Double trouble?
Posted , 9 users are following.
I saw my rheumatologist on Friday and he put my steroids back up to 50 as they had been decreased from 60 to 40 in 5 days by another doctor and I was finding it intolerable. The plan is to decrease by 5mg every two weeks until I get down to 20mg when the decreasing will be slowed down.
I was having trouble with my voice, and happened to say that I was sorry about my voice, that I seem to lose it every afternoon but it was always alright in the morning. That seemed to be significant to him, he had his registrar with him and he was explaining to her what he thought it might be connected to. The upshot is that I am to have a blood test looking for markers for Myasthenia Gravis. Never heard of it but have looked it up since. He said he didn’t think I had, so that’s positive. Is it possible to have two autoimmune things going on at once?
0 likes, 18 replies
Silver49 Lizfor
Posted
Lizfor Silver49
Posted
Thank you. Perhaps it is just another manifestation of PMR, Let's hope so.
EileenH Lizfor
Posted
It's possible to have several autoimmune things going on at once! Once you have one you are at a higher risk of developing another than someone who doesn't have one. My view is that they all overlap - and the label you get depends on the dominant symptoms.
Voice problems do sometimes occur alongside GCA if the thoracic arteries are affected.
This rheumy sounds far more sensible than the other - hope he tells him what he's done and why...
Lizfor EileenH
Posted
Thank you Eilleen, it will be interesting to see what transpires. The other doctor wasn't a rheumatologist, he was a doctor I saw in A&E when I went in with atrial fibrillation, they kept me overnight and I think he thought lowering the steroids would help. I asked him if it would still protect my eyes and he said yes. He asked who my rheumatologist was but said he didn't recognise the name (both working in the same trust) so I doubt if he contacted him. The GP put the dose back up three days before I saw the rheumatologist when she saw what a mess I was in and my rheumatologist confirmed it.
iellen32 EileenH
Posted
Because I notice my throat needs help I keep sugarless cough drops at hand.
I have pain on the neck when my Rheumy does the tapering too fast -
1MG of Prednisone a day.
I am not following his template, I am looking for the slow tempering plan instead.
My neck and the pain on the temple both show up when the tapering goes too fast.
I am in need of help so I ask, EileenH, if you kindly could send it to me.
I am already thanking you for that.
Taking the opportunity I wish you have a Happy New Year- good moments and good health to enjoy them.
EileenH Lizfor
Posted
They have this fixation that if someone is on pred it MUST be the reason for a/f. It wasn't for me - the really bad attacks were due to another drug reaction (which they apparently weren't aware of, it is rare) but the a/f itself was due to the autoimmune part of PMR. Not sure how he thought leaving you on 40mg was going to help the a/f though - it's still a high dose - and it would be enough to protect your eyes if it was enough to manage the inflammation (if you see what I mean) but it obviously wasn't. I think it might have been polite to ask your consultant...
EileenH iellen32
Posted
You mean this iellen?
https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439
It is always to be found on the front page of the forum where all the posts are listed - and you get to it by clicking on the polymyalgia bit of
Home > Discussion Forums > Bones, joints and muscles > Polymyalgia Rheumatica and GCA
in red at the top of the page
Lizfor EileenH
Posted
pam1793 Lizfor
Posted
Huh. Never heard of the voice issue. I was diagnosed with GCA back in March and was told that it's possible and common to have both pmr and GCA simultaneously. I was also told that once one is diagnosed with an autoimmune desease, the chances of contracting another go up considerably. That did not make me happy. I just wish there was an alternative to the Prednisone.
ptolemy Lizfor
Posted
As Eileen says you can have more than one autoimmune disease at the same time. A very good friend has Myasthenia Gravis. He was in quite a bad way until he took steroids, now he says he feels fine. He found that the muscles in his face sort of collapsed and he had double vision. His face was also very red but I don't know if that had anything to do with it.
Lizfor ptolemy
Posted
It's good to know that prednisolone is used for PML, GCA and MG at least if it turns out to be the case I am hitting them in one whammy!
I find that as well as a weak, dusky afternoon voice my eye lids are very tired and my arms and legs go very weak but I suppose this could be a result of any one of them. I am looking forward to being further down the track and feeling better.
EileenH Lizfor
Posted
Lizfor EileenH
Posted
At the moment I'm telling everyone everything as I don't know what is relevant and what is not. My GP seems to think it relevant. The rheumatologist seemed more interested in the voice as he was 'educating' his young registrar. He told me it most probably wasn't MG which I think was in order to reassure me and not cause unneccesary worry. Needless to say, the first thing I did was look it up when I got home. I read thar people have run marathons with MG. I'll be happy running for a bus. 🙂
EileenH Lizfor
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What's running for a bus?????
Lizfor EileenH
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Can't really remember but I am sure I was capable of it at a dim distant time in the past.
Lizfor
Posted
Running for the bus as in omnibus. Perhaps bus means different things to different people depending where they come from. 🙂
EileenH Lizfor
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It's a very long time since I ran for a bus...