Hi all me again: I have managed to get my... - LUPUS UK

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Hi all me again

Alan55 profile image
6 Replies

I have managed to get my prednisolone dosage down from 30mg to 20mg I saw gp today about referrals etc. got eye hospital on 2nd July about dry eyes ,got endocrinologist on 3rd July about gland problems, got rheumatologist at UCH on15th July, gp is now saying looking like sjogrens linked to other autoimmune problems. Going to try reducing steroids again at the beginning of next week.still having lots of joint problems. Not sure where I will have to go about my dry mouth yet but no doubt someone will let me know .thanks for reading.take care.Alan

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Alan55 profile image
Alan55
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6 Replies

Thanks for update Alan. At last, you will be sorted out. I have sjorgrens, as do many of us. Mouthwash is usually recommended, but alcohol free. I usually say that, lupus is the ringleader, of all our subsequent other problems. Control the lupus and, the other secondary problems are controlled too. Really hope this is the case for you. Well done with the pred. Hope you are not suffering too much, with the reduction in dosage. Back to the sjorgrens and others, you can get a saliva spray, also. I didn't mean to imply that your lupus meds,(if diagnosed), will make all the other probs disappear, I just mean, less troublesome. Take care.

Alan55 profile image
Alan55 in reply to

Thanks 6161 I think at long last I am making progress ,this last 2 months have seemed to have aged me ,am still getting a lot of cramps and joint pains but am on quite a lot of pain killers.the dry mouth is annoying keep chewing gum all the time.My gp said these specialists that I am seeing will have to do more tests but at least I am getting there.many thanks for your reply,all the best.Alan

misty14 profile image
misty14

Hi Alan

Well done for reducing the steroids to 20 mg, great achievement. Good luck for further reductions, do it slowly!. Best of luck for all your appointments, you will get answers I'm sure. Let us know how you get on. I'm recovering from a sudden flare and may get a proper diagnosis after 28 years of trying.!. Take Care.

Alan55 profile image
Alan55 in reply to misty14

Thanks misty slowly getting there ,seems to take ages to see specialists,hope u get your proper diagnoses soon.keep well. Alan

Purpletop profile image
Purpletop

Try chewing-gum for the dry mouth - it forces saliva into the mouth, which in turn helps avoiding gum disease caused by the dry mouth. You might not be a fan but it beats using a spray, I always thought. Sugar-free gum, of course.

Alan55 profile image
Alan55 in reply to Purpletop

Thanks Purpletop it is the only thing that helps ,Alan

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