Newbie with a rash

[Catpuss66]

Hi all been lurking for a while.53yrs old diagnosed SS Feb 19, also stage 3 IGa kidney disease in July 18. Started on hydroxychloraquine a month ago on the last day of the first month(30th) day came out rash on back of arms and over chest saw the consultant coincidently the same day he said allergic reaction, I decided to continue and take antihistamines , there is something else in Oct 18 developed strange skin abnormalities on right hand, there has also been muscle weakness, and ongoing breathlessness since I became ill in mid 2018., it maybe dematomyosis, I am ana positive , also anti Ro positive . Question is should I continue on the hydro , if not what else other than steroids which at this point is not the road I want to go down . Thanks in advance

[Megansheart]

Oh dear it sounds like you have gone through the mill. Did you say you were only diagnosed in Feb this year?

Are you aware that Sjögren’s can cause what is called extra glandular involvement as well......like the kidney disease you have and it can cause lung involvement too, amongst other things! I think you would be wise to get onto a pulmonary specialist to see what is going on with your breathlessness and eliminate any possible early lung disease.

Too many doctors do not have a clear idea of the huge impact in health that SjS can have on people.

As regards the hydroxychloraquine, I cannot advise what you should do. Perhaps your kidney function has made you more prone to reacting to this medication. Some people seem to respond well on it, others not. You need to monitor your symptoms and see whether it was a temporary setback or a more critical event which will persist and possibly even get worse.

I do hope that you have a doctor who understands Sjögrens and can offer you all the support you need.

Please don’t just lurk, drop in from time to time to tell us how you are travelling,

.

[Catpuss66 in reply to Megansheart]

Many thanks for the reply, consultant appears helpful probably helps as I work in the NHS . Yes already been on waiting list since last year for respiratory consultant, but he has been in contact, I see him in July. Heart was checked last year. Strangely enough my Mom started hydro for fibro just after me and has come out in a rash the same she has stopped the drug. Must be genetic