How well do Biologic medications help Rheumatoid Arthritis?
Biologic medicines for RA: The Humira team?
I remember when my rheumatologist explained Humira to me. She drew pictures to show me how the molecule in the medicine interfered with the process of Rheumatoid Arthritis. She said that the molecule in the drug locked onto an antibody molecule, effectively neutering the immune molecule.
It sounded more like football than medicine. So, that is why they call Humira a TNF-blocker. Maybe they should give out jerseys in that nice new patient box with the videos.
Do Biologics work better? The TEAR trial
A lot of noise is being made about the TEAR (Treatment of Early Aggressive Rheumatoid Arthritis) study which was discussed last week at the big meeting in Philadelphia: the Scientific Meeting of the American College of Rheumatology (ACR) in combination with the European League Against Rheumatism (EULAR). The TEAR trial has been interpreted as evidence that older DMARDs can work as well as a modern Biologic medicines (with methotrexate) if the DMARDs are used as a combination of 3 medicines (methotrexate, sulfasalazine, and hydroxychloroquine) at once.
Biologics and Rheumatoid Arthritis: Conflicting evidence
Those results were surprising since previous studies have shown the opposite result. For example, just this August, the Swefot (Swedish Pharmacotherapy) Trial measured how 3 (again, methotrexate, sulfasalazine, and hydroxychloroquine) DMARDs literally stacked up against a TNF-blocker (used in combination with methotrexate) to treat moderate to severe Rheumatoid Arthritis. One scientist said that the studies will be dissected in search of methodological flaws.
Methotrexate is the linebacker
As a layperson who writes a blog about Rheumatoid Arthritis, I see one glaring fact: every patient in every study that I examined was given methotrexate. Every medicine for Rheumatoid Arthritis is shown to be more effective if used in combination with methotrexate. It reminds me of getting a portrait made with good lighting and wind effects; the subject is much more attractive.
It looks as if the doctors and scientists who conducted the studies thought it immoral (malpractice) to withhold methotrexate from patients living with the consequences of Rheumatoid Arthritis. They aren’t lab rats, after all. Methotrexate is the most effective medicine we have up to date. However, only a small percentage of RA’ers achieve clinical remission on methotrexate alone and methotrexate alone is less effective at preventing radiological progression (read: damage).
When the RA drug ads are telling you how wonderful life will be with their medicine or how you can get your life back, listen carefully. They all say, “When used in combination with low dose methotrexate.” When a print ad selling Biologics says how well it works, read the fine print: they are expecting the patient to be taking methotrexate. That is in their literature.
Biologics are sold to work with methotrexate because, studies have repeatedly shown that Biologics work with methotrexate (two examples are Humira and Enbrel). “Work” is defined by greater clinical improvement of symptoms and fewer radiographic changes (erosions visible on x-rays).
A shot in the dark
Rheumatoid Arthritis is an extremely complicated disease. Scientists have only a few snapshots of how it works to attack the body. The exact mechanisms and causes are not known. However, Biologic medicines target various components of the immune system by either blocking some cytokines or suppressing lymphocytes (B cells).
Water on the fire
On the other hand, methotrexate is more like a wet blanket on the whole immune system. Since it inhibits cell reproduction, it inhibits immune function, inhibiting RA. That is probably why it also slows synovitis.
We may be a long way from a cure, but our understanding is a long way from where it was 20 years ago.
Recommended reading:
- Methotrexate and Rheumatoid Arthritis
- What Causes the Fatigue of Rheumatoid Arthritis?
- Do You Take Methotrexate for Rheumatoid Arthritis?
- Psoriatic Arthritis
I use only enbrel for severe RA. MTX made me too sick and I was catching EVERYTHING…since I am a public school teacher that was terrible! Enbrel has worked well for me thus far..I keep waiting for the “fade” to begin. 🙁
Like Amy, MTX made me sicker than a dog and I now only use a biologic (Enbrel for five months until the “fade” began, now on Cimzia). But I’m sure that a combo of MTX and a biologic would be more effectve.
