it’s been over two years since posting, but I read and appreciate everyone and feel I know many of you . PMR for 4 yers now and GCA for two. When diagnosed GCA from a pet scan I was put on a high of only 30 pred after being down to 5 after the first two years. Told it was enough as new literature indicated less needed . The symptoms were always ear pain, scalp pain , head jabs. That’s it. After over a year, ear finally felt unplugged but still pressure on left side of my head. I am now on 3 pred. I have been on 3 for about 3 months but I have no energy, no stamina, don’t eat that much As usually feel unwell. Can’t decided if it’s the pred, the adrenal insufficiency, or the condition itself. Don’t want to raise pred as anxious to be off as everyone. I don’t get headaches but I do get weird surges of pain in my head. Almost like a hammer tap here and there. Bloodwork good , and pcr from 46 down to 1. I feel quite atypical for the GCA . What to do now? Sick of feeling sick.
Sick of being Sick.: it’s been over two years since... - PMRGCAuk
Sick of being Sick.
I honestly don't think this fad for lower starting doses does anyone any good. They already showed that the patient started with the 3-day pulse therapy overall have a lower accumulative dose and a better tapering history. But what do we know - we're just patients.
However - you are waiting for your adrenal function to perk up and even with almost PMR doses, that is a problem.
Good to hear from you - but at the same time, sorry to see you here xxxx
How long does it usually take for the adrenal function to perk up, days? Weeks? Months? I could sit on 3 and wait. The pressure on the side of my head varies in intensity. The ear tolerable , just need the energy to live half normal. Thanks for replying.
Months rather than weeks usually - and if it were me I would sit on 3mg and wait to feel significantly more energetic. That's the sign things are perking up
I can do that . It is actually encouraging to think energy will come back even if it is months. I put on a brave face for family and friends. Truthfully, it’s the life of a couch potato. Not what I had in mind. Thank you.
I know exactly what you mean, I'm on 6 mg, feel ill, drained most of the time.....I don't know how long it will take to feel better, or at least begin to.....but what else to do other than be patient.....reading on here it differs quite a lot with adrenals starting to work and provide energy etc.......we are all different......not easy but we have to keep positive...
Ditto 😔
Ditto! Exhausted all the time.
Took mine about 8 months whilst reducing very slowly from 6mg down to 3mg… and can take up to a year after coming off Pred to be fully functioning ..
Have a look through this post -has links to all things adrenals! /
healthunlocked.com/pmrgcauk...
..and as PMRpro says, absolutely no rush to reduce -in fact the slower the better…
Thank you. It’s sad to think of feeling so unwell for so long waiting, but no choice by the sounds of it. I certainly knew nothing of all this 4 years ago when I naively began taking pred. Can’t help but wonder if my body would have cured itself over a shorter period of time without it. Just venting! I try not to ask too many questions as time consuming to answer everyone and many are the same problems of course. I read and read but still have difficulty understanding it all.
Actually mine sounds worse than it was - I only had random bouts of fatigue -certainly not all the time, nor any other symptoms of adrenals stuttering…so I didn’t feel unwell, just bemused as much as anything..not difficult at the best of times 🤣😂
But I only had GCA, not PMR, which I think lingers longer,..and as mentioned by PMRpro, pretty hefty doses at beginning (for obvious reasons if you know my story) which may not be particularly pleasant at the time but certainly makes a difference to the rest of the journey.
As for body curing itself -unlikely, and highly dangerous with GCA -I had 18 months without Pred and it got progressively worse; few more days and I could have been totally blind.
PMRpro had 5 years undiagnosed and it didn’t cure itself.
Only 2 examples maybe, but not worth the risk…
..and never be concerned about asking a question, yes there are lots of answers in the FAQs , but we’d all much rather you asked than sat worrying. 🌸
You are so kind. I have sat worrying, but already feel better with my concerns out in the open. Guess I really do know pred the only hope. I am unhappy that my start was just 30, perhaps with 40 or more I wouldn’t have the head jabs, etc. However the pred has not been kind to me. I usually feel worse with it, dizzy, muscle loss, weight loss, hair loss, etc. Fatigue the worst. I am perhaps stuck on 3 for a long, long, time but the hope is real. Thank you.
