Return of PMR Symptoms While Doing A Slow Taper

[Donna5658]

I was diagnosed with PMR in August of this year after several months of increasing musculoskeletal pain in shoulders, neck, thighs and butt. Just before I was diagnosed, the pain in my thighs was so significant that I had to lift my legs off the bed to be able to stand up. On the first day of prednisone, my pain was reduced by about 95%. It seemed miraculous. Both my CRP and Sed Rate were significantly elevated.

(For background, in addition to PMR, I also have multiple sclerosis and Grave’s Disease, both autoimmune diseases, and am an advanced endometrial cancer survivor. Having these several co-morbidities sometimes makes it difficult to sort things out.)

I was started on 15MG of prednisone in August and my internal medicine doctor started me on a very slow taper almost identical to Dorset Lady’s 5 week slow taper. I have just finished two extra weeks at 10MG after the slow taper from 12.5 and on Sunday started my first day of 9. We had been dealing with severe snow and ice here in Seattle, so I didn’t take my usual daily walk for over a week. It finally warmed up and I did one walk on Saturday and then again on Sunday, after which I noticed that my butt pain had returned. It has now been back for 4 days. It is hard for me to believe that just reducing from 10 MG to 9MG for one day could trigger a flare of PMR, but the timing does seem suspicious. I am also just more achy in general. Other symptoms consist of a continuation of significant bilateral blurry vision (which the ophthalmologist attributes to the prednisone), muscle wasting in my thighs, and at times profound fatigue.

Does anyone in the community have an opinion about what might be happening? I have stayed on 10MG for all but the one 9MG day. I’m just not sure how long to wait with these symptoms before going back up to 12.5. After having so many wonderful pain-free months, it’s disappointing to have it return.

Thanks!

[SheffieldJane]

As PMRPro tells us, Pred. is not curative. The aim is to get to the lowest possible dose to deal with the harmful inflammation. It seems to me that you have gone below this dose. I would increase to 12.5 mgs immediately to attempt to halt a full blown flare. The weather and your co-morbidities will be contributing to your symptoms. I would pause your taper for a few weeks to allow your system to get on to an even keel. Patience is the name of the game. These small alterations in dosage can have a profound effect. Good luck!

[Donna5658 in reply to SheffieldJane]

Thank you so much for your reply. I have emailed my doctor, who said I should contact her if I had any increase in symptoms as I was tapering. I’m wondering if I should get a CRP test before I go back up to 12.5. Hopefully I’ll hear back from my doc tomorrow.

[SheffieldJane in reply to Donna5658]

I wish CRP tests were accurate, but when the inflammation is suppressed by Pred it tends to under report the situation. Symptoms rule.

[PMRpro Ambassador in reply to Donna5658]

Symptoms are always more reliable than lab results which can lag behind.

[A2525]

I’m sat here taking 12.5 pred just take it

I’m in pain from a walk yesterday and feeling quite sad that all my enjoyment has gone , changed diet, no golf and now no walking but the pain in shoulders is back

I started on 50 5 weeks ago and got to 15 then 12.5 but struggling it will hurt you more to have pain

[123-go]

I agree with SheffieldJane.

Did you see the hospital ophthalmologist? You need a thorough examination in view of the blurred vision: an assumption that it is solely the pred that is the cause is unsatisfactory.

[Donna5658 in reply to 123-go]

I saw an ophthalmologist at an eye clinic right after I was diagnosed in August. He examined my eyes pretty extensively and also did a scan, which didn’t show anything. The blurred vision started when I started the prednisone and is bilateral. My ophthalmologist said he had seen a number of GCA patients, so hopefully he knew what to look for.

[123-go]

Good to have an ophthalmologist who is on the ball. I wish you well.

[PMRpro Ambassador]

Did you also do anything extra or different? That much reaction to just one day of 1mg less is quite a lot but if the 10mg was only just enough it can tip you over the adge easily enough.

Try adding 5mg for a few days and go back to 10mg again Many doctors say not to try to reduce in cold weather - and they mean ordinary cold weather, not your cyclone bomb!

I just posted some links for piriformis syndrome which can cause buttock pain - worth a try:

spine-health.com/conditions...

healthline.com/health/thing...

myhealth.alberta.ca/Health/...

When you have a week trapped indoors, return to exercise in small bites first!

[Donna5658 in reply to PMRpro]

Thanks for your reply. I didn’t exactly do anything different, other than resume my normal walks after a week of inactivity. I walk around a local lake (3 miles) as this keeps my ms under control. However, I did notice after the first day back at it that I was really exhausted. The small bites suggestion makes complete sense. I can walk around my block as an alternative and can stop anytime I need to.

