Specialist consultant for raynaulds/scleroderma assessment ?

[smilesb]

Hello

I have been monitored at my local hospital in Torbay since a Raynauld's diagnosis 6 ish years ago

They do bloods every 2 years and see how things are going . Primary vs secondary etc

Do people think that is necessary or is any rhemy dept perfectly able to assess?

Last year i had a nail fold capilleroscopy and it was fine.

18+ months ago slightly +ve ANA but apparently boarderline +ve

On another post someone kindly mentioned that there are specific blood tests for scleroderma... are these likely to be picked up without seeing a scleroderma specialist ?

I inquired at the Royal Free (London) but Prof Denton is busy for a long time

I had heard that Bristol (Royal Infirmary??) had a strong department too.... so i could enquire there perhaps

Thoughts much appreciated

All the best

[Jooles34]

Wow I think it’s great you have been monitored, my doctors don’t really seem to bothered with me abs I must have been suffering with 10 years or more. I spoke to them a few months ago as well and they just told me to go on a website to see if there was stuff I could get to help and didn’t really want to put me on medication. I’d like to be monitored to keep an eye on things. Good luck Julie

[SmilesBarnaby in reply to Jooles34]

Thanks Julie I was initially sent to a cardio they sent me to a lupus guy who sent me back to my local hospital.

They have been ok but never the same person and it does always feel like the min possible but I’ve been pushy. I pushed for a nail fold thing which took a while to get but got it eventually

I hope you are able to get all the attention and care you need x

[cowhide]

Hi, you are very lucky you are being monitored. To reassure you, Raynauds is very common - 1 in 10 people I believe - but scleroderma is rare. I have never met anyone with Raynauds who has their bloods monitored even every 2 years unless there are some other signs that they might be developing scleroderma.

A scleroderma diagnosis is normally on the basis of a combination of physical changes as well as blood tests although bloods are not always as expected. So, yes, you should be fine with a 'normal' rheumy. I had Raynauds for 36 years and apart from the initial diagnosis and trying some medication for a few months to start with, which just gave me headaches, was just left to get on with it until I raised the alarm about other symptoms, then fortunately my GP who had family experience of scleroderma, did one examination, one ANA blood test and then referred me to a rheumy.

There is often a lot of talk on here about Professor Denton and his team. Many of us with scleroderma don't have the luxury of a scleroderma specialist, just a rheumatologist from the local hospital, I've been with mine for 6 years now, but I do have the advantage of being able to see her every 8 weeks, whereas those with a specialist often have to go a lot longer between appointments.

Do read up on the advice on the SRUK website so that you are aware how to try and control your Raynauds and also the symptoms of scleroderma so that you can self monitor . I wish you well and you can comfort yourself that a lot more people have primary Raynauds than secondary and try not to worry about it.

[SmilesBarnaby in reply to cowhide]

Thanks so much for the advice cowhide. Much appreciated. I’ve been starting to worry myself sick tbh. Been a bit of a journey as initially the first guy I saw pronounced me with autoimmune issues just cos my eyes were dry. Sjögren and or lupus. Some doctors can be a bit thoughtless

Anyways I think that start got me off to a good solid worry !

I’ll see how my bloods look soonish and take it from there.

I hope it is indeed primary.

Seems quite pronounced though with almost constant tingling regardless of temp but that I guess can be the way of things

Thanks so much for taking the time to respond and wishing you all the very best

[Vervena1 in reply to cowhide]

You seem very knowledgeable Is an ANA positive result an indicator

And is it always something to be taken seriously?

[cowhide in reply to Vervena1]

Thank you, but I'm not very knowledgeable on ANA results, I can only go on my own experience but there are plenty of reputable sources of information. In my case I was ANA positive 1:1600 anti-centromere which is classic for limited systemic sclerosis, for which I also had almost all of the physical changes expected.

A positive ANA result on its own does not indicate autoimmune disease, which is why I stressed the physical changes in my post above, you will see that the importance of clinical changes is highlighted on these sites too.

labtestsonline.org.uk/tests...

rheumatology.org/I-Am-A/Pat...

