OMG hydroxychloroquine

[Brychni]

... is a treatment for systemic scleroderma.

[Hidden]

There is treatment overlap with most autoimmune diseases and inflammatory arthopathies. The drugs used for RA, PsA et al. are also exactly the same ones used for conditions like scleroderma, lupus and sjrogens. Methotrexate is also a treatment for scleroderma.

[Brychni in reply to Hidden]

Thanks Charlie - I didn't know about mts for sclero related condtions.

[AgedCrone]

Please stop trying to diagnose yourself & speak to your rheumy nurse to get some correct clinical information on your case...not what you are reading & probably misunderstanding. ...thereby scaring yourself .....which could be causing your headaches!

[Pippy25]

Hello Brychni, I just wanted to reach out to you as it feels like you are very anxious from reading your posts and send you some supportive wishes. Do you have an appointment with your rheumy or GP as it might be helpful to write down all your concerns, questions, show them photos of your fingers and raise the things that are troubling you.It is so hard when things are happening to you and are going on inside of your body and are ever changing. Sometimes it's hard to know or pinpoint where one thing begins and the other ends in respect of signs symptoms and trying to 'untangle that ball of wool' in respect of RD/OA and all the associates that having an autoimmune disease can bring. It is so hard and confusing when we struggle to comprehend what is going on with our bodies and sometimes we are so anxious to have an answer to it all we search all possibilities. I'm glad you have shared your worries with the forum but would always say it's best to speak with your doctor or health care professionals. Take care x

[allanah]

Hiya ! How are those steroids, keeping you going like mine do!!!

I really think it's time to talk to your docs in more depth after the weekend as you are hoping to get diagnosed, then guessing , then deciding, like we all do. Then hoping treatments ou have in your mind will work.!!

What you really need is the real answers from the real experts lovely. Hard , as we all hope we can sort this or work this out more quickly , but really , patience is a virtue. Take your time to let the docs get this diagnosis right and really talk to them xxx

Ring them Monday xxxx

[helixhelix in reply to allanah]

Are you on steroids Brychni?

Oral steroids drive me nuts literally! I get anxious, emotional and my balance of mind is seriously disturbed ☹️

[Hidden in reply to helixhelix]

Me too 🤪

[Brychni in reply to helixhelix]

I had my first injection the other day. My right foot had been really bad for about a week (longest run of consistent pain) of course it started to die down in the waiting room...

[allanah in reply to helixhelix]

Me three!!! Arrrrrhggghggg!

[Brychni in reply to allanah]

Hi allanah - yes I do want answers but since last night and doing a bit more reading I think the consultant has got sclero/Raynaud's in mind because she kept asking related questions. It turns out initial treatment is the same as for RD, lupus etc. She just didn't articulate any of this to me. x

[allanah in reply to Brychni]

Yes a lot of auto immune illnesses and surprisingly covid have the same sort of treatments!,I suppose they all act on parts of the immune system to stop the blooming thing over reacting !!!

Consultants assume we know all sorts of things we dont and donf tell us what we really want to know!,I eventually took my hubby to a couple of appointments and my now notorious list as he caught things I missed and reminded me what I wanted to know when I talked about other things !

Yeah unfortunately you do need patience in this game xxx

You have a restful weekend!!! Xx

[Brychni in reply to allanah]

And you 😘

[RosieA]

Hi Brychni.

I'm popping into your posts with the hope to help put your mind a little at rest. I too am on a diagnostic journey and I understand this is perfectly normal and does not reflect the quality of the care being given. I truely respect a professional who doesn't rush, who may not have all the answers because sometimes things are not black and white.

As my consultant expained some people come into the clinic and they fit straight away into a disease profile. Others like myself don't. I have read copious studies that make clear that for some people autoimmune diseases can take 3 to 5 years to manifest.

I have now got several letters to my name (so not bragging), inflammatory arthritis, sicca, UCTD, some OT, low bone density and now photosensitivity and malar rash. Sjogrens at one point was mentioned but I don't think I'm heading that way. At one point I was even told potentially Scleroderma (long story - it ended up with me phoning the hospital making it clear that I didn't have it - was told to stop Dr Google - obviously refused to do so, - it ended up being a clerical error). Lupus like has been mentioned by Dermatologist. So there you go, I've hit the Jackpot and have been able to mention most of the main ones with relevance.

I have taken MTX, LEF, sadly they didn't suit me but I gave them a good shot and now on HYD with tapering steriods. Without hesitation I have taken any meds offered by the consultant as my aim - whatever the disease turns out to be is to reduce risk of damage caused either to joints or other organs. HYD suits me and is actually the drug of choice for many AI diseases.

I'm not going to pretend that I am not keen to get the diagnostic end - I hate surprises but there is no rushing it. So as others have said, your not alone. Hope this gives a little reassurance that things can and will be fuzzy but we'll all get there - wherever it is. x

[Brychni in reply to RosieA]

thank you xx

[SriShell1920]

I had to look that one up, thanks for sharing and clarifying, I am learning more and more each time I visit this forum. Pippy 25, very encouraging words.