compared to RA without treatment.
My doctor wants me to take Humira. I am also taking sulfasalazine and Plaquenil. I have many reservations about Humira because of the many side effects and wonder if anyone else has had problems or success with Humira. I was diagnosed with RA 6 months ago.
Hi Jane, I know it seems like a lot of medicine, but studies show RA is best treated by a combination of treatments. If your doctor wants to add a Biologic like Humira, he must see your RA as aggressive and is trying to help you slow its progression.
Did the doc talk with you about how Humira works? I’ll put a link here that might help – click here. I personally took that medicine for a couple of years with no bad effects and it did help my RA somewhat. However, I have severe RA that was not treated early, so it did not respond as well as some does.
what about the young women who want to be pregnant and have a family? Do you recommend not nursing after giving birth in order to start medications? Are there any women who have taken medications that slow the disease while pregnant and have healthy babies that you know of? any info about this side? Do we have to weigh whether to have treatment or have children?
Hi Brenda, I will work up a whole blog post about that soon. Those are important questions & I often end up writing long letters to reply to such questions in email. Of course it’s up to you – and it depends on how severe the case is. However, there is no way to predict how RA will react to childbirth – it can be the same or much worse afterwards. I strongly considered another child since my baby was many years separated from his older siblings. The docs all adivsed me that there would be no nursing for the reason you state. I know lots of women who have done other wise though and nursed a while. You are right it is so sad to have to make such hard choices. But it is a bright spot that we do have meds at all so that we can care for these babies at least with help. Also, there are several women i know who used Enbrel or prednisone through a pregnancy w/ a doctor’s care. I cannot “recommend” you do that – or anything else – but it’s been done. Hope that helps some.
I would be interested in that blog about pregnancy too. Just last week my RD went through all the drug choices available and their side effects with me. I was asked to call back with a decision. He told me to continue on NSAIDs if the pain is managable, he prescribed prednisone but said he was happy I was able to manage pain on NSAIDs alone. He however gave me a prescription for it and asked me to use it only if the pain increased. I cant tell if its a good decision on my RD’s part..
I am 29, this year my husband and I were planning to have a baby…with that in mind I am not sure what treatment I should chose. I have been reading early and agrresive treatment which included MTX helps RA, but you shouldnt get pregnant while on it. My other choice for now is Sulfaslazine but I am not sure if that is as effective…any info on this will be greatly appreciated! 🙂
Hi KP, I will work on that asap – always several posts in progress – but very important! True about mtx. Also, only during certain weeks can a pregnant woman use nsaids also. Some have used a Biologic – more have used pred. We’d hope you’d be one of those lucky ones who get a good remission from the pregnancy itself. 🙂
I will be forever grateful to my GP for my early diagnosis, and fast referral to my fantastic rheumatologist.
I cried, and created, and at first refused MTX. Until I was unable to get out of bed in the mornings, and I caved in. I developed joint deformities in the 12 months I refused treatment – I truly thought that a good diet and many suppliments would “cure” me.
MTX has been my saviour, a life changing scary drug, which has given me the chance of a vaguely normal life for the past almost 9 years.
I still have daily pain from the deformed joints, but there has been much reduced progression in the last 5 or 6 years. I totally agree with you Kelly, although these medications are scary, early agressive treatment is so necessary.
You know what amazes me, Diane? People take other things that have as much or greater risk as mtx without as much thought. Things like prednisone or birth control or even pain killers or alcohol all come with risks too. They just don’t have the bad press of mtx I guess. It’s hard to get past denial with an “invisble” disease, but pain is a big tool to push us past that point, isn’t it? I’ve not had any remitting of symptoms in 4+ yrs, but the mtx has made me at least able to bathe myself & drive my car most of the time. :yes:
hi its my metho taking nt and i forgot to take my folic acid last nt can i still take the metho tnit?
Just my opinion: yes. As a matter of fact some docs tell patients to skip it on mtx day anyway. I don’t skip it on purpose, but I’m I think you’re fine.
Shock – delayed my treatment. My first visit to the Rheumatologist confirmed I had aggressive RA through most of my joints. I was in shock for a while, partly because he was quite off-hand about something that was so life changing for me, and partly because I really had no idea what to do or expect. I took some time to research what the effects of medications might be, especially as I have other medicated conditions to manage already and there was potential for incompatibility with my other meds. I’m thankful to have found this community to share the journey with.
I have heard that before Louise. I wonder why they don’t teach doctors better ways to break this news to people. It seems to me it comes from the same place as so many other problems: many people, even doctors, don’t really understand how life changing RA is.
Pingback: On Putting Off Diagnosis/Treatment « A Figment Of Fitness
Hi all,
I was one of the ‘lucky ones’ with my diagnosis with RA – my GP was quick off the mark to understand what it was, and she was also very quick to get me to a rheumatologist. Another of the lucky stars I fell under was a clinical trial at one of Edinburgh’s teaching hospitals where newly diagnosed patients were the subject of a year long clinical trial with one DMARD or simultaneous DMARDs.
Considering I had no family nearby, was unable to work for a very long time and faced an onslaught of decision making on my own, the first year of my path with RA was closely monitored by medical staff and the nursing team I visited every 2 weeks was phenomenal.