Sorry to hear that. I have been very sick from Mtx, too. I call it the “kicked by an elephant” feeling. I am so grateful that my RD at that time encouraged me to not give up. Back then I had no idea about all of this… She was right & FOR ME anyway, the side effects subsided eventually. They do come back, but usually only for a few hours or a few days at a time. 😛
Kelly, I think you are amazing. I have learned more about my RA in the last few months by following you. I so believe that we need to be Managers of our RA…so thank you for the education.
Kelly, I agree, we shouldn’t have to be lab rats. But sometimes I feel medicines are rushed through to quickly without adequate studies done. For me, it’s plenty sobering just contemplating changing to a drug that has been around for a while, but in 2006 the FDA issued new standards for speeding up drug tests in order to trim costs for drug companies.
http://www.bg-medicine.com/content/news-center/news/q/id/24
I haven’t read it yet. Thanks for posting. Terry, I’m wondering if FDA speeding up the process is not also going to help patients to get more meds, better meds, less expensive meds for us too. We all demand that, but we don’t realize how impossible the RA puzzle is to scientists. (Being the optimist…) 😎
BTW: Feel the same sobering thing about taking a new drug next month… What helps with that is the sobering truth about RA itself…
Thanks for the interesting blogs! Unfortunately my drs won’t touch me with the biologicals-too many issues with my blood counts. I keep hounding them though;-)I do know that they help others and am always interested in how long RAers see results:-)
I am just started Humira (today), and I am not sure what to expect. I am still not sure what to expect with RA, period. We are a long ways from a cure, but we are not dead either. Each person needs to find out what works them, and well, I am still not convinced the RA remission exists.
Wow, what a day for you Lana. Good luck to you!! Let me know how you are doing… :rose: :rose: :rose:
Agreed about remission. I haven’t had a break in flare in almost 4 years. Sometimes, I feel even other RA’ers don’t get what I mean…
Remissions exist, they are just tough to come by, I was in remission for about 6 yrs. When I first got RA I didn’t stop flaring for about 5 yrs, then it went into remission and then it slowly built up steam again but this time it took several yrs for it to get back to where it was when it left.
Keep your hopes up and I hope you also have some remission time.
It’s hard to believe that remission is not a fairy tale, Kristy. I hope you get another one.
ditto to Jana.
Kelly, you know, I was just as you are now- I did not get a break from my RA from 2005 until early Oct of this year, and now BAM… I am feeling better everyday… go figure.. and I mean it was everyday — with no days off
Technically, one more reason for combining methotrexate with biologic agents is to prevent development of antibodies to the biologic agent. Methotrexte tends to prevent formation of these antibodies. The antibodies are in turn responsible for the ‘fade-off’ effect when biologics are used over a period of time.
Yes, I’ve read that idea. THANK YOU, doctor, for pointing out a very important reason that we might re-consider low-dose methotrexate to make the Biologics work better / longer.
Many of us get RA when we are pretty young, and it is very likely to “run out of options” faster than new medicines become available. So, it’s important to be able to use a medicine for as long as possible (as long as it can work).
BTW,
there was some interesting discussion on the Facebook page about this point:
Manufacturers of these medicines would LOVE to be able to produce a Biologic that works just as well without methotrexate. I am sure that they’re trying to do that. :handshake:
Actemra (Tocilizumab) is probably the first biologic to be tested ‘head on’ with methotrexate. The AMBITION study looked at tocilizumab alone (without additional methotrexate) v/s methotrexate. The results were reported in March 2009. This probably would be the first biologic to be tried without additional methotrexate. But it’s too early to conclude. Details of the study at http://arthritissupportboard.com/actemra_clinical_trials.aspx
I just started with a new injection called Simponi or golimumab that is combined with MTX. It is injected once a month. Anyone else out there trying this? Seems to be making a big difference although I am recovering from a recent fall and when those sores heal I’ll have a better idea. Like to know if others are being offered this and any news or information about Simponi. It is very expensive $1,950 per shot if uninsured and fortunately, knock on wood I still have insurance even though we have to make tough financial decisions every month in order to keep it… you know the story.
I am also on both meds and I am feeling better after only 2 Simponi injections.
Fingers crossed that it will work for both of us!
That’s a funny one “the FDA issued new standards for speeding up drug test – to help trim cost for the drug companies”? Those poor drug companies.