Agree about the starting dose, and things will improve. It may take longer than you would like, but it will get better….honestly.
..and don’t keep it bottled up, that’s why we are here…please remember that.
Not necessarily at all - my PMR is still alive and well after 18 years, I have been on pred for 13 of thise years. There is a group of us with similar stories - all relatively young when it started and with either very delayed diagnoses or seriously messed about by doctors forcing dose reductions in one way or another and causing flares and relapses. Unmanaged PMR seems to drag on and on ...
Wow, the complexity of it all. I will talk to my rheumy about it. Time to get brave. Never thought it could be all three. She suggested methotrexate at last visit and I said no. I have read on here doesn’t help everyone , especially when at such a low dose as I am now. Appreciate your reply.
I have had GCA for 5 years and now feel it is under control thanks to tocilizumab. When i have a GCA relapse i have a kind of shunting in my head. I am now suffering with a bad foot and can hardly walk and like you am really fed up being sick. I would try putting up pred to 5mg which is still a low dose. It is generally agreed that 3mg is fine. Hope you get well soon.
I agree with you Chopin 002. I have been tapering from 15mgs. for two years. When I got to 3 everything went wrong. No energy, dizziness, nausea, lack of appetite. My rheumatologist referred me to an endocrinologist and I had to wait three months for an appointment(I guess we have a shortage of specialists). In the meantime I felt so bad I figured I would continue dropping the dose as I couldn't feel any worse. In the next six weeks I had two whole nights of vomiting and diarrhea which I assumed was signs of adrenal deficiency.
Today I finally saw the endocrinologist and got the tests done so I will know in a couple of days where I stand. If my adrenals are not up to snuff I am stuck with prednisone which was the one thing I didn't want. She said the usual dose is 5mg. but I doubt that I can be persuaded to go to the that level after two years of reduction. Maybe I have to live with the fatigue and weakness and hope that the adrenals kick in somewhere along the line.
Wow, sounds exactly like me. I will just sit at 3 as I can tell a drop would be even worse although I did think the pred might be the culprit. No intentions of increasing either. At least it sounds like improvement will come eventually. Finding out it is just a game of patience gave me some hope. I also believe diet plays a role although not usually hungry. That’s for the reply and good luck.
"I had two whole nights of vomiting and diarrhea which I assumed was signs of adrenal deficiency."Not merely adrenal deficiancy - a threatening adrenal crisis. The worst thing you could do was to reduce the pred dose even further. It takes time - it is a slow and gradual process as the system recognises it needs to produce a top-up amount of cortisol to being the corticosteroid level in the body up to what is required - and that changes every time you reduce the pred dose. Some top rheumies leave patients at 5mg for months - plenty to keep you pretty safe day to day but enough to tell the system more is needed. Until you get to 3mg you can't get a reliable assessment of how much cortisol your body is making - but patience is what is is required at this point.
You are only "stuck with pred" if that doesn't happen and if you ask others on here they will tell you that at 5mg they had no own adrenal function, at 3mg it was starting but still not enough and at 1.5mg there was a massive improvement. But it took MONTHS, not just weeks.
Interesting , Glad you are feeling better. I’m really happy that I put my problem out there. With all this info confident I will get better too . It’s really quality of life we are all wanting.
Good news!! After being on pred for something like 3 years for GCA and feeling "half well" for all that time I suddenly feel wholly well. I am on 2.5mg a day. Had given up on ever feeling well again. So there's hope for everyone out there.
Good…look forward to welcoming you to club zero as well -but don’t rush things. Feeling well is good enough for now…
When I developed adrenal insufficiency I had been off pred for a few months. I can not express the amount of exhaustion I felt. It was overwhelming. I was put on hydrocortisone 20mg which is equivalent to 5mg pred. I wonder if you went up to 5mg if you would notice a difference in your fatigue. It might be worth trying it since it is only an increase of 2mg. Also you might want to try to spread that dose (if possible) into 2 doses to spread it out thru the day.
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