I ended up on Arava (leflunomide) after sulphasalazine and methotrexate made me very ill. I’ve been stable on it now for four years, but it was incredibly hard to decide to take it. I am a woman of childbearing age, and at the time I felt like I was giving up the opportunity to become a mother – despite the fact it can be washed out of my body.
Looking back on it, I am very glad it got treated early and I made the choices I did. I am now home in Australia and again under the care of a very good RA specialist, who was utterly amazed at how little deformity I have in my hands and feet despite the aggressive nature of my RA.
Great testimony, Rebecca. Thank you for sharing it on this post! 🙂
Ignorance! Plain, simple, unguided ignorance.
I was diagnosed with RA in 2007; at the time I was a very busy college student–working full time, going to classes, doing volunteer work. (And just a kid–a goofy, naive, invincible, take-the-world-by-storm kid–20 years old.) I’ve had hypothyroidism since middle school, and in a routine visit to my GP to get my thyroid levels checked I mentioned I had been having chronic joint pain–especially in my hands. He manipulated my joints, questioned me about the pain, and ordered up some extra blood work. When it came back, he told me, “Well, it looks like you have rheumatoid arthritis.” He wrote me a prescription for a high dose NSAID, and that was it.
He never recommended I see a rheumatologist. He never suggested any additional drugs. I have no family history of RA, so when I told my parents they were no more aware than I was that I should have been getting more care and doing other than managing the pain. Our only experience with arthritis was my grandfather’s OA, and the doctors were just doing pain management with him, so we figured it would be the same with RA. We had no idea I was tangling with a horse of an entirely different color.
I got more and more tired all the time. My grades started dropping because I just couldn’t keep up with school work. And the pain was getting worse. The NSAIDs made me throw up every night without fail, so I switched myself to aspirin, which didn’t upset my stomach and did as much for the pain. I didn’t start doing more research until the symptoms were bad enough I decided to drop out of college, because I had to choose between school and work (and Lit classes don’t keep a roof over your head). And then I found out how ignorant I had been.
I went to a different GP who repeated the labs and said I needed to see a rheumatologist (really?)…but I was uninsured at the time and couldn’t afford it, so I thought I would wait….
And then I couldn’t work anymore. And I couldn’t sleep because of the pain. And I would just drop things or fall for no reason. I had to move back in with my parents (a hard call to make when you are, by nature, independent and 23 years old).
So now, three years later, I’m at the beginning of my journey for real treatment of RA. All because I didn’t know any better, and I trusted my doctor.
So yeah, there’s another reason for delaying treatment: you don’t know you need to be treated.
so I know this sounds crazy, but I’m pretty sure my Dr. is going to start me on meds. just diagnosed couple months ago. I know for the long term it’s what I will need, based on +RF and ccp of 200 very slightly elevated CRP onece and normal a second time. My dilema….My husband and I and our group of friends enjoy our beer. I don’t want to sound like an alcoholic, but football season, barbq’s, card night etc….it’s our social life. dont’ drink during the week at all, but I do work. Dr. says no drinking day before, during or after treatment day. fine, so makes me thinkI can take it during the week, but I do have a job that requires me to be alert and on my toes…..Do I need to be shaken to see the priorities in this matter. I also have small kids, a long life to raise them before they are on their own….I need to be healthy for them, so this should be a no brainer. If I need meds, I guess my social outlet will have to take a hit…thoughts?
Nancy, there are 2 blog posts here you should read about alcohol before you decide. (And the comments’ pages for them.) Click here to view the tag on Alcohol & RA. I’ve gotten a lot of emails like your comment, so don’t feel bad.
The treatment stays in your body building up for weeks, so the weekday /weekend thing would not work. That might work for pain meds though & it’s a good thought for those type meds. Never mix them with alcohol if your doc tells you that. But for long-term disease treatment, it’s not the same. In that case, it’s about the long term toll on your liver mainly & we are not all the same. I’ll be interested to hear what you think after reading those blogs.
I agree you need to be able to face the seriousness of the decision about treatment, but one day at a time. You do want to be around for your family & be able to get around, too & treatment might help that. Sooner treatment is better than later treatment, certainly. And whatever you decide, you may change your treatments later too. hope that helps.
I just received my diagnosis and was put on Methotrexate. The problem is that my wife and I would like to have a second child and that is not a good idea with me being on Metho. So what do I do? I’m 35 and not ready to call it quits with 1 daughter. How do I handle this w/o being too much of a burden on my wife? The fear of this disease is far worse than the spinal-fusion I underwent 14 months ago or the ACL replacement 14 years ago. My how a trip to the Dr. can change your life.
