Chillblains

[Teeny8]

Hi, I have just been diagnosed with primary raynauds after years of suffering with winter chillblains. In November my chillblains got really bad on my toes and they turned into blisters and were stopping me sleep at night I even got chillblains on my fingers for the first time and some of my fingers turned white which first happened after I got my last vaccine. Anyway the doctor started me on nifedipine and I had loads of blood tests and was then referred to rheumatology. Is there anyone else in the same boat?

[Lupiknits]

On my first visit to rheumatology a doctor remarked on how cold my hands were (I thought that was “normal for me”). They took bloods and on my next visit they used the nail fold capilleroscopy which showed abnormal capillaries.

I now have Iloprost infusions to keep ulcers at bay. I was an positive and had two markers associated with scleroderma, of which I showed no signs. I took hydroxy. Some time later things progressed to systemic sclerosis which affects my entire digestive system. I now take mycophenolate as well.

This might be very different for you. It’s good that you will be seeing a rheumatologist x

[Teeny8 in reply to Lupiknits]

Well I’ve already seen a rheumatologist which didn’t help. My hands and toes are always ice cold too and my nose and head, I have to wear a hat indoors as my house has no cavity wall insulation so is expensive to keep warm. So sorry you got systemic sclerosis. I am dreading what’s to come. x

[billybob60]

Yes. I started getting chillblains on my fingers and toes last winter. This started a couple of weeks after I had my covid vaccine. As I am in my 60's, my GP diagnosed secondary Reynauds and referred me to rheumatology. The rheumatologist said that I had covid fingers. I had suffered from covid in June of that year.

In the meantime my GP eventually prescribed nifedipine but by that time it was late January and I was off sick from work as my hands were so painful. The chillblains cleared up but I don't know if it was nifedipine, the weather getting a bit warmer or me not working in the cold.

They have reoccurred this year and again my GP was slow in giving me nifedipine but I have been using it for 2 weeks now and haven't noticed much difference to be honest.

I am reluctant to get another covid jab through this though.

[Teeny8 in reply to billybob60]

I have always had chillblains on my toes starting about when I was about 18 but they just itched, I never had a burning sensation from them until last November and the pain stopped me from sleeping at night. I too haven’t had a covid jab since my finger went white and that’s about 2 or 3 years since. I started taking nifedipine the week before Christmas and have found that I am constipated and it gives me a dry mouth and i need to drink plenty or I get headache, but i guess these side effects are not too bad so I’ve persevered. Anyway I’ve decided I will only take the nifedipine during the winter.

[billybob60 in reply to Teeny8]

Last winter I only took nifedipine until the weather warmed up but, for some reason, my GP was reluctant to prescribe it again this winter. I also get constipated with it. For the first couple of weeks I also feel a bit like I am getting flu but maybe that is dehydration,

[cls_98]

Hi there

I have had Raynaud's for many years. I've been on nifedipine for a long time, but still got horrific chilblains on my toes, not thinking there was anything that could be done about them. Winter of 2022 I was diagnosed with limited systemic sclerosis after seeing a rheumatologist. I had all the usual tests etc. Not linked to vaccines, sorry, but I had also started to develop awful chilblains on my fingers at this point, so she started me on tadalafil. Since then I have had no more chilblains! I know that some people don't like taking more tablets, and neither do I really, but if they help, then I'll take them!

I really hope that you get to see a rheumatologist soon and that they can help you.x

[Teeny8 in reply to cls_98]

I’ve already seen the rheumatologist who was neither use or ornament. He got a trainee doctor to examine me behind a curtain whilst he was sat at his desk. Then she told him what she had found.

[Dizzy64]

I didn't know I had Raynaud's the tip of my finger just turned white like a wax candle in summer of 2011, gradually over 4yrs both hands were affected.I took pictures of them being white, purple, red and it was winter 2015 I couldn't sleep this one night for the constant tingling and it was then I went to the doctors and was diagnosed with Raynaud's started on 5mg nifedipine which made no difference so dosage was increased to 10mg 3xdaily and have been on that dosage since which I find works for me.

It's rare that my hands are warm and do get little blisters on my finger's. which I find if you keep them moisturised helps alot and in winter I wear ski gloves, haven't seen a Rheumatologist.

I do find if I hold anything for too long I lose feeling in my hands and I have to just drop or put down as my fingers lock and have to manipulate them so they are flexible.

One thing that I have found and think it's important to mention is to wear a thermal top under your clothes in winter as I found my core temperature dropped and I was freezing cold (teeth chattering). You have to bring your temperature up gradually,I did it by putting my dressing gown on over my clothes till I warmed up. I can't fully open my hands and am aware it is a form of Arthritis.

I'm lucky in the sense that I don't suffer with Raynaud's in my toes.

I have a chronic spinal disability so try not to go out if it's too cold.

I wish you all the best, keep warm and take care.

[Teeny8 in reply to Dizzy64]

You poor thing. Yes I’m dreading it getting worse but I guess it’s under control at the moment with the nifedipine. Just hope it doesn’t progress to schleroderma as I’ve read that quite a few people have developed this after Raynauds. I too wish you all the best for the future. Take care!

