In a recent post at Daily Stength , the question, “Do you think DMARDS are worth the risks?” stirred up many emotions and responses. I have decided to pick out some of the posts and share them with all of you. Here is the original question:
I know many of you here on this message board are taking DMARDS. I would like to know how many of you have had mild to severe side effects, do you feel comfortable and safe taking the DMARDS and suppressing your immune systems? Also how long you have been on them and have had a positive influence in your quality of life?
Although most agreed that DMARDS are worth the risks, I had to share my point of view. Here is my reply to the question, and some of the responses that I feel are important to share. If you are trying to decide for yourself what you should do, I highly recommend joining a support group such as Daily Strength to help you weigh out your choices. And although Daily Strength is available to the public, I have excluded names to help people keep their anonymity.
Reply #10 (me):
I’ll go out on a limb here and be the odd one out…..
I was on DMARDS (methotrexate), prednisone and sulfasalazine. They did work but I found that over time my energy and strength level was going down. I also had to increase my mtx dosage over time, one of the reasons my energy level was probably going with it. I was also worried about long term effects on my intestines which are a big part of your immune system. And being at a child-bearing age I felt uncomfortable taking methotrexate in case the unpredictable happened that I got pregnant, as well as I was worried about residual damage left in my body for any future pregnancy I might have.
I think that if you don’t have any other options, DMARDS are definitely worth it…..but I have found other options that have worked really well for me and I believe I’m improving my health. I have hardly any flares any more.
Fibrin which is a big factor in RA and inflammation is what I am controlling by taking Serracor-NK. My lab results have improved exponentially and I have less inflammation now than when I was on the three drugs…mtx, prednisone and sulfasalazine. Serracor also reduces cholesterol. If you look up RA, it is often associated with high cholesterol. Prednisone raises your cholesterol. Cholesterol medications have inadvertently in clinical studies, improved people with arthritis. Serracor uses enzymes to do this. The foods we eat today because they are modified, don’t have the amount of enzymes and nutrition they used to. We would have to eat home grown vegetables all day to get the amount of enzymes Serracor will give you.
I’m also on Low Dose Naltrexone which also improves my immune system by increasing endorphins and decreasing cytokines. LDN helps fight cancer, so again I feel good about this decision. It’s been around for years and there’s many many people online who are on LDN. You can find oodles of youtube videos and stories.
I often feel like people get upset at me for talking about alternative therapies. I’ve been on this site for a long while and asked all the same questions about DMARDs and yes they do work. Please guys, don’t get upset at me for talking about alternative therapies. I do think they are stopping and/or slowing down RA and I think they are a much better choice if they work for you.
I’m not in any way saying that taking DMARDS is a bad decision. All I’m doing is explaining what my experience has been. It took over a year and 1/2 to find the options that I’m on now, so if people are questioning their options I feel bad if I don’t speak up and let them know what I have found.
Sarah, you’re the shining example of one who succeeded with non-standard drug therapies. I think it’s wonderful that you post an “alternative” view point, and I, for one, appreciate you doing so.
I think everyone needs to weigh all the factors, including cost, the amount of time they’re willing to spend waiting for a drug, what the perceived benefits will be and the risk of side effects. Some have posted about lowered expectations for biologics, because of drug companies or rheumatologists. It’s probably all true, which makes it all the more imperative that everyone get as much information as possible. Doctors aren’t likely to talk about minocycline or LDN, or Serracor-NK, unless you go to someone who specializes, so it’s good to have your input here.
The studies will tell you that early aggressive treatment will postpone if not stop the joint damage. Conservative treatment with only steroids, NSAIDs or other alternative treatments will result in deformity and significantly shorter lifespan. Even if you don’t hurt your disease is still active. Your tests can be “normal” and your disease can still be active. Without treatment that stops the inflammatory response (not just the pain) on the immune system level your joints are being damaged.
They have proven this in numerous studies which is why any Rhuemy’s in the know will push aggressive treatment. Conventional treatment was resulting in severe deformity and a high morbidity rate. Don’t kid yourself.
I think alternative treatments are great but should be used in conjunction with DMARDS or Biologics… not instead of. Cover all your bases. That being said, I would not take MTX again. The side effects did not equal the benefit in my case… but I still tried it to find that out. The list of things that RA itself can do to you is just as scary as most the drug side effects.
I have found it interesting to read all of your comments regarding your approach to treating your RA. I have to say I am going to be 62 years old and I have never heard of any one dying from RA – but I have heard of people dying from drug interactions or their long term effects. Years ago people seemed to learn to live with RA using the drugs they used back then. I am concerned over the long term effects of the DMARDS to be honest.
I too, am one of the people that takes a more conservative approach to medications.
I have had RA for approx. 15 years. I take NSAIDs (tried all the standard ones) and then settled down with Relafen. I also take a DMARD – Plaquenil. It is my understanding that it too is one of the more conservative DMARDs. I may be wrong but the main side effect is that it can affect your eyes. I have been on Plaquenil for 15 years. I get my eyes checked every 6 months, and my Ophthalmologist told me he has not seen any patient on Plaquenil that ever had any problems.
I personally will not take Biologics because of the possible side effects. I can live with pain, I cannot live with some of the potential side effects.
In the end, I feel medication choices are a very personal decision. Everybody is different, their RA is different, and their medication tolerances and reactions are different.
I, too, appreciate Sarah’s posting on alternative therapies.
