Hello. This is my first post. In late June I spent a week in the hospital with fatigue, muscle ache and night sweats. I was diagnosed with GCA and PMR, put on 80 mg/day of Prednisone and discharged to the care of a Rheumatologist. The autoimmune symptoms subsided quickly, and my blood tests have returned to normal. I have been tapering the prednisone, and I'm now down to 8mg/day. I also receive monthly infusions of Actemra which is supposed to reduce the need for prednisone. Each time I reduce the prednisone dose, I experience mild headaches, and minor fatigue which subside late in the 4-6 week taper period. I also experience some muscle aches which can be attributed to my exercise program. My question is how to separate the tapering symptoms from the possible GCA/PMR symptoms?
Prednisone Taper: Hello. This is my first post. In... - PMRGCAuk
Welcome to the forum George.
I can only tell you my experience. I have PMR and am on pred only. If I get stiff/pains on the day of reduction or for day 2 and day 3, I consider them due to the lower dose. The pains which creep back from day 7+ are more likely PMR peeping back over the parapet. The pains/stiffness to me are so similar to be indistinguishable.
Exercise programme? Oh now you’ve worn me out, I shall have to lie down!
Soraya is right, usually pred withdrawal is quite rapid, but the PMR builds up over a few days. Sounds like you are using one of the slow taper methods not an overnight drop, so if your pain is happening right away it's worth continuing the taper to see if it subsides. If it doesn't you have probably reached your lowest dose (for the present) and need to hang out at whatever the dosage is for a few weeks before trying again.
Hi GeorgeZiser! Welcome to the site!
Were you diagnosed this June 2017?
If so, you have had an incredibly swift journey from 80 mgs to 8 mgs. I expect it is harder now you are below 10 mgs and you certainly don't want to spoil things at this stage, so I understand your concern. I wonder if the Actemra has made this amazing difference?
During my own taper I have found that if my symptoms are persistent and seem to be getting almost imperceptibly worse each day, I am in trouble and need to stop tapering. If I have gone too far I can sometimes rescue the taper with an extra 1 mg. I also pay attention to what is going on in my life. If there are heavy physical or emotional demands I will stop tapering until it blows over. What I do not know is the impact Actemra has on all of this, whether you can get away with just pressing on for instance.
You are doing well and are very wise to be building up your muscle strength with an excercise programme. I hope it is not too strenuous though, you've got or have had a serious systemic illness that has been masked by Pred not cured.
Thanks. I appreciate the thoughtful comment. I think the faster withdrawal is probably due to the Actemra. I have found that exercise, if done carefully, makes me feel better. I had lost a lot of muscle tissue and wanted to rebuild. In the beginning I could only take slow walks. I found the some days I felt energized and other days I was exhausted. Because of the immunosuppressant nature of prednisone I didn't go to the gym until I got down to 10mg. I am now able to do regular workouts, but I'm careful not to overdue it.
Maybe now a reduction of 1/2mg might help? Or, if you are not already doing so, you could try spreading the reduction so not just going from every day one dose to every day the new one:
(other versions are available).
At this level your adrenal glands have to return to duty - the very high dose and the few months you have been above 10mg has been enough to shut them down. Actemra or not, now that has to sort itself out. That could account for the length of time you have the withdrawal discomfort.
I think I have more questions than answers.
What has your taper rate been? How did you go from 80 to 8 in 5.5 months with 4-6 week taper intervals ? I understand that the Actemra allows a faster taper since the IL6 levels are controlled so you are less likely to flare. And since your inflammatory markers are wnl, sounds like you are on a good track.
What is your taper rate now?
Do your headaches and fatigue subside completely before you taper again? Do you receive the Actemra at the beginning of each taper or on a monthly basis independent of where you are in your taper?
As for your question, I think if your symptoms are resolving at the end of each taper, it is a good thing, whatever the source of the symptoms. It is very hard to tell the difference between a taper reaction and GCA/PMR symptoms surfacing because of less Pred.
If I recall correctly other Actemra users who post here have had similarly rapid tapers. But several have had flares at the lower end. Those on Pred alone often have problems there too. As PMRPro said, around 7mg our adrenals have to start working again. I'm at 8.5 and I think I've run into some symptoms of due to that, fatigue, and an episode or two of low blood pressure. I don't think Actemra does anything for the adrenal insufficiency that develops due to Pred.
So please give your adrenals some time to come back online and regulate itself.
