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No real clue what is going on!


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#1 geordiegirl

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Posted 11 March 2010 - 09:15 PM

Hi,

I'm really just looking to see if anyone has experience anything similar to how my symptoms have progressed over the past year and a half because I can't find anything anywhere so I'm very confused about 'what I've got!'

Briefly, I've had Raynaud's and poor circulation (cold extremeties) for as long as I can remember (I'm 36 now) but it was never really a big problem for me. Then last winter I started developing painful swollen lumps on my fingers which came and went (took about 2 months to go) but my skin was slightly discoloured where they had been. This cleared up by about April and things were normal again.

But this winter the finger problems have came back with a vengeance. My rheumatologist diagnosed vasculitis with slight neutropenia and prescribed plaquenil (hydroxychloroquine). But two months after taking starting this my fingers are worse than ever. Lots of red swollen bits and two of them in particullar I look like I've got burns, they are very swollen and tight and hard to move. This is only at the top of my fingers over the top joint although it does appear to be spreading. I'm starting to find I can't do things with my hands as the lumps are tender. When you press the skin you can see the red inflamed blood vessels underneath. Also in general my hands go red hot and swollen when I am warm or when I exercise (and obviously white and numb when I am cold!). I don't appear to have any other symptoms as yet and I know all my bloods were okay apart from the white blood cells and some inflammation markers.

My rheumatologist said originally she didn't think scleroderma but I have always thought it was and now I feel even more sure as my fingers are getting worse.

Anyone experienced anything like this? Not really sure if I want you to say yes or no!!! I am demented with not knowing what is going on!

Thanks for any replies,

G

#2 pinnygig

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Posted 12 March 2010 - 06:33 AM

Hi Geordiegirl,

If I was in your position I think I would be asking to see the rheumatologist again and talk through all of your symptoms with him/her for some reassurance and clarity.

I've had a similar thing with vasculitis on my toes. It flared up out of the blue last October and at times was very sore. It has settled down quite a lot now, and my rheumatologist was borderline on whether to treat it with steroids or not. So far, I've not taken anything for it but I suppose that may change. My history is pretty much identical to yours re the Raynauds/hot/cold issues etc.

As far as diagnosis goes, it seems to me that few people have only the symptoms of one specific condition. There's usually a whole mix of weird and wonderful things which often don't tie into any one thing. My rheumatologist refers to my condition as UCTD/MCTD (I don't think he can make his mind up which) but is leaning towards scleroderma as I have now started with some skin tightening on my fingers and also have the scl 70 antigen.

What I have discovered is that it's pretty irrelevant what label is attached to it as all of these conditions are treated symptom by symptom rather than by 'disease'. Has your rheumatologist indicated that they suspect a connective tissue disease?

Try not to worry. I had a massive panic when it first transpired I may have scleroderma, but I'm much more chilled about it now. There are loads of brilliant fellow sufferers out there to lend an ear and to nudge you towards optimism for the future rather than fear.

All the best x

#3 kaykay

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Posted 12 March 2010 - 09:59 AM

My symptoms are some similar and some different, but I just wanted to say that plaquenil took five months to start working for me, though I almost gave up on it at three months. It is really helping now - especially joint pain and mouth and skin sores. My fingers swell up a bit and feel like a bee sting; the plaquenil hasn't affected this, I'm sorry to say.

Hang in there -

#4 Amanda Thorpe

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Posted 12 March 2010 - 10:05 AM

Hello Geordiegirl

Welcome to the forum! You currently have a diagnosis of vasculitis for which you seem to be well treated by your rheumatologist.

A diagnosis of scleroderma is usually based on a combination of symptoms, tests and bloodwork because it can present so differently in everyone and in addition it usually takes more than just one symptom to suggest scleroderma. What symptoms are you having that you think indicate scleroderma?

Take care.
Amanda Thorpe
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#5 Sweet

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Posted 12 March 2010 - 10:17 AM

Hi G! Welcome to our family,

I'm sorry to hear about the symptoms you're experiencing. I'm wondering if the spots on your hands that you're describing are calcinosis, please click on that link, and I hope you can find something helpful in it.

Again, welcome! :flowers:
Warm and gentle hugs,

Pamela
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#6 geordiegirl

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Posted 17 March 2010 - 12:15 AM

Thanks so much for the helpful replies, I've been away for a few days so I'm just reading them now. Before I respond properly I need to see if this actually sends as have just written a full relpy and was then told the link was broken, aaargh!

#7 geordiegirl

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Posted 17 March 2010 - 12:28 AM

Hi. OK that worked so here goes.

The swelling in my fingers has subsided, as it tends to, it seems to go in cycles. I'm left with red and slightly shiny skin where the inflammation was. Now wondering when the swelling will start again! I may take the rheumatologist up on their offer of a steroid injection if they are that bad again!
I guess I'm looking at other diagnosis because I can't find anything that matches my symptoms anywhere. The rheumatologist has diagnosed vasculitis at this stage but she has also mentioned connective tissue disease and autoimmune disease including lupus, scleroderma and UCTD. I don't know why I keep thinking scleroderma, probably because I have raynauds and problems with the skin on my fingers and I can't find anywhere else where I fit! (I'm a bit of a control freak so need to know these things!)
I think the point about not getting too hung up on the classification and treating the symptoms is a really good one. It seems this whole area of connective tissue disease is a very complex one with loads of crossover...I very naively thought I would see a rheumatologist and they would give me a diagnosis and treatment and that would be that!
This seems like a great site with loads of positive and useful advice. Thanks again for the advice which you gave me and I hope everyone reading this has a great day,
Gx

#8 Amanda Thorpe

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Posted 17 March 2010 - 03:06 AM

Hello Geordiegirl

You're absolutely right connective tissue disease are very complex and can often cross over into each other. I think it's natural to want a specific diagnosis though so that you know exactly what you're dealing with. Mind you with a good rheumatologist on your side that's half the battle.

Keep posting and take care.
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
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International Scleroderma Network (ISN)