It is great that we can all post our thoughts and suggestions. Everyone is entitled to their opinions.
Just remember that just because it works (or doesn’t) for one person, does not mean that you will have the same effect.
All you can do is research the possibilities, listen to the advice of folks here, and work with your doctor on what is best for You.
Reply #17 (me):
Alternative treatments cannot be grouped into one lump sum. They are not all the same, nor do they work all the same, nor do they work the same in all people.
Taking these alternative treatments is an experiment, plain and simple. It may reverse my disease, it may leave me deformed, all I know is that long term, these treatments most likely won’t cause other autoimmune diseases and will most likely improve my health overall.
I’ve chosen to take the risk. In the beginning it was almost impossible for me to get other people to support MY decision to experiment. In fact, most people told me it was a terrible idea. I was on my own for the most part…no support. Two other people jumped on the band wagon on this support group and decided what I was doing was a good idea and that they wanted to try LDN.
Those two went into remission and I didn’t, but I feel WAY better than I used to. They left the support group so I am no longer able to talk with them.
But I’m not complaining too much because my life has changed completely. I can wear high heels again, exercise using weight machines, and live each day almost 99% pain free. NO I can’t do a hand stand because that would be painful, but compared to how I used to be….I am a completely new person. It used to hurt just to have something brush across my toes. I had ganglion cysts on hands and elbows which went away with the Serracor-NK. I always had pleurisy, rashes on my skin, my voice was hoarse, I couldn’t open my jaw…my vision was blurry and my joints made it nearly impossible to do anything. Even sitting, my husband would have to help me get up and down from the couch. I know you all know what I’m talking about.
So even though I know there’s no long term case studies on RA and possible damage with the alternative treatments I have chosen, I feel great about my decision and I’ll continue to share my choices just in case someone out there is anything like me. I personally have never trusted the medical system completely, nor have I trusted doctors completely, and never has a white coat made me feel at ease. I prefer being the one in control, deciding when I should have blood tests, and when I should change medications. I completely understand that I’m the odd one out but to not share my experience makes me feel like I’m not being genuine to myself and not helping someone who might want to hear about another possibility.
I do applaud anyone who stands by their choices. I have always felt it should be your choice, make the doctor work for you, not the other way around.
I must be one of the people with the longest experience with the disease in the site – 10 years on methx. 4 on Kineret.
My experience is that they work extremely well. In fact, they restored my life and eliminated pain,deformities, exhaustion suffering.
BUT, and this is a big BUT – my liver is almost destroyed because of the Methx. I have been on it for 10 years, and steadily getting worse. My ALT was over 300 in Feb. so I went off for 7 weeks and got it down to 67 – only 17 above high normal. Great success, I guess. I went back on, because of pain and exhaustion – it is back up to 200, and my liver scan this week shows fatty liver and the beginnings of cirrohis. From the methx. So I have eliminated everything else that clears through the liver – pain killers, AD’s, Vitamins A D, Omega oils, antihistamines and I have been a vegetarian for almost 40 years. No chemicals, no fats. I am dying to see some long term studies of RA people on methx. How damaging is it? Am I an exception? I am also losing another 25 lbs, to try and get the fat out. Taking milk thistle which is supposed to clear the liver.
Kineret is my biologic and it is THE BEST! Except it is a hassle – daily needles kept refrigerated. I went on this over the other biologics because all the others clear through the liver. Before I started 4 years ago, I had kidney damage – 1st stage failure. The last 6 months, I have been normal. So not only has it not hurt it, somehow my kidneys have regenerated, which I was told wasn’t possible. Try Kineret, watch out for the Methx. On the other hand prednisone is the worst drug in the universe, the side effects are endless and all it does is mask the pain, while the disease progresses.
I think the issue is quality of life and independence versus pain, degeneration and deformities. I choose quality of life, although maybe I will change my mind on my death bed when my liver is failing. LOL. Even during my foot reconstruction I had to go off my meds for 2 weeks and the pain and flares were so bad, it was worse than the surgery. To think I lived like that for years. I couldn’t think, read, or do anything the pain was so bad. I can’t take pain killers either, they give me migraines. (Were the nurses ever upset with my projectile vomiting for 3 hours cause they forced me to take Percocet on an empty stomach for “pain management” after I told them NO! after surgery) No pain killers – deal with the disease. I just hope you have a healthy liver.
If you are severe, take the meds till you find what works for you, and don’t worry about the side effects – RA has worse side effects, in my opinion. I have a cousin who has had RA for 55 years. Put on prednisone at age 3. It dwarfed her, caused bone necrosis of the vertebrae in her neck (read death), and she is constantly in pain. Two years ago she almost died of an RA nodule on her throat joints caratynoid or something. Actually she did die – Hypoxia and heart attack, but she was in the hospital and they revived her – she has a permanent trache. I told her too go on methx. Her rheumie said, “I never thought of it!” She feels better than in years. However, I wouldn’t want her life for anything. 3 hips replacements x 2, 2 knee replacement x2, she can’t use her hands, muscle wasting and in a wheelchair. She can’t even feed herself. That is what RA does long term. It mostly doesn’t kill, but it totally destroys ever joint in your body – even in your throat. I am totally in favor of all aggressive treatment from day 1 – from before the sed rates show up high (I was sed neg for years!).
It is your choice, and the severity and pain should influence your choice. But do search it out, and go for the best treatment you can get.
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