Just got back from ruematology.: Went quite well... - LUPUS UK

LUPUS UK

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Just got back from ruematology.

crankyme profile image
6 Replies

Went quite well the doctor actually listened to what i had to say and understood what I am going through.

Took lots of blood samples and urine sample for testing checked all my joints and has referred me for a head scan (mri) and did xrays of my hands and feet but says hes 100 percent certain that all my problems over the years are down to sle.

He gave me hydroxychloroquine tablets 400mg daily and hopefully I should find a difference in a month or so.

Been waiting since 1992 to have a deffinate diagnosis,going out of my mind wondering why i wasnt coping with life the way that others can.

I found this site a couple of weeks ago and have found it a godsend, and full of sensible helpful information.

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crankyme
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Purpletop profile image
Purpletop

This must be a relief, not that you want to have SLE but that you finally have a diagnosis. And the fact that you're starting treatment is a huge step, you'll see. I hope you see an improvement soon (well, in about 2 months if all works ok).

crankyme profile image
crankyme in reply to Purpletop

Thankyou I am pleased in a way that I finally got someone to listen, my g.p put all my pains down to muscular skeletal pain due to the extra pounds I put on but that never explained the dvt or pulmonary embolisms i have had or the aweful tiredness all the time but now I see a light at the end where I hopefully will get some releif.

Mind if I ask?What meds are you on if any and for how long?

Purpletop profile image
Purpletop in reply to crankyme

Plaquenil 400mg since Sep 12, tapering down Prednisolone at 2.5mg at the moment (for a few more days) and 500mg CellCept since two weeks ago.

But with the DVD and pulmonary embolism he shd check your anti phospholipids too, to see if you have Hughes syndrome, or 'sticky blood'. If so, anticoagulants are usually prescribed.

crankyme profile image
crankyme in reply to Purpletop

Yeah already on warfarin for life and had injections into my tummy for a while at first, and found antiphosphlipid syndrome in march so i am getting there slowly. Even managed to get a week without hospitals ect next week fingers crossed lol.

So pleased you had a good experience with the Rheumatologist. I had my first visit 3 weeks ago and when he said to me 'I hear what you are saying and I will try to do something about it' I could have kissed him. Have been on plaquenil for 2 weeks now and I do think it is already starting to take effect. My head is starting to clear. It is quite an odd experience and only confirms how ill I have been feeling this last 7 months. Hope things start moving forward for you. This is a great forum.

crankyme profile image
crankyme in reply to

Aww I cannot thank that doctor enough, I do have this health issue and now I can get something done about it.

And hopefully will get there in the end.

Although the mri hasme a bit scared as i have had symptoms of short memory for a fee years now and was frightened to say anything about it.

Glad things are workinh out for you, take care,

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