A specific question please. I am hoping to speak with my GP tomorrow (mentioned on another post and will update). I am on 5mg pred. having slowly tapered from 6mg. but with a short return to half-way. Fatigue, lethargy and sweating have increased now and I feel low (as explained in the other post).
If this increase is due to adrenals clicking back in, would I disturb that process by going back up to 6mg which seems to be the lowest dose at the moment apart from the above. It would be helpful to have ideas before I call the GP.
Thank you.
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ChinaWuntoo
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Not necessarily….and I think you need to feel as good as you can……and maybe when you do think about tapering again try only 0.5mg a time and if not already use one of the slow tapers (you may already be).
For many people it take a long time for the adrenals to stutter back into life (me - about 8-9months) - and it usually means a very slow taper with tiny steps.
But with GP’s okay I would go back to 6mg and may stay there for a month or so before you consider next option.
Thank you. Yes I'm using the taper of half mg over 8 weeks (last whole week of the cycle on the lower dose before starting to reduce again). This has worked ok, I think, until a couple of weeks ago - but who knows, stress came into the equation at that point.
It FEELS (!) like I need to stay at 6mg for a month or more - sort of like Dr Rod Hughes advocates - who I mentioned to my GP.
You have to be at a low enough dose of pred to allow the body to recognise there isn't enough corticosteroid for day to day function and poke the HPA axis (hypothalamus/pituitary/adrenal system) to respond to make top-up cortisol - and obviously the lower you can get the pred dose, the better effect that will have in the long run. Unfortunately, in your situation the switchover may mean you are so fatigued that you can't function, so the discussion with the GP needs to cover that. It is a low dose which most good rheumies stopp worrying about - my previous consultant (a physician with a special interest in GCA) said once patients got to 8mg he was happy to play the long game. Sometimes it isn't only about the pred and you - it may be your responsibilities as well.
My problem is that I don't know how to recognise symptoms. It could be Pred? It could be adrenals? It could be age? It could be anxiety? It could be workload? It might even be the effects of lockdown and not having had a holiday for two years? It could be all of this!
All of this I hope to cover in my chat with the GP.
I found that I could not stand the fatigue at 5mg and although I know that it is better not to increase when the adrenals complain I did go up to 6mg which really did relieve things and it did not seem quite as bad reducing the next time. I did stay on 5mg for quite a while then though.
I am feeling the same at the moment boxing between 8/7 mgs mostly 7 now but today feel awful and especially in my eyes and head. No pain in shoulders or hips. Hot sweats and fatigue. I am due to take my husband into hospital tomorrow for the day so it could be some stress but i feel its the adrenals kicking in. Not too sure what to do but i was put on a 5mg BP tablet last week and am due to see a new Dr on Thursday. Hope he can advise me but expect i will learn more from the forum. Yours does sound like the adrenals and the advise from these experienced people help us all. Good luck.
I stayed on 5 mg one year due to fatigue. Then I tapered with a new method that I found out myself. One day new dosage, two days old dosage, and I repeated this once more before tapering. I succeded to come to 0 after 3 1/2 years. If you google you find this under Ragnar method. Then some persons developed this further and named it the DSNS method which you can google
Loved your post today ! Am in exactly the same position and am expecting a call from my GP so now have a lot of good info from the replies to your post to speak about !! Love this website 💕
I have had the same problem tapering down from 8mg (been on pred for nearly 4 years then for GCA), kept trying to taper v v slowly but felt terrible. Eventually sat at 7.0 for a year until I was able to gently gently taper it down. Had a synthacen test showed zero function but now have got to 5.0mg & the Basal Cortisol test showed they are stuttering into life.The wonderful thing is I am feeling better, can do more & when I overdo it don’t feel quite so ghastly as I used to. So, having almost given up hope that life would ever feel normal again I can feel some joy seeping through my bones!
OK so tried for 45 mins to get through to GP, then another 15 mins for them to speak to me only to be told there is a shortage of GP's (I bet it's down to the lorry drivers 😈) and they cannot make an appointment. So I've written to the GP and told him what I am going to do - go up to 5.5mg for a month - and asked him to call me if he disagrees (he had a letter from me a week ago detailing my present challenges). We shall see if there is any response.Meanwhile, I couldn't do this without the help and advice and support here - for which I am very grateful.
