PMR - What do you wish you had known . . .

@pmrnew I was diagnosed April 2024. Started with 20 mg prednisone which worked like magic and brought my CRP and SED numbers back to normal. I was treated by my primary care doc as he had experience with PMR and no rheumatologist in my area. I stayed at 20 a month and then started tapering in 5 mg increments. All went well until I got down to 5 mg and had a big flare. Went back up to 10 mg and came down using a much slower taper until I got down to 3 mg - another big flare. At this point my doc referred me to a rheumatologist in another city, thinking I might need a biologic. It took a long time (several months) to get an appointment. In the meantime I read on this site about the slow taper method for use with low doses that I shared here. I discussed it with my doc and we agreed that I would try it, monitoring and adjusting the dosage myself, and just keeping him updated periodically on my progress until I could see the rheumatologist. By the time my appointment came I was doing well and at 3.5 mg - rheumatologist said I should stick with this taper schedule as it’s obviously working for me. Had new bloodwork recently and my CRP and SED levels were normal. I asked the rheumatologist if I could just stop the prednisone since I’m at such a low dose, and he said no - that I should follow it out to the end. I’m at .5 mg now - will stay here a week and then start the steps down to zero if all goes well. I give my primary care doc a progress update every time I get down by another mg. I wish you the best of luck with your taper. I never realized that these last few mg would be so challenging and was very surprised when I flared again (with high blood numbers) at 3 mg!

@dadcue indeed everything you say make s so much more sense with the nuance. And with what you just said, maybe, just maybe the worst is behind me. And yes I am and just 2 weeks ago was in Zeist visiting family.

@cyndip wow, so you have been on pred over 2 years. When you tapered below 3mg and had a flare, that immediately reflected in CRP and ESR? Yes, so the last little bit, very slowly.

@pmrnew

Now I really miss the Netherlands. I lived in Soest but I went to Zeist and Utrecht often. I was either on a bicycle or moped not knowing where I was most of the time. I could easily find my way to the Air Force Base or Soest if I saw a blue sign to Zeist.

You are doing really well being on 2.5 mg so soon. From 3 mg to zero was very difficult for me because of being on prednisone for a long time. I was on prednisone for 12 years to treat PMR and some other things, If it wasn't PMR, it was a prednisone side effect or another autoimmune condition. My starting dose of prednisone after PMR was diagnosed was 35 mg. It took me 10 years to reach 10 mg. I was able to taper off prednisone after a biologic called Actemra (tocilizumab) was started. Things were crazy my last 2 years on prednisone. With help from Actemra, going from 10 mg to 3 mg wasn't so bad but going from 3 mg to zero was a doozy. I needed to go back to 60 mg for a while before I finally made it to zero. Now I have been at zero prednisone for 5 years but I'm still doing a monthly infusion of Actemra.

@sbgigi Just a word of encouragement. Please realize everyone's journey is unique. Unfortunately yours seems to have a bunch of rough spots early on. Hopefully it will smooth out and you can get back closer to the "old you".

Hopping on to say what a great thread this is, especially for newbies like me. Thank you all for taking the time to post your thoughts and experiences. This is valuable beyond measure. <3

I have been thinking about all that I wanted to list here since this was asked in June. I’ve also been a bit lazy. Admitted.

Many of you have probably seen
Dr. Megan’s-The Prednisone Pharmacist videos (and sales pitch at the end.)
She pretty much says what I wish I had known prior to starting Prednisone. I have not tried her product, nor am I endorsing it. I will also say that there are one or two items on her list of ingredients that I cannot take due to another prescription drug that I must take, so I source the ones that I can take and do take.

I’ll preface the link to her video by saying something that I wish I had known that she mentions, but then doesn’t follow-up on, that Prednisone helped her but may adversely affect others like myself.
She began using Prednisone to stop bleeding. Prednisone caused me to have deep vein thrombosis (DVT) and hospitalized me with a blood clot in my right leg from my groin to my ankle. Prednisone can cause blood clots. It only took 30 days to cause the large DVT and I spent 24 hours in ER with 3 additional days of in hospital monitoring before being released. So, as much as I’d like to take Melatonin to get sleep, I cannot because now I’m on a prescription blood thinner. My hematologist wants me on Warfarin (which I refuse, too many horrible related issues) so I take Eliquis (Apixaban) because it’s a more “friendly” blood thinner. Seven months of Eliquis twice daily, I see my vascular surgeon tomorrow for a third ultra-sound follow-up and expect that the blood clot has finally dissolved. He has mentioned halting the Eliquis, but I’m going to suggest a taper rather than cold-turkey. I’ll run it by my PCP as well. I don’t want another blood clot event like DVT, even though I don’t want to continue on a blood thinner. Blood thinners make cuts slow to clot, and we know (wish we had known) that Prednisone makes our skin thin and minor scratches become open cuts.
Because Prednidone kept me from sleeping, I take prescription sleeping capsules called Temazepam. At my starting dose of Prednisone (40mg/day) I took 30mg/night of Temazepam. Now, with the help of Kevzara (saralumab), prescribed to get me off of Prednisone faster due to the blood clotting effect on me, I take 15mg/night of Temazepam. My current Prednisone intake is 1mg/day, and I’m starting to skip Temazepam at night. My PCP prescribed the Temazepam because he said it was less likely to cause addiction than many other sleep aids, especially since I was on a blood thinner and couldn’t take Melatonin. I take Magnesiun Glycinate, Calcium, Vitamins D3, Vitamin B12, and Potassium. I haven’t taken K2 because of the Eliquis even though research indicates that it may be okay. I don’t take the Melatonin or the other drugs she supplements along with it. I do my best at keeping my circadian rhythm regular and I exercise a lot. A lot of treadmill walking and heavy (for an old man) weight training to prevent bone and muscle loss.
(My vascular surgeon said walking was good for my DVT healing. I said I already do, then asked him how much was too much.

Having said that, and admitting my being lazy, the video linked below sums up the remainder of what I wish I had known before starting on Prednisone.

Rock and Roll

@jabrown0407 I wish I had known to ask my doctor to check for inflammation levels whenever I had routine bloodwork done when I was in my sixties or even 50's. Maybe they could've caught this before it got out of control...with an anti-inflammatory diet or some supplements? I'm telling family and friends to discuss this with their doctors. I didn't even know about inflammatory markers, or PMR for that matter.

It’s clearly a learn as you go process that requires a lot of patience and self motivation. I’m on a two week / 1 mg taper, got down to 7 mg and then had to go back up to 10 mg. I fault the pain at 7 mg with extra strength Tylenol but came to my senses after a week of discomfort and a lot of fatigue. Had I bumped up to 8 mg when I started having issues I may not have needed to go up to 10 mg. Like I said, patience is key to overcoming PMR. On a positive note, I recently retired and hoping that eliminating the daily work stress will be the magic I need to feel normal again. Like they said in Blazing Saddles, keep the faith!

PS. My dr said for me to make the gym my new job, lol! I’m trying but have so many chores, ha!

@tyman23 You might want to give up refined sugar, it is simply feeding the inflammation beast. They have full anti-inflammatory diets if you want to go that route. Cutting sugar and carbs out is what I did. Took about a month to get over my sugar cravings. After that it's been easy and I'm at 5 years.