Enbrel. Now Humira. Loads of Prednisone daily.

Hi . My heart goes out to you. It can be so frustrating to go through the whole trial-and-error process of finding a medication that helps. You are wise to wean off the prednisone, but you really need to follow your doctor's recommendations when it comes to a schedule for reducing the dose. It has to be done very slowly in order to prevent the rebound effect that is common with steroids. Would you consider trying the 5 mg dose to see how it effects you just until you find an effective biologic? Your doctor seems to be doing everything right. It can take a lot of patience to find an effective medication. What helps one person does not always help another. Do you feel confident in your doctor's diagnosis? If the pain is still limited to your hands and wrists, you might want to request x-rays of your neck and spine to determine whether compression on the nerves is a factor. If it is, you can ask for a referral to a neurologist who specializes in the spine. No RA medication out there will help if the pain has a different source. I hope this helps and that you get some relief. Best wishes. - Lori (Team Member)

Oh Carolann2016, I do empathize with what your are going through! I’ve been on multiple meds and rely on prednisone also. And I’ve gained a lot of weight. I used to see a rheumatologist and his PA. The PA would start appointments with “We’ve got to get you off steroids.” But it wasn’t unusual after her exam that I left on the same or a higher dose and a plan to try another new RA med. Since starting my latest biologic, I’ve been able to get down to 6mg prednisone daily. As Lori said, it is important to work with your doctor on a tapering schedule. That looks different for each individual. For me it’s meant decreasing 1mg every 4-6 weeks. My last decrease was quite difficult; 2-3 weeks of increased muscular pain, severe fatigue and emotionality. I hold off on any decreases if I’m going to be more active, under stress or traveling. My goal is 5mg by July 4 🤞🏻

On the surface, your doctor’s choices look similar to what many of us here have experienced. I did seek out a second opinion, which helped us understand my disease better. The first drug the consultant recommended didn’t help. Both docs agreed it would be good to trial Rituxan once Covid risk was down. It’s what I’m on now and is helping some.

I Hope for you to find the right treatment and successfully wean off those miraculous, demonic steroids, Jo (moderator)

I was on heavy prednisone for two years and I gained almost 100 lbs. It almost destroyed my body and it took 8 years to get it back to some semblance of "normal." I don't tell you that to discourage you, but to let you know that there is life after prednisone. They eventually found the right medicine for me and it has now worked for almost a decade. It is a long haul and it makes it especially bad that the only tried and true method to find the right meds is trial and error, but it can eventually work like it did in my case. Just hang in there, know you are not alone, and let us know if there's anything we can do. Keep on keepin' on, DPM

Hi . My wife, Kelly Mack ( a contributor here), was diagnosed at two and has had juvenile RA for over 40 years. she has been on low-dose prednisone for many years (5 mg a day, with a prescription for one mg pills as needed for flares) with no ill effects. Of course, this is anecdotal and every case is different. That said, I also want to share some research. This article notes that "Low doses of prednisone are safe and effective in the management of RA. Yet, some clinicians continue to manage their RA patients with glucocorticoid doses that are too high or avoid them altogether: https://pubmed.ncbi.nlm.nih.gov/12386945/. The authors argue that "One should not deem it a failure to hold the patient on the lowest effective dose of prednisone." In addition, this literature review of studies on use of low-dose prednisone found "Safety data from recent randomised controlled clinical trials of low dose glucocorticoid treatment in RA suggest that adverse effects associated with this drug are modest, and often not statistically different from those of placebo:" https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1798053/. Note: I could cite numerous articles with similar findings, but I could also cite studies that recommend the lowest possible dose for the shortest possible time. All of this indicates that individual circumstance may be the best guide. I know that in Kelly's case the severity of her RA, coupled with no known adverse prednisone effects make the daily low-dose worth it, however, for others who have RA controlled without or have adverse effects it may not be. You may find that as you get down to a lower dose you tolerate it better, but you also may not. I realize that this is a little bit of an unsatisfying conclusion, but unfortunately, like many aspects of RA treatment some trial and error may be involved.
I can also tell you that, like Daniel, Kelly went many years without effective treatment, but a few years ago she started a new biologic that brought her inflammation numbers into the normal range for the first time. There is hope and one never knows when the lightening might strike. Wishing you the best. Richard (RheumatoidArthritis.net Team)