Weaning off of prednisone & pain management

They said from 10 to 7.5 to 5 to possibly 4, 3, 2, etc. They want to get me on Kevzara but my liver enzymes were really high; one is now within range and the other is only 12 points above the scale.

I hope Kevzara works for you.

It would be best to let your doctor decide when it is okay to start Kevzara. However, there are some allowances made for elevated liver enzymes before starting Kevzara.

Just for informational purposes:

"Treatment initiation" with KEVZARA is not recommended in patients with or who have alanine transaminase (ALT) or aspartate aminotransferase (AST) above 1.5 times the upper limit of normal (ULN).

On average, normal ranges are:
Alanine transaminase (ALT): 0 to 45 IU/L.
Aspartate transaminase (AST): 0 to 35 IU/L.

Hello! I've been gaining so much information and insight from this group and I'm so grateful. I haven't posted much and I'll try to keep this from being too long. I'd like to know if anyone has been able to get off steroids without needing biologics or other prescriptions in less than a year.

My nightmare started overnight in November 2023 with debilitating pain and stiffness. My GP suspected PMR and prescribed 20MG of prednisone. It helped for a couple days, then I got worse so assumption was it couldn't be PMR. Saw a Rheumatologist 12/15/23. He said I was likely "prednisone resistant", he diagnosed PMR, and started me on 8MG of Medrol. My labs (ESR and CRP) were never very high, even when I could barely walk. The 8MG Medrol helped for 2 days and then I was right back to debilitating pain and stiffness. My dose was increased to 48MG and I tapered every 2 days until I got to 8MG. Rheumy wanted me on 4MG after 2 months if possible and said that I would need it for a minimum of a year, probably longer. For the most part, I was doing pretty well on 8MG and started to taper in mid Feb. Unsuccessfully tapered from 8mg to 6mg. Went back up to 8mg, then reduced to 7,6,5 each week. I've been on 4MG for 5 days now - Woohoo!

I had my follow up with my rheumy yesterday and asked if I could continue to taper and see if I could get completely off the steroids in the next month or two. He said it's okay for me to try but, if successful, he would assume that I didn't have PMR since most patients need treatment for 3-4 years. Based on reading everyone's stories in this group, I'm 99.9% certain I have PMR. Really curious if anyone believes it's possible to have PMR and NOT need steroids or biologics long term.

I've spent the better part of every day doing/trying so many things to get my life back. Some things I don't believe helped much beyond the service itself (sauna, lymphatic drainage and massages). Other things may have/seem to have helped a lot. Those include Aqua/Hydro Therapy which led to chair pilates, longer walks, indoor biking and now light weight training. I also went to a functional medical clinic and had extensive testing done. It has been crazy expensive but I'd heard so many great success stories, that I decided to make it work.
Among other things, I was found to have a high need for antioxidants and inflammation support. I started taking a crazy amount of supplements and hormones about 6 weeks ago. My next round of testing will be in June to recheck. It will be interesting to compare the new results and to see where my PMR symptoms and steroids are. I'll definitely report back!

I hate to go back too, but I try to remind myself it takes less time to increase the dose, get stable, then reduce again more slowly than it will to push too fast and have a potentially bigger flare that may require a higher dose and take longer to calm down…

Can you check with your doctor? The situation you just described happens frequently to my father (he’s the one with PMR) ever since he got to 7.5 my. If he has a flare, usually his rheumatologist recommends to increase the dose for a minimum of two weeks before reducing it again.

You might also want to consider or talk to your doctor about tapering more slowly than 1 mg at a time. Once my dad go to 7.5 mg, he had to reduce by 1/2 a mg at a time because the dose is getting lower.

I don’t know if you’d want to do this or if it would work for you, but his rheumatologist uses his symptoms and labs as a guide. He gets tested about every two weeks, sometimes more if he’s directed to stay on the dose longer. Often we’ve caught a flare early this way, before he has the debilitating pain. It is kind of a pain (literally and figuratively) to go for blood draws that often.

I’m sorry the pain picked up again and hope it calms back down quickly.

In February, I started alternating between 15 and 12.5 mg daily. On March 1, I went to 12.5 only. At first I was having no issues. Then a couple of days ago I started getting PMR aches starting in the evening. Now I'm waking up with them, upper body and neck. I'm going to stick it out and see what happens.

Try Tylenol if you are allowed to take it. If not I would consider contacting your doctor soon. I had 3 days of excruciating pain but Advil helped, but I was told to never take it per my doctor.

Hi, The way these posts come through, I didn't read your initial post prior to responding....so sorry. I've seen two different PA's in my Rheumatology group and they both handle things differently. My first PA believed in weaning slowly and taking into consideration blood work #'s and how I felt. My new one believes in faster weaning and only considers blood work results. I love my initial PA but she took a 3 months leave of absence and is due to return soon, so I will be switching back to her.

It seems like you have to do so much just to relieve your symptoms, but if you don't mind the cost that is great and the perfect way to go! I like treating things holistically myself but can't afford it right now. Let us know how you make out in June. Hope you have great results!

I'm happy to hear that your initial PA is returning soon. Having a good relationship and trusting your healthcare provider is so important. I hope your pain is well managed and that you're able to taper slowly without a major flare up.

Thanks so much for your good thoughts. Wishing you and everyone on this journey better days ahead!

I am new to this support group but not PMR. Back in the summer of 2022 my doctor gave me 10 MG of pravastatin. The pains in my legs started and continued after I stopped the statin. It took 3 months of suffering before I was diagnosed with PMR. My legs were scanned and I was sent for 3 weeks of physical therapy. Finally, on a trip to the rheumatologist with my blood work results in hand, I got some help. My blood test results were normal but the WBC and a few other things were elevated. More blood work identified the problem. I started out on 15MG of prednisone and gradually the dosage was decreased over many months. Tried to get off of it at 2 MG a day after I found out that my cholesterol jumped from 212 to 243. Besides that, it affects the osteoporosis that I am already being treated for. I was so miserable off the drug that I am now back on 5MG and hoping to drop 1MG a month. I am so over dealing with this and wish they had just left me alone. I could have brought the cholesterol down on my own. Has anyone else had a statin drug trigger the PMR? It is nice to know that I am not the only suffering with this.

Welcome @jen73, I've had 2 occurrences of PMR but it is fortunately now in remission for the second time and I'm hoping it stays that way. I did find some information on your question that you may find interesting if not helpful.

--- If something looks like an apple, is it necessarily an apple? – reflections on so-called “statin-induced polymyalgia rheumatica”: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6710838/.

I don't think any of us like being on prednisone but for most of us it is the magic pill that make the symptoms go away. Have you tried any natural ways to lower your cholesterol numbers?