The Consequences of Not Treating Rheumatoid Arthritis?
Sometimes people ask me whether taking treatment for RA matters. Over the last couple of years, I’ve answered dozens of emails with this question, posted on Facebook last week: “What are the consequences of not treating RA?”
Why patients wonder about not treating Rheumatoid Arthritis
Since I live with RA myself, I know the validity of this question; it should not be brushed off. Living with the trouble, expense, and side effects of treatments is a burden on people. Personally, I have reached the point a few times when I say, “I only want out. I can’t see another doctor or swallow another pill. Ever.” I’m tempted by the thought that I can just reject all labels and treatments and will myself well again. There are people selling books who promise it worked for them. Why not?
Because Rheumatoid Arthritis is not a phantom of our making; it is a real monster that is attacking our bodies. We can’t rescue ourselves any more than Leia could from the hands of Darth Vader. Okay men – compare it to a young Marine in enemy hands. Our battle is real. We need real weapons.
What’s the goal of treating Rheumatoid Arthritis?
Without treatment, we know what Rheumatoid Arthritis can do.
- Joint destruction: RA attacks bone, cartilage, and soft tissue causing joints to weaken and deform to varying degrees.
- Disability: joint destruction and systemic effects of RA lead to inability to perform tasks.
- Systemic inflammation: RA disease leads to earlier death, often because of its effect on the heart or other organs.
No one can assure you what will happen with RA since disease progression varies, possibly due to genetics. But the goal of treating RA is the same for everyone: to interfere with the disease process. Slow progression, delay disability, and extend life.
How much will treating my Rheumatoid Arthritis help?
It’s also true that we need better weapons. We must acknowledge that patients ask such questions because the weapons we have for Rheumatoid Arthritis treatment are not highly effective in a majority of patients. Success in a clinical trial is 20% improvement, and about 29% of patients reach only this level of improvement. Another one-third are “non-responders.” Only about 20% of people receive 70% improvement. And sooner or later, treatments lose effectiveness.
Remember Luke Skywalker took out the Death Star with one shot from his X-wing. Rheumatoid Arthritis treatments have the same goal: to use a molecule to take sharp aim at the offending immune signal. Today’s treatments work better in some patients than others, so of course the goal of research is to find treatments that work on all RA, stopping symptoms and disease progression.
Next time in part 2, I’ll respond to a similar frequently asked question: “What if the treatment is worse than the disease?”
Recommended reading
- New Way to Report Response in RA Clinical Trials?
- Video: Rheumatoid Patient Foundation Gives RA Patients a Voice
- Tofacitinib / CP-690550 aka Tasocitinib Succeeds in Pfizer’s 2nd Phase 3 Trial
WOW! — this couldn’t have shown up at a better time. I’ve been seriously considering quitting MTX because I see little improvement & the side effects are troublesome. Thank you,
Hi Kelly,
I had the same reaction as you did…With so many meds to swallow every day & the needles, i only want out from RA (wishful thinking).
But then, am thankful for my #rheum doctors, for doing what they can to help prevent the progression of the disease. I just can’t imagine what my life would’ve been if I just rejected all those meds. And am thankful that those combination worked. 🙂
God bless! 🙂
rawarrior I hvnt been able 2 b treated in over 7 yrs. W rheum dr & GP not believing me after dx & now no ins,idk what dmg occurred. #rheum
I have so often wanted to just go into denial and avoid all the pills, injections, financial hardships, and frustrations of dealing with this illness but I have a huge motivator for sticking with the treatments. I watched my Dad slowly decline and eventually die from what I now suspect was RA. If only I could have had the information available to me back then, maybe he could have received a true diagnosis and better treatment. It was torture to see the once strong and protective man become bedridden and dependent on others. I don’t want to put my children(teenagers now) through the same agonizing experience so I tell myself everytime that I am doing it for them so that they can have their Mom a little longer and their children can have a grandmother.
I used to wonder, in the beginning, if I was imagining things. I would go off the drugs because I felt better, and then back on them when I crashed.
Now, I hurt all the time, varying degrees. I am tired. I cannot imagine life without my medication. Not be able to hug my daughters or color with them ever again?
