Hi had health issues related to PMR since 2017 I am also type 2 diabetes.
Been up and down on pred, since Han this year tried to lower dose going 1/2 mg every 2 to 3 weeks started at 7 mg now on 4.
I'm feeling shit, in a morning feel like I have a hangover, headaches, nasal ache, arms ache my legs are so heavy don't have to walk very far before feeling tired and sickly weak I'm so down. I have a meet with my diabetes nurse next Fri, what should I say, what should I do. I don't drink, I don't smoke, my pastime is golf but just lately have had to use a buggy as my legs ate so weak. Help/Advise please.
Thanks Carl
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Even only 1/2mg every 3 weeks at this stage is probably too fast. About 7mg you enter adrenal territory - and here be tigers!!!!
The return of adrenal function after a long time of suppression due to the pred is on a light switch flicking, it is a slow process, more akin to a very sticky dimmer switch. You need to go slowly and in small steps, and once you start to feel unwell at a new dose slow down even further until you feel better as your body gets used to the new lower dose - before starting it all over again with the next step down.
What dose did you last feel reasonable at? You have to deal with some effect of low corticosteroid in order to get the function to return but it is best done at a dose where you can nearly function rather than going in hard at a lot lower dose.
7 mg for some time hence why I decided to come down something my doctor and diabetic nurse are keen for me to do although I do get the feeling neither gas a good understanding on this delibitating condition they are more focused on my colestral, my blood pressure my diabetes even though thus condition makes me feel damn aweful everything us at effort ar tge moment I walk up 2 sets if stairs and I'm knackered ;-(
Unfortunately adrenal function seems to fall by the wayside with specialists in other things. I’d say the fact you’ve been on 7mg for a while is exactly why 0.5mg every 2-3 weeks is too fast. That would have floored me due to slow to respond adrenal glands. I was doing 0.5mg introduced over anything from 6-14 weeks. The lower I got the slower I got. 7-5mg was the absolute worst period and yes you feel like you have the hangover of all hangovers without the fun beforehand.
I have to say I had to fight my corner a bit to do it at my own speed even against the Endocrinologists because I knew I couldn’t go 1mg per month. I did ask once if they were certain that I wouldn’t have an adrenal crisis and how to deal with it. That tempered the enthusiasm a bit. I always argued and constant forward direction in dose reductions preferable to yo-yo’ing and nobody could argue with that. Also, they couldn’t exactly refuse to prescribe the Pred. I don’t mean to go into battle mode but sometimes a little polite resistance/questioning helps.
My point is that from 7 to 4 needs to be mega-slow and you seem to have gone too fast for you. What about trying 6mg and see if you feel noticeably better. Then aim for 5mg with 1/2 + 1/2 mg drops but using one of the slowed tapers as well. That should keep them reasonably happy you are reducing.
And the down-ness is also part of the adrenal problem.
Ok thx. I was on 7mg in Jan this year 5 months later I am on 4 mg. I cannot go on like this and certainly need to do something so raising again seems the way to go. Carl x
That is far too fast to allow most adrenally suppressed patients to keep up. Try 6mg - unless you have PMR symptoms in which case you might need more. But 1mg every 3 months is more reasonable now.
If your cortisol level is insufficient it can make one feel really low and then anxious because there is this deep seated fatigue that can feel overwhelmed and insurmountable. I’ll say it again, 7-4mg with 0.5mg every 2-3 weeks can be way too fast for the adrenal axis to catch up. Have you looked at the adrenal section in the FAQ’s link to the right of this page? Make yourself an expert so you can advocate for yourself more effectively, especially when you feel vulnerable. Ultimately it is your choice.
Another thing you can do is ask whatever practitioner how they would explain your symptoms otherwise given how debilitated you. As PMRPro asks, when did you last feel ok?
You are obviously not taking enough Pred to be able to lead a full (ish) life and adrenals as have been said are being affected along with the low mood from low cortisol levels. I too keep trying to go under 5 and get knocked back every time.
Diabetes is a separate issue and they shouldn't be steamrolling you to decrease when its not treating your first issue. You must insist that its too low and that you want/need more understanding of the very very gradual taper that you would like to achieve. When I try and taper I too feel like total shit for days, I am moody, difficult and being in constant pain and frustrated because we have stuff to do makes it so frustrating. I hope you have taken some positive feedback here and that you are feeling more determined to stand your ground. As has been said to me before on here by Dorset Lady - why have all the side effects of Pred with no benefits when its not enough for your body. Bless you - sit in that. buggy and then try not to taper too quickly - good luck with the diabetes clinic
I am sorry you are down. I took nearly 2 years to get off 7 a day. Kept going down and feeling bad. Then I started reducing by .25 (quarter of a pill with a cutter) Now down to 5 in a few months. Don't listen to people who know nothing about PMR/GCA - this forum has helped me FAR more than anybody else! Although the surgeon who replaced my hip last year did say I might be on 7 for a long time. Accepting the PMR can last for far longer than most people think has helped me be patient. I am about to start reducing again - when I can find the pill cutter! Good luck.
I think you are reducing too fast. Remember neither your doctor or diabetic nurse have PMR or are on steroids, so it is much easier for them to say reduce!! If you feel rough tell them and say that you feel that things are none too good.
Thanks to you and everyone else on hear for thier support. I feel sure it's Adrealin issues the pulpertations are where they are situated, along with aches and pain's, head cold like symptoms in the morning, and completely feeling wiped out all the time supports this.
Nothing much to add other than to agree with PMRpro and SnazzyD on too fast a tapering programme -and most of blame being adrenals -so maybe have a read through this -
But the fact that you mention a return of aches could also be a sign your PMR is not under control -another good reason to slow down the tapering.
Not easy I appreciate when doctors are concentrating on negative effects of Pred. So as suggested maybe go in with an alternative tapering plan next appointment stating your concerns on trying to reduce too quickly…
Is the fluttering feeling after breakfast - could also be associated with adrenals not working as well as they should be...but obviously if it gets any worse then needs to be investigated...
Think everyone else has already said it all. From 10mg downwards I tapered by 0.5mg every 5 weeks and even then only started the next taper if all was well so it could have lengthened to 6,7,8, ? weeks if neceesary. I have been on 2mg for a few weeks now and have no intention of dropping lower until sometime in July. I've had a pretty easy time compared to many but wouldn't have considered or coped with 0.5mg every 2 or 3 weeks.
Have you done everything you can to control the diabetes? Cut out all simple carbs. No bread, potatoes, rice, sugar etc? If you can get more control of the diabetes they may pressure you less to taper. As others have said, the adrenals don’t listen to medics schedules. Slow and steady needed with tapering at the lower doses.
I did more or less the same as you last year. If it is any comfort I have just got to 5mg from 6mgs in January. Rheumy would like me to go faster. GP not bothered. I just don’t want to go through what happened last year again. I ended up with other medication for the heart and right back to 10mg for ages. I had got to 2mgs. Follow the above very wise advice given
Also I find total confusion between ai and flare. I think at times it is a bit of both.
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