[PMRpro Ambassador in reply to Donna5658]

There any seats around the lake? Not that that is too appealing in December!!!! A handy cafe???? I could walk much further if there was decent seating option halfway-ish ...

[Donna5658 in reply to PMRpro]

This is probably more information than is necessary, but I have lymphedema in my left leg from my cancer treatment. I can walk, as with the aid of compression garments and muscle contraction, the lymph fluid is pumped back where it belongs. As soon as I stop, even to sit, my foot and leg fill up with lymph, which makes further walking difficult. So I pretty much need to keep moving once I embark on my circumnavigation of the lake. Lots of wonderful migratory birds this time of year for entertainment.

[PMRpro Ambassador in reply to Donna5658]

Ah - not helpful. That's a shame.

[Missus835]

During my recent bout with the flu (which lasted 5 weeks or so), I upped the Pred to 14.5 and still at that level. The slowest taper is best, but I'm sticking at this level for awhile. Yesterday I succumbed to torturous fatigue, after going to just one store. Exhausted and started to cry in the car. Haven't cried about this is a long time. Have developed quite a positive attitude and have been "going with the flow"; although not flowing too well at the moment. My daughter asked why I was crying? Was it money? Well, it could be, as money has been stressful lately. Not self pity, just frustration. Today just as exhausted, if not moreso. No strength in my legs at all. Took an extra 1mg this morning. It's 10 a.m. and I could lay down and sleep, after a good night's sleep. I don't feel sick, just drained completely. I totally sympathize and empathize with you Donna.

[ab58sf in reply to Missus835]

I empathize as well. I don't eat red meat, white bread, sugar, much salt, and only an occasional fried food. But after Covid, I can't get back to no pain & my blood pressure is all over the charts. Now, as my rhumy wants me to use hydroxychloroquine, I can't have coffee.I can't walk far either. PMR really changes our lives!! I am trying to stay positive also, but some days it gets the better of me. Hang in there!

[DorsetLady PMRGCAuk volunteer]

Although using a slower taper gets you from higher dose to lower dose more easily. If the lower dose isn’t enough, it isn’t enough…fact. And below 10Mg it might be more sensible to reduce by 0.5mg per time.

You are only a few months into treatment, so there us absolutely no rush, but you might find that a few days (5-7) at 12.5mg sorts things out, and then you should be able to drop back down to 10mg - and reduce as suggested above..

[Donna5658 in reply to DorsetLady]

Thanks for the helpful suggestions. I think the increase back to 12.5 sounds reasonable. I would happily stay there if it weren’t for the blurry vision. I had pretty advanced cataracts before getting PMR and the prednisone just compounds the problem. How often do people with PMR need to have their eyes checked to be sure they are not developing glaucoma or in my case worsening their cataracts due to the prednisone?

[DorsetLady PMRGCAuk volunteer in reply to Donna5658]

ideally 6 monthly -but you may need to pay -NHS will only cover annual costs -depending on age and circumstances.

Are you under local hospital eye department for cataracts or local optometrist?

[Donna5658 in reply to DorsetLady]

I’m in Seattle in the US and have Medicare with a supplemental. I can be seen by an ophthalmologist as often as I like, but haven’t wanted to go in unnecessarily. I was seen by an ophthalmologist right after I was diagnosed and the blurry vision was attributed to the prednisone as it began shortly after I started it and the exam, including scan, was normal. I had been procrastinating about dealing with my cataracts and now feel like I need to wait until my prednisone dose is lower. My vision test changed considerably after commencing with the prednisone.

[PMRpro Ambassador in reply to Donna5658]

The pressures are important though - pred can raise them and if it is bad it can proceed to glaucoma. Mine have never risen - the local chap here said it either happens fairly soon or it doesn't but you have to check to find out which you are!

[DorsetLady PMRGCAuk volunteer in reply to Donna5658]

Wasn’t sure - did look at your bio but doesn’t say where you live…

I had my cataract done when I was on 9mg, but had been on much higher with GCA. Pressures did rise early days, but reduced back to normal as I lowered the Pred.

