Scleroderma & Raynaud's UK (SRUK)

Coming back?!

Hey guys, I'm so seeing if anyone has managed to keep there scleroderma at bay for a while? I've just had a doctor' app and I have to be referred again as it's coming back!! I feel so shitty right now, all I want to do is go to bed and cry 😣 my eye lashes and toe nails are falling off, finding new lesions, and feeling really exausted and stiff joints..

Sorry for the depressing post I'm just feeling sorry for my self 😂

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Hi sorry you are not feeling too good.

Why are you being referred back to clinic, I was under the impression that your Rhumatolagist looked after you for life. I do know that if ones is stable they may just see them once a year otherwise your Rheumatologist would see you more often that certainly happens in my case.

Look into this. And I hope this helps.

Best wishes

Joan

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Thankyou for your concern joan59 means alot ..No I havnt heard anything since 2009.. I'm disappointed in my 'care and support' a dose of methotexatefor 5 years and then left on my own.. it's coming back I can feel it all over my body.. I went to see the gp yesterday that has booked me in for a blood test and sent away for a referral, so hopefully I can get this sorted!! .

I just want help and answers xx

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Hi Rebecca. Sorry to hear your back to suffering again. Question? How long was you stable before it all started again? The reason for asking is I was diagnosed as stable yesterday but to be honest, I don't feel it x

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Hey hun, thanx for your concern.. I have been ok from 2009 until now.. your body tells you when something is not right, if you feel Thursday go back and get checked again hun.. I didn't leave the doctors until the referred ment the dermatology team again .. got a blood test next weds xx

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That was a good length of time. I was diagnosed June 2016. I've had 8 bouts of cyclophosphamide and am now on mycophenalate tabs. My bloods seem stable but it's my body that doesn't feel right. And I've just yesterday found a lump growing under the skin on the side of my nose. Lol. It's to hard to be a calcium deposit so maybe it's a new nose😂 Anyway. I hope you don't suffer too much and you get all the help you need. Take care x

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How did you find the medication? I was so I'll on mine that's what I'm dreading!! On no that's not good hun, get that checked.. hopefully it's noting worry about.. Thanx my love my whole body just feels exhusted xx

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Yes. Me too. Always tired. Found the cyclophosphamide ok. Gave me a funny head when 1st infused but luckily no side effects. As for the mycophenalate I don't feel any benefits from them at all. Maybe we all act differently on the same medications. Just need plenty of rest when you can. I do x

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Ahh fair enough.. haha what's rest when you have a 3 year old running around 😂.. thankyou for taking the time to talk to me x

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That's ok. Anytime. My 5 have flown the nest now lol x

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Wow 5.. I'm struggling with just the 1 😂😂

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Lol. Don't worry. Enjoy. They get worse as they get older 😂

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Oh god 😂 I have loads to look forward too

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