Do you have any idea how long you will need to take the Actemra? I wonder if it might be possible for someone to be done with GCA/PMR due to the Actemra but still need Pred due to adrenal insufficiency.
Thanks Hindags--I was dropping 10mg each time I saw the doctor--which was at about 2-3 week intervals. When I got to 10mg the visits to the doctor stretched to 6 weeks and I began dropping 1mg each time. My lab tests continue to be well within normal limits. I asked my doc if I could drop from 8 to 7 in three weeks instead of 6. She reluctantly agreed. After reading your response and others, I realize that it is important to go slow at this lower level. My original question on the symptoms arose from the fact that my "symptoms" are subtle and consist of occasional unexplained headaches, some sleepless nights, and sore muscles which may or may not be attributed to either the prednisone withdrawal, the original disease, my exercise program, or just the ordinary vicissitudes of life. I have come to realize how fortunate I am compared to many others on this blog
GeorgeZiser. I agree you have been lucky. Until very recently I've considered myself in the lucky group. Good energy, able to work , tho slowed down a bit. Lately I've been starting to get some late afternoon weak/wobblies, feel it in my legs and thighs, and some fatigue which I get through by keeping active at a slower pace. Also some low blood pressure. Also feeling more emotionally sensitive and less sharp mentally. The latter two threaten my ability to continue work as a clinical psychologist. I went to visit my brother, 83, over the weekend, in LA. Flew from SF on Fri and back on Mon. It took more out of me that I remember.
Don't know if this applies to you, but it is a good read as one tapers below 8: ccssassociation.org/patient-...
"how to separate the tapering symptoms from the possible GCA/PMR symptoms"
Hi George - this is the eternal question and I've never met anyone (medical or otherwise) who can answer it definitively. And believe me - I've asked it enough times. Below 10mg of pred daily all I can suggest is slow the reduction right down. I'm supposed to reduce 1mg daily each month (currently on 5.5mg daily) but I find my body takes it better if I drop 0.5mg and wait till I feel ok before dropping a further 0.5mg. This can take 3-4weeks for each 0.5mg drop and I just have to monitor my aches and pains till I feel ready for the next drop.
Most folks here say the same "listen to your body" is the regular advice - and bear in mind we're all different and respond at different rates. So long as your bloods tests stay constant and you don't suffer any flares, a slow reduction is much easier to take until the disease burns itself out. Also look at PmrPro's "dead slow reduction" method. Hope that helps and welcome to the forum.
Hi George, My experience with GCA is almost identical to yours. I got the diagnosis 19 months ago. I mmediately went on 60 mg of pred and went down 10 mg every 2 weeks then went much slower till I was off . At the end I began Actemra infusions. My biggest complaint was EXREME fatigue. Barely could walk sometimes. However, in the last 2 months I am better all the time. I now go to water arobics 2 days a week, do stretch classes 2 days a week and another exercise class the 5 th day. My dr is considering taking me off the infusions in January. I am in constant thankfulness to God for the progress along with the meds.
Hi Buddy-We are almost the same except that I am getting Actemra while still tapering from prednisone. I agree that fatigue was the biggest problem during the early taper. For me it was most evident until I got to 10mg and began to get back to the gym. It is great that you are completely off prednisone without any reoccurrence of the disease. That is my goal!
I am hovering around 10 but going down to 7 makes me really tired.
I have been told that having been on steroids for five years my adrenals were unlikely to kick in and not to worry about carrying on taking steroids which is around about the body makes naturally.... takes the pressure off! Any comments from Aunties?
My rheumy not keen for me to take adrenal test.
I like the concept that you don't need to worry about trying to get down lower yes. I hope someday someone tells me that! But he isn't entirely correct: I know several ladies who had GCA, so higher doses, and were on pred for 5 or 6 years, finally getting of pred altogether. It can be done.
Not sure why he's against you having the test - but I don't think there is much point unless you can get to 5mg in the first place and then experience fatigue. If you are at 7mg or above to manage the PMR that is the sort of dose you will need as a supplemental one. And I know people who will tell you pred is preferable to hydrocortisone which is what is otherwise used for adrenal insufficiency.
Thanks for that - I started with 60 for the GCA 5 years ago so I guess getting down to around 10/7 is something! I am on hydrocortisone which I believe not as strong but not sure if the fatigue is related or just getting to that age!
.... I feel so much better in the sunshine not sure if that’s mental or physical!!
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