[DnA]

Wasn't quite sure where to post this, so plonked it in here...

I've been diagnosed with SCLE but am in the process of trying to get this changed so that I can actually receive treatment that might make me feel like a human - as I've forgotten what that's like!

I've had my initial very expensive private appointment in London, and had lots of tests done. I should add that I knew it would cost loads as my GP refuses point blank to run any 'unnecessary' tests. I go back on Friday to get the results.

Anyway, my question - I know that my bloods will come back negative as they always do. My concern is that this happened with my thyroid, despite feeling really ill it was fine a month before I ended up in hospital with a sky high TSH.

My other problem is that my spine is knackered and like an old woman's and my problems are often put down to chronic pain. Yes, I admit I suffer from this, but I've felt like this before my back problems began. This has a knock-on effect in that when I get poked and prodded I can't initially identify the pain - it just hits me like a tonne of bricks the next day.

Anyway, enough ramble and to the point - anyone else been in similar situation and how did they tackle it and actually get someone to take them seriously and provide treatment?

Thanks

Sammy

 

[sam101360]

Sammy:

Hi and welcome! Not every one with SCLE has SLE however you can still have many of the symptoms...join and muscle pain, fatigue, etc.

I actually see alot of my own story in yours. I was diagnosed with Tumid lupus in 2003, then it was changed to SCLE. In 2004 I started to have other symptoms that leaned more to SLE...

I have almost negative bloods all the time, I have had one positive ANA and sporadic low C3, C4. My ESR and CPKs get elevated when I am in a flare, but otherwise I am mid range normal.

It is important that you persue treatment for your symptoms. with SCLE they should start you on plaquenil, which is the first line treatment for all forms of lupus and many other auto-immune disorders.

If you aren't already on plaquenil, you can at least ask for that (it can take quite a while for it to kick in, possibly as long as six months).

I hope you start to feel better soon, and please keep us informed on your journey.

Stephanie

 

[Maia]

With an SCLE diagnosis... that can be enough - under the right doctor's care - to get on the right medications to get you feeling better. Plaquenil, mepacrine, even Imuran have been prescribed to people with SCLE. What medications are you hoping to get that haven't been prescribed yet - and to treat what symptoms?

The private care you're getting now will hopefully get you started down a path that will get you the medications you need to start feeling better. It is a shame your GP wouldn't run any of those tests for you... Be sure to state what improvements you're looking for at your follow up & ask all the questions you have even inquiring about specific medications if you have to.

 

[DnA]

Thanks for replies

I'm already on Plaquenil, gabentin, thyroxine and epilim. I'm probably frustrated because of the letter sent by my GP - a standard form with inaccuracies, missing off lots of medical history and vaguely mentioning SCLE!

I don't particularly want to go on any more meds and know nothing about them but am just so fed up of being too ill to go out and want some semblance of a life back! I'm not even able to get to the hospital (1 hour by train) on my own and despite having cut college down to one day a week have only managed to get there once this term.

I have CNS problems, sweating when under UV lights and at night, really painful bones, weight loss, muscle weakness, mouth ulcers, photosensitivity, fatigue, bladder problems... and the list continues...

Sammy