Hi -- I'm at 6 mg down from 60mg, hopefully with a good shot at zero by this fall. Actemra, too, once per week. So far, the move from 7mg to 6mg has been the hardest. Lots of fatigue over three days. It's a 14 percent decrease which isn't a small amount. I am sure it varies, but anyone know when my adrenals will start functioning? I expect that happens at some point when I hit the mid- single-digits and am wondering whether my fatigue from 7 to 6 has anything to do with that? Cheers, this group is a blessing.
(GCA relapse, temp eyesight loss only symptom, ESR/Sed normal since diagnosis).
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They don't just suddenly start functioning - the return of production of cortisol is slowish and at first unreliable. There is a very complex feedback system that has to get back into balance with a whole bunch of factors. It has always been said that it starts about 7mg or so but it can be sooner or later and the main sign people complain about is fatigue - many expect things to improve below 10mg and are very disappointed when the fatigue is worse!
I know you are on Actemra but you still need a slow taper at this stage to make the return of adrenal function more comfortable. You have the advantage that the Actemra takes away the concern the PMR/GCA isn't going to be managed by the lower dose so it is really only the adrenal side of things. Although half of patients don't get off pred altogether with Actemra.
Hi PMRproWhat do you mean that half don't get off prednisone with Aftemra. My Rheumy mentioned putting me on A to help with prednisone reduction. Thanks...
In the clinical trials about 50% of the subjects were able to get off pred entirely, the other half got to a much lower dose but commonly got stuck at about 8-10mg. This is because there are at least 3 mechanisms that create the inflammation in GCA but biologic drugs are extremely specific and Actemra only works for one of them so if the other two are involved, they continue. Pred works to combat the inflammation they create.
Around the level you are at now for most people - but can be anywhere from about 10mg to much lower….and fatigue is certainly a sign that your adrenals are struggling.
My experience of adrenal function returning was rather like, now you see me, now you don’t, now you see me…. From 7-5mg was the hardest because the dose was a still a bit too high for the adrenal axis to be challenged to work but still not enough to cover my daily needs. It’s a fine balance between keeping challenging the system to work by presenting it with a deficit and pushing it too hard. For this reason 0.5mg drops are less of a shock to the system and I introduced the new dose in slowly, not in one drop then 100% new dose. This period was anything from 4-14 weeks depending on how I was. The other thing I did was adjust my life to help my body cope with the low adrenal function rather than going about business as usual and expecting my body to cope, that usually ends in tears. It does get better but this bit can be a long slog for some that we aren’t warned about. I have noticed on some forum users’ posts on Actemra is that the docs often forget this bit and assume the patient will keep galloping to zero so it is a nasty surprise when they start to feel awful again.
I found reducing by 0.5mg below 10mg was better than 1mg. My adrenal glands started to complain about being woken up around 6mg. By 5mg I was totally knocked out with fatigue.
I'm tired all the time. I need to rest every afternoon in order to keep going for the rest of the day. I've been at 4 with an occasional dip to 3.5 for a couple of. months. I asked my doc to test my cortisol and it is 6.6ug/dl. She would like it to be higher but she just said slow and steady. (I've had PMR for 5 years.). Anyone else know if 6.6 is an ok number for cortisol?
I keep busy all morning out and about then cook a proper lunch but by 4pm I'm completely knackered and in bed asleep for 1 hour which revives me ready for the evening. Very inconvenient but the fatigue is worse now since I dropped to 2.5mg nearly 3 weeks ago. I used to lie down and doze or just relax, now it's the sleep of exhaustion. Feeling very grateful to be at this level after 6 long years. My OH is 82 and like a spring chicken, no pills, so it's hard for him to understand especially as I was like him before PMR hit. Onward and upward.
The “busy all morning” is a no-no really. Just do a few gentle thing, then rest and do a few more - then stop for the day. PMR is the boss, not you.Good luck🍀🍀🍀
The morning is when I have lots of energy. I know it's the adrenals and perhaps things will improve over time. Today I'm driving 30 miles to see a very stoic infirm old friend with pmr for 19 years and widowed. Taking a vegetarian lunch. Will be home before 4pm to drop into bed!
You sound like my husband. He keeps telling me to pace myself and don't do it all in one day. This is me, I'm all or nothing. All done today so tomorrow I rest. Was hoping to get out in the lovely warm sunshine but 4pm now and ready for a coffee and feet up before washing is brought in from the line.
It is not hard for anyone to understand that a long-term illness is very debilitating. Choosing not to understand is what a lot of friends and family seem to opt for.
Think it’s all too difficult for them -and maybe don’t want to know or acknowledge the fact that mum, dad, sibling or partner is not the “same as normal”…
Do people with cancer have the same problem? I don't think so. Being an unconcerned partner/friend/ to someone with cancer would be shameful. But we aren't dying so it is easy for them to rationalize their lack of care. I am feeling less and less like make excuses for them - I think it is ultimately careless, selfish behavior. I see a real difference between those who make an effort to understand and those who don't engage.
You may be right about the “cancer” effect -although much can go into remission if treated early enough it still has the ability to shock people in a way that other illness I don’t.
My husband had coronary heart issues for about 18years which on more than one occasion almost did for him, but he rallied and off we went again. He actually died of liver cancer which (even if diagnosed in time) ironically couldn’t be treated because of his heart issues. ..and you’re right friends were probably more sympathetic about that.
But you are also right, some people engage, others don’t!