Now their just getting richer faster, and its no wonder most of Congress has stock in drug companies. So they can pass laws to profit themselves. Sure they do!
So, who is helping to get the cost of the drugs cheaper for people who’s lives depend on them, now that the drug companies can make them cheaper and faster? No-one!
And I supose you think the meds are safer now that we get them faster, because they must be getting better at making them? Right? The only reason they tell you the drugs have so many side effects (because they are so bad for you) while making them sound like a cure from above is so you can’t sue their fancy trousers off!
Reality check for you! Rich people are not honest! Rich people help themselves first! Rich people file false reports all the time! Rich people arn’t rich because they give things away! Drug companies are just more Rich people getting richer off of others peoples misery!
Kelly and RA community,
Thank you for the support and knowledge I’ve gained in the six months that I have been reading RAWarrior. I always look forward to reading posts and comments and have benefitted a great deal from the site.
I’m 47, diagnosed in May 2009 and started methotrexate fairly quickly after required testing, etc. I’m currently on 20 mg of methotrexate each week. My rheumatologist feels I’m responding well, and I guess that’s true (though it’s not easy to determine what a good/best response is/could be). I tire easily, have gained 15 lbs and have lost muscle tone and fitness. I’m sure I can improve my health regimen, both nutritionally and with more exercise. RA doesn’t make that any easier, though!
I’m glad biologics are available but have concerns about them due to the potential for serious side effects. However, I want to be proactive with treatment, knowing that RA damage isn’t visible immediately, and that the early stage is often when significant damage occurs.
Pharmacy companies aggressively market biologics. It is difficult to sort through the pros and cons to determine how aggressively to advocate for treatment with both methotrexate and a biologic, rather than my current treatment of methotrexate alone.
If you share similar questions or have thoughts you are willing to share, it would be great to hear from you. Thank you!
Hello Helen, What kind of concerns are you having? Did your doctor recommend you start Biologics? I think the biggest risk is infection. The only side effect I’ve had from a Biologic so far is a “bee sting” at the injection site or a headache following the IV.
Some factors to consider are age of onset of symptoms/ how long & how aggressive your RA is. What does the doc say?
Kelly,
Thanks for your reply. I’ve been asking my rheumatologist about biologics because I know that the approach to treatment is to start aggressively, and that there can be ongoing damage taking methotrexate alone. The doctor’s reply is that he would hate to have me go on a biologic and have a bad response such as a serious infection.
The process of articulating my question on RA Warrior made me recognize the need to seek out a second opinion. I’ll get another perspective on June 14th. I realize that my question was actually too subjective/specific to my situation. Your reply is on target! Again, thank you for the support and insight you are providing me and the RA community.
Good luck Helen with the new opinion. Have to admit the 1st rheum. dr. I ever met had that same approach. I did not stick around for another appointment. I knew very little, but I knew I wanted to find the best way to fight this & it didn’t seem he had the same goal.
If by “aggressive marketing” you meant the commercials, you are right. That is a sore spot w/ lots of people. :razzmad:
I have been fighting RA since I was 14 months old. Had Juevinile RA as a kid. Many years of pain & suffering. I have been fighting this stuff for 53 years. Most of the time nobody knew anything was wrong with me until now. These last 8 years I just get worse all the time. I was taking the MTX injections cause of nausea using pills. Then after 1 year the nausea started with the injections. Dr. says I should do the biologics but am scared what the result would be down the road from taking it. Since my ins. does not pay for injectables he wants to add Remicade to me. I now take Arava, Voltaren & prednisone. I tried other drugs, but can’t handle the sores in mouth & nausea. I have to use crutches to walk now or a walker or wheel chair. I still go to work everyday, but it is harder & harder to go. The pain is really bad all over now. Both knees are bad & my right hip. Also damage on left elbow, locked about 90 degrees stuck for many years. Is there anybody out there who has good luck with Remicade & getting your life back? Also anybody been fighting it for 50 plus years? The predisone made me gain 40 lbs. in a year so that just makes everything worse. Thanks! Shelley
Shelley, no one can say for sure whether the Remicade would help and I don’t think anything at all can guarantee to give you your life back. I think for me I get to a point – like now – where I have more to gain than to lose. I have RA affecting every joint and other parts of me & I can barely do anything at all. So even though I’m worried about it, I’m going to be starting Actmera this month. It’s up to you of course. That’s just my choice.