I will fight with the best arsenal I have. If willing it away was going to work, it would have worked a long time ago.
Jennifer
The drugs did not help me feel better – and I’ve been off them before for a long period to compare – I hurt all the time either way, so it’s hard to keep doing it sometimes. But in the end, I’m with you – I’m going to fight with the best weapons I can find, knowing that unseen progression could be worse without any meds. Even 20% effectiveness is better than nothing when it comes to bone erosion or heart disease.
I think unfortunately the number one reason I continue treatment even though at times its effectiveness is questionable is the FEAR or how much worse it could be. Would I even be able to move? Or for how long? I have periods of time that I am in the lucky group where I have periods where I get some relief with the meds I’m on but it is no where near remission or return to normal!
I hear you April. I bet that’s not unusual. And fear is not only of how bad symptoms would be but also long term increase in damage. We can’t know the future, but we are afraid to find out.
This came at a great time. In a support group, I met a couple new people last week who are afraid of the “big guns” treatment, because of potential side effect. I tried to explain that you don’t want to wait until you are in horrible shape with damage before you try. It is much better to try and prevent the damage. Holding off while you try diet and supplements is not that good of an idea. It’s hard to explain to someone at the beginning of this journey just how bad it can be over time, and how important it is to treat aggressively, because as you say Kelly, some people don’t respond. It’s important to work through meds because it may take awhile and damage will be occurring in the meantime.
I have had RA for 31 years. I got it at 19 and I am now 50 years old. I realize first hand how important it is to get on what ever meds you need to be on as soon as possible. Back in 1980 when I was diagnosed I was not put on meds and became severely disabled and am now in a wheelchair. I recently had my right hip replaced and am looking into bilateral knee replacements. I also need shoulder and elbow replacements. I strongly feel that if I had been put on the right meds early on this would not have happened to me. Please do whatever necessary to keep this from happening to any one else.
I know the consequences of not treating , Although not intentionally trying to not treat .I found myself in a clinical trial after the methotrexate did not work well on its own . In the trial i had to go off everything to take the trial meds.(turned out i got a placibo so i was really taking nothing .I could not walk or do amything for that matter . Swore i would never do that again !!!
Hey Kelly,
I have been recently reading up on your blog frequently. I think what you’re doing is amazing thing for the Arthritis community. I have recently started my own blog on Rheumatoid Arthritis and Athletics last month. I was diagnosed 3 years ago at 19 with Rheumatoid Arthritis.
I particularly took an interest in this post. I think it’s anyone can agree who is affected by arthritis that there needs to be a push for a treatment. It’s time to make it a NATIONAL PRIORITY!
One of you’re statements really struck me when you said, ‘Because Rheumatoid Arthritis is not a phantom of our making; it is a real monster that is attacking our bodies.”
At the tender age of 10, I personally had to see my Aunt (age 15 with degenerative Juvenile Rheumatoid Arthritis)deal with the brutality of this disease. It literally turned her body into her own personal torture chamber and due to complications she died at 43 in 2001.
When she was 15 she signed papers to Saint Baptist Hospital in Boston to have her condition researched and documented during 1974. Her condition then was so rare and extreme at the time that the doctors wanted to embrace the opportunity to put her through trail surgeries and medications. She was a young athlete who wanted her own pain to subside and to help future patients who would be diagnosed with Arthritis; she said she didn’t want anyone else to have to go through what she had to.
So in my mind when you ask “what are the consequences of not treating rheumatoid arthritis,” I can only help to think that if this disease is overlooked, that patients like my aunt who dedicated their life to finding treatment, that their efforts would have be wasted if we don’t recognize how important it is to further the research.
If you want to read more on my aunt’s story go to my blog “Making Rheum for Athletics”: http://makingrheumforathletics.wordpress.com/2011/11/29/rhonda-lee-ellis-remembered/
Thanks again
My story is similar to Lorna’s. I was diagnosed with RA in 1979 when treatment philosophy was completely different. Then they started with the least powerful drugs and worked up if those didn’t work. As a result I have lots of damage and am in constant pain. The biologics can help with current disease but do nothing for damage that is already there. I encourage fellow RA patients not to give up and to get appropriate treatment to avoid permanent damage.
