Tapering angst

Hi @adia, Sorry to hear you are struggling with the PMR and tapering. I've only used prednisone for my two times with PMR but there are others who have mentioned low dose naltrexone, methotrexate and other alternatives to prednisone in another discussion here:

--- PMR: Are there treatment alternatives to Prednisone?: https://connect.mayoclinic.org/discussion/alternatives-to-prednisone/.

One thing that I noticed my second time around with PMR is I had to not over do it when exercising or I would pay for it the next day and the PMR symptoms would get a little worse. I would think the swimming and physical therapy would be good for the PMR as long as it wasn't an intense workout.

Have you modified your diet any to reduce foods that increase inflammation?

Thank you for your input. I was a sugarholic my whole life. The hardest addiction to get over for me has been sugar. I gave up nicotine, which was no walk in the park either.
Yes, I have gotten down to 50-70 total carbs per day and no more sodas. I am on a pseudo keto diet which I am suspicious of, but I know that some of the diet has been beneficial.

Adia, Like you I have had tapering problems, though I have had PMR longer, over 2 years. Below 8 mg prednisone I kept having flare-ups. I think my doctor thought that I was just a wimp, so to prove to him and myself that that was not the case I followed the taper to 6.5 mg and not only was I in a lot of pain but my ESR spiked. Like you I did not want to take methotrexate due to all the listed side effects but I finally agreed to take it 3 months ago. I have dropped from 8 to 5 mgs prednisone and pain is not an issue. Sometimes I feel that I do not have the disease any more. The methotrexate side affects were horrible for about 3 weeks: nausea, diarrhea, headaches, fatigue, etc. Then they let up and all I really have is fatigue and occasional bouts of pain, but more like what I had before I got the disease. I see the doctor next week and I hope he runs more labs with liver tests to see how my body is tolerating the methotrexate. What worked for me with exercise has been to back off from what I did before but keep at it: biking and uphill hikes, just not as far or as much elevation gain.

I so appreciate your response. I do hope you stay well and get off prednisone without too much trouble.
I am hoping the option on Naltrexone will work for me if it comes to that.
Again, thank you.

Tapering failures are very common, almost the norm. I've been on prednisone for 2.5 years and down to 3mg. Failed once getting from 4mg to 3, then failed twice trying to get to 2mg. So, I'm back at 3mg and feeling mostly ok. Looking forward to trying Kevzara if I can.

As an aside, the book An Elegant Defense is an excellent non-fiction narrative about the immune system and our current knowledge of it.

I’m sorry this is happening. It’s so frustrating to have what sounds like a flare after making such steady progress. My take is it’s not anything you did wrong…it’s the nature of PMR (and many other chronic pain conditions). It sounds like you may have had a much smoother taper than my dad has had. It’s been a very bumpy road.

And for what it’s worth, from what I’ve observed, it seems that once someone gets below 10 mg prednisone, things can get pretty dicey. My dad is the one who had PMR, and he’s Definitely had to bump up his prednisone dose MULTIPLE times. I’m not sure if that’s what you mean about “tapering more than once”?

My dad’s rheumatologist explained that once the prednisone dose gets so low, you have to start reducing by fewer milligrams because if you reduced by the same increments, you’d be reducing by a larger and larger proportion of the total dose.

The same thing that seems to be happening to you also happened to my dad. When he got to 10 mg and then moved to 6.5 mg, he has a flare and spike in his labs. The numbers weren’t so had, but his rheum has him testing every 2 or so weeks—we don’t make a decision on whether or not to taper until after we have labs and consider his symptoms, and after much experimentation, we’ve realized this helps minimize the impact of flares.

I think he went back up to 10 mg until he was stable. Then, he alternated 10 and 7.5 mg. Then 7.5 mg, then alternating 7.5 mg and 6.25 mg, and then to 6.25 mg daily where he is now. (The weird numbers are in part because of the demonizations of tablets we have at home.)

Sorry if I’m rambling…

For your other questions, my dad has been taking LDN (low dose naltrexone) since a few months into his diagnosis. I proposed it because I take LDN for chronic pain conditions, and it helps me most with fatigue. My dad gets severe fatigue from the PMR, and it still was persistent even with reduced pain and inflammatory markers within normal range. It seems to help him, but we can’t be certain how much it’s impacting his LDN.

I don’t know that we’d use it to replace prednisone or a dmard like methotrexate. In my situation, I have a different inflammatory arthritis and central sensitivity syndrome. We hoped the LDN would improve my pain and pain sensitivity, in addition to the fatigue but I don’t really feel it’s has an impact on my pain.

I’d be afraid of methotrexate too, but it sounds effective from what others have said. Prednisone seems bad enough though and my dad is so sensitive to medication. Thankfully, we’ve not had to consider anything else.

Maybe you won’t need it after you’ve been a little while at an increased dose. Or, do you think you might be a candidate for the new biologics that have been recently approved for PMR? It sounds like others have very good experiences with them.

It does take some time to get over a flare like what you’re describing. It doesn’t mean you won’t get back to where you were, but your body just needs some time. Usually, my dad’s flares last no more than a week.

I’m hoping yours resolved sooner too and you’re able to settle in a combo of treatments that works well for you.

Happy to answer other LDN questions if you have any.

Thank you so much for the book recommendation, I will look into it. Thank you for responding and good luck with Kevzara. Did you qualify for help with the costs? I have heard it is very expensive.

Thank you @bschoeni for the book recommendation. I’m supplementing my tapering with immune boosting supplements, and a tincture (Rapid Immune Response) that I’ve cleared with my doctor. I saw boosting my immune system as balancing the affects of prednisone. I’ve ordered the book and can’t wait to read it! Many thanks again!

@bschoeni

Correction: the tincture is ‘Rapid Immune Boost’

Thank you for this excellent synopsis of what you and your Dad have been through. I have joined a FB group that deals entirely with those taking Naltrexone and I am learning a lot. Thank you for your support and kindness.
Right back atcha!