I've had my rheumy and gp tell me that all symptoms do not have be gone before tapering down. I still have niggles, light and brief head, eye discomfort/ache and a tired feeling jaw at times. Even a few brief pains in various parts of my body but then goes away. I am not totally symptom-free and it seems to be the consensus here on this forum one must be totally symptom-free before attempting tapering. Sounds reasonable to me but the docs say no.
I am very sensitive to changes, even from 60mg to only 55 beginning on the second day (this is day 8) I still experience all of this plus weakness and fatigue. I just want to find where I am symptom-free and slowly taper by 2.5mg....... want to desperately lower my dosage, been high tooooooo long!
Thanks for any input.
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gtate1914
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(I only have PMR,) but I think the weakness and fatigue will be with you for some time yet, whether you reduce or not. The ‘disease’ is systemic, and I liken it to the week after you’ve had the ‘flu, that ‘get up and go has got up and gone’ feeling. The mind may be willing, but the body is definitely on strike! Much gets planned in my head, but little translates to physical achievements.
Be clear in your mind about the difference between steroid withdrawal, which tends to happen earlier, and return of pain which happens later.
Also can some of your aches be resolved with simple pain killers? If they can, then they aren’t PMR/GCA pains. Worth a try to differentiate. Analgesics can also help a bit with steroid withdrawal pains.
Dr’s have hurried me to reduce, it’s always backfired! So if these are genuinely PMR/GCA pains, then I’d say don’t reduce. Problem is for you to decide which pain is which. It’s a mine field isn’t it?
Sure is a mine field. I've taken tylenol, still have some mild aches around eyes, temple. As much as I hate to, I think upping it a little to where there are none of these symptoms for awhile then tapering maybe 2.5mg at a time. Will discuss this with rheumy next appt.
No, I don't feel it is a consensus that you must be pain-free before tapering. Some people simply are NEVER pain-free and I and others do say that quite a bit. The starting dose would usually be used for up to 4 weeks and if applicable the blood markers checked to be sure that they are falling before tapering. Symptoms should have resolved to a steady level. In GCA, the very high doses are used to reduce the inflammation quickly - but after that doses down to 40mg are still enough to deal with left over inflammation so minor niggles are less of a concern.
Once you have established the level of freedom from pain you can achieve - that is your guide for the rest of your tapering journey. A basic guide is that you should not feel worse at the end of a taper than you did at the start. Using one or other of the slow tapering schedules or keeping the step down relatively small (never more than 10% of the current dose) reduces the likelihood that any pain with a reduction step is steroid withdrawal. Steroid withdrawal pain typically starts immediately you offer the new lower dose to your body - and usually takes the form of rheumatic discomfort, very similar to PMR. It then slowly improves over the following week or so. A flare usually takes at least a few days to appear and then gets worse steadily with time.
Some people are very sensitive - but small steps should be OK for you to stick it out. The weakness and fatigue are part of the disease - it is a severe systemic illness and you are a poorly person. The pred only manages the inflammation - it has no effect on the actual disease process, that is still continuing in the background. Fatigue must be managed as best you can by pacing:
This should be a 'go to' message as I have tapered twice and had questions that you have answered here, the questions my pred head couldn't work out how to ask. Really helpful
I started on 60mg for GCA the Rheumatologist dropped me to 40 which was a disaster as I felt so ill, then went back up to 50 and started dropping very slowly in 2.5 tapers. I have to say I always had the aches and pains you have described, but my doctor tested my bloods every week to make sure the inflammatory readings were OK and that I was not having a flare. As PMR Pro has said and describes everything so well, it is all part of the condition and you need to rest a lot and if possible do very little - the fatigue and general feeling of weakness will be there for some time, also the high steroids can make one feel odd. I have now a wonderful Rheumatologist who over the last two years has just edged me down slowly and I am now at 8.
You need to be very gentle to yourself, if possible, and sort of accept it and go with it.
Once the CRP level stabilised, tapering began. Get to know what were the symptoms of the disease and what are the side effects of the prednisone and other drugs. I was told to blame almost all discomfort on prednisone. Now (on 1mg) most of the side-effects have almost gone.
I wish I had all this information when I was first diagnosed with pmr and gca...... things would have gone a lot smoother for me! It was all so confusing. Love this site.
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