Thank you to all who are responding and helping me make decisions. Some day it will be me helping others, I promise.
Recap: I have been dealing with pmr for 4 years. For the last year I have been on 4.5 mg and I have felt only moderate pain, some days none. 6 weeks or so ago, however, the pain increased. I tolerated it until 5 days ago when I increased my dosage to 7 mg. I felt like things kicked in yesterday, but this morning pain is back. Today my rheumatologist gave this directive:
"I would recommend the following taper
15 mg for 7 days
10 mg for 7 days
9 mg for 7 days
8 mg for 7 days
7 mg for 7 days
6 mg for 7 days
If you have problems tapering we would adjust it. Let me know if you are ok with this - and I will send in more prednisone for you to fill."
She also started me on hydroxychloroquine 2 weeks ago which she says takes a few months to become effective.
Going up to 15 mg from my usual 4.5 mg concerns me, but I am leaning toward her recommendation because I want to try something new to alleviate this pain. My own attempts - diet, exercise, lots of water, Tylenol Arthritis... - have not been successful lately.I like her. I drive 2 1/2 hours to see her because my local rheumatologist was...let's just say "not good."
Opinions?
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Maggieart
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Sounds more sensible than many rheumatologists would have suggested- have slight reservations about weekly reductions - but it’s worth giving it a go.
Re this comment from your post, had you reacted earlier, you probably could have got things under control much quicker - but then hindsight is a magical thing isn’t it? 😊
6 weeks or so ago, however, the pain increased. I tolerated it until 5 days ago when I increased my dosage to 7 mg
Hope the plan works for you. .. but obviously it you feel it’s not anywhere along the way, you need to speak to Rheumy.
I respect you so much. You always have well thought out posts. Thank you. I'm going to give it a go. (Yeah, I should have done something sooner...I was determined (stubborn) to not increase steroids, trying to avoid a lot of meds, but there comes a time...)
I don't want to dominate your time, but one last question before I head to work. I have taken 7 mg this morning. In your opinion, should I take the other 8 now?
My experience now has been that thanks to the help from this forum, I finally am listening to my body and adjusting my taper accordingly. Also it has given me such great info and other questions to ask my drs that I wouldn't have thought of. Luckily my GP is extremely communicative and non-ego -- if he hasn't heard of something I suggest or bring up for any reason, not just PMR, he looks it up or checks with one of the other drs in his practice, so I'm not dependent on my "rheumy" (which must be a British term! I haven't heard anyone here use it!) if he insists on sticking to his regime.
Here’s my personal, PMR treatment story of transitioning from prednisone to hydroxychloroquine (successful so far).
In August 2022, at age 67, I awoke to acutely painful, joint-inflammation stiffness in shoulders, hips, and lower back. My rheumatologist diagnosed PMR and prescribed immediately-effective, 20 mg daily prednisone. In subsequent months, we gradually tapered to an effective plateau of 10 mg daily prednisone.
In Spring 2023, attempts to further taper my prednisone repeatedly failed (aforementioned symptoms returned). At the same time, I increasingly worried about prednisone’s relatively severe side-effects, especially in the long-term. So, I enthusiastically requested a switch to a different prescription medication to treat my PMR.
In June 2023, while still on the 10 mg daily prednisone, I began an added prescription of 400 mg daily hydroxychloroquine, which is known for significantly less side-effects. Because hydroxychloroquine needs up to 12 weeks to be fully effective, there was a overlap of both medications at their aforementioned doses for two months.
Subsequently, the hydroxychloroquine remained at 400 mg daily, but the prednisone was gradually reduced to the following doses: 5.0 mg daily in early August 2023; then 2.5 mg daily in October 2023; then completely stopped in late November 2023.
I have experienced no PMR symptoms since my switch from prednisone to hydroxychloroquine. I remain at 400 mg daily hydroxychloroquine now. So far, I have noticed absolutely no side-effects.
My rheumatologist sees hydroxychloroquine as a relatively safe, “maintenance” medication for me now. He predicts I will remain at this 400-mg daily dose for one or two years more, at which time we will gradually try to taper off completely.
Along my way, I have found it extremely important to learn to discern the difference between my PMR pain and other muscular-skeletal pain, such as that resulting from age-typical osteoarthritis in various joints, and tendonitis in a various areas. I found an excellent physical therapist and an excellent chiropractor to help me with those non-PMR conditions. Otherwise, the mix of different pain tended to “muddy the water,” making it more difficult to specifically assess and treat my PMR with clarity.
In addition, my ambitious development of drug-free, stress-reduction ability has helped me add less emotional suffering to my intermittent physical pain. I seek to further hone this ability as a valuable, long-term investment.
wow. Steve, I cannot begin to thank you enough for taking the timet to write this post. This is my journey almost exactly. You are just a year or so ahead of me (I hope). The final paragraph is amazing. I have so much hope right now (guarded, of course).
I have copied and emailed to myself your post so I will have no problem finding it again. As I have said before, when it is my turn, I will encourage others. Thank you.
Maggie, I'm glad my information seems helpful to you.
I'd appreciate any advice on how I might best become a more active part of this online community here, where I'm brand new. PMR is an extremely murky condition. Maybe we can all mutually benefit by sharing our different "recipes" for navigating it.
Would be good if you could copy your reply above into your profile/bio - and then it’s available to everyone to read more easily- and it also saves you writing it out each time.
The only way to be come more active is to do the same as many others. When you see a question or comment in post or a reply within that post that you have experienced, then you can reply giving details of how you coped personally with that particular issue. We cannot give medical advice as such, but if you have a literature you refer to, then please link it. Plus just be there to support those who need it.
However, you need to remember that this is forum has a worldwide membership and not all countries have the same medical set up nor protocols and that PMRGCAuk is UK based charity and majority of members are from there.
You have had eye-monitoring though I hope? The one significant adverse effect with hydroxy affects the eyes and can happen suddenly.
But you say you woke to " joint-inflammation" - which suggests that it might not be PMR as we mean since PMR is a soft-tissue problem and doesn't affect the joints in the same way. PMR isn't really the disorder, it is the name given to a set of symptoms and it can have several different underlying causes. It is often seen as the presenting problem in inflammatory arthritis - and they often respond very well to hydroxy.
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