Dave, there is a post on pregancy here, but I don’t know how much it will help you as a guy. I did read in my research that the docs often want either parent off mtx for 3 months prior to conception. Unlike a mother, at that point, you could go back on it. Does this sound like what your doc said? You’d have to ask him/ her. But you are right, there is a lifetime of decisions and RA is a burden. But you will get thru it together. Hopefully with early aggressive treatment, you will be able to work for a long time. Many people do. Ask the doc about what you might take when you are off mtx. Some women have become pregnant using Biologics so that might be a possiblity or another dmard might be acceptable during that time. Perhaps prednisone could be used during that time you had to be off mtx. Good luck to you. Yes, it is a bit change with 1 dr visit. :/
I think delaying treatment to have a child is fine. I took Prednisone which helped. I do not regret delaying treatment for almost 3 years- miscarriage included, but now I have my second child as of 3 months ago. So glad I did. I also had a daughter first when I did not have RA but wanted another child (at age 35)and went to get my swollen finger checked out only to get my diganosis. I was still determined to have another child. My husband was on board too. If your wife is on board with having another child then she will be willing to make any sacrifices. It was painful- my arthritis did not get better during pregnancy as many report it do, but I was not lucky enough. All along I’ve been on 10ish mg of Prednisone for the pain to be tolerable- now I have to face reality and take Methotrexate. But I have a beautiful baby boy. All worth it.
thank you for sharing, Laura. It’s a good point! People may need to consider about children when making risk-benefit decisions. (I wanted to delay treatment to have another child, but it was not what I chose because I already had 4 much older children and a 1 yr old I could not care for because of the RA.)
Prednisone is a gray area of “treatment” since it does reduce inflammation in most people & can slow erosive activity, but is not considered a DMARD, of course. We are working on a pregnancy project at the Rheumatoid Patient Foundation and a good friend has just compiled a pregnancy & drugs resource on her blog from all her research, in case it helps someone: http://t.co/vGFmcBEH.
Maybe it’s too early, or maybe I don’t have it as bad. My doctor did all the blood tests, I didn’t test positive for over a year, I do now. I was diagnosed based on the swelling and pain and all the physical stuff before I tested positive. There is no damage on my joints so far. My doctor suggested medicines, but also listened to my reluctance and has said we’ll keep an eye out for any possible damage, and until that happens or I can’t handle all this anymore it’s fine that I’m not taking more than Motrin.
I have a suspicion I have a mild form. I’m only 23, if I get up and go out and do stuff I barely even need the Motrin for pain (of course certain joints still will stiffen and lock up). I don’t know, I’m only in year 2-3 (from when symptoms started, not from diagnosis, that’s like, 3-5 months because I kept accidentally delaying the appointment), but I would suggest in the maybe rare(?) cases like mine that delaying treatment isn’t bad.
Sarah, RA does change over time within the same patient. There is not a way to predict whether your RA will be severe or remit or when or for how long. It is also common that damage to organs or joints occurs while symptoms are milder.
So, I have to respectfully disagree about delaying treatment. If there were any way I could go back in time and try to begin treatment in order to prevent damage or prevent the RA from becoming more severe, I would. Most patients I know would. It is good you are getting information. You should never feel pressured of course and treatment should be your own decision – that’s just my opinion.
Trying for a baby.
I cannot say thankyou enough for putting my fear into words. I have had Stills disease RA since 1996 and have treated with prednisone and Plaquenil and am now facing Methotrexate as my next line of drugs. And the “chemo” factor has been on my mind too. I am active and continue to work fulltime and “put on a good face” when I am exhausted and its time to get out of the denial stage. I have made copies of your articles and sent them to close family to help them to understand. I am a Remitting RA so my out of town family see my when i feel well only. Thank you again for putting my feelings and questions into words.
Hi, I have been diagnosed with Polymyalgia and more recently Temporal Arteritis (TA). And have been on Prednisolone for 4 years, albeit a low dose until a recent flare up with the TA. Tomorrow I have to decide whether to start on Methotexate, following lots of information I have decided I haven’t got a choice. The large doses of steroids at present started at 50mg and now I am down to 30mg a day, are not a long term option, and I can’t afford to damage my sight by not having TA under control. So thank you sincerely to providing this information. I hope this treatment will be successful. Good luck with your battles.
I was diagnosed sept 2010 d/t my feet hurt in the morning when I got out of bed. It went away in 5 minutes . My hands are fine, no deformities anywhere. I am on Plaquenil since last fall, started Methotrexate 2 months ago but have given it up. It hurts my stomach, can’t go out in the sun (even with SPF 55 I will burn). I work as a nurse part time ina physicians office. I am VERY concerned about the lymphoma connnection. People with RA have a higher chance of getting it and taking MTX adds to the risk. I also have Sjogrens. I feel good. I feel that I have a mild case of RA and am being scare tactics to force me into chem drugs. I met a patient the other day at my job and she is 75, sees a rheumatologist and only uses prednisone aas needed and takes NSAIDs. She is very mobile.
I am sure you won’t like my theory on this subject. RA may knock years off my life, but lymphoma KILLS. My father died a horrible cancer death, my husbands uncle died of lymphoma.
I think being crippled beats being dead ffrom cancer.
I am 53.
i enjoy reading your blog very much!it was not long ago i decided to give up methotrexate of 8 tablets per week which i have taken for 3 yrs and enjoyed being in the sun and drinking wine instead which is not allowed!but after 3 months i got worse,pain got worse.malaise got worse, tiredness got worse,my get up and go is going fast !!!!!!!!!!!its a nasty ilness i read this blog again n i feel better i have 3 grandchildren! i wish you all good luck we all need it rhian !
