I was a very healthy 61 year old man; that is until PMR decided to pay me a visit in July of 2024. I have never been knocked down so quickly and harshly in my life. I was diagnosed in August, and started on a 30-day 15MG of Prednisone, then a very aggressive taper schedule. The 15MG worked great, and I started to taper at 2.5MG every two weeks. I got down to 7.5MG, and had to go back to 10. Then I got down to 5, and had to go back to 10. Both times going back to 10, it worked, thus my tapering back to down to 5MG the second time. When I went to 5MG the second time, the PMR came back even stronger. My Rheumatologist instructed me to go back to 10. Which I did. This was working well until 5-days ago. For whatever reason, my PMR pain increased so severe that I went to 15MG. 15MG keeps it under control for about 15 hours a day I wake up at 2 or 3 AM in extreme and completely debilitated condition. I have a note into my Dr. as I think I need to increase up to 20 or more. Does anyone have any ideas or experiences of what might be causing such a severe turn? It’s my shoulders and wrists. Thank you so much
Written by
Detroitsports
To view profiles and participate in discussions please or .
I can only echo DL's comments. That taper is crazy and suggests the rheumy has no understanding of the mechanism of PMR inflammation. And by yoyoing he is making your job harder.
Pred CURES nothing - it is a management strategy. You start at a high dose and then taper - or titrate - the dose to find the lowest effective dose. That isn't zero - but a lower dose, usually under 10mg is achievable after a few months. But from 10mg you MUST taper at a rate not faster than 1mg per month - the lower, the slower.
Even when the antiinflammatory effect doesn't last 24 hours you can often extend the effect of the dose by splitting it - about 2/3 in the morning to manage the new lot of inflammatory substances and the rest later enough to extend the effect. It may be lunchtime, it may be later, but the earlier in the day the better in terms of the effect of pred on your sleep. You will have to experiment a bit to find what suits you.
But what did you do 5 days ago - or shortly before? Pred isn't a passport to go back to normal life, even if you feel well. PMR and pred both make muscles and soft tissues more delicate - no carrying heavy bags of shopping, moving furniture to make room for the xmas tree, the sort of things people do at this time of year!!
Hopefully not too depressing, I like to think realistic…🤨
In fact that’s what we give you on this forum… because we’ve been there, and know!
No point in giving you a sugar coated view with unachievable expectations because all that does is end up in disappointment and disillusionment and probably even more depression..
DorsetLady, you were right. Giving it another day of the 20MG was the ticket. Much better day for me yesterday, and this morning is the best morning I have had in over a week. I do not like that I had to go to 20mg, but it is worth it. Now for a better tapering schedule will no doubt be in my future. I am also going to start the Tocilizumab drug (approved here in the USA for PMR) to see if this helps to lower my Prednisone. How are you? what stage are you in with this disease? Thank you again for taking the time to write to me. This Forum has helped me greatly thus far.
Hello, I have been on Tocilizumab treatment for PMR and Giant cell arteritis for over 10 years and find it is working extremely well. Before joining on this biologic I was on 60 mg steroid per day. With Tocilizumab I go to the clinic for an infusion once a month. There is also an option to inject at home. Tocilizumab has been wonderful for me, When first diagnosed with PMR could not walk properly and experienced much pain. Now I can go on long walks and play pickleball a couple of times a week. Best of luck to everyone here and hope that 2025 will bring improved health to you all.
Micheal, thank you so much for your comments. This brings me great hope that this Drug will help me taper the Prednisone while keeping my pain tolerable. Good luck to you and glad your pain is under control. Happy New Year.
Where you live doesn't make any difference in this case - Actemra/tocilizumab wasn't used in GCA until about 2013 when a clinical trial was started to study whether it was a suitable drug to manage it. It was called the Giacta trial. Drugs can't be approved for use in specific disorders without thorough clinical studies, the resuts of which are used for submissions to the regulatory authorities.
I don't have the exact dates here but I have been on tocilizumab for a number of years (maybe not 10) and find it has been excellent.
(If the trial above resulted in approval in 2013 - 2014 we are currently in 2024. That would be 10 years OR perhaps FDA approval came after EU approval OR perhaps I was part of the clinical trial (unlikely)).
Your Rheumatologist has proposed a tapering schedule much quicker than reccomended by the Guideline of the American College of Rhematologists. Even these guidelines can be too quick for many.
You poor thing. Your doctor really is not up to par and should learn about the use of long term steroids and also about PMR. You are being forced to Yo Yo by your doctors “bad” advice.
Without repeating all the sensible comments regarding tapering… a practical suggestion re. duration of pred:
Most people take pred in the morning as it can cause sleeplessness. I (a similar aged man to you) had no problem with sleep but was in pain in the early hours of the morning and struggled to get going in the mornings. I switched to taking pred in the evening and that worked much better for me. If I was flagging at the end of the day, I went to bed early. I know other people who take pred in the early hours of the morning. You just have to find what works for you - we are all different.
Good luck! The best advice I was given was “listen to your body”. By way of encouragement, I am now off pred and doing fine and as active as before PMR.
