CRP and SED rate down to normal range but still have symptoms of PMR

Thank you so much for your words of support. It is so encouraging. I am sorry you experienced so much bone pain as a side effect. May I ask how long you were on the prednisone?

My pain is tolerable, but includes both bone and muscle pain with stiffness/ heaviness of limbs - Luckily, it improves as the day goes on. When blood test showed normal range, doctor wanted to look at other causes and treatments (methotrexate) but I think when you hear hoof beats, think horses and not zebras! I seem to have had classic course of PMR so far. 

Glad to hear there are others who have had low SED and CRP while still in weaning stage of treatment. 

Hi gail39791

This was my experience.

I was on pred approx 14 months. I started with 15mg for PMR my ESR and CRP were elevated. I tapered from 15mg to 10mg after 3months and then tapered 1mg a month until i came off preds completely. I started to get pain at 3mg my rheumy wanted me to go back up to 5mg and i refused. I was determined to get off pred pain or no pain. I got down to 0.5mg and stopped taking pred....i still had pain..but a week later after coming off the preds i got up one morning and felt that i had been thrown under a bus the pain was unbearable. It turned out it was bone pain in every bone of my skeleton. I weathered the storm of bone pain and withdrawal symptoms......the withdrawals abated after 2-3 weeks but the bone pain stayed but got less and less as time went on....i am now free of the bone pain but had the pan in my shoulders, neck and arms which was confirmed as bursitis and osteoarthritis in my shoulder, when my rheumy sent me for a scan...i have since had a cortisone shot into my shoulder and am now free of any pain just a little in my hips and thighs which is osteoarthritis managed with paracetamol or tramadol....i'm having physio for the bursitis and i've been assured by my ortho that it will eventually go with the right treatment....it has been a bumpy road but well worth it for the way i'm feeling today....adrenals are starting to function normally, the fatigue has abated and i feel i'm back to normal although it could take another year for adrenals to be completely up and running....keep strong and positive gail39731 and keep smiling as Michdonn always says.....my very best wishes to you..hope this has encouraged you to see that there is light at the end of the tunnel....

 Lilian05079, you have encouraged me by relaying your experiences with the ups and downs of weaning off prednisone. So happy to hear you have weathered the worst of the storm! I had not considered or heard that some of the pain could be from prednisone withdrawal! This is very helpful to know - especially as I begin to wean down to the lower doses. 

I clearly remember the "under the bus" feeling when I was first diagnosed. Luckily, I have not experienced it to that extent again. I am so sorry you had a return to that during your weaning off prednisone. If it does happen to me, I will remember your experience and know, as you say, there is light at the end of the tunnel.  

 

The difference between pred withdrawal and resurgence of PMR is often in the timing.  Pred withdrawal happens quickly, maybe in a day.  It gradually lessens, and can be largely contained by using one of the slow taper methods.  PMR builds up more slowly over days or even weeks.  I've experienced both.  Was able to reduce to 1.5 over many months, and at the start of every reduction did experience some return of symptoms, but by the end of each taper felt much as I had at the beginning.  But an ill-advised attempt to get to 1 triggered return of much more serious symptoms and eventually after several efforts, the need to go back up a few mg.  I thought I'd be able to get back to 1.5 very quickly, as is often the case with a flare one can return to the last effective dose, but this doesn't seem to be the case for me at this time.  But I'm okay at 4 and starting a taper to 3.5, hopefully successful because I do feel the difference between 1.5 and 4, and would much prefer the lower dose!

I can see from your experience the pitfalls of weaning too quickly. My doctor was pushing a more rapid wean, but it did not work for me. I am relieved to hear from those who also had to take it more slowly. As I mentioned earlier, I was starting to feel like I had somehow "failed" as a patient because I could not keep up with the expected weaning schedule. I'm down to 4.5 after 10 months, and it sounds like that is actually good progress. I am so encouraged and now confident in my decision to reduce my dose more slowly and stick with the prednisone - going down .5 mg at a time. 

Thank you so much for sharing!

That is extremely good.  Well done!  you are at a level where side effects are minuscule.  I know I grumbled, but 4ish so much better than, say, 10 was!

It is so common for patients to end up being made to feel "failures" for not being able to match their doctor's totally unreasonable expectations in terms of dose reduction. Very few patients can manage the reduction schedules suggested in much of the literature - and it is because their doctors don't read the codicil in every article I have read to date: the reduction must be tailored to the individual patient and some may benefit from much slower reductions. Which we patients are only too well aware of.

As you know my doctor has from the very beginning told me that we treat symptoms not numbers.  Her failing was in not checking how my symptoms were as I got very low, but when it was apparent I really needed a higher dose than I'd been willing to try to deal with returning symptoms she encouraged me to go up a little more, and it worked.  I told her I felt like a failure and she was actually quite kind and reassured me that none of this was my fault.  

Yeah! Nice to know this is normal! Thanks for that bit of information. May I ask what dose you are at while still experiencing symptoms? What does your doctor say about the fact that there is no synchronicity. Any insight from him/her? Mine seems to want to look for other causes...

My doc  feels I have an ""atypical" case in that nothing but prednisone works... all other DMARDS and BIOLOGICS  make me worse or the side effects are unmanageable.  I also have very, very mild RA... in general with prednisone, (right now I am at 22 but had been at 4....)  I do well... but osteoporosis and prediabetes are issues with the long term pred.  She is  flummoxed ed by my case, but for now we are treating it symptomatically, and I am tapering using super slow method, hoping to avoid another   Flare.  

I am sporty and active, but recently have experienced fatigue.  That is new in the last 6 mos.  do my best to not succumb.

Thanks for your insights, Bethune. Hope you continue to progress. I have found the degree of fatigue to vary greatly throughout my 10 months - some months not experiencing much fatigue at all, and other months more significant. Hopefully, your fatigue will abate in the coming months.

I, too, am usually very active. When I was going through a moderate fatigue stage (not when extreme fatigue had me sleeping in bed), and felt so frustrated that I could not accomplish what I would normally do. To cope, I changed my "to do" list to more sedentary things like reading and catching up on things I could do while reclining or laying down. I was never one to sit still too long, so it felt great to read those books/articles that I had always wanted to read but never had the time. It helped me feel like I had accomplished something - which kept the doldrums at bay.

 

Wishing you strength and courage

Bethune - Your doctor obviously has some misconceptions about PMR. ONLY pred works in PMR. No DMARDs make any different and the only biologic that is likely to work is tocilizumab/Actemra. In some people a DMARD may, though not necessarily, allow them to manage on a lower dose of pred but they never replace the pred in PMR. 

Not clear - was the fatigue at the low doses of pred, when you were down nearer 4mg? If so, it is likely to be adrenal insufficiency as your adrenal glands are not catching up with having to produce cortisol again when you got to a dose below about 7.5mg. Above that you body doesn't need to produce cortisol, below it gradually has to start to top up the pred dose.

The Biologics and Dmards were for the RA , as I have both, with at least one degenerating joint capsule in my collarbone and sclerotic tendon development in my fingers s... which is improving.  The fatigue is at 22 mg pred.

The symptoms that bother me are PMR and osteo, only occasionally the RA. Fatigue could be from that too. 

I'm actually doing well, just having trouble tapering. 

Hello Gail. I came across this helpful post rather late  (after I posted something similar) but so glad I did !

This has been my main query all along...will I be making things worse by tolerating some discomfort.    I am 20 months in and down from 40 to 5/4 mgs

Thanks to all the 'top Brass' contributors in this post, it has been SO reassuring and informative.