Delaying treatment not possible. This is so painful that I can’t ingore it. Two weeks into the most common meds does not seem to be helping. Every morning 2 am is the worst time. Of course the pain is always there through the day but keeping busy helps. Still can’t seem to believe this is happening I have always been active and I pay the price for to much activity now usually the next day.
I am really afraid of losing more of my already thinning hair. I have fine thin limp blonde hair and my derm has suggested I try Rogaine! I will have nothing left with Methotrexate! i was given Plaquenil instead. I had to have sinus surgery 2 weeks ago and I am afraid it will impede the healing I need. My Rheaumatologist said Plaquenil can cause hair thinning too! He said ALL RA drugs cause hair thinning! My RF was in the severe range as well as my Anti-CCP. However I had an MRI of both hands and it shows mild disease. My immune system is really bad, I have had fungal infections so I believe the DMARDS would only make these infections worse! It seems I am in a lose lose situation. Between the vanity and immunity. My pain will get worse and a dose of Prednisone will cause it to quiet for a bit-but it ALWAYS comes back to where it left off or worse.
Also, I think people think that this is in my head or if I only ate better i wouldn’t HAVE RA! I wish! I am SO SICK of that attitude! People tell me If I would just Juice I could cure myself!
About the hair Julie – I just wanted to say that if you did decide against taking Methotrexate or other DMARDs on that basis do think again please! I had exactly the same worries as you having had a long history of eczema with bouts of alopecia. I have been taking the methotrexate for 12 weeks now and haven’t had many side effects at all. My hair is a bit dryer than it was and it seems to have frizzed a little – and my skin has got some funny little red pimples but I can’t be sure that’s the MTX or it could be down to the lousy winter weather here in Scotland.
I am still on a low dose having had some trouble with raised liver levels but we are closely monitored on this drug and I have not had any nausea at all. And the best thing is that I can write and brush my teeth again and despite a couple of brief but nasty flares in my wrists and knuckles a few weeks ago I am now almost pain free and my hand can grip and squeeze better although I still can’t fully clench my fists and my wrists are still a little tender. I do put this improvement down to the methotrexate because it is the only drug I take at present (unless I’m in lots of pain when I take naproxen and tramadol) and I’m very glad that despite having relatively mild RA to date and only being diagnosed end of November ’11 I agreed to try the Methotrexate. It’s great having my range of motion improved so I can drive and work and it’s also wonderful to be relatively pain-free. You can always change drugs if the Methotrexate doesn’t work or makes your hair fall out but I’d say try it first and see.
When I first found this site I didn’t read this as I had already agreed to start MTX as soon as my doctor suggested it. I was concerned that I was jumping the gun so to speak and wondered why she was already discussing Humira and other biological agents as soon as she saw my rapid improvement with prednisone. Lucky me….she knows her stuff. I had already expressed concern about how shocked I was that just standing and walking some days was painful when I was accustomed to running, lifting weights, working full time….. I know now she is giving me the best shot I have of returning as close as possible to my level of function prior to my diagnosis. I know the meds are tough and scary. My MTX is currently being held because my gut could not tolerate the dose increase we tried. I was still having enough knee pain that I agreed to a steroid injection at my last visit. But I can only imagine what might happen when treatment and diagnosis is delayed. I want to be able to walk when I am eighty and hope to see eighty as well. I really believe my treatment will help me at the very least postpone some the disability RA brings.
Emilie, I’m glad you have a good dr! If you’re having problems with the mtx, there are several things to try – such as increased folic acid or injectable mtx. If you haven’t alread seen them there are some articles about those if you look at the list of mtx articles on the Tags List – here’s the link https://www.rawarrior.com/tag/methotrexate/
I have just been diagnosed with RA (ankolysing Sponditlitis) I had never heard of this, all I knew was dad had arthritis and so did his brother, but they were old. So although I had suffered from unexplained pains, hammer toes, since a childhood road accident – Rhuematiod Arthritis – was an answer, a better one than “nothing wrong with you you are just mental” Thanks to a useless health system and having tried several drugs, prozac, aropax so other stuff that was awqful, I just put up with pain. Then last year I had excruciating pain in my lower spine, Ankolysing Spondilitis diagnosis. How nice all these years I have been in varying degrees of pain and got no answers – it sucks. Why don’t Doctors know about this!!
I have been diagnosed with RA and sjogrens 18 months ago. Have taken Plaquenil for that long and have taken methotrexate for 1 year.
I have had close relatives die young with cancers, lupus, Ra. I am 54. I am very active and have no pain, I am only on methotrexate b/c my rheumy said to treat RA hard right NOW.
Heres my take on RA drugs and life expectancy with RA. If my life span as of today averages I live to be 78, then minus the 10-15 years it is shorter d/t RA, I will die by age 63 or 68. That is not far off at all. I just wonder if I should take this harsh methotrexate and worry about lung,kidney,liver etc damage that could occur? It I stop the methotrexate and get crippled up soon, it won’t matter all that much…I won’t have much longer to live.
