I have finally managed reduction from 8mgs to 7.5mgs! HURRAH! I can physically see a difference reduction in weight and hamster face / neck in transition stage (strange stage where there is a bit of pred face but lines reappearing! Lovely!) PMR symptoms at bay.
So all good. However fatigue quite marked at present. Sleeping for England! Co-incidence (There never seems to be rhyme nor reason for my fatigue bouts, can't see a pattern to them).
Am anxious about what I should expect, when I should expect Adrenals to start kicking in. How will I know if they aren't?(signs and symptoms). Please advise.
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Marilyn1959
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If they are being lazy the fatigue will persist rather than improving once you have finished a reduction. Though at 7.5mg it shouldn't be too much of a problem - it is as you approach 5mg that it may become more noticeable. Lots of people find around 7mg is hard - it isn't entirely clear why although I would assume it is where the adrenal function is stirring.
But really it is a case of just getting on with it the way you have since you started - and seeing how you get on.
Yep, I found around 7 hard. Very achey and very tired. I just stuck at it and started to feel better. I’m now at 3.5 and doing OK. Still get very tired but it’s ok, I manage. I envy you you’re weight reduction. I still have my moon face, hump and several chins! 🙄
I hope I haven't given the impression I am 'Twiggy' like, since I am far from it so no need for envy (yet!). Just gobsmacked at the difference 0.5mgs has made (almost pred symptoms in reverse) so seems like a bit of a milestone to celebrate! Though when I am at 3.5mgs, as you are, I will see that as a huge achievement. I will think of you sticking at it, if I struggle and use you as my inspiration. Thank you.
Marilyn, thanks. I have to say that I’m lucky to have a Rheumy that says I can take it at my own pace. I stuck with it through some difficult bits because of my own stubbornness. He is fine with me increasing a bit if I need to . I think that freedom of knowing I can do that helps me stay on course, if that makes sense. I will take inspiration from you too and try to seek out my inner Twiggy! 😁
Hi Marilyn. I am down to 5 mgs and like you, have noticed my chipmunk cheeks going down but no weight reduction yet. Face still not back to normal but getting there! I am suffering from fatigue too, though I don't know if it's the reduction or the fact that every day this week has felt like 40 and above with the humidity. It's supposed to cool down tomorrow, so hopefully will more then. Good luck with your reduction!!
It is strange Mikb this 'mid stage' chipmunk face reversal isn't it? I'M looking at it as a bit of a milestone re getting 'me' back. Fingers crossed! Hope it cools down a bit where you are. UK weather has fluctuated considerably necessitating summer wardrobe and winter wardrobe sometimes on the same day!!!!
I also have the chipmunk face I'm going down every second week and I will be on 8m from next Monday I have good days and horrible days, I have what I call the trembles does anyone else get that is it from the predisinone or the tramadol I'm on? Shaking inside and out! I have been told my moon face has gone down abit I can't see it yet! Maybe being kind, my hair is still falling out, can't wait for my hair piece to be ready! Best rheumatologist I've just changed to is not far from your sisters area is at st.peters hospital first appointment go private £220 then ask to go onto his NHS list he offered to me without my asking and he has been highly recommended on this forum regards glenys(jamie345)
I don't know , I was told I could not have co codamol or any of the others only pain killer recommended this started for pain relief for my back before the operation and after, no one has suggested any other pain relief although I have noticed other sufferers are on drugs I've never heard of, tramadol does help I take paracetamol sometimes with them, I was told that the back op might have caused the Pmr/GCA three months later to kick in, more insinuating that the shock sometimes triggers it off! Could be! But I have called many times asking for some help, is tramadol bad for me?
Tramadol is an opioid and is addictive, it should not really be taken long term but does seem to work for most people apart from the fact it is useless for pred. After Tramadol people tend to take morphine which can be horrendous and again is addictive and should not be taken long term if possible. There are morphine patches.
When you put all your story together Jamie - the tramadol is OK. Dr Hughes doesn't think you have PMR, possibly because the Tramadol helps you and it seems the pred doesn't. It will probaby all sort itself out in October - and until then if Tramadol helps you that is good. Opiods are only really addictive when they aren't used properly - if they are sorting pain it reduces the addictive potential.
My GP does not really know what to give me he put me on tramadol the rheumy I was with said nothing else is ok for me! They have since found out after the Pet scan I have multiple fractures across my pelvis earlier missed by them in July, only found out a few weeks ago, I'm actually so anxious and can't wait to see results of blood and urine test and see Dr Hughes but I'm on the list for cancellations hopefully, I thought I had a brain but since all this had happened I feel useless!!