[Sanmateogirl107]

keep making noise get a second and a third opinion also ask about prazosin. 1mg for raynaud's rheumatologist is good see an immune specialist. if you have pain like me try wild lettuce extract from mt rose herbs, ebay i use it for pain it works great. good luck julie

[Nisrinita40]

Hello,

I have been diagnosed with limited systemic sclerosis (2weeks ago) and there is a specific blood that can show exactly what type of autoimmune disease you have. ANA will show the amount and also the pattern of the antibodies your system is generating. I am female and just turned 40 and I had Raynaud symptoms since I was in my late 20s but my GPs said this is poor blood circulation so exercise more and eat healthy. I’m very healthy with perfect weight and exercise good but it is genetic I suppose as my my mum suffered from Raynaud and with my diagnosis now I spoke with her Gp to get ANA blood test to see is she has any autoimmune disease or just Raynaud.

I was never bothered to go and see a rheumatologist because it is mild. However in January this year my toes gotten swollen and red and very tender because silly me I opened the door to receive Sainsbury’s delivery late in the evening and it was snowing outside and I was without socks so the temperature difference cause this spams in my blood vessels. It didn’t get better so my GP kept saying this is chilblains and my blood general test all healthy but after 3 months and with search in google no chilblains last that long. I saw I won’t get referred as it is mild but deep down I knew something is wrong so I went to see a rheumatologist privately and after 23 blood test I got an accurate diagnosis of LSS with Raynaud syndrome so far. I will be referred now through the NHS to have the yearly check up to make sure it stays only Raynaud and it won’t progress to my organs (finger crossed). If you want to know then ask for ANA with pattern analysis and the ESA screening (here they will see what autoimmune disease you have and it is very accurate). I tested negative for all of them but positive with LSS and Raynaud is one part of the 5 branches, in the past LSS was called CREST. I hope this helps don’t wait too long because now I know I have it and every time my fingers gets white I know I need to get blood flow fast to avoid any digital ulcers and keep warm which will help the condition. I saw some people left the U.K. and went to warm countries as it helps with Raynaud. Good luck and take care.

[tanya1981 in reply to Nisrinita40]

Hi Nisrinita, What other symptoms did you have before you got diagnosed? And which particular antibody did you present with? I’m in a similar boat as yours - age wise and symptoms wise and with LSS for the last Almost 5 yrs.

[Nisrinita40 in reply to tanya1981]

Hi Tanya,

They found this antibody Anti-Centromere Ab from my ENA screening. I always had white fingers when it gets really cold and numb, but in January for the first time my toes got really swollen red and tender that was difficult to even walk as I said due to the sudden drop in temp and I saw that some of my toes skin was dry and damaged, if this keeps happening then ulcer can form so we need to be careful that we need to massage or put them in warm water to make sure blood flows again ASAP to avoid getting ulcers. My toes are still a bit swollen and it is April but they are not tender or so blood red as before so they are improving, this was the reason why I went to see the consultant as chilblains don’t last months. Today I need to speak to my GP to refer me through the NHS to get the annual screening (blood test, heart ECHO and lung blow test) to make sure this LSS stays as Raynaud and that’s it. Did you have any other symptoms to mine and are you doing the annual screening? Take care

[Vervena1]

Hello nisrinita

I am very concerned as my daughter has ulcers and needs to get a diagnosis

Can I ask where you went privately to get the blood test and diagnosis . Does anyone have a view on how to treat this and what to do - I’m going crazy !

Thanks

Ulcers

[shaunalouise26]

Hi, I have been treated for suspected scleroderma/ crest for 7 years on hydroxychloraquine. I have reynauds very bad but no ulcers. My ANA was positive centromere but I also have lupus symptoms ie hairless, mouth ulcers , photosensitive rashes etc. There are other autoantibodies they test for on top of the Ana's called ELISA. I had a scleroderma panel done and came up with fibrollarin, RP155 and Th/To which ate scleroderma antibodies and Pm/scl 75 which is a scleromyositis overlap. I'm still not diagnosed specifically as I have too many antibodies. My new rhuematologist referred me to a scleroderma specialist last year and gor a capilleroscopy and thermography these are all tests to try to get me a scleroderma diagnosis as I'm sure I fo have it. Scleroderma specialist was a call plus I sent photos to her she said if my centromere antibodies were high enough and my capilleroscopy results show scleroderma damage then they could diagnose. I also saw a dermatologist recently for a mole but straight away he said I have dermatomyositis rashes and signs of scleroderma so he would support a diagnosis of scleromyositis. I'm awaiting a call this week so maybe I will finally get some answers after 7 years. I'm glad my new rhuematologist is thorough and requesting I have baseline cardiac and pulmonary function tests. So other tests you could request are ELISA antibody tests and capilleroscopy, thermography. Good luck xxx