Rheumatoid Arthritis (RA) - Introduce yourself and meet others

@julieschiwal1972, Just a thought but have you made any lifestyle changes like eating foods that help fight inflammation? Here's a recent article that may be helpful if you are not already doing it.

Foods that fight inflammation - Doctors are learning that one of the best ways to reduce inflammation lies not in the medicine cabinet, but in the refrigerator. By following an anti-inflammatory diet you can fight off inflammation for good.
-- https://www.health.harvard.edu/staying-healthy/foods-that-fight-inflammation

If you need prednisone, then I don't think you have great control. I would think you need to be on a biologic. Prednisone will make your tissues paper thin, cause osteoporosis, etc.

Be careful with prednisone. I was on it along with methotrexate for psoriatic arthritis and ended up with osteoporosis. That is no fun, broke foot, ankle, elbow and back all in less than five months. Because of your age you might want to see about moving on to something else, as it doesn't seem that your RA is in control.

Julie,

I haven't had side effects from medication in 10 years. I did have fatigue, but my rheumatologist offered a stimulant, which I declined as it just masks fatigue. Then she offered a sleep aid, and I selected Lunesta, which has been very helpful to me. The rheum added in prednisone for an entire year in addition to my methotrexate of 20 mg. I now realize this was a poor choice. She had me on prednisone again for another 6 months. Prednisone is not a good drug because of the side effects of making your tissues paper thin, osteoporosis (I'm osteopenic right now), etc. I will not take it anymore. She should have put me on a biologic. Hindsight. It's a learning curve for us. You'll be on methotrexate for awhile. I'm on a low dose injection because my liver tests went up 2.5 and 3x the norm at one time. I think the injection of methotrexate is best as you get an accurate amount of drug, and it avoids the first pass on the liver (easier on the liver). Try not to go to far into the future with RA as we don't know what medications will come out or new findings that will help us. RA didn't affect my hands until the last 3 years. I don't have disfigured hands, but I notice some changes. My xrays show changes. My feet were first affected, but they don't really bother me now. Thank God. We really have to learn as much as we can to help ourselves. I am now at the point where I'm having a baseline echocardiogram, so that I'm on top of my cardiovascular health. My pulmonologist had me to do a diffusion capacity test for my lungs every 6 months to make sure the methotrexate wasn't causing any damage as well as a chest x-ray once a year. My rheumatologist told me she thought that was overkill, however, if I had damage, is it overkill then? I've had several rheumatologists, but I believe the one I have now is the best. She actually doesn't think that all biologics are the same! Of course they're not. She's concerned about safety. First time I've ever heard of that. Anyway, if I can be of help, feel free to private message me. It helps if you know someone to help guide you. One day at a time.

Arla

Thank you! I will read that tonight!

I am tapering off the Prednisone quickly...will be done by the end of this month. I'm happy about that. Will have my first follow up labs on Oct 9th so will see if the Methotrexate is causing any issues with my Liver. I feel like I am in the "baby stages". 🙂 Aria do you mind me asking how long ago was your diagnosis? It sounds like you are really advocating for yourself. I plan to do the same as much as possible.

when i had been on methotrexate, i had all 3 liver enzymes rise very high. This drug is an old chemotherapy drug used for cancer. Don't taper foo too fast on the predsinone, since your adrenal glands may have a problem trying to come back. these glands provide the body with natural cortisone. Adrenal glands can be supresse when on prednisone too rapidly........kozlo52

Hi,
Being a medical nightmare my entire life, I do not know why I thought senior years would be different. I am 61 years old and refuse to give up the fight. I live in an area that has mediocre medical care at best but moving is out of the question and traveling even an hour to the nearest physician is difficult. So we do what we must do.
To date, I have confirmed diagnoses of osteoporosis, systemic sclerosis, RA, severe COPD with severe Asthma, fibromyalgia, stage 3 kidney disease, gastroparesis, and Hashimoto disease. I also have latent TB. Methotrexate helped with the RA but worsened my lungs so I am now on 20 mg leflunomide 200 mg Plaquenil, and 5mg prednisone. I have degeneration from the C2 vertebrae to the L5 vertebrae. The inflammation is finally starting to reverse as of my last labs. We attempted to do a prednisone wean but the pain worsened as well as my lung function. I have to take ergocalciferol at 50,000 units weekly for the osteoporosis but a whole lot of other drugs to combat all the multi-diagnosis. I am on a strict diet due to allergies. With the prednisone and all the inhalers for my lungs without being able to be mobile, weight is an issue.
To add insult to injury it took 6 years, 10 doctors, and 10,000 dollars in tests before I got a diagnosis so everything advanced. The systemic sclerosis has affected the heart, lungs, and kidneys and prognosis is not the best but I have already lived way past the projected life span they gave me. The biggest thing to take from all of this is know your body. Advocate for yourself and do your research. Make sure your medical team talks to each other and coordinates your care. If they do not coordinate care then take it upon yourself to keep meticulous records, copies of each medical record, tests, scans, and medications. Keep a journal of symptoms, and a list of questions you want answers too. When you get answers record them and record anything told to you at each appointment. This will enable you to articulate to each doctor what care you are receiving, what is working and what isn’t.

Hello Julie, I agree with @fighter that needing prednisone is an indicator that the inflammation is not well controlled. And with @kozlo52 that tapers must be extremely slow to avoid complications.

In answer to your question about treatment changes being common, I can tell you "Yes!" Please don't be frightened by this path - medicine and science continue to advance, and the understanding of disease causes and processes improve, leading to better targeted treatments. Diseases and our bodies' responses to them change over time. Also our responses to medications can change. And as you get older, some drugs are no longer appropriate as the body's ability to metabolize them can decrease.

My husband, daughter, brother & a close friend are all using (different) biologics for their medical issues, and carefully chosen ones are definitely effective and give better control than many drugs, often with fewer side effects. Perhaps if the prednisone taper increases your symptoms, or your liver enzymes increased from the methotrexate, it is time to talk about alternatives.

What you will learn by reading here is that your best course of action is to be your own best advocate. Learn everything you can from informed sources like Mayo and other teaching/research institutions. Ignore miracle cures and instant fixes. Always make a list of questions for your docs, and get answers you can understand.

Come back and ask when you have questions, remembering that we can each describe our own journey, but not give medical advice.
Sue

Another very important thing you will need to do if you go on biologics is to check with your pharmacist and have them check all your medications to make sure they can be taken with your biologic, many combinations can be deadly, especially prednisone. I found out that is deadly combination with Remicade. You also need to check with pharmacist anytime you are put on new medication. It is a double check in case your md misses it (they make mistakes to). I just try to do it when pharmacy isn't busy as it can take time sometimes but is well worth it. Better safe than sorry.