Yes, I also shake and tremble. I walk like I am drunk in the morning when I take my wee dog for a walk. I haven't had my moon face for quite a while. Am on 5 mgs pred at the moment, will try to go down to four and a half at the end of the month. Have had GCA for 2 years now and hope to be back to normal this time next year unless I have any flares and have to up the dose for a while. I am exhausted though and not sleeping well now, as I was when I first started on Preds at 60 mgs
I found between 6mg and 3mg I was fatigued for no apparent reason. But the only thing you can do really it keep reducing slowly , very slowly - a slow taper and at 0.5mg a time - to give them the best chance to spark!
If it becomes really unbearable and you get other signs of adrenal insufficiency like nausea then request a test to check if they are actually capable of working.
Thanks DL. The article is helpful. I am indeed doing a very slow taper (as I have all the way been intolerant of significant jumps). I need to heed the caffeine and sugar advice! In addition cod liver oil and vitamins info is most useful.
Hi Dorset lady sorry to gate crash but can you tell me if going down 5m every second week at the request of doctor Rod Hughes I'm on 9m but next Monday I go onto 8 I've had one bout of really bad nausea a few times, I have bad days as usual nothing really has helped. Being on predisinone since this all started dr Hughes says he does not think I have PMA I don't have an appointment my second visit till middle of October with him, but what do you think? I have been told I have multible fractures missed on the pet scan I had in June which they originally missed, I'm so confused do you know anyone who has the same? I'd love to be able to talk to someone, because they missed that they apologised but I changed rheumy to Dr Hughes just recently?
Sorry I’m a bit confused. Are you going down 5mg or 0.5mg every second week?
If you’re on 9mg today, but going down to 8mg next week - then neither of the above doses make sense.
I wouldn’t dream of querying Dr Hughes’ view that you don’t have PMR, after all he is one of the good guys, and can understand he wants you off the Pred. But what has been suggested as the way forward for you?
As long as you are doing what Dr Hughes says that is OK - he doesn't think you have PMR and so there would be no point being on pred. So he has told you to reduce so he can see what IS going on. There is always a chance it is PMR but until he sees you without pred it is very difficult for him to get a real impression.
If your box of pred says 5mg - do you also have 1mg tablets? If you don't, how can you go from 9 to 8mg? Your appointment is obviously timed for you to be off pred by then. But if you start to feel unwell after about 5mg don't hesitate to contact Dr Hughes secretary and ask for his advice.
He says it could be melanoma or one other desease but unfortunately I've misplaced the paper he gave me, he said about so many have the exact more or less symptoms as PMA, unfortunately I also have multiple fractures across my pelvis my old rheumy missed on my pet scan, so he wants to see that I think you are absolutely correct about wanting me off the predisinone so he start treatment for whatever! I will contact his secretary thank you for suggesting that as I was not sure what to do if it does make me unwell, I've had blood test last week and a second urine test for something different the nurse said leaving it the air like that did worry me abit, I'll let you know what happens and thank you so much, regards
Thank you that's correct what you have written my mistake again and I will heed your advice and ask questions I must start being stronger in character as this is my life I'm trying to get right, I will let you know how things go many thanks and deep appreciation of advice and help regards.
How were you able to order 1mg tablets yourself? I have to get the surgery to order them from the pharmacy based on my request to them and their agreement.
Well done Marilyn! I had utter deathly fatigue at your stage. 13 hours sleep at night and two or three daytime naps. At 6 mgs the tiredness is much more reasonable. I have spells of feeling completely normal, spells of a kind of fizzing, overwrought energy and unfortunately some early hours waking again. I think this is the Adrenals cranking into life - even little bursts of happiness.
Thanks Jane. You have reassured me once again! Didn't want to admit that, out of a twenty four hour stint the other day, I slept for 18 hours. (7pm - 7am. Took pred, went straight back to bed and woke again at 4pm!!!). Since I effectively 'lost a day' daren't give into a nap at the mo. Youngest son starting uni so preparing for the 'big' move into digs this weekend. Just the emotions involved (mine not his) are wearing me out! Roll on 6mgs!
No Bamber99. I am an ‘Essex Girl!’ Used to have the white stilettos and soft top sports car to prove the ‘Essexness’ in my youth! Those were the days! Now I wear flats and drive a mini! Xx
Thanks for that. I found it really difficult between 8-9. Almost narcoleptic ..like. I have gone back up to 10 as I relapsed and last week seems like a distant memory of meltdown. I feel almost human since increasing. Question for anyone. What are the adrenal glands trying to do when they are "kicking in"?