I am sorry to hear that you are experiencing such discomfort at the moment. One piece of advice I would like to give you is to not think of PMR as a condition which has a definite expiry date, it doesn't. I was diagnosed back in 2018, I am still taking prednisolone. As explained previously, both PMR and prednisolone affect muscles and connected tissues around the body. Give yourself time, you will need to adapt. Love and light ✨️
I too was shocked by suddenly falling foul of this noxious disease! Why me?
PMR is an auto immune syndrome. Take note of the word auto. The cause is within you and you have to listen to your body and treat it very gently. I think and hope I have things more or less under control and am down to 4 ½ mg but I still get mild aches in the night and first thing in the morning. As others have said, your tapering plan has been foolish. You need a new doctor, and will find this forum a wonderful source of information and support.
Take it slowly, don’t overdo things, and things will get better.
Yes, no problem. I was lucky and diagnosed on my first visit to my GP in November 2024. She prescribed 20mg of Prednisolone for two weeks to see if the PMR responded, which it did although rather sluggishly. I suspect it might have needed 25mg to get a faster response. My blood test CRP was 72 and I have used monthly tests as a marker.
The GP told me to reduce to 15mg after the first month then 10mg for a month, then either at 10mg or 5mg reduce by 1mg per month. I think this is a pretty standard UK NHS progression. GP also advised me to take paracetamol for nighttime aches and pains.
I didn’t like this speedy reduction. 20mg down to 15mg is a 25% reduction, 15mg to 10mg is 33%. That's a massive hit to your system. So even before I had found this forum I was tapering my dose by 1mg or even ½ and later ¼ mg per week or so.
I got down to 5 ¾ mg in August and am still on 4 ½ now. I haven’t had any flares and only mild aches, my biggest problem is fatigue and inability to multitask. I feel I could have dropped to 4 ¼ earlier in December but had a busy working month in November, combined with suspected kidney issues which seem to be due to Omeprazole (although, as my doctor said, “the only way to test that is to try taking it again, and we don’t want to do that!”).
At the beginning, I thought I might be one of the lucky ones to get shot of this thing in 12 months. I now think that is unrealistic and would place unnecessary stress on my body which is obviously crying out for help otherwise it wouldn’t have presented me with PMR.
I think good diet is essential. Luckily I’m not a huge fan of carbohydrates but I do love alcohol, and honey, so my diet is not as sugar free as it could be.
Oh, I also bought an Oura ring to monitor my stress levels. I have to say my life is boringly stress free these days, although I do take a couple of mg of Pred extra when I am working (event photographer - standing up for 3 hours, heavy cameras, being nice to people, worrying about doing a good job, staying in hotels overnight). I'm selling the ring!
Thank you, Chris. Again, I appreciate your replies. They do help. I am coming to the realization that my PMR is going to pitching a tent and staying with me for a while. My goal is to "somewhat" get my life back. I too love alcohol, but I have cut that out completely for now. Maybe that's the problem. Ha ha... I hope I can get my dosage down to under 5 like you in a year or less. I am not a patience person; thus, this illness is really challenging me in more ways than one. I feel sorry for my wife. Thank you again
We often tell people - if you learn nothing else with PMR you will learn patience sooner or later. It is worth it because it does make the process easier and easier to bear. YOu cannot rush PMR because if you do, it will bite back,
If you have cut alcohol because you want and you feel better for doing so, fair enough but you don't have to. There are many of us in this group who still imbibe. Let's be realistic here, I'm not talking about getting sloshed every day but a glass of wine or a short after dinner is not going to upset the apple cart. If you are used to drinking regularly and suddenly stop, that will make you feel rubbish too. Everything in moderation might make you feel a bit more relaxed about PMR. When I was diagnosed in 2017 it was my intention to have it licked in less than 2 years - the time that a lot of Drs say is the duration of PMR. Well, seven years on I cannot get below 2.5mg, am back at 5mg and now accept I'm probably going to be a "lifer". You can still have a good quality of life with PMR, providing you learn how to manage YOUR PMR. That comes with knowledge and experience. You will gain the knowledge from this group and then you have the tools to manage your PMR. Sadly many Drs, even specialists, don't have a clue.
I'm off skiing in January and March and am fairly fit for my age (67) so it is possible, believe me.
You are right... I found that out the hard way. I have learned a lot this past week, in how fast this can explode and totally encompass your life if you taper too fast.
Sorry you have received the Unwelcome Visitor,our number one enemy on here.What a @@@@@@@ stupid doctor to suggest tapering like that!I had instructions like that on 2 occasions from my early days and had 2 flares of my GCA.They really don’t get it some of them do they?You will do well on here,the WISE ONES keep us all on the straight and narrow and keep us safe,lucky they do eh with some of the pitiful stories that we continue to read on this site.Very good luck to you D .Happy New Year,it is nearly here after all!xx💐😜
A.M., thank you for your note. I have started a new approach with 20MG, after two days, I am new man with controlled pain. I hope to taper down soon, however, I will be more vigilant in doing so. Happy New Year to you...
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Help tapering Prednisone 
How long is it safe to stay on low Pred. dose?
Possibly not increased enough?
Vaccines & Increased Prednisone 
PREDNISONE TAPERING WITH ACTEMRA