Wow! Thank you all and RA warrior for so much insight. I am right now taking a very low dose of Prednizone, Sulfasalazine and MTX along with folic acid. I’m better than when first diagnosed seven months ago, but still in pain and occasional swolleness. I am told by my RA doc that when I see her next month, I will probably start a biologic that I inject once a week. I assume she will keep me on the MTX and eventually get me off the prednizone. The more I learn, the more questions I have. Thanks again.
Sounds like you are on the right track, Di. Yes, a lot to learn w/ this thing!
I was diagnosed with RA when I wa 60 years old. I have been fighting it for seven years now. I took MTX first and had the usual side effects. mouth sores, fatigue, flue like symptoms. These lessened over time but after four years I began running fever and chills. No longer can take MTX. I have now been on Rituxin for almost 5 yrs. It does seem to help. I still have some flairs but not continuous. I’ll be darn if I’m going to let this desease beat me. I intend to fight to the end
Hi DeLores,
I’m glad your treatment is helping you. You have a great warrior attitude! :yes:
btw: Did they tell you the fevers were RA or the mtx?
I have gotten good results w/ a combination of methotrexate, diclofenac sodium, hydroxychloriquine, And sulfasalazine. My rheumatologist does not want to try ant biologics b/c of recent breast cancer, but as long as this combination is working as well as it is currently, I’m content to proceed w/ the status quo. I do have to block out my Saturdays for recovery from the Fri. Night NYC injection a — but I say Thank God for Saturdays. I am able to work full time, and even exercise w/ a personal trainer who is very understanding and modifies many exercises so that I can do them.
Sorry, but my computer thinks it can spell better than I can and changed a few words. I put “mtx” and it changed it to”NYC”.
haha. that’s funny. 😛 My phone does that.
Ginny, it’s good to hear about how well your able to do with DMARDs. It helps encourage others. Thanks for sharing.
Dear Ginny,
The combination you spoke about includes methotrexate, diclofenac sodium, hydroxychloriquine, And sulfasalazine.
As a rheumie I would be happy, if it is methotrexate, hydroxychloriquine,sulfasalazine and Diclofenac only on an ‘as & when required basis’ rather than daily as a part of combination.
If you require diclofenac on a daily basis; then mind you, the combination is still not upto the mark. Any rheumie’s aim is to keep the disease under check without daily painkiller/ steroids.
i would be interested in what combo you are taking Ginny as it is similar to mine. I am on 17.5 mg MTX 4 x 500 mg Sulfasalazine with 75 mg dic (with 75mg Ranatadine for the tummy). + 5 mg folic acid twice a week. Does this mean that MTX also works better when combined with Sulfasalazine i wonder?
I am generally getting on well with this, but the MTX is due to go up to 20 mg – it can really strike me out for a day or so but its so difficult to know if its the drugs or RA as it can happen several days after taking.
Because of the complexity of the disease it is quite literally a ‘fine tuning’ for every individual, i know, and it is encouraging to know that there is room for more in the future – knowing that the Ra isn’t going to go away but get worse probably!
Dear saraethompson,
Yes, methotrexate works better when combined with other DMARDs. In fact, every RAer should receive a combination of DMARDs for the disease to be pushed into remission.
You made a very good point as well. RA is a tricky disease & requires tailor made solution for each individual.. right from the choice of DMARD to the dose of each DMARD.
You are on the right track & hope your RA goes into remission asap.
