Confused over alternative Raynauds tr... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Confused over alternative Raynauds treatment and a Nail Fold test after a visit to my lupus rheumatologist on Tuesday.

ikandee profile image
8 Replies

Hello, not written for a few years, had a routine appointment for my Lupus and Raynauds and as I was Intolerant to Nipeferdine, he's written to my gp to prescribe something else.

However, I tend to get overwhelmed when I go to my hospital appointments (wonderful at helping other people in the hospital I volunteer for conversely) and can't remember what he said it was.

I think he addressed it to one of his juniors to scribe tbh and not even at me.

He also mentioned a nail fold test which I haven't heard of, if anyone can be kind enough to enlighten me.

Thank you in advance. Denise

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ikandee profile image
ikandee
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8 Replies
Lupiknits profile image
Lupiknits

I had a nail fold capillaroscopy some time ago. It’s a very simple investigation. Mine showed an abnormal shaping of the capillaries, which may, in my case, be more than Raynaud’s. I’ve had trials of nifedipine etc, which have not been compatible with low blood pressure.

I understand Fluoxetine (Prozac) is being used now for Raynaud’s.

At the moment I’m left to consider Iloprost infusions.

Kimi9 profile image
Kimi9

Hi, my GP has been unable to get Nifedipine, so I'm on Amlodipine instead. Maybe that's what they suggested as the alternative?

ikandee profile image
ikandee in reply to Kimi9

Hi Kimi9, thanks for your reply. Quite possibly, he was instructing the registrar about what to write to my gp and didn't even address me about it properly. I had a severe reaction after just 1 dose of nifedipine and so hoping it's different x

KatieAnna profile image
KatieAnna

Hi I was part of the original study to see if nail fold capillary testing could identify the people with primary versus secondary Raynauds. It's a simple test and as far as I am aware it proved useful for the diagnosis of my sclreroderma. I hope that you get a good result and help from the drugs prescribed. I have been very lucky with all my NHS advice and treatment over the last 20 years. X

Lupiknits profile image
Lupiknits in reply to KatieAnna

I forgot to say my nail fold test determined my Raynaud’s was secondary.

KatieAnna profile image
KatieAnna

I hope that you get the right diagnosis and help. Xx

sarahsch profile image
sarahsch

Hi,

I'm on diltiazem for my Raynaud's which is affecting some of my internal organs.

I'm tolerating it without a problem, in fact the difference it has made to my breathing is amazing.

Sx

I'm looking for a new Ruhmatolagist, I diagnosed with MCTD overlapping diseases but everything is pointing to scleroderma, my Raynauds barets of the esophagus eratible bale syndrome and so on.

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