The side effects from the meds are awful, the pain is worse, but I’m afraid of what may happen if I stop treatment. I’ve seen people crippled from this disease. I am determined to stay as active as I can for as long as I can. I find that yoga helps my pain level. All I can hope for is a cure.
How interesting I found this post today. Just talked to a friend who also has RA, like me, and her doctor wants her to start Bios. I am suppose to begin in January. She is set against them because she is sure her father died from taking them. It is a difficult decision for sure.
The problem with taking out the Death Star in one shot is that the Empire rebuilt their Death Star, bigger and better. Just like when you think you’ve finally hit that balance of med side-effects and RA improvement, and then all of a sudden RA comes back with a bigger and better Death Star to kick your butt.
The analogy was to precision of Biologic treatment, not to RA cure (destruction of disease). However, like you, I’d much prefer a cure. I’d personally prefer any treatment at all that worked since I’ve never had one.
Hi, thanks for your thoughts as always. A couple comments. I would add to goals of treatment to improve quality of life, which for me is as important (or more so) than extending life.
Regarding your comment about the 20% improvement as a marker of success: When I first realized that this was considered a positive response, I was amazed…my symptoms can definitely vary by this month from day to day, month to month, and this seems WAY too low. 50% yes, 70% definitely – and I know there are people (including me in the past on Enbrel) who achieved that. Although 20% is better than nothing, it’s very minimal, especially given how potentially toxic most of these meds can be. Oh, the tradeoffs….
Hi,
As I read this blog, I’m at a point where I don’t even know where to turn with my RA. Diagnosed April 2009
Dr #1 medicated, infused, injected joints, and pumped me so full of steroids for 2 years,, I became sicker. Onto
Dr#2 he believed in gold shots and plaquenil & steroids. Didn’t stay up on new studies
Dr#3 was out of network & was wonderful!! Weaned me off steroids but insurance became an issue
Dr#4 “isn’t convinced I have RA, so wants me off ALL meds, join a gym, exercise and stop complaining its probably bursitis in your hands, wrists, shoulders, knees, ankles, etc
I am exhausted looking for a Dr. To help me… Right now, all I take is. 03 methotrexate weekly… There’s one more left about an hour away, I just don’t know if it’ll be another let down, so I haven’t seen a DR in 6 months
any suggestions would be welcome.
I feel my energy draining daily, my joints are all painful and my hands are a mess…
I don’t mind the methotrexate, I believe it’s keeping my symptoms at bay for the most part…. Please help
thank you
Donna
I have more of a question than a comment. My Rheumys (I’ve seen several)are hesitant to treat my RA aggressively due to the fact that I’m sero-neg and have very mild swelling. I’ve been told that having a mild case means I will never have permanent damage. I’ve tried some meds (plaquinel, sulfasalazine, Arava, and indomethacin) for short periods with no improvement. Now I just take pain meds to function. My question is will everyone who has RA eventually has consequences? If your case is mild does that mean you will have no damage done? I am 35 and am worried what will happen living untreated for the next 40+ years.
Elaine, that makes me so angry that rheumys still believe that garbage. RA is RA whether sero-neg or not. I’ve been neg since dx’d 20 yrs ago. My wrists are gone, my ankles are gone, my arch bones in my feet are gone but I’ve only had 1 wrist fused & 1 arch fused because I live alone. The majority of my damage came before they had biologics & couldn’t treat my symptoms like they can now. I would definitely push to get better meds, if he won’t get a 2nd opinion & fire him if necessary. That is just rediculous that he won’t treat it any more aggressively.
I have been having severe muscle spasms in my back for a the last 3 days. I have been taking flexeril and ibuprofen and also a heating pad on my back and nothing seems to help. Has anyone lese experienced this and what did you do? Any help would be appreciated!
I have been having that pain for 20 years. Much worse now than before, but no doctor believes it is my spine either. I have tried to tell them that it seems as if something is between the vertebrae, but they clearly see it as a muscle issue, which it is not. I hope you find someone to help you. Then, leave us a message to let us know. I would LOVE to find some help.