I will be going on biologics (Humira) soon and am so worried about it. My Rheumy reduced my mtx because of mouth sores and so far I seem to be all right. But the Sulfasalazine does not seem to be working and she is hoping to eliminate my predisone also because of what it is doing to my glucose reading. I have had type 1 diabetes for over 40 years. So, I worry more about getting really sick, sugars going awry and not healing, if the biologic works. Geesh, it’s hard to stay positive and am grateful for Kelly and community for all of this info. Just wish I knew what was in store for me come FLU season. I too work with children and love being with my grandkids. My Rhuemy feels I will go into remission, be off the predisone and sufasalazine.I am also taking folic acid and calcium and D. I have been having a “flare” now for about 4 weeks. Don’t know which is worse. A destruction of bones and joints and muscle from the RA or infections causing out of control sugars that can cause other problems with organs. I feel like a walking time bomb. But there is something I will be undertaking soon. I am working with my Chiropracter who is doing a nutritional evaluation on me. I had lab tests done and hair samples sent to the lab also to see any deficenties I may have and then take vitamins and increase or decrease foods as needed. I am hoping to bring my blood values up to normal and maybe, maybe be able to fight infections and eliminate some of the side effects of the RA meds. My Rhuemy and Endocrinologist know about it too. There only concern was me taking a herb or vitamin that would impede the RA meds. So far that is not the case. Anyone else trying a nutritional workup? It’s a shot in the dark, but I am trying to stay as healthy as I can.
I can’t take methotrexate. I took it for over a year, but mouth ulcers increased and my methotrexate dose was decreased to the point where it was no longer reasonable to take it. BUT, INSTEAD, I’m now on leflunomide (Arava). I understand this is an alternative to methotrexate.
Are biologics effective with leflunomide as well as methotrexate?
Thanks for your comments.
(Please call me LilyAnn05. Thanks.)
(did you mean to type that as your name? I can go in there and change it for you if that’s what you meant. ? )
You’re right its an alternative to mtx. Hopefully it will work. It does for some people. Tends to be less successful than mtx, but its very individual, so HOPEFUlly, it will work.
LilyAnn, I know it’s been a while since you posted, but I wanted to let you know that I take leflunomide with Enbrel, and it makes a huge difference (as I learned when we decided to see if I could go with just the Enbrel). Mtx gave me constant headaches which, having migraines, is the one side effect I cannot tolerate. The leflunomide worked better for me than the mtx when taken alone too. I hope you find a combination that works well for you.
Re: my name…. I thought my name would not be posted. So I was giving you a “pen name” so that people would know comments were from the same person. I was wrong.
Thanks for your direct answer, Kelly! I was up to 3,000 mcg of folic acid/day on the methotrexate and my mouth sores were unabated. Are higher doses of folic acid still safe?
My income is low. I’m needing to start a new osteoporosis medication – Forteo – that costs more than my income/year because I’ve had a second hip fracture – now both hips have a fracture with no falls and no surgical correction. They are both in the acetabulum, which is the hip socket itself. Kaiser does surgery only on fractures of the femur, the bone that goes into the hip socket.
Anyway, for now I cannot afford one of the expensive RA drugs. Unfortunately, my hands are very inflamed, hot, and painful. I’m on a combination of hydroxychloroquine, sulfasalazine and leflunomide. Is there another inexpensive (generic) drug that would be a reasonable addition to, or would be more effective than the combination I’m on?
(I have altered your comments to use the pen name. Just sign in that way next time. You control the name that is shown. All up to you.)
I’m sorry you are dealing with this. I know its hard.
I think I’ve met patients who use up to 5 mg of folic acid per day. But it’s a little unusual. It could make the mtx less effective, but there is also the option of folinic acid. That is not the same. Here’s a link that discusses the issue in case you haven’t read it.
You’re right the mtx & the dmards are cheaper by far than Biologics. But each of the biologic manufacturers does have a program for those who cannot afford the medications. You can apply after you get a prescription. There are not generics yet. I don’t know how soon that will be safe since these medicines are highly specialized.
Thanks for your comments, Denise. I couldn’t tolerate mtx because of ongoing mouth ulcers. I can certainly understand why you couldn’t tolerate the headaches! I seem to be doing somewhat better on the leflunomide (Arava) than without either. I’m also taking Plaquenil and Sulfasalazine. I’ll see my rheumatologist in a couple hours, but I’m not losing the inflammation, heat and pain in my hand joints, unfortunately. The cost of any of the newer drugs is a real problem for me. I’m having to take a very expensive drug for osteoporosis because I’ve had four major bone fractures in the last year, including BOTH HIPS! There’s no way I can afford another very expensive drug!
So, for now, I must take opiates for the pain for both the fractures and RA.
Thanks, again, for your comment. I really appreciated hearing from you.
