Limbo !!!

O.k , went to rheumatologist and because the Hydrochloriquine hasn't made much difference he now thinks all my symptoms are probably down to my Fibro . My skin is stinging again today cause of sitting outside for 30 mins hmmmmmm, not sure this is Fibro !!!!!!!??????

His advise is to stop the Hydro.......... and see what happens !!!!!!!!!!!!!???????????? but isnt it possible to have Lupus and Hydroxy not be effective !!!?? possibly another drug would !!!!??

I have an appointment to see him in 7 mnths and have my blood tested a month before ...ANA , Dna etc

So far ive tested positive ANA 3 times.

I just want to know , have i got it or not ? And should his opinion be swayed just because Hydro... hasn't worked ? ( sometimes i think its helped a bit but not sure !)

7 Replies

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  • Have you had a positive LE Cell test would be my first question Larissa.

  • dont know what that is and its not written on my blood test request form ???????????

  • i have lupus sle and hydroquinine is not a good bet for me. i am allergic to it and begged to come off it. the consutant said i was right and has agreed no more meds and they will watch and monitor me. i am not happy to take these experimental drugs

  • Hydroxychloroquine sulphate is not an 'experimental drug'. Regularly prescribed for lupus, APS, SS, etc. But I appreciate some people can't tolerate it.

  • OK, then you probably need to ask a.s.a.p. and ought to be able to find out from your GP. I assume you tested positive for the rheumatoid factor at least as you've been referred to a Rheumatologist. It would seem rather odd (to me at least) if he hadn't then tested you for a variety of rheumatoid diseases, including SLE, in order to establish what he or she is dealing with and/or to rule others out. If you test positive for a disease such as SLE, you'd normally be called into your GP's surgery to be informed of your results formally. In some cases, the Rheumatologist may even telephone to give you the results personally. Some things, like fybromyalgia, can't be tested for though and are therefore dealt with on a "best guess" basis. As Copper rightly says, antimalarials have been used to treat SLE for decades and are usually the first drugs you'll try. Unpleasant (or occasionally dangerous) side effects in some are fairly common in my experience. You need to take antimalarials for at least a month before noticing any improvement in the symptoms of joint pain, low grade fevers and fatigue but some (me included) never make it that far before being forced to stop. Have you tried Ibuprofen? Does that help?

  • *fairly common in my experience of working with people with SLE

  • I do hope you find the answer soon

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