Managing Raynaud's in Scleroderma

[dacharya]

I want to know whether people with Scleroderma, who have Rayynaud's syndrome, get relief from medications like felodipine or they still can't stay in cold environments?

How do people in cold places in the UK and US manages their life with Raynaud's?

[Dogsaremybestfriend]

Hello, I've had Raynauds for over 45 years and spent many of those years in a cold climate. I use to use mainly hand warmers and thick gloves, but recently have been trying some of the medication that dialates the blood vessels. I've had good success with each of those remedies, however my family and I have also moved to a warmer climate with no snow. I still need to be vigilant and also incorporate hand and arm exercises into my daily exercises. Wishing you good health and peace!

[dacharya in reply to Dogsaremybestfriend]

Thank you for sharing your story and I am glad to hear that you had some improvement. But do you have Raynaud's because of Scleroderma or any other condition? You said you moved to a warmer place in US, but almost all places in the US are cold in winters. How is Florida?

[Dogsaremybestfriend in reply to dacharya]

The Raynauds I have is associated with Lupus. Although a few doctors question a scleroderma diagnosis with other symptoms that I have. The move we made over 20 years ago was to Arizona. I hear Florida is nice also. The Raynauds is still present here in Arizona, but not as severe. Hope that helps.

[dacharya in reply to Dogsaremybestfriend]

Which hospital in the USA is best for Scleroderma? This is a very difficult to diagnose kind of a disease and a specialist should be highly experienced.

[Dogsaremybestfriend in reply to dacharya]

Try the Mayo clinic. mayoclinic.org/ I have never been there, but I always hear good things about the care and professionalism.

They're suppose to be one of the best in the country. Good luck and peace!

[dacharya in reply to Dogsaremybestfriend]

Thanks but it's in Minnesota and that's too cold place. Is there any good hospital in Florida or Miami?

[Dogsaremybestfriend in reply to dacharya]

Here's one in Jacksonville mayoclinic.org/about-mayo-c....

[glasslass]

I take medication, Sildenafil, but regard it as more to prevent damage from the attacks rather than prevent attacks. I live in Scotland so a relatively cold part of the uk. I manage by keeping myself warm all over not just my hands so lots of layers, cosy lined boots, almost always have thick gloves on out of doors from about September. I carry fingerless gloves to switch into indoors, hand warmers and almost always a wrap or poncho. Lots of warm drinks, hot food rather than cold. If my hands go into a prolonged attack warm them gently mainly be warming myself up. If totally chilled then a hot bath.

I have also had to change my life a bit, I am an artist working in fused glass and teach this as well as doing pottery. I have had to learn new styles of work that don’t involve so much cutting of glass as the risk of cuts not healing concerns me. Unfortunately rooms used for ceramics and glass tend to be workshops and not always very warm!

[dacharya in reply to glasslass]

Hi there! Thank you for sharing your experience. But the drug you mentioned is not mainly used for Raynaud's (as I have checked on wikipedia). I know about the drug called Felodipine and like to know if anyone had found any benefit from it. BTW, how was your Scleroderma diagnosed? Was it detected on your skin biopsy or blood test?

[StrixOccidentalis in reply to dacharya]

Yes, Sildenafil was developed for, ahem, another purpose, but it is used to treat moderate to severe Raynaud's. At least in the US it isn't a first order medication though. Usually you will be prescribed Amlodipine or similar first.

I'm not a doctor, but Amlodipine, Felodipine, and Nifedipine are all similar but they seem to have different half-lives. As far as I can tell, Amlodipine is the longest lasting and is prescribed as a daily dose. Nifedipine seem to be commonly prescribed in the UK and from what I have read here people take it multiple times a day. I hadn't heard of Felodipine until you mentioned it here. They all have been around a long time and seem to be relatively safe. Obviously consult with your doctor since they do lower your BP and can be problematic if you have hypotension.

Everyone reacts differently to medications, but in my case Amlodipine works to help control my Raynaud's. All other things constant (like ambient temp and physical activity level), I can tell when I forget to take it.

[dacharya in reply to StrixOccidentalis]

Thanks for the details. I guess Felodipine is also same thing but it's recommended by the Mayo Clinic. Drugs used in US are quite practical because FDA is very much straight forward in validating their drugs. So, how was your Scleroderma diagnosed? Was it done through blood test or skin biopsy?

[luna_lovegood in reply to glasslass]

Hi! I am planning to relocate to Scotland from Manchester. Do you mind if I ask whereabouts in Scotland are you from and if there are hospitals with rheumatology team who specialises in Scleroderma? Thank you!

[OldTed60 in reply to luna_lovegood]

Hi I’m in Scotland too. I’d definitely check out names of good rheumatologists with Scottish groups first because, unlike Manchester, Sheffield and Leeds etc, there are no Scleroderma centres here and no dedicated specialists that I’ve come across anyway. I had to travel to the Royal Free privately and see the Prof there last year to finally get a diagnosis and treatment recommendations. That said I have a lovely rheumatologist here but only got to be with her because my diagnosis at the time was thought to be predominantly Sjogren’s and her expertise is Lupus.

Answer to this question is that it depends how severe your systemic sclerosis is, what type and how badly it impacts on a person. Living in colder climates certainly places more limitations on what we can do. But the Swiss artist Paul Klee lived most of his life in Germany and had Systemic Sclerosis yet carried on working prolifically right up to his death (from scleroderma)

[dacharya in reply to OldTed60]

Is there any online consultation service?

[dacharya in reply to luna_lovegood]

I am not from Scotland. Is it possible to consult with any doctor online?

[OldTed60 in reply to dacharya]

Sorry but I have no idea - it all depends where you live. Here it’s all about NHS protocol and whether a GP will refer you - online or face to face, privately or on NHS. Even private consultations require a dr referral usually.