[LarryLeek]

At first I would go back up @ the same taper as I did going down but once I found my happy median (the dose I can take w/ guaranteed no pain) once I found that happy median I used that as a green flag dosage to get back up to IF necessary. I found my happy median to be 12.5 mg. This is what I learned the hard way. Every time I’ve been able to get down to 7.5 mg the pain has come back & a couple of times I suffered some bad effects. The 1st time I got that low the pain came back but I was stubborn, inexperienced w/ PMR @ that time & wouldn’t go back up on my prednisone & I became very ill & could not keep anything on my stomach (except for 7up) for over 4 weeks. I was hospitalized eventually & the Drs. determined that my PMR had gotten out of control & bumped me all the way up to 60mg of prednisone a day. I got much better quickly & they slowly tapered me back down to 15 mg a day. The 2nd time I tapered down to 7.5 mg my pain came back & before I could get back up to my happy median (12.5 mg), because I tapered back up too slow I almost completely lost sight in my left eye. My vision has not returned. I can see out of it but it is VERY blurry. If my Rt. eye was the same theres no way I would be able to drive. I learned one thing from these 2 instances. Once your pain returns during a tapering down process, do not mess around, being stubborn or tapering back up slowly. KNOW what your happy median is & return to it immediately & inform your Rheumatologist of your issue & resolve. Let him determine when to start another tapering down process, however ANYTIME during that tapering down process that the pain returns do NOT wait for him to tell you to go back up, do it on your own, he does NOT know your pain only you do, so you waste no time getting back to your happy median.

[LarryLeek]

One thing I will add is you will never find better advice than you will from DorsetLady & PMRPro When I 1st was diagnosed with PMR I learned a LOT from them. This was however after the 1st time I tapered down to 7.5 mg. Their wealth of advice is PRICELESS. I’ve had PMR going on 5 years now & my knowledge I feel has definitely advanced but their’s still dwarfs mine LOL. So what ever they tell you I would take it to the bank 🏦

[Myalgia]

am following this thread closely bc am experiencing similar problems here in Massachusetts. I kicked up my prednisone from 9 to 12 when rheumatologist said go only to 10 bc 1 wasn’t helping. Am learning to listen to my body more than anyone else.

[PMRpro Ambassador in reply to Myalgia]

Just going from 9 to 10 might not help - but a few days at 14 and return to 10 might well have been all you needed with no need to go far up for long.

[Donna5658 in reply to PMRpro]

My doctor recommended going from 10 back to 12.5. This dose doesn’t seem to be touching the pain. My initial dose of 15 when my PMR was first diagnosed was nothing short of miraculous as all the pain disappeared. Does it sometimes take awhile for pain to be controlled when you increase prednisone during tapering? I’m wondering if I should go back up to 15?

[PMRpro Ambassador in reply to Donna5658]

When you have a flare due to overshooting the dose you need, we usually suggest adding 5mg to the dose where you flared for a week or so before dropping back to the last dose where you were good - so for you that would be 15mg before going back to 12,5mg to see if that is enough. Then I would suggest 1mg at a time, many people are unable to cope with 2.5mg at a time, The recommendation is never more than 10% of the current dose,

[Donna5658 in reply to PMRpro]

Thank you! This seems like the best approach for my current circumstances.

[moonieboy9358]

I was never able to drop by 1mg at a time. I had to taper much slower than that. I had to taper by 0.25mg at a time. I had terrible withdrawal symptoms

[LarryLeek in reply to moonieboy9358]

my rheumatologist has me taper by 2.5 mg per taper until I get to 10 mg then 1 mg per taper. It’s after I get below 10 mg is when I have issues w/ the pain returning.

[moonieboy9358 in reply to LarryLeek]

Yes I understand. I just could not tolerate tapering by my rheumys recommendation. I had to go slower.

[LarryLeek in reply to moonieboy9358]

yea I definitely understand. I alter my tapers as I feel I need to then I inform my rheumatologist.

[Donna5658]

Thanks to everyone who has replied to my increase in pain while tapering post. Your comments and suggestions are invaluable. I seem to have generated yet another question regarding this breakthrough pain issue.

As mentioned above, my response to my initial 15mg prednisone dose at diagnosis was amazing. Almost complete resolution of my PMR pain in one day. With this breakthrough/flare pain, it seems very different. I have upped my dose by 5mg (from 10 to 15 mg) but my gluteal pain is still pronounced and has gone on for days. Should I not expect the resolution of this pain to be as quick as when I first started the prednisone? Does it take several days or longer for the upped dose of prednisone to kick in to control the pain? I’m happy to lower my expectations if I know that I shouldn’t expect the same kind of quick pain relief as I had when I first started treatment. I would just like to understand why the response rate is different at the same dose.

Thanks very much!

[DorsetLady PMRGCAuk volunteer in reply to Donna5658]

it sometimes does take longer - in attached link I usually suggest staying at higher dose for 7-10 days - but, like everything there is no set timeframe for everyone-

healthunlocked.com/pmrgcauk...