Update after paying to go private.

[JoBriggs]

Hi everyone hope you are all well.......Today I took my daughter for her follow up appointment after having MORE blood tests and another urine test. This time there wasn't any protein in her water ruling out kidney problems....for now. Before seeing the private Rhuemy we already new she had Sjorgrens Syndrome, Raynauds, Fibromyalgia and ME, not much I know lol. Well today all this was confirmed again but as she has so many cross over symptoms the Rhuemy couldn't make a firm diagnosis of Lupus or rule it out completely. He said she had a life long condition because of the connective tissue problems and all that we can do is monitor and manage for a while, but she has to keep taking the Hydroxychloroquin to supress her immune system, what does that tell me?? If she stops taking it, is her health going to go downhill again but if he can't make a Lupus diagnosis, why keep her on this drug? Hoping someone has some advice please. I have got to say that before she was on Hydroxychloroquin I really thought she was dying, so it is doing something.

[PMRpro]

There are many overlaps in autoimmune conditions and there is no one drug that works for any single disorder. The drugs that work to manage the symptoms are the ones that are used and what works for one patient may not work for another. If hydroxycholorquine is working for her then that is good. And many doctors regard it as a drug that has fewer side effects than others. Things may change in the future - but that is the future, not now.

I hope this helps - and all the best for you both.

[whisperit]

Hello JoBriggs,

Hydroxychloroquine is an immune suppressant and is used in a whole range of conditions where the immune system appears to be attacking its own tissues - including lupus, but also including things like Sjogrens.

The particular diagnostic label you are given depends on the mixture of symptoms that you show, and some people have a mixture of signs and symptoms that don't fit neatly under one label (I seem to be one of them - having been given various labels at different times, including Sjogrens, UCTD, Overlap Syndrome, Interstitial Lung Disease, and Fibromyalgia)

But whether you have the symptoms of Sjogrens, or "Mixed Connective Tissue Disorder" or "Undifferentiated Connective Tissue Disorder" or Lupus/SLE, the basic disease process is similar (ie they are all caused by the immune system attacking the body) and so the basic treatment required is the same.

It may be that further tests will enable the rheumatologist(s) to definitely assign your daughter to one particular diagnostic label, but that may not change the treatment she needs. In any case, it sounds as though she needs to keep taking the hydroxy.

Hope that helps x

[Kevin53]

If it’s working, stick with it. They can settle on names later. Best wishes Kevin

[JSue]

I'm on hydroxychloroquine as well, and have been since my "dx" of "mild lupus-like illness with Sjogren's" back in 2002 (at St Thomas in London). The only times I've come off or lowered my dosage, about half of my symptoms returned. I'm prob on it for life and tbh it's ok. If it helps then I'll take it. Def not a cure all but makes a major difference to my health

I also have Raynaud's, OA, Fibromyalgia (amongst other ailments weeeeee!! Lol)

Your daughter is lucky to have you in her corner

Best wishes J

[JoBriggs]

Thanks to all those that commented on my last post, you have all been very helpful so a massive thank you to you all. xx