Like Lorna, I’ve been having intermittant severe mid-back pain for months, and it has been extremely bad the last few days. It is spread across a broad area in the general area of the bra strap, but I can go braless for days without improvement, so I don’t think it is being caused by that. The pain is worse in the middle around the spinal column. I have mentioned it both at the chiropractor’s office and the rheum’s, and both seem to think it is a muscle issue unrelated to the RA, but I can’t shake the feeling that it is RA attacking my spine. I don’t know of any traumatic injury that would have caused it. Opinions, anyone?
I am still conflicted about this. I was diagnosed 2 years ago, but have been presenting with symptoms all of my life. I am 56 years old. I am not sure to what degree my body has broken. I am not sure what degree of benefit that I may expect. Why create more suffering, of a different kind, no doubt, but why? I am used to the pain and limitations that I have now. If I am not going to get a great degree of benefit from a trial drug, why do it. How do I know if my life expectancy will be shorter because of the disease. How about the complications of the treatment. That too can lower life expectancy due to the horrible side effects. I take plaquenil, methotrexate, prednisone. My doctor wants an answer this month about introducing biologics. After months and months of debate, I can’t decide.
Anna,
Like you I am 56 but was only diagnosed with RA one year ago. Although, inflammatory markers had been high for a few years prior to that without doctors really knowing what was going on. My Rheumatologist tried Mobic and something else prior to very same treatment that you are currently on but experienced side effects. I went in for my consult two weeks ago and he said the current treatment I am on isn’t working and that we have to try something else. Hence, the Depo Myadrol injections and Xeljanz and ceased taking Planquenil. I am disturbed after reading up on Xeljanz now however, as I have learned that it is a very dangerous drug to be on. After complaining about stomach aches and currently experiencing a sinus infection, I have decided to no longer take the Xeljanz.
I too am dealing with aches and pains and its limitations and doing ok. I also understand that it will get worse as time goes by if I don’t stay on medications. The side effects of these medications horrify me. I am better not reading the reviews at. Then again, it is better to be on the alert, to be prepared of side effects which can sometimes be very dangerous. My latest thought when I came out of my appointment was. ‘Darn, what heavy drugs does he want me to take this time and what are the side effects’? Also I would ask myself the same questions, ‘Why do it’?
I was just diagnosed with RA. Reading all of this is hurting my heart…… I don’t understand that there is no cure. Why only 20% get better and the treatments will soon not help?
Hi Jenn,
It is shocking the state of medicine (knowledge and treatment) with regard to this disease. But it is improving as more is learned each year – and we have seen and will see progress in our lifetimes. For the most part it has been very slow due to EXTREMELY poor funding of research for RA in the U.S. As we bring awareness through the new Rheumatoid Patient Foundation, that will also change.
I am not sure how long I have had RA. I know early treatment is suppose to help slow it down. I don’t see my dr. until Sept 11th. I don’t want to be disabled in 5 to 10 years. I don’t have much of a family to rely on for help. One site said insurance may not cover some of the medication. I guess I am rambling because I am scared.
Try to take one day at a time, Jenn. If your insurance doesnt cover the medicine you need, most of the drug companies have programs to help patients pay for the meds. Sorry you have to wait so long to see the dr. only a few more wks now – that is the hardest part about being treated “early” is finding a dr – so I hope you get some relief soon. Try not to be scared of things that might not ever even happen okay? I’ve been there..
I do appreciate the responses back. I am trying to stay positive. My brother thinks that I just need to follow dr.’s orders and also take fish oil.
Thank you
Hi Jenn, are you the one looking for a support group. I am in Elgin, I am also having a support group tonight at 7pm.
Di
Hi, yes I am! Could you send the information to my email please. I just spoke to my step mom who has it but didn’t tell us that she had it. She was encouraging to say the least.
Thanks,
Jenn
Jenn, are you saying your stepmom has RA and you didn’t know it? I’m sorry I’m confused what that means; does she live very far away?
I think you can email Diane using her link on the Local RA Support Groups page on the top menu or click here: https://www.rawarrior.com/rheumatoid-arthritis-support-groups/
I find it a bit disheartening that most RA sufferers who choose to go on medication fail to find relief. My question is why continue to be on toxic meds without seeing improvement? I was diagnosed last year and have chosen to use pain meds as needed and a very low dose prednisone. I also eat very healthy and exercise when I can. For me the worst part is the fatigue and depression. I prefer quality of life over quantity. I don’t want to spend what time i do have on this earth chasing down doctors and being a “guinea pig” to the latest drugs. To me, that would be worse than the disease itself.