Lily Ann 05
Ouch! I feel for you. Like Kelly said, all of the biologic manufacturers have assistance programs you might want to look into. I hate thinking of you not getting treatment that might help just because of the expense. Luckily, my insurance covers mine, but Enbrel has made a huge difference for me. I felt almost like my old self until we tried to stop the arava. And I’m getting back there slowly now that I’m taking it again. Anyway, good luck.
I have been on Enbrel for 10 years. It worked wonderfully. I guess I was in remission. This was after10 years of taking gold, plaque nil, prednisone, mtx. The only thing effective before the Enbrel was pred. Now the Enbrel isn’t working. I have been on Simponi for 4 months now and only slt improvement. Now I am wondering if I should give the mtx another try in combo? I had severe nausea with it before, besides not being very effective. What do you all think? Plus I’m freaking out bc I’m afraid that maybe I can’t take any biologics due to antibodies against them??? I do have good insurance though
Irene, its believed that the mtx will help the biologic work better and longer for the reason you say. Perhaps you could use mtx in injection form. Most patients find very little nausea that way. There is also treatment for nausea if it comes back. There are several things they can try such as more folic acid or using leucovorin. Have you read through the mtx pages on this site? I think there are 18 of them plus comments pages. You can use the menu on the top of the page where it says Methotrexate & RA. Good luck to you.
Hello all,
I just took my 6th Enbrel shot this morning, so I’ve been on it for 5 weeks. I haven’t felt any change yet in pain, inflammation, or fatigue. I kept reading about how it works in ‘as little as 2 weeks’. Is there anyone successfully on Enbrel (or another similar biologic) that took longer to feel an effect? I am trying so hard to be hopeful and positive, but seriously….I am surviving, not really living. Just getting through what I have to. I would like some relief in a form other than prednisone and vicodin!! (which don’t take the pain away either, just help)
Hoping for reassurance,
jennifer
Jennifer, I hope the Enbrel helps soon. I can take longer than that so don’t give up. 2 weeks is a best case scenerio. The outside is probably between 4 and 6months. Average might be around 6 weeks. But if Enbrel doesn’t fit your type of RA, you can try another type of Biologic at that point. I know that’s not a fun thought either. Also, if you’re taking methotrexate with it, that might be increased by your doc.
I appreciate how hard you are trying to be optimistic. I do the same thing with every treatment. I always say if hope can cure, I’m going to be fine since I’ve lots of that. I also hear you about the pain not going away. 🙁 Sorry. Please tell your doctor about your pain (& all symptoms) – since there is almost always 1 more thing to try to make you feel a little better so you can function. Good luck!!
biologics scare the devil out of me.
What are side affects that people have and how serious are they?
Many have none, Debby, but there are many possible ones listed. But I have had a rash/hives from one and a persistant productive cough from another. the other 2 I had no problems from. One of them can cause weight gain in some people. Sometimes there are headaches for a day after an IV. It’s really better to ask your doctor and do research on one at a time. Pick the one you might be prescribed and start searching about that one. Hope this helps. I know it’s scary.
The difference in the response of different people to various drugs is amazing. As for me, I was completely debilitated — I could not get out of bed by myself, I could not dress myself. I think it was even harder on my wife than it was on me. I went through a whole series of medications with little relief from any of them. Saying I was depressed is an understatement. Then came Orencia — Hopefully my story of what Orencia did for me will offer hope to some others who are suffering. Since starting Orencia, I have practically no symptoms – I walk about two miles a day and longer on many weekends. It is like I have reclaimed my life. I have been on Orencia for over two years. I certainly hope that it keeps working. My final comment — Do not give up hope (as I was about to do) you just have to find the medicine that works for you.
The odds are about the same for each one of the meds – but what we hope is that new meds may help different people. There are at least 1/3 of us who are not helped by any of them -which is why companies are spending such expense to find more of them. The “don’t give up hope” message is something I hope is found on every page of this site.
Regarding Methotrexate in my case…I’m not on an biologics (yet) I am on an RX strength anti-inflammatory drug along with the folic acid but that’s all. I was given the names of two RA drugs by my rheumy over the phone, told to research them on the internet and from that I was to decide. The other drug impacts the eyes and I chose Mxt over that thinking BOTH sounded nasty. I’m grateful for the internet but the information sure doesn’t give alot of HOPE. NO cure in the near future and doctors not knowing the cause of the disease doesn’t make for alot of hope.