It depends. My husband had cancer in his early 40s when our daughters were 10 and 12. His mother lived in a granny flat in our biggish house and my mother and brother lived about 10 miles away. He was very ill initially - had it not been found by his colleagues (the GP was worse than useless) he would have had about 6 weeks without treatment. You can imagine what it was like with every 2 or 3 weeks a 5 day chemo session, just feeling almost human and the next lot was due.
My mother and brother didn't lift a finger to help. I asked my mother if she'd come over to visit my MIL to relieve my time a bit - she came once. My brother never appeared. Their reason? They couldn't bear to see him looking so unwell. Not sure what they thought it was like for me!
One church friend, our daughter's godmother as it happened, looked at me as if I was being totally unreasonable - having said, just ask - when I asked if she'd make me some soup to see if he'd eat it. All I got from the church was informed I didn't have enough faith and I saw another woman deliberately cross the road to avoid having to speak to me. He was in hospital shortly before xmas for surgery - an hour and a half away. Visiting was a nightmare - only one person offered to drive me over.
And the GPs continued the way they had started - total refusal to be helpful when I asked could they give him his inbetween medications as liquids as he couldn't swallow pills. Claimed they weren't available - I had checked in BNF first. That was easy enough though - the hospital changed them and the GP then had to follow. Never once in the 9 months he was ill did they ask how I or the children were.
This was so sad to read. And even more tragic is the fact that it didn't seem surprising. BTW I don't believe it is only relates to the time we are living in...I remember my mother telling similar stories of when she was a child (now 100 years ago) when she lived in great poverty and selfishness abounded.
Complete callousness on the part of the medical profession is also familiar.
But sometimes kindness does appear in unexpected places and in unexpected ways. I have found some extraordinarily caring people here...who take time to write and lift my spirits with wise words. It is often the small acts of kindness that are so meaningful. You need to be vey tough to endure life's challenges.
You poor thing! You’ve suffered for years now yourself - and, at the same time, spent hours advising others. Who (and “where) will someone be able to help/be there for you?
It's because I know what it is like - I don't want others to have it the same. I had 5 years of undiagnosed PMR - there is no need for that when we educate patients who in turn educate their doctors. And Sarah Mackie is right behind us
That is just so sad PMRpro, and it must have been hell for your girls too, not to mention your husband. Families can be wonderful, but they can also let us down horribly, you're not alone there. And as for your church, well, I hope you have moved on. I bet you are close to your girls though, having been through such sadness together. Perhaps all of this is partly responsible for making you the empathetic person you are. 🙏
I certainly headed for a different one! And found a fantastic GP in a different village - who would drop in when passing to ask how we all were even before OH realised THIS was how a GP should operate! He had a misplaced sense of loyalty to the first lot.
On another note, apparently my Rheumatologist has had a response regarding my attempts for an extension of TCZ. She doesn't work Mondays so hopefully I will hear something on Tuesday.
didn't have enough faith. Well, by that reckoning, nobody would ever die, would they?And if noting ever went wrong, you wouldn't need faith. But unfortunately, some people think faith is all you need, and do not bother to think it through. That is really tough for the people on the receiving end of the comment, though. Some churches!
Unfortunately I wasn't in a mental state to manage! Though that would have also been my fault with that lot. The Rector was eventually found guilty of all sorts of things, embezzling church funds - but someone paid his fine ...
I read once that it can take the same number of months as you have been on pred for adrenals to start up again, once you go under 7. I would also caution you to not go too fast at this stage. Now is the time to really slow down the taper, not sprint to the finish line. Listen to your symptoms. Everyone is different but it took me 18 months to go from 20mg to 9mg and another 18 months to go from 9mg to 2mg. The fatigue definitely got worse under 7mg, but I was also dx. with celiac and colitis recently which probably contributed to the fatigue.
So glad I've read these posts. Currently on 6.5mg, 1st June I'll be dropping to that dreaded 6mg. However, the last time I attempted 6.5mg a few symptoms of GCA appeared so increased to 10mg for a few weeks. I too have quite a lot of energy in the morning and didn't realise that the fatigue is due to adrenals trying to work. I find taking a double squirt of my B12 mouth spray does push me on a bit to finish house-work etc. Wish I could take a nap in the afternoon....I watch hubby snoozing in the conservatory and feel so jealous. Always an early night these days. But last night was one of those nights that I just couldn't sleep, and I mean all night long....put telly on at 4am. Came down at 7am exhausted but got second wind and got cracking.
Why “the dreaded 6mg” ? If you have that mindset, you are likely to have issues….
It’s just another taper, think of it as such -and do it when it feels right… if you have it marked out in your mind that it must be 1 June that’s another stress…
Know you have a lot of pressure with your husband at the moment -so might be better to stay at dose which is good rather than put pressure on yourself to taper …just saying..:take care 🌸
Good advice and thanks Sue. Bless him, I feel so sorry for him. Daughter has now taken over and said enough is enough. Been given the wrong info from a nurse, she said that after an iron infusion it doesn't take 6 weeks to absorb, it's immediate according to his kidney specialist. He's such a lovely man and said he will write to the Pre-Assessment Team to give his advice re hubby's kidney function which he says is stable for surgery. Got to say the nurse that saw Jen (daughter) on Friday was lovely and also said she will get the ball rolling, he's been waiting too long being in chronic pain that painkillers aren't touching. Next step to see the anaesthetist. Keeping fingers crossed surgery for June...not been told that, just hoping !!
Depends what the infusion is - the one my husband had does take a few weeks for the level to rise. The only thing that raises the levels immediately is usually whole blood!
Iron infusion. I think they go more on his haemoglobin which is 100.....but kidney specialist said that's satisfactory....just want to get him out of this pain.
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