Sorry if my comments offend anyone. I am merely stating how I see things given the information I have gathered. Everyone has to choose their own path.
Its taken me 40 years to be diagnosed! But thats not the worst, now getting treated is another hurdle. How do I get treated?
does climate have an effect on rheumatoid arthritis eg….
higher altitude, dry conditions, etc
I saw my internist yesterday and told her the rheum she sent me to was a jackass, and completely discounted my positive anti-CCP, pain, swelling and fatigue, because HIS lab results didn’t come back positive for RA factor and ANA.
She was astounded, and is going to set me up with another rheum (same old RA story), and she had me go back on the prednisone that Dr Rotten pulled me off. I stayed on the MTX, because I really think it’s helping some.
Meanwhile I continue to hurt. Last night I kept waking up with pain, had to take half an oxycodone every 3 hours just to get some sleep. Today I’m still pretty sore, but able to kind of function.
I wish there was a cure, or a treatment that worked long term, and more rheums that LISTEN to the patient and don’t go by lab tests alone. I’m seronegative, but I have a positive anti-CCP — I have RA. I need aggressive treatment.
I’m not getting it. And that makes me MAD.
I am an RN whose husband has RA and I have watched him suffer with this disease for the past 25 years. Years ago he took Plaquenil for a short period of time- but he suffered vision loss related to its use. He chose to go the route of not taking other disease altering drugs as he read what the potential side effects were and he didn’t want to destroy his liver and other organs on top of the joint destruction he had going on. He went to one Rheumy who told him to go home and read all the brochures and pick which one he wanted to take. She said “and when you chose one- you will keep taking it, even if you think you feel worse” (well duh- he reasoned what kind of fool do you take me for). She said you will keep taking it to the end- “whose end are we talking about here?” After review of the material he decided it was all poison, and didn’t go back to that “quack”.
I didn’t try to talk him into doing these therapies as in my 30 years of nursing I had met few patients with RA who stated- “those drugs really helped me”. After his diagnosis I made it a point when caring for a patient with RA to ask if they had tried disease altering drugs; then if they answered that they had indeed taken them I would ask if they felt it had improved their symptoms. Most of the time the answer was “yes” they had taken a disease altering drug, and “no” they really were no better- but often felt worse or had some new complication. But now there are many new biological meds that perhaps are a different story than what the last 20 years or so of RA treatment has accomplished (or not accomplished as it may be).
Our hearts go out to each of you as you walk this out. Our hope is that someone somewhere who loves humanity (and not the almighty dollar) will come up with something legit to end this suffering.
God strengthen each of you through this.
Thank you Kelly for this website to support others.
Dear Georgia,
Thank you so much for sharing these experiences. I wish every doctor who treats this disease would read your words.
Please also give my regards to your husband.
I too, have struggled with this very topic. 20 years ago, I asked my RA Doctor… what did people with this painful, debilitating disease do? His reply, ‘they died’ ! Nothing has worked for me either. ( bad side-effects or no improvement ) That same Dr., said 20% of all dx do not respond to protocol. You just fall in that group. I am going to try Orencia , again. However, I have a very good and trusted Pain Management Doctor. He has made my life much more comfortable . Thanks, Kelly ~ your wise words bring me much comfort too !
I do worry about whats happening by not treating RA but I give up on docs A couple years ago I was having bad back and knee pain finally found a Doc that listened he did two blood tests one to see if I had RA the second how bad luckily I didn’t have it very bad he said I had A flair gave me a shot I had to switch doc.The second doc said I don’t have RA so I have not been treated since the first and only shot my mom has RA that didn’t matter either…It hurts but i don’t have the money to throw down the drain soon I will have to see someone don’t know where to start or if i want to deal with another doctor my tmj is worse the ENT says its from the RA so he says the RA needs to be treated
My 36 year-old husband has recently been diagnosed with RA – more specifically, Psoriatic Arthritis. This is a very interesting topic/question! To treat RA with a cocktail of drugs or try natural treatment? After much research, we have chosen to try diet as a first “line of defense”…Inflammation is what causes the irreversible damage – so we will try to control the inflammation through diet. It’s been 1 month so far and my husband has noticed much improvement! He still has some morning stiffness and occasional mild pain, but has not had any major “flare-ups”.