I am just being a realist about it.
shelly
Hi Shelly,
Of course, no one can know the future. A couple of studies have shown that methotrexate may make a difference in life expectancy by suppressing the disease so I think you have a doctor who is trying to be aggressive and help you fight the disease. Those with severe symptoms are more likely to have their life expectancy shortened – and you said your symptoms are mild (no pain) so I would fight the disease and try to prevent its taking hold, if I were you. I’m a realist too, and that’s just my opinion.
My above post, you may email me about how you look at this subject.
shelly
I was reading, “Should I Delay Treatment…” Was diagnosed with RA in January. In examining my feet the Rheumatologist said I have had RA for quite some time. When I had a pain I would take Aleve. This went on ocassionally for a few years. Didn’t know until my foot stiffened a bit and then a hand. The doctor told me aleve causes stomach ulcers and to take tylenol.After I couldn’t take aleve felt like a storm had entered my body. Then the rheumatologist prescribed metrotexate and folic acid. Had to take cortizonesteroid shots it was so so painful.Did it start with stiff feet and hands or before? Okay now. I’m 68.Pain is gone.
I was diagnosed almost three weeks ago and I have been riding around with the top 3 cocktail of aggressive meds hiding in my glove compartment. The rheumatolgist I saw spent all of five mintues with me, handed me the scripts and sent me for bloodwork. The LPN gave me handouts to read on the meds and stressed the importance of folic acid and calcium…I have learned more from all of the posts and stories on here than I did from the doctor I am supposed to entrust with my treatment. I am waiting to find a new rheum. so that someone will take the time to give me explanations, etc; Plus, as I had read on here that it was important to have a copy of my records WITH Doctor notes, I obtained these only to find out that this rheum. never read the medical history I took an hour to fill out (despite barely being able to hold a pen)…so I delay treatment for fear that the medications might not mix well with my meniere’s disease, (i.e. I have no equillibrium) but as I am not a medical expert, I hope that I find one soon that has the time to actually have patients.
I delayed treatment for 2 years to conceive and have my baby who is now 3 months. I am going on Methotrexate soon, but have only been on Prednisone.
I was diagnosed about 10 months ago but in retrospect, I think I have had RA for a long time. I have no health insurance and have not had any for some time. I receive my treatment through a state insurance program at a teaching hospital. I am on methotrexate, prednisone, plaquenil, and sulfasalazine. The doctors continue adding new meds. Some of my symptoms are improving and some are getting worse. I also have fibromyalgia. The muscle pain is better but the pain and swelling in my hands continues to get worse. I have chronic irritable bowel syndrome and chronic sinusitus. I think these conditions are caused by the RA because they are both inflammation related. I have a fatty liver but cannot get a liver biopsy because I don’t live in the county where the hospital that treats me is located. I have been struggling to work for some time now and I have filed for disability. I am always nauseous from the medications. By far my biggest issue is explaining RA. I’m tired of people saying, “Well, you don’t look sick.”
Hi,
I noticed slight swelling in my left hand thumb and index finger around the middle of March 2012, went to my Doctor who order blood tests and told me in her opinion and after physical examination, that I may have R.A. She also enrolled me for an appointment at the Rheumatology Clinic at the hospital. Went back to my Doctor after a month as I had a slight touch of Bronchitis and she confirmed from the previous blood tests that I have slightly elevated rheumatoid factor. Finally got called to Rheumatology
Clinic at the hospital on 21st of May 2012, saw Rheumatologist and she confirmed that I had RA. She advised and suggested that I start using Methotrexate immediately and she gave me a fact sheet and information about the side effects of taking this drug. I went away and talked to my family and decided not to take Methotrexate and sort further advice from a Naturopath. The Naturopath prescribed me with two natural supplements to help with the inflamation and pain and told me I would need to adjust my diet, not to eat sugar, salt, white bread, white rice etc. She gave me a whole list of foods that I shouldn’t be eating. Anyway I took these supplements for just on a month, noticing that the swelling and pain had decreased slightly.
I then went back to the Rheumatology Clinic on the 8th of June and advised them that I had been taking natural supplements and could I still have the full blood test to see if these supplements had made a difference. The blood tests showed that since my initial blood test at the clinic on the 24th of May 2012 and the second one on 8th of June 2012, the inflammatory marker had gone from 2.5 to 9.2, so the natural supplements had not made a difference.
I am now in a dilemma of whether to start Methotrexate or not. I have read all the information about the side effects it can cause and am very scared about starting it if I decide too.
I have an appointment with my Doctor tomorrow and will discuss with her about starting Methotrexate.
I am very scared about the whole thing.
Denise.
I just posted above and forgot to say where I am from, Denise from Auckland, New Zealand.
Also forgot to mention that I have been told I have bilateral RA, which means both sides of the body, so I have it in both hands, both feet, behind my knees and top bone of my spine. Pain is minimal and I still run, play indoor soccer and do strength training.
Talked to a friend today who has had it for 15 years, got it when she was 35 and is now 50. She tried Methotrexate for 2 weeks and her hair started falling out, so she chose to stop Methotrexate and just manage it herself. She is well but her hands are quite deformed. She started taking Chlorella Powder which is basically a detoxifying powder and says she has never felt better, but that it didn’t stop her hands from becoming deformed.
