Newbie 😊🇮🇪: Hello all I was... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)
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Newbie 😊🇮🇪

CookieJones
CookieJones

Hello all

I was diagnosed this week with Limited Scleroderma- lucky me! My symptoms are raynauds, tiredness, sore throat and a little dry skin mainly on feet. I started Plaquenil 7 weeks ago and so far it’s improved my nails. I’d love any tips on vitamins, meds, good specialists, etc

Thank you

Caroline 🇮🇪

23 Replies
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Hi,

Welcome here. It sounds as if your symptoms are quite mild ATM, which is good. I have had it for 33 years now alongside 3 other autoimmune conditions. Hopefully your symptoms will remain quite mild, although I wasn't started on plaquenil until recently when my symptoms got much worse, so I'm a little surprised that they've started you so early? I only say this because some people can't take it for too long as it can affect your eyesight.

Hi - thanks for replying x Do you mind me asking what symptoms you had when they started Plaquenil?

No worries, severe joint pain, severe gastric issues with malnourishment from intestinal immobility and bacterial overgrowth , calcinosis, severe fatigue, flu like symptoms plus 3 other autoimmune conditions so dry eyes, mouth, gastric pain etc. I was never started on plaquenil until things got bad.

I’m confused about the gastric involvement in general - is it more than heartburn and difficulty swallowing? X

Reflux is the most common symptom,but yes it can be a lot more, it's been one of my main issues, losing lots of weight, can't leave the toilet, cant eat certain foods, things don't move like they should so food accumulates and I get frequent infections needing antibiotics, incontinence, it's awful. But my understanding is that it affects people very differently so what affects me may not affect you. So fingers crossed that it won't affect you like this. Stress is actually the worse thing it really makes things worse, hard to avoid but if you can it's helpful!

Thank you so much and I hope things settle for you. I read so many differing stories so it’s a rollercoaster. X

Hi have colour changes in cold hands & feet , gp said it’s Raynaud’s disease, numbness, nails all brittle & lines on them .

What I’m asking are my symptoms like what you have .

Thank you.

Hi BooBoo6611

Yes I have had Raynauds for about 4-5 years and did nothing about it until I felt tired all the time so please get your bloods done for autoimmune diseases. X

Oh also depends on your age as Raynauds starting later in life can be a signal of underlying issues - I’m 45 now.

Hi cookie jones thank you.

Hi caroline i got put on plaquenil about a year ago now . I dont much improvement for myself . But i am also newly diagnosed and i live in canada so things are a bit slower on my end not as much experts here . Id like to keep in touch to see how your doing .

Hi Emfrenette it’s nice to hear from you - I don’t think there are many experts here either! What are your symptoms?

I was given information by a specialist rheumatology department and chose to take Vit C&D and Starflower (double the recommended dose as per instructions). I have just had a break from taking Starflower - mainly because I was taking two medications that made me feel constantly nauseous as did Starflower. I have noticed a detrimental difference since I stopped so plan to restart. I have limited scleroderma. Take care Jen x

CookieJones
CookieJones in reply to Jen3131

Thanks Jen - I heard Starflower is great for moods but not to take vit C as it promotes collagen growth - it’s all so conflicting!

Jen3131
Jen3131 in reply to CookieJones

The list was given to my by the Scleroderma specialist unit at The Royal Free Hospital to treat Raynauds without resorting to medicalised treatment. There were lots of options. I started on Mycophenolate a couple of months later so it’s hard to say what is doing what!! X

CookieJones
CookieJones in reply to Jen3131

You’re lucky there is a specialised unit - don’t think there’s one here 🙄

Jen3131
Jen3131 in reply to CookieJones

What area do you live in? They are dotted around the country. If you don’t have the right level of care, you generally get referred on by your rheumatologist.

CookieJones
CookieJones in reply to Jen3131

I live in Ireland 😀

OngPatient
OngPatient in reply to Jen3131

Hi, I am at the Royal Free too. I was referred a year ago and feel lucky to have specialists within travelling distance. I get the impression we are in good hands with them there (no pun intended!).

Jen3131
Jen3131 in reply to OngPatient

I think we are in good hands but I live in the Midlands! I have an appointment in July and I am already thinking how I’m going to safely get there 🤔

CookieJones
CookieJones in reply to Jen3131

Would you mind giving me any specialist names please? I have relatives in London so maybe worth a trip x

Jen3131
Jen3131 in reply to CookieJones

It’s Professor Denton at the Royal Free but I haven’t seen him yet. I have been twice - the first appointment was for skin assessment/initial investigations that they wanted to do themselves as they received little from my local hospital. The second appointment was similar but that’s when my meds were agreed. My 3rd appointment was postponed and that’s the one scheduled for July and it’s meant to be with Professor Denton’s own department and specialists. I hope I can go as you can imagine.

I went to see Professor Denton for a couple of visits. I have relatives in london too, so either hospital suits me. I did not get to see him, but his team. I was transferred to the Queen Elizabeth Birmingham where one of his team works. I now see Dr Emma Derrit Smith and her team. I was due to go this month to the Queen Elizabeth and they are now phoning me at a set time on the appointment date.

Hi Kingfisherblue - do you have Limited Scleroderma? And thanks for your reply 😊

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