So what is the diet? Not easy – that is for sure! This is not a scientific study…but it works for him. NO GLUTEN/WHEAT, NO DAIRY, NO CORN, TOMATOES, PEPPERS or EGGPLANT (THESE ARE CONSIDERED “NIGHTSHADE VEGGIES”). LIMITED/VERY LITTLE – CAFFINE, SUGAR, CARBS (SUCH AS WHITE RICE & POTATOES). NO ALCOHOL or TOBACCO!!
What does he eat? Meat – preferably poultry & fish, some red meat & pork. Lots of vegetables, fruit, berries, nuts and legumes, wild & brown rice & quinoa. He drinks lots of water and various tea. Dandelion root tea is a great substitute for coffee. He also takes a “joint health” vitamin, REPLENEX, made by Melaleuca. Also RAW APPLE-CIDER VINGAR, 1-3 TBLS per day (drank with water).
As it has already been stated, and I want to 2nd…Each person has to take their own journey. I just want to share our success with others – in hopes that it might help another. Keep in mind, it takes many weeks for all traces of some of these foods (Example: gluten), to leave your body. You would need to try any diet for an extended period of time, to see/feel true “results”.
I am newly diagnosed with ALL negative blood work, showing normal range in EVERYTHING. CRP fine, no inflammation. The only way I was diagnosed was a GP saw my hands. I agree, they are RA looking and have been for 10 years, but NO PAIN! Now this Rheumy I saw want so put me on Plaquenil. Low dose. She says I am in denial and am in pain??? I was wondering how your husband is doing now with a “Paleo” type diet? I am soooooo confused!
What do you say to an RA diagnosed friend who is insisting on treating her RA holistically even though what she is doing is clearly not working (I’m open to trying ANYTHING but when her joints are being severely damaged and she can’t understand how important it is to stop the damage right away – I don’t know how to approach her.
I enjoy your blog, I’m a former U.S. Marine SGT I only served my country for eight years I’m a gulf war vet no body cares inuding me anymore what a waste of time. I’m currently on Enbrel but must go off meds due to bad Obama affordable health care insurance. I have insurance but no health care. I went to pick up my meds today 12/26/2014 and they said it would be $700.00 a month For Enbrel so I said thanks and walked away. I have four does left that I will drop off at Walgreens tomorrow and press on without treatment. I was on 50mg of MTX a week, and enbrel but that’s out of the option as well. I may try just MTX but for now will go off all meds and cancel rheumatologist appointments. My boss told me modern medicine just prolongs the inevitable death and is a waste of time. Again thanks for your blog and and don’t take anything for granted see ya down the trail… I know and feel your pain… I worry more above loosing my house and disappointing my wife and kids then anything else.
I would like to quit the pills and the constant bloodwork too. It drives me nuts. But going back to excruciating pain and walking with a cane is not an option. My RA is very aggressive. I skipped my NSAIDS for a couple of days because my stomach was bothering me, just to give it a rest. I spent a day filling in for a position at work that required standing…thought I was going to die. I had forgotten how bad the pain could get…I’m still stiff and in pain on treatment but by comparison, I’m bordering on spry!! I won’t take an injection…can’t take needles and the bloodwork is bad enough. So I’ll take the stupid pills and I’ll go for the tests and the appointments and pray for remission. Best of luck to you all.
Hi. I was on Plaquenil for about 7 years. Rheumatologists weren’t sure if I had the disease as my blood tests were negative. Finally one got me to have a MRI of my hand. Success, in a way. Yes I had moderate to severe Rheumatoid. First step was Methotrexate for 8 months – with no effect. Then Humira for 4 months – with no effect. Now Enbrel 50mg injection once a week. I’m carrying fluid and feeling yuk. I would rather go drug free as the drugs are adding toxins without any results so I may as well improve my health by removing them.