Produce the cortisol they usually make. While you are on above about 8mg of pred that fulfils the function - it is just a synthetic form of corticosteroid and the body doesn't mind which it uses. Once your dose goes down the adrenal glands have to top it up.
I'm on the last few days of tapering from 7 to 6 1/2 (dsns) and I've just begun to feel completely knackered by about 3 pm... how fortunate that all these responses came at this time so I now know I must hang in there and will spend a month on the new dose before reducing again by halves. Thank you all for the information and advice.
Glad it was timely for you tgca. Keep me posted. Forearmed is forewarned. Hence why this site is so helpful. Learning from those who have trod the path before allys fears I find. The site is also so very active. There is always someone there! Brilliant!
Hi Marilyn, I've been struggling to get down to 6.5 from 7mg so I understand how you feel. I get absolutely exhausted some times, at different times of the day, and I can almost sleep the clock round!!! I always used to be a night owl...bed around 1am -2am and up at 9am...ish (could have had something to do with working nights). But these days I am often in bed by 10 and still don't get up till 9!!! My moon face started to disappear when I got below 20mg, almost back to normal now. I've just read the link DL posted, I might print it out for reference.... and to take it to my rheumy appointment next week and see what she says!!!!!
Well, I haven’t been here for ages!! Everything had been going perfectly well reducing by 0.5mg from 10mg downwards using the slow nearly stopped system.
However, I’m now on the path to 6.5mg from 7mg and I’m really feeling the difference. I only have to do a fairly minor physical job like vacuuming, and I come over all wobbly and hot and have to lie down for hours. Seriously, I’m on 5 days apart today so really only missed 3 lots of 0.5mg over 2 weeks. Such minute doses!
I’m a bit concerned as I’m starting to work after the summer break tomorrow, and although the first week isn’t so bad as it’s enrollment, next week will be v busy.
I’m in a bit of a quandary:
I could sit it out and put up with the malaise and exhaustion until it all settles down - assuming it does (the powering through approach)
I could go up to 7.5mg (bearing in mind I am mainly still on 7mg) and work back down to 7 and sit there a while before trying 6.75mg. (the reset approach)
Or
I could grit my teeth for this week and try 6.75mg next dose instead of 6.5mg (just split the splits again) (the take it more gently approach)
It’s Sunday now and my next drop dose is Thursday. Any helpful hints would be fab!!
Incidentally, I reckon powering through is how I gave myself PMR in the first place...😂
Since you have to work I would go back to 7mg where I assume you were fine - wait a month or two and try again. This is adrenal function territory as well as managing the PMR. You have the stress of work - and students!!
HI queenhermione. Damned if you do, damned if you don't! However I agree with PMRPRO, since you are starting back to work after summer break. Timing these reductions around lifestyle is key for me since I work part time. If I am busy at work I don't taper. Fortunately I managed to time mine around the summer holidays so that new dose is well established before I return to work tomorrow following summer break. Fortunately my fatigue has lifted in time for me to help my youngest son move into his new digs yesterday since he is starting uni. We have made a weekend of it, but yesterday was very hard both physically and mentally. (had a few tears during private moments).This morning I felt like I had been run over by bus!!!!!! Applied ‘powering through’ approach and am feeling better again now having had a late afternoon nap! Need to get to Tuesday before I can collapse in a heap though!!! Hope all goes well for your return to work.
Replying to both of you helpful people (thank you).
I remember the uni thing. My daughter wanted me to stay - the weekend extended to about 4 nights and in the end I was happy to leave her😂😂
I’ve been waiting for a tricky drop - hadn’t had one before. This looks like where it’s up to my adrenals to do some work and they’re sulking.
Anyway, my summer break drop was to 7mg and so the 6.5mg was pushing it. I’ve decided to go to 7.5mg for a reset for a week then start reducing down to 7 again. Once I get there I’ll stay there for a few weeks before starting again- this time to 6.75mg. That’ll be entertaining; trying to halve the halves. You end up licking the grains. Sneaking down by 250mg at a time might give my adrenals less of a surprise.
The Prednisolone side effect that’s hardest is only being allowed 5 to 6 hours sleep a night. Last night I got home from work at 9.45, in bed by 10.45 and slept for virtually 9 hours. And that was a shorter day.
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