I’ve been on Plaquenil for about a year now, taken twice a day. The first rheumatologist I saw wanted to start me out right away on methotrexate and Enbrel. I was concerned about the side affects of both of these drugs and wanted a more conservative approach. Her argument to me was: “we need to hit it and hit it hard.” Okay that might be her theory but mine was the disease can make you sick but the cure will kill you. I sought out a second opinion with another rheumatologist who told me I needed to be on something and prescribed Plaquenil. Like most of you, I have good days and not so good days but am tired of hearing myself say, my bones hurt. So, what’s the answer here, Plaquenil (the conservative approach) or hit it hard with the big guns. I’m still confused by this disease and how to sort it all out. What to take, what not to take, and do I have the right doctor.
I took Plaqenil for about 6 months, I began to have bad muscle pain in my arms and was dropping things. So my RA doc took me off and with in two weeks the pain faded away. The depo medrol shots worked the best for 120 ml every 3/4 months. He said it was such an over all low dose it wouldn’t hurt me. I just got messed up doing the shots so now I think if my new RA doc will give me a shot in my finger and wrist of cortisone that I could get back to where I was. Doing great… so hope that he will.
I just feel like I already have all this going on in my body from the RA, I hate to add meds that have a ton of side affects that can add more problems. Right now I am doing the predinsone, cause its what I have on hand. I do the depo medrol shots every 3 months, it was working very well with just the shots, but then we had to go thru the rabies series and I was delaid a shot and now I am having a hard time getting my symptoms under control. My index finger is swollen and hurting. My wrist is wrist swollen, and hurting. I have to wait till April to meet my new RA doctor [we moved to another state] I can’t take asprin or ibuprofen, I am allgeric. I am taking some prednisone I have on hand for emergencies, I hate it, they are 20mg, I break them in half. I have dry tongue and a nasty taste in my mouth from them. I take glucosamine/chondroitin/msm, D3, vita C botin and folic acid, tylenol when needed or tramadol. I am thinking about taking Syn-Flex 1500. Any advice….
I’m fairly newly diagnosed and have been on mtx since March – the pattern has been a few good weeks with no symptoms and energy back to normal, and then it all falls apart, so we up the dosage and the same thing happens. Today I began on Humira, chosen because it’s worked well for my sister for a number of years, so the doc thinks there may be a slight genetic reason to choose it over the other drugs. I’ve been lucky with mtx side effects so far: one mouth sore, no real nausea. So we’ll see what the combination of Humira plus 20 mg of mtx each week will do. I am so thankful to have found a doctor who is responsive and determined. Favorite quote: “I don’t believe in torturing my patients by making them stay with drugs that aren’t working for them.”
I have had psoriatic arthritis for years and have been prescribed just about every fancy arthritis drug on the market. While my rheumatologists have referred to my condition as psoriatic arthritis, my PCP always refers to my condition as scleroderma. Whether the two are one in the same I do not know. I tried two rounds of Humira and like all the other medications I’ve been prescribed did absolutely nothing. The only drug that has ever given me marginal relief from daily pain is prednisone, but cannot be on that stuff forever. Finally, my rheumatologist told me if I wanted relief from pain I was at the point where my only option was to see a pain specialist. I take 45mg of morphine sulfate 2x, and 15mg of immediate release oxycodone 4x to 6x. As bad a rap as opiates have, I believe if you take them responsibly and as prescribed, then you should not have any problems. And they are not too harsh on the liver. In 20 years its the first genuine relief I’ve had from the excruciating pain of arthritis. Also, when I see all the risks and side effects on the biologics, I do not get a warm and fuzzy feeling about them. Actually, although not substantiated I get a bad vibe from them in general; I do not like them. I can’t take methotrexate because I also have HCV. That’s all … my email is jjcardella@hotmail.com if anyone wants to comment.
