Temperature change

I have Scleroderma/Raynards and have the classic skin colour changes in my feet and hands in response to cold or stress.

I also get cold skin on my arms which feel much colder than my hands. This is made worse by the diltiazem tablets that I have been prescribed for my Raynards.

Lastly, when my skin is exposed to small changes in temperature it causes my skin to itch. An example of this is when I change clothes or go for a walk with bear arms.

My skin is not dry and I regularly use Dermol to wash and moisturise my skin. I have also been prescribed antihistamines which I use as a last resort.

Does anyone else have the same symptoms? I have over the last three years come to manage things but can be exhausting at times.

Thanks in advance

🙂

[KatieAnna]

Hi Clover 222I'm sorry to hear how much you are struggling. I have scleroderma and my earliest symptoms pre diagnosis were the severe itching all over. I had liver function tests which were fine so coped with it by using loads of moisturiser. It was triggered by changes in temperature like undressing, but also seemed to be there all the time. It was my whole body not just my exposed arms. That was about 22 years ago and it lasted about 5 years. It has gradually become less of a problem. Now I just have to moisturise a lot to keep my skin supple. After all this time I'm still living a fairly normal life with adaptations that have become the norm and don't stop me from getting on with life, albeit a bit more restricted than I expected. Good luck with coping with all the weird symptoms of this strange disease. Sending loving thoughts.

[Hidden in reply to KatieAnna]

Thank you KatieAnna

Your story sounds so much like mine. I was diagnosed about three years ago and the itchiness was unbearable. It has now lessened from my initial diagnosis so I am hopeful in time it will mostly disappear with skin management. Maybe I can get my Raynaud's medication changed, as it seems to make my symptoms worse. My consultant was very dismissive so it's good to know I am not the only one with these symptoms. Thanks again for you message and take care. 🌼

[KatieAnna in reply to Hidden]

I hope you find a solution. I think someone is doing research into early symptoms including itching. You might find it through SRUK. All the best x

[OldTed60]

Hi there. Yes I was getting severe itching and cold in arms 3 years ago when newly diagnosed with scleroderma. I already had Sjögren’s and RA in my mix so now a sort of MCTD.

Someone here recommended Dermacool and this seemed to help briefly. Finally I had follicular rash up my lower arms and spots which extruded in spots and my rheumatologist sent me to the dermatologist who diagnosed some kind of perforating cholangenosis - a very rare condition mostly associated with diabetes and advanced kidney disease but occasionally seen with CTD too - including Scleroderma. She prescribed Dermovate to apply sparingly when these perforating spots start to form with intense itch.

But then I started Iloprost and now IViG and both have really helped with the itch and prevented more spots as she thought they might.

I think cold weather is the trigger and she explained it usually is - although my Raynaud’s has been just as bad, if not worse, my skin has stopped itching and I’m struggling much less with skin rashes since the first IViG. Itching is the total pits I know. I have had eczema since I was tiny but the itchy arms of 3 years ago were in a different league - almost a neuropathic itch. If it’s the Raynaud’s med that’s causing it I’d speak again to your doctor about changing to another. I take highest dose of Losartan for mine and hypertension along with 3 monthly Iloprost.

[Hidden in reply to OldTed60]

Thanks OldTed60It is so good to know I am not alone. I have also had eczema since childhood. I was seen by a dermatologist when I was newly diagnosed with Scleroderma and they prescribed Diprobase. This made things 100 times worse but Dermol has definitely helped. Thanks for the suggestion of Dermalcool I will look into getting some. I was also prescribed fexafenadine 180g tablets up to 4 a day. I took 2 daily for a while then reduced it down to 1 daily as I wasn't sure if it was helping that much. I now only take them when the itching is really bad and it seems to be effective. As with any medication they all seem to have side effects. Fexafenadine causes a very dry mouth 😪 Thank you again 🌸

[OldTed60 in reply to Hidden]

It’s always good to find we aren’t alone and that others have come out of the woods with certain symptoms or conditions. For me this invisible itching was worse than pain - it’s like being tortured!

Another suggestion - my dermatologist changed me from Dermol to QV wash - which is brilliant stuff I get on prescription. She didn’t like Dermol for some reason . I also get Hydromol to use as grease and as barrier cream.

I couldn’t tolerate Fexofenodine - it gave me even dryer mouth and palpitations so I stick to nightly Clorphenomine and add Benadryl when I’m getting IViG - which gave me a hideous blistering eczematous rash and something like pompholyx on my hands. It’s a plasma of IgG and IgA and comes from blood from donors so the allergy could just have been batch related but I’m getting a different brand this time.

[Hidden in reply to OldTed60]

I agree with you itching is just the worst and people who have not experienced it have no idea how it is all consuming. It is not just a fleeting itch,it effects everything and is so mentally tiring. Thanks again for your help I feel so much better just talking to people who know what it is like. Take care 🌸

[mauvefinger]

It's good to hear that others have Raynauds and itching. I've had Raynauds ever since I can remember as a young child. Varicous eczema was diagnosed about 20 years ago, and the awful itching anywhere on my body probably started about 8 years ago and has got progressively worse. I have now been tested for all sorts of auto-immune conditions with a negative result, and told that my itching and rashes are not eczema. Also that my problem is a hyper-sensitive skin, so like others it gets worse when piling on layers of clothes too endeavour to keep warm. Wool against my skin is an absolute no-no!

I can't use Dermacool as it makes me so chilly that I can't cope, especially at night; I can shiver in bed for ages if using that. For various reasons I have to sleep on my back the majority of the time, and thus my back often has the worst itch, though the itch can literally be (and often is) just anywhere apart from my face and neck where there are no clothes rubbing. It's an absolute pain!

I do find though, that if I get really bad itching in the night I can get out of bed and walk around and then get back into bed, put in earphones and listen to the radio/audiobooks/podcasts etc which seems to distract me somewhat. Not convinced that anti-histamines help or not. Very difficult to say!

[Hidden in reply to mauvefinger]

Thank you mauvefinger for your response.

When my itching is really bad, I also find that wearing loose clothing, so my skin is not exposed, and a walk with an audiobook are the only things that help to calm things down.

I also don't know if the antihistamines work.

The itching for me is worst on my legs and arms. I find I am not able to wear tight clothes because when I take them off it causes me to have an itching attack. Keeping my temperature constant definitely helps.

Take care 🌸

[mauvefinger]

thanks Clover222. My problem seems to be that in order to keep even reasonably warm in Winter (and sometimes Summer too!) I have to wear several layers which need to be close to my skin. Ah well! I do find that during the day I can distract myself by being busy and keeping happy, but nighttime is the real killer.

[Hidden in reply to mauvefinger]

Yes always worst at night. Thank goodness for phones and headphones ☺️

[mauvefinger]

Absolutely! And being lucky enough to have a good life with great family and friends and thus being able to be cheerful and soldier through (at least during the daytime!)

[Hidden in reply to mauvefinger]

💛

[bertie203]

I also have some itching sometimes, but not as bad as what you're suffering. My doctors don't have any good explanation for why it occurs, and I never realised it might be scleroderma related until now - but interestingly it used to happen mostly when going outside soon after showering (so probably temperature triggered, like in your case). Sorry I can't actually help with advice, but hopefully it helps to know that it seems to happen to plenty of us.

[Hidden]

Bertie203 I am sorry to hear that you have the same symptoms. I don't know if it helps but I only use hypoallergic shampoo soap etc. You have helped me in the fact that I am not the only one having these symptoms. We are definitely not alone. 🌸