It IS fair to say the shortage of GPs is added to by Brexit. Lots have come home - and few are coming to replace them. And Covid has sent loads out of the NHS in general. Not doctors - but I have tried to encourage my daughters to head elsewhere. Their workload is unbelievably relentless.
I use NHS EMIS patient access to communicate dosage of Pred when I request prescriptions, eg taper from 7 to 6.5 (that’s where I an, incidentally). In a previous discussion f2f the GP when asked if he was ‘happy’ he just said “it will take you longer”. End of conversation. I interpreted his words as ‘do your own thing at low doses’.
I to am due to speak to my G P today re my preds he says that it is a Meds review I suspect that he wants me off the preds as he has suggested to me on a previous occasion that I have been on them too long . I to have had problems reducing when down to the lower doses 4mg in my case all the classic symptoms eg tiredness, fatigue irritability, and feeling generally unwell and having to increase my dose to 5mg this has happened now on 3 occasions the last time I managed to reduce to 3mg and to stay on that dose for 8 months before having to succumb to fatigue and other symptoms. I have now been on preds for 8 yrs . Has others have said it is far from easy.
Thank you for this post. Much of what is said in the thread resonates with me. I’m glad I’m not alone on this journey. This forum is invaluable. Thank you all.
I don't know the answer, but this is my experience. When I get below about 7 mg of pred, I started getting the "deathly fatigue." Last year I got down to 4 mg with fatigue all the way, but then I had a flare and went up to a higher dose. The fatigue disappeared but started again when I reduced below 7 mg. I'm back to 4 mg again and complained to my primary care doctor about my never-ending fatigue. She didn't want to hear my spiel on adrenal glands and instead told me to start taking a specific type of vitamin B12. She also prescribed a shot of vitamin B12. When the nurse came in to give me the shot, she said "We call this our go juice!"
Since then I've been taking B12 every morning and my terrible fatigue is gone. I still don't have as much energy as I'd like, but my truly terrible fatigue is gone. Is that because my adrenals have finally adjusted or is it the B12 or something else? I certainly don't know,, but I'm very happy to feel better.
If anyone is interested, I'll add the specific type of B12 my doctor told me to take.
I would like to know the particular B12 suggested. I have a friend who has ME and she started with B12 injections and now takes B12 regularly and says it really seems to help with her fatigue.
It looks like this type of B12 can be called "Methyl B12."
Please let me know if you decide to take this and it helps you. I have no idea if it's helping me or if my adrenal glands are finally working. It would be very interesting to see if your fatigue is lessened by this vitamin. Thank you!
I’ve a similar story, awful yesterday, lightheaded, dizzy during golf but only when standing still, ok if I kept moving. Couldn’t add the score card up properly either. My bp was 117/73, usually 145/80 & a racing pulse. I’m on 2/2.5 now but totally painfree, luckily. It seems to be a balance between the pred dose, daily activity and keeping low enough to encourage the adrenals to fire up. Anyway I intend to try to continue tapering, maybe by 0.25. Those symptoms are gone this morning 🙂
After two weeks from delivering my letter, I had a call from my GP. The positive thing is that he agreed to all that I wanted - stay on 5.5 until the end of the month then, on the basis of how I feel, stay on 5.5 or go up to 6 or very slow taper to 5.
Which is all very nice, but I wish he were more proactive - it was all ME doing the suggesting. He didn't ask me, for example, about stress or workload which I thought he should do as it is very relevant to my PMR/Pred. and I didn't think to mention it.
I suspect that I will either stay on 5.5. or go back to 6 at the beginning of October.
At least he seems to be one of the good GP's who accept what patients say and are not worried about staying on low doses.
So 2023 and I should be off steroids - perhaps. At the moment, a day at a time and hope that the awful fatigue and sweating diminish.
I think what you have is probably not too bad at all. They won't ask what they don't know about - and they WILL expect you to bring up things you are concerned about. There are very few doctors in the UK who appreciate the role stress has to play in a lot of illlness except the ones that are obvious - and PMR really isn't one of the obvious ones to the uninitiated.
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