[Shorty100]

Hi. I’ve been taking Nifedipine since 2021. Nail fold test confirmed broken capillaries and further tests confirmed Scleroderma with multi organ and gastric involvement. Out of everything, the pain in my hands were the one thing that caused me so much pain and exhaustion from lack of sleep. During the winter all my fingers ballooned and it felt like each one was about to explode as the skin would stretch and swell so much. I also got many chilblains and ulcers. Silver gloves didn’t help although they do help for some. My consultant told me to increase the dose to 4-5 tablets a day during cold weather and I find that helped. I reduce the dose in warmer weather as nowhere near as bad. I believe there are creams such as Balmosa which just helps relieve the pain. Maybe ask your specialist if you can increase the dosage during the winter months. I really do hope you get the right help you need

[Teeny8 in reply to Shorty100]

Hi there, I don’t hold out much hope in getting help, I saw a professor in rheumatology and he had a trainee examine me behind a curtain then she reported her findings back to him. All he did was tell me that I’d got primary Raynauds which I already knew. Didn’t tell me anything that would help, said to just continue doing what I was doing! I also had a dry eye test but in my letter he discharged me after seeing him the once, so I never got to know the result. So annoying. Balmosa I’ve used before but it didn’t help much I have been using Snowfire for my chilblains, it really keeps your toes moist as it’s an emollient. Y daughter used to use it when she was little. Thanks for the reply, I wish you all the best.

[kali9 in reply to Shorty100]

Hi Shorty100, May I ask what test did you have that confirmed scleroderma? I have Lupus and Raynauds.

[SurferGuy]

Hi Teeny8 so sorry you're going through this. I' going through the same thing - albeit possible Chilblain Lupus. I posted here for info healthunlocked.com/lupusuk/...

I notice you mentioned you had it after your vacine. May I ask what vacine please?

The reason I ask is I spoke to my cousin on the weekend who told me her absolutely fit and healthy husband has all off a sudden started to get Raynauds on his hands and feet and he's now walking around the house with gloves and 2 pairs of socks. And this just happened immediately after his covid jab. He's a physio therapist and is hardly ever ill.

This led me and my wife to check when I had my covid vacine. It turns out I had the vacine a few days before the nightmare started.

All of this is far too coincidental to ignore and ill be discussing with my consultants when I see them.

[billybob60 in reply to SurferGuy]

I'd be interested to hear what your consultant says about this. I am convinced there is a link but my GP just shrugs it off. It is highly unusual for people to start getting this in their later years. As my rheumatologist diagnosed covid fingers, I wonder if the vaccine triggered this.

[SurferGuy in reply to billybob60]

To me, looking at the time lines and facts makes me feel that this needs to be looked into by the professionals.

Mine kicked in within a couple of weeks of my jab. My cousins hubby got Raynauds within a few days of rhe jab. Youre saying something similar.

I will be asking my consultant when I see them.

[Teeny8 in reply to SurferGuy]

Hi there, I had 3 covid vaccines in the same year. The first two were Astra Zeneca, but the third I had done at my GP surgery with a flu vaccination, I don’t believe it was Astra Zeneca because I think in December 2021 they had stopped giving Astra Zeneca because of all the blood clots. I think it was either Pfizer or Moderna, I’ve just phoned my GP surgery and asked but she said she couldnt find it written in my notes. But yeah, I too believe it was a consequence of having the vaccine I think it was the vaccine that set it off. Although my daughter has raynauds too. So I don’t know if it’s an hereditary thing also. My main concern is that in 2017 I had my gall bladder removed and i was written to after this saying that the neck of the gall bladder had severe vasculitis which was a very unusual feature and that I should be seen back in clinic so that systemic vasculitis can be ruled out. I will look into this further this year as it seems to have been forgotten by my GP. I Hope this helped!

[billybob60 in reply to SurferGuy]

I've just looked at my health record and my last vaccine was Omnicron

[Teeny8 in reply to billybob60]

Yes I believe there is a link. Besides the vaccines have not been out long enough for them to know what it can and can’t cause.

[vac2]

YesFor many years

[SurferGuy]

Hi All, I promised to give you all an update after my dermatology appointment, so here I am. Rather than post it twice, I've posted the update on my original thread below, so please do have a look. Or if you want I can copy and paste it here too 😀

healthunlocked.com/lupusuk/...

[billybob60 in reply to SurferGuy]

Interesting that your consultant admitted that there could be a link with the covid jab. I'm not getting any more covid vaccinations.

Your chillblains are so much worse than mine. I'm glad you've had a diagnosis. Hopefully it'll result in some easing of your pain,

[SurferGuy in reply to billybob60]

billybob60 may I ask what you take to treat your chilblains please?

[billybob60 in reply to SurferGuy]

5mg of Nifedipine 3 times a day. It does help inasmuchas they aren't as bad as they were. But they are still there. I don't want to ask for a higher dose as I'm finding they are giving me a bit of a headache. Pls, for some reason, my GP seemed reluctant to prescribe them this winter

[SurferGuy in reply to billybob60]

I was prescribed this but had to stop because of the headaches. I've now been prescribed Tildiem. Just started so fingers crossed 🤞