[EllaNore]

I was just diagnosed with Raynaud's a couple days ago. Although I suspected that I had it. I have several autoimmune conditions like pernicious anemia Sjogren's and I had Lyme disease for 45 years. But Raynaud's is new to me. I'm in Iowa in the US and it's very cold here in the winter but even in the summer I found myself in bed in 95° weather with a heating blanket on because I was freezing. My doctor gave me an ointment it's called Nitro-Bid. It's a nitroglycerin ointment that they want me to put a little dab on each finger tip and each toe once a day and it's supposed to open up your blood vessels the tiny blood vessels at the end of your fingers and toes. And I have to say there was a big difference. I didn't have to put the heating pad on my feet all day. And I didn't have to wear my gloves all day. Anyway I'm new to this forum but I'm a member of the pernicious anemia forum and I've been there for about 3 years. So this is all new to me.🙂

[StrixOccidentalis]

In my experience, medication definitely helps, but it is just one part of a number of things I have to do to manage my Raynaud's. Vasodialators can only do so much, and those of us here who have moderate to severe Raynaud's usually need to do more to keep the blood flowing enough to limit tissue damage and all of the unpleasantries that come with it.

I had what was diagnosed as Primary Raynaud's in my hands for 10+ years. It was mostly mild, and deemed primary because there didn't seem to be an underlying condition. Then what seemed like all of a sudden one winter, my feet went crazy. Tingling, burning, freezing, aches and pains and discolored tissue. This was coupled with fatigue and a general sense of being unwell with no answers which was stressful and disorienting (which fed back on itself, making things worse.) Thus began my journey.

I will not bore you with the details, but I was diagnosed a couple of years ago with SSc and while my doctors have been great, I feel like I have largely been on my own in terms of learning how to live with it. This disease expresses itself differently in all of us so doctors tend to give general advice and you're left to figure out what that means for you. Which leads me back to all of the things I have to do to manage Raynaud's. I take between 5-10 mg Amlodipine daily (Nifedipine isn't commonly prescribed in the US), dress warm, exercise is really important, and I had to change my life a bit to manage stress (a huge trigger for me.) When working at my desk, I keep my feet on a heated pad. I also have what is like a little heated sleeping bag for my feet and battery hand warmers that I bust out when things flare up. Oh, and I highly recommend heated car seats! A heated steering wheel is the dream, but those seem to only be available with the high dollar packages so I just sit on my hands.

All of that has helped keep enough blood flowing so the worst symptoms are controlled and I can live a fairly normal active life outside in the wet and cold PNW winters. I still get attacks multiple times a day and my feet and hands feel cold all of the time, but I can do the morning walks with the dog without hand warmers and I have even done a couple of winter backpacking trips!

[dacharya in reply to StrixOccidentalis]

Thank you for sharing your condition. How was your PA diagnosed? Which blood test confirmed it? I also get low on B12 but a chicken diet improved it last time. Do you get improvement from B12 supplements?

[dacharya in reply to StrixOccidentalis]

I feel very sad and feel like crying, after hearing your condition. But my hats off to you, after knowing that you are even doing your job with that debilitating condition. So, is it Systemic Sclerosis or Scleroderma? Was it diagnosed through blood test or skin biopsy? Do you get any skin hardening issue or breathing problems?

[StrixOccidentalis in reply to dacharya]

Reading many of the posts here can make me feel the same way. I have kept one someone posted about feeling anxious and alone open in a tab on my phone for 5 months because I've been there too many times myself. It's part of the journey and sometimes you need to cry. But really, I'm good. It's not totally what I expected for my 50's, but aside from having to slow down a bit, I'm living the life I want.

You ask about what kind of SSc? That's the million dollar question. So far it seems to be limited (CREST, so no lung involvement) but that doesn't mean you can't have organ involvement or other complications so I've had various baseline tests and I wait and see.

I was diagnosed with blood tests and symptoms following what I think is a fairly common trajectory (if maybe a bit faster than many.) When I first saw my Rheumatologist I had a history of Raynaud's, big puffy fingers (with some skin tightening), some telangiectasia and the aforementioned crazy feet. Blood tests all normal except for a positive ANA, 1:1280 titer, with anti-centromere antibodies. Rheumy diagnosed undifferentiated connective tissue disease and waited a bit to see how things developed. About a year later I started having esophageal issues and she changed it to limited SSc but I think there's always an asterisk next to these diagnoses as you're learning.

I haven't tried B12 supplements. I do take a multi-vitamin and D supplement. I fear that if I have too many pills to take I'll have to get one of those weekly pill dispensers which will just be another sign that I'm getting old. I'm fighting that one! 😂

[dacharya in reply to StrixOccidentalis]

Thanks for all that. I am glad to know that you are better now. So, in which hospiytal you were diagnosed?

[StrixOccidentalis]

Better? No. But managing well. I feel it is important to make that distinction since for most of us we're not getting better (though the dream of remission never dies.) Accepting this is one of the first emotional hurdles you navigate after diagnosis. (Don't ask me for tips because while I got there, I don't think I handled it well.)

No hospital was involved in my diagnosis. In the US with private employer provided health care, you usually start with your GP. In my case he ran basic tests and nothing showed up. It seems that when you're sick but the standard tests show nothing and you don't have easily explained symptoms, you get sent to the rheumatologist. I think I'm lucky because she seems to have some experience with SSc and ordered the tests, made the observations that resulted in the diagnosis, and set up the baseline tests to monitor progression.

From your posts I see that you're looking for answers but your tests and symptoms aren't necessarily aligning nicely with a diagnosis? If so, all I can say is to find a care team you can trust and focus on what you can control. And try your best not to Google too much!