Thanks to anyone who read this,
-JC
Hi: Just came back from 1st rheumy visit. I have until Nov 22 2012 to decide on pill form or injection. She wants to put me on Humera and methotrexate. I am terrifed and don’t mean to be such a wimp at age 60, but all I want to do is cry and scream. I know this will pass, but I hate needles, rheumy says side effects of methotrexate not as severe if using the needle. I also have some other stupid disease to go along with the RA,something destroying the muscles. I knew my hubby should have came with me, I forget half of what I was told. Went for more blood work and xrays. Until I go back on the 22nd, I am back on prednisone. just 5 ml a day because of the weight I put on last time. I honestly don’t know what to do. I am not sure I am capable of giving myself injections, but maybe I should suck it up and at least try. I am type 2 diabetic also, but take meds right now, but who knows, that could change and I could have to go the injection route. I am just so upset, scared and I don’t know what else right now. Was anyone else out there terrifed of needles, but overcame it? Help, I guess I need advice from people that understand and know what I feel like. Thanks and sorry for whining, I’m usually a lot tougher than this.
Hi Louise,
I just started self-injecting MTX to try to get the uptake rate better (so I don’t have to try something other than Humira as my secondary drug). I really didn’t like the idea, and I hate needles, but this is OK. The needle is very, very fine, and it goes in without even a push, doesn’t hurt, and leaves no mark. I was very surprised how easy it was. I still have to take a deep breath every time I do it, but it can be done, even by a scaredy-cat like me. And don’t apologize for feeling bad. This is a horrid disease, and catches you at every turn with something new and difficult.
Thanks Suzanna: I feel a lot better after reading your e-mail. I have never been a fan of needles, but if the needle is very fine and doesn’t hurt, then I know I can do it. It all seems so confusing, some people do ok on MTX pills and do not feel the nausea I am hearing about. Others feel sick all weekend. I sure don’t want to feel sick all weekend, I still work full time and live for my weekends. I am so hoping that whatever drug they put me on that I can walk on these feet again. I have two airedale terriers and I have not been able to walk them since August when I was on a decreasing dose of prednisone. RA started in my feet, then my right knee and ankle. Now it’s in both hands too. I was just getting to the point where I could actually laugh about it and wonder what new spot it would hit tomorrow or the next day, then the Rheumy had to talk about needles and that just made me nuts. Thanks again for telling me your story about needles.
Thanks everyone for all of your experiences. I am trying to figure out which way to go. I was diagnosed in Dec ’12 – on MTX in Jan ’13 then Humira in Mar ’13 – I had immediate allergic reaction to the Humira – almost hospitalized – was in the ER for about 3 hrs. – then MTX started reacting – severe hair loss, complete appetite loss and fatigue with a severe rash in chest and upper arms. Off of MTX in Apr ’13 and now on hydroxchloroquine only. So far not much relief – fingers are really swollen and sore. Would love to hear any suggestions or just some support. My email is sherap6@yahoo.com – and thanks everyone. Here’s to a ‘good day’.
Hi Kelly,
I am interested in this post comparing the use of enbrel and MTX to the use of MTX, sulphazine, plaquenil combo. Do you know now, as the posts are a few years old, which combo is “better”? I know it depends on the patient but I have been taking MTX alone and now am trying to choose between one of these options. Thanks for any advice you can give, Barbara.
I have been on a combo of Methotrexate and Enbrel for 14 years. They control my RA, but are causing me to get frequent colds. Doctor says I have no other options. Anyone else have great outcome from biologics, but get colds and infections from them?
Doctor said he can switch me to Orencia, but I dont see the point. They are both TNF blockers. are frequent colds, and pneumonia, just the price I pay? Anyone? I feel so alone with this.
Your website is very educational. It has helped me better to understand the medicine for RA, which I failed methatrexate and plauqual. I am so afraid of all those medicines and will not take them.
wjschicago
I’ve had RA for 17years. I have always taken MTX over 10 years. After the first 3 years of pills my stomach refused anymore and have been injecting ever since. I have been on Enbrel, Humira, and now Orencia with MTX. Humira was awful I couldn’t lift my legs , stairs were a nightmare. I love people who say Oh I don’t take that stuff. Without that stuff I wouldn’t move at all, I find that out everytime I have a virus and have to skip a dose. God Bless all.
Just starting injectable Orencia with injectable Mtx and hoping!
Well hoping didn’t bring results. Waiting on Actemra approval.