I have big decisions to make tomorrow.
Take care everyone who is suffering with RA.
Regards,
Denise.
Hi Denise —
I am curious your decision? I was diagnosed with RA about 3 weeks ago; RF factor was positive, as well, my anticcp was elevated. However, my crp and sed rate are normal. I am deliberating the same decision, I am going to a functional doctor on Tuesday to see if a “root cause” can be determined….I am trying to read everything there is about RA, but I have to say that the migrating pain started in my feet about a year ago and now is migrating around my joints…I am seeing a new rheumy on monday to review and discuss; I was not happy with the one diagnosing, did not talk long and kept uncomfortably staring at my hands??? so, awkward and weird, seriously…what is up with all this nonsense at the doctor’s? 🙂
Tricia, most rheumatologists were trained to judge your diagnosis or disease activity by looking at the back of your hands. This is not an appropriate way to diagnose a systemic disease, but it is what they were taught. Better doctors will listen to you describe how all of your joints have been affected (changes) and systemic symptoms, and consider that along with your blood tests and family history, along with a thorough examination – which includes squeezing of the joints, not just looking at them. We have a lot of information here about blood tests, measuring/diagnosing RA and methotrexate. You can click on the Tags List of Topics to help find more. Having a normal crp & sed happens to at least 40% of us, even when the disease is active. Good luck with the new rheum doc.
Hi Tricia,
I decided to start the Methotrexate on the 25th of June 2012, it has been 5 weeks since my first pill. I take Methotrexate on a Monday evening after dinner and then take Folic Acid on a Friday morning after breakfast.
I started to get a cold 3 days after starting the Methotrexate and spoke to the Rhematology nurse as I was concerned that it maybe affecting my lungs. She informed me that it was highly unlikely because of the drug and that I more than likely already had the cold in my system. I did not take anything for it and by the end of the second week had to go to my Doctors. It had turned into a nasty chest infection. The reason I never went to the Doctor earlier was my fear of taking other drugs with the Methotrexate. My Doctor told me that was nonsense and I should have gone to see her earlier. Anyway, in just over a week, I was ride of the chest infection and back to normal.
I have had no side effects yet and noticed from about the 3rd week of starting the drugs that the inflammation and pain have subsided quite remarkably. I am having blood tests every two weeks at the moment and will be going back to the Rheumatology clinic in August for a checkup. The blood test is to check my liver function while on this drug.
I will be asking the Rhematologist to check the function of all my other organs, heart, lungs and blood levels and anything else that needs to be checked. I will also be asking her how long I have to stay on this drug and whether or not I can stop it until such time as I need to start it again.
Hopefully reading this helps anyone in some way. Will keep you updated after my checkup appointment in August.
Take care everyone.
Regards,
Denise.
There are many people who claim that a vegetarian or a vegan diet does help people who have RA. It turns out that this has been studied, and these diets provide absolutely no benefit to people who have RA, when compared to a healthy (still mostly plant based) diet that does include a moderate amount of meat/animal products.
IMHO, there are plenty of good reasons to consider a vegetarian or vegan diet, but control of RA is not one of them.
Hi, I got a prescription yesterday but did not collect the drugs as yet as I’m very unsure. About 7 years ago I had difficulty walking and occasionally severe pain in my lower back and right leg and after 4 years and many incorrect treatments we found it was my right hip joint…. 2 years ago I had a hip re surviving and all was great till about 3 months ago when my left hip started with similar discomfort I had another mri and yes the joint is also damaged, they injected cortisone into my left hip joint and told me to start with mtx and a malaria drug…. I do not have any major pain or discomfort, If however I drive a long distance like 400km I won’t be able to stand without major pain for about 2 days. My blood test claims rumetiod factor =negative but the biopsy claims “in line with RA” I can’t see why I need this mtx if I live a reasonably active lifestyle. I think I would rather have another hip replacement than this mtx. Ps I’m only 38 hope you have some advice as I’m not 100% sure that I even have RA
Money. Money is a huge reason to delay treatment. I have a great Rheumatologist. But the treatment that works for me is Enbrel. And my insurance only covers $500 Of $2100. Maybe this doesn’t fall into “delaying” but “stopping” treatment. I have researched online what my prognosis will be if I don’t pursue treatment– it doesn’t sound good 🙁 The side effects of RA sound way worse than the drug side effects.
Does methotrexate help with fatigue? I feel that is the most significant of my symptoms at this point. My rf was 14.6 and my anti ccp was 26. Both a low positive for Rheumatoid arthritis. I feel like I’m underwater. I’m foggy headed, tired and slow. Stiff in the morning til about 1:00, have aches I’d compare to having the flu. Not debilitating pain like so many have. minor swelling. (eg, in the morning I cant get my ring off, but by 11 or 12 I usually can. I have a phone appt with my Rheumatologist tomorrow. I don’t know what he will recommend, and I’m wondering if he will want me to start methotrexate when my symptoms seem so mild compared to others. It is just the fatigue is affecting my work and life, I feel incopacitated by it.
Hi Shannon. I have been diagnosed with RA for about four or five years. Before that, I had a mild form of Lupus for about eight years. I am taking plaquenil, humira, methotrexate. Often times the medication side effects are similar to the disease side effects – fatigue and confusion etc. And I am sorry to say that no matter what med you take, the odds are against you feeling the way that you used to. Relativity becomes a factor. You might feel good relative to yesterday, but not as good as “good” meant before your diagnosis – both in regard to pain as well as cognitive issues. If someone had sat me down and told me that, I might not have delayed treatment. But I was so afraid of the side effects of mtx – I mean it IS a chemotherapy drug, albeit low dose – that I waited (about six months) until finally I wasn’t just stiff in the mornings, I couldn’t WALK in the mornings. I wish wish wish – hindsight being 20/20 – that I was more trusting and that I would have started the meds immediately. Because it takes time to feel any difference. It takes time for your body to get used to the side effects. It takes time for the meds to build up in your system and start to make a difference. Your pain and fatigue may never go away. But the meds can help reduce it, hold it down a bit, so that you can function. If I had continued to resist medication, I might have ended up permanently disabled. I have an older friend who has eschewed medical treatment and her hands are now unrecognizable. As it is, I do have some joint damage and joint changes that still progress, but much more slowly that it would without the meds. If your disease activity is mild now, all the more reason to get on the meds that your doc suggests. If you asked me I would say “Do. Not. Wait.” It sucks. It totally sucks that the thing that may make your life bearable, will also be a huge pain to live with. But functional is so much better than bedridden, in my book. Hugs to you and I hope that your disease activity continues to be mild.
Money is a key factor in why I am now thinking about discontinuing treatment, even though I can tell I’m still in flare, and will be much worse. My parents just can’t afford to pay even the reduced copay and medication rates. I’m eating one meal a day to get by, seeing as I feel like I cannot go to school without my medicine (walking on campus). I already cut out the folic acid ( probably a bad idea) and multivitamin I used to take to save $15 a month or so. I don’t smoke or anything, I just don’t have any money. Also, because of my age, I will lose insurance at the end of the year, which means I will have to start paying for my own. I am stretched thin as it is, and if my family cannot help me because they are fending for themselves, then I am left in the dust. I am 18 years old, working full time and a full time student, who cannot keep her medications to control her RA… Does anyone have any advice for those younger warriors who are stuck in the “broke college kid with extra expenses” loop? I really don’t want to delay it, but I may have to.
Hi Andrea. May I ask, are you on the methotrexate only? Do your mom and dad have medical insurance – is that how you will lose your coverage? If you find a way to pay for meds, will you then be able to go to college and stay on their insurance? Were you taking the folic acid as a prescription or buying it in a vitamin store? I know it can be cheaper in certain places and/or volumes. I really hate for you to fall between the cracks. I hope someone will have advice. You may need to go on state medical aid, but I don’t have any experience with that to know how to advise you to proceed. Saying a prayer for you right now.
I am not on methotrexate only, unfortunately. I’m on a cocktail of mtx, plaquenil, and they are looking into biologics for me, since the two above only treat me enough to really get around. I still am in pain and take OTC ibuprofen to help (I get that for free from the university). I am on a children’s state insurance program, but when I’m 19 (in November) I get cut from it. I also cannot get on state aid because my parents make too much money per year. These economic times are really stressing. I can’t claim independence to try and wiggle the insurance out. Luckily, my state has a program for those with pre-existing conditions that are considered severe (RA is on the list, along with lupus, which is still pending, but my kidneys are affected by my immune system as well, so…) that will give insurance… at a $250 monthly premium and it doesn’t cover as much as I have now. I have basically cut to the bare minimum, and it’s getting more challenging. I thank my parents for the support that they can give, but I am running dry. (Also, college is not the problem, because I actually was an honor student, and gained a full ride to my university… It’s the fact that on my medications, and since I’ve had seizures on mtx before, I have to get bloodwork done every month. That’s $15 copay per visit, and prescriptions, even though the pay is only about $10-$20 per script, adds up each month.) I am fearful for how much biologics are, and am already looking into third party copay cards to make it easier. Thank you very much for your response, I really appreciate it.
Well it might help to know that sometimes the big biologic companies offer copay assistance. You might want to look into it. I am sorry I couldn’t be of more help.
Thanks Dianne. Sometimes it’s a maze and hard to know how it will work out – you just have try everything.
Andrea, it sounds like you have a tough road for a young person. We’re all pulling for you. Hopefully you can get a copay card to cover a biologic if you need to take one.
I was diagnosed a year ago July 5, 2012. I suspected I had RA at least from Sept 2011 but could not get my GP to listen. It started in my wrist hands and elbows. I was told I had carpel tunnel and tendonitis of the wrist. But when I was diagnosed by a hand ortho expert he said, I had signs of inflammatory arthritis. He ordered blood tests including Anti CCP, CRP, sed rate, and RF. Only my Anti CCP and CRP were high. It took months to get into the rheumetologist. I would suggest you research your own alternative nutrition and supplements to help like vitamin D3, B12, etc. and proceed with the rheumatologists medical plan too. Make it a two prong approach to the problem.I am concerned that many of the drugs don’t have that good of a response so you need a back up plan in place at the same time. I have read that 30% of all people with RA are not helped by DMARDS or Biologics. So have your next best alternative plan ready.
Hi,
I am new to RA and new to this website. I have had palindromic symptoms for about 5 years but didn’t realize what it was. Two months ago I turned into full blown RA with positive markers. I got swelling in multiple finger/hand/wrist joints, pain in my neck, some pain in my feet. I saw my doctor and just saw a rheumatologist who prescribed me plaquenil (I am nursing a 6 month old). I started low dose naltrexone while waiting for the appointment, and changed my diet. So, I just picked up the prescription today, but here is my question – my symptoms are totally gone today. With the exception of minimal soreness that is resolving in one finger joint, I am totally feeling normal, after 2 months of symptoms. I have no idea whether I should start plaquenil or wait and see if anything returns.
I also wondered if anyone knows if plaquenil can prevent the progression of coronary artery disease with RA? I have very early family history of CAD, and want to avoid this. I don’t want to give up nursing, but will if it will change my life…
Thanks for any input…
I’ve been living with arthritis half of my life. Initially, it took a long time for diagnosis- I was only a teenager; understandably it wasn’t the first thing to spring to mind!! After two years of trialling different medications my parents were becoming more worried about side effects and the damage the drugs had caused and could cause. A family friend who practised as a GP with a clinic providing homeopathic and chiropractic services suggested looking at my diet, but continuing with the plan that the hospital had created too as he recognised it’s value.
As time went on the effect of my diet became clear; my arthritis was severely influenced by the consumption of dairy products. I was lucky; I eased off the medication and was able to control inflammation and pain by avoiding milk, cheese etc. Unfortunately, last winter I suffered a flare up. It seemed to take months for my pain and stiffness to be recognised for what it was-completely debilitating. I don’t know about anyone else, but restricted movement on a long term basis can make me depressed; that feeling that I’m trapped and restricted by my own body.
X-rays showed nothing, a steroid injection gave me relief for about 4 days, then when I returned to the rheumatology clinic a doctor who didn’t know my name and hadn’t even looked at my chart to see which leg was affected talked about mtx…the nurse was actually the one who explained the side effects and gave me a little reassurance. But over the next couple of months, I felt no relief, and just found myself worrying about the side effects. I stupidly then mislaid the prescription 😛 but I used it as an excuse to stop taking it.
I returned to the clinic today with intrepidation. But the doctor I met was more reassuring than I had expected. We chatted about the pros and cons, a little like the way this site is laid out. I now feel like there’s more of a plan in place…an understanding about it…as mentioned, that phrase, “you don’t look sick” can be demoralising. But now with a better explained medication plan, with an MRI after a set time period, and arthroscopic procedure if I feel no improvement in 6 months I feel like I’m in charge, and finally able to DO something!! After reading the pages and posts aswell I am feeling more positive. Thank you to all who’ve posted before me 🙂
I delayed treatment so I could breastfeeding my son until he was a year old. I was diagnosed right after he was born, but my symptoms began in my 3rd trimester. Apparently it’s somewhat common for women to flare severely after giving birth so I bet a lot if women face the difficult choice between breastfeeding and getting better. There is no wrong decision here I don’t believe. You can’t take care of an infant if you can’t move. But there is also scientific evidence to support that breastfeeding can help prevent your child from developing an autoimmune disorder themselves. I chose put off treatment and I needed a lot of help at times due to the pain. I struggled a lot about whether or not I was making the right decision and my doctors sure thought I was crazy, but I would definetely do it again. I just want to encourage any other moms out there with RA. You need to do what is best for you and your family. Don’t let doctors or people with opinions discourage you. Listen to your doctors advice, but make your own decision on this matter. It’s your baby and your body.
I would like to know if anyone can comment on how effective leucovorin is in reducing side effects with oral methotrexate.
R/A drugs are just bad so I have to really pick my poison. Have anyone had good results with Plaquenil?
i think ive been through the whole list of dmards amongst other,sbut my body just rejects them all and make me very ill, i just dont know wat else to do ,
So, I was a little different. I was actually diagnosed 2 1/2 years ago by a very astute PCP, but I knew little of RD, and have been trying to “treat” it with herbs, alkaline diet, pain control, lots of sleep, Organic Sulfur crystals, etc. I finally saw my PCP again after I asked her to run a heavy metal toxicity test (mercury poisoning can look remarkably like RD) because I was convinced that it (the RD) was something I was doing wrong or not doing right. I was embarrassingly clean for all heavy metals, and finally had to admit that it was genetic or something, though no history in my family.
I don’t know. I suppose I wish my joints were not damaged because they are somewhat at this point and unfortunately have gotten very active in that damage, but I am pretty holistic and for me personally, I think I had to get to this point before I would have considered Methotrexate which I will start January 2, 2015. I like my wine and want to at least finish out the holiday season with a little celebration or two.
Now I am just trying to figure out what herbs might be okay with MTX – things like horsetail and oatstraw to help keep my hair (will be taking Folic acid too, but you know, all the help I can get with the hair and skin..), or herbal analgesics and anti-inflammatories. But boy, does this fee like an untapped area… Wish me luck guys