How do I handle the ups and downs of PMR? So many questions.

I took weekly doses for 7 weeks . Also took folic acid as directed. After week 3 I was feeling progressively worse, I had a feeling of swelling in the liver, as though it was pressing on my ribcage. I had severe brain fog, couldn't even focus on TV. The fatigue was ridiculous, couldn't move far from the bed. My PMR pain increased from lack of movement and I had to increase Prednisone to cope. After the 7th dose I gave up. Within 2 weeks I was functioning relatively normally again. My Rheumatologist denied that it had anything to do with the Methotrexate and said I was having a PMR flare. I have had several PMR flares as I taper and I knew it was the Methotrexate.

What MTX toxicity did you experience? How long were you on it for? I gander it did not bode well for you but it sounds like you are doing well otherwise.
Best to you.

Hello,
Thankyou for your reply. It’s extremely helpful. I am sorry your Rhuematologist fobbed it off as a flare. The fact you felt worse on MTX and then better once off is proof. Had liver function tests been done? If not I am surprised that at least your lab work was not checked given MTX potential liver toxicity. The last thing any of us want is to feel worse than we already do, due to side effects from another medication. I am still seeking expert advice and research from patients who had a successful course of MTX.
Thank you so much!

Welcome to the club none of us wanted to join! I am 7 months in and can say that I am on the road to wellness. I've been able to taper from 20mg of Prednisone to 8 by doing .5mg every 2 weeks or so. I've had a few stumbles and had to go back up .5 when the pain got too bad. All in all, I feel better and better daily with diet and exercise the main healing factors.

Trying to keep a positive outlook helps!

The Methotrexate helped me initially. I was at 8 mg prednisone, couldn't go lower, and the MTX made me feel like I no longer had PMR. I tapered down to 5 mg fairly easily. My doctor was pleased with my progress, told me to stay on 5 mg for 6 months. As time went on PMR symptoms increased. I had to strictly limit activity to keep the pain down. After 5 months I had a bad PMR flare. My liver enzymes also stayed elevated while I was on MTX and I had to get off it. I was glad because I also never felt quite right while on it, just kind of foggy. 6 mg is the highest I've had to go since I took MTX so I think it helped long term. A mixed report from me!

What determined your taper or increase amount?
Did the dr tell you when or did you do so on your own?
I see many people talking about changing dosage. I see my dr every 6 weeks with suggested tapering times and amounts. Is it ok to not follow their plan due to how my body feels? I was supposed to go from 6 to 5 today. Didn’t yet because I’m not sure my body is ready. Worry in a sense about not following Dr suggestions.

My approach to Prednisone is 1) worth the side effects 2) taper at your own pace.

My PCP started me on a pack of 6 days after a cortisone shot didn't help me. When the pain came back almost instantly, he gave me another 6 day dose.

A few days after the last pill, I went to his office in agony. The Devil's Tic Tac works in alleviating pain, and we all know that PMR pain is excruciating. I've never had chronic pain before, so it was a learning curve.

Blood tests showed inflammation markers and my PCP finally established that I had PMR. I had to wait 3 months to see a Rheumatologist.

Since December, 2023, I've tapered from 20mg to 8mg. I hope to continue down to ZERO.

I consult my doctors, but ultimately, you ARE in control of your taper. There is no reason to hurt when relief is available. OTC meds can't touch PMR pain in my case.

If I can't follow the tapering schedule given to me by my doctor I call him and his assistant calls me back that day with instructions. I don't just "wing it" without telling him. He did appear aggravated at the beginning when I had my visit and hadn't tapered as much as he thought I should. I held my ground, stayed calm and tried to be very specific about what symptoms were preventing me from going lower. One time he told me to call him if I had a flare-up and he would order lab tests for inflammation. That happened and my numbers were up. He started to believe me more after that. Some doctors seem to think you should be over this in a year. I have been on prednisone for 3 years, at 5.5 mg right now. Your taper seems fast to me but do your best to work with your doctor, not follow what someone on a support group says.

I was given methotrexate for my SLE/RA. I was on it for four months. I’m unable to take prednisone due to kidney issues. I felt like the methotrexate was helping some of my joint pain, but my new rheumatologist took me off of it and said the same thing about the toxicity. I still don’t understand exactly what he meant by that.

Thank you for sharing. I realise management of PMR will play out differently to varying degrees in all of us.