Treatment for Raynaud’s

[Ligeiael]

Good evening, is anyone under any successful medication to prevent hands vasospasm?

Thank you

[lindyanne]

Hi there

Prevention is key - I have diffuse systemic sