Do I need to see a Rheumatologist? - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Do I need to see a Rheumatologist?

Rach18 profile image
6 Replies

My Raynaud's has been getting progressively worse over the last few years and after several recent trips to the doctors we've eventually reached the conclusion that I will need some medication to get me through the next winter. I've always tried to manage without in the past but it's got to the stage where the frequency and severity of the attacks is now having a big affect on my life.

I've asked the GP a few times whether I need to be referred to a Rheumatologist but she seems unwilling to go down this route, telling me that it wouldn't serve much purpose as they will only tell me that I've got Raynaud's, which I already know.

Would be interested to hear whether other people with Raynaud's rely on checks with their doctor to manage the condition, or if you regularly attend a rheumatology clinic for monitoring and advice?

(p.s. hope you've been enjoying the sunshine over the past couple of days - bliss!!)

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Rach18 profile image
Rach18
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6 Replies
uknlv profile image
uknlv

Hi Rach18

I would say that it is entirely up to you, if you feel it would help to see a Rheumatologist than I would say push for it. I would imagine that a Specialist in the field would know of all the choices of medications available and be constantly working with others and that would give them a different insight than your GP. I have Raynaud's and Scleroderma and see two Scleroderma specialists and I feel better knowing this. But others may say different and at the end of the day it is your body and you should ask for what you feel is the best solution for you

Hey,

When I was first diagnosed in 2000 My GP put me on Adalat Retard (a channel blocker) which gave me side effects then they changed my medication to amlodipine which worked great. I wasn't sent to a rheumatologist until I moved to Huddersfield and changed GP's. My GP here wanted to know more so sent me for further tests with a specialist to make sure that I had Primary and not Secondary Raynaud's.

The only reason I would bother with a rheumatologist is to check whether there are any underlying conditions that have triggered your Raynauds - to be honest I felt my GP was more informed than the specialist... they certainly had a better bed-side manner! It gave me piece of mind but at the end of the day it's up to you.

Hope this helps...

BevMyers profile image
BevMyers

Yes as it is important that you determine if the Raynaud's is primary or secondary and the tests the rheumatologists will undertake will help determine this. The condition is present in quite a number of auto-immune diseases so it is definitely worth checking - I suggest you insist on an appointment as you have nothing to lose and everything to gain. If there are any, catching underlying issues early can only improve your prognosis.

Rach18 profile image
Rach18

Thanks for the comments folks, I'm back to the GP later this month so I think I'll press the issue of a referral. My worry is that I could possibly have an undetected underlying condition that's making my Raynaud's worse, so at least if I had some specific tests from a rheumatologist it may put my mind at rest.

Emma2 profile image
Emma2

I see a rheumatologist at the hospital and I cannot fault the treatment the hospital has given to me so far. I was referred there once my blood tests with the GP showed up CREST. I had to push a bit for the blood test but I was showing signs of an underlying condition so they agreed to do it. They see me regularly twice a year and send me for a yearly heart scan and lung function test. They answer all my questions when I am there and can advise on the various treatment options which are available. They also make it clear that if any problems crop up between appointments that you should contact them. Good luck with your referral!

vaughan profile image
vaughan

i go to see dr herrick at hope hospital and she is brilliant understanding my condition and seems to organise tests regular for me and know if it was left to my gp who doesnt know enough about this condition i woudnt be getting this care from hope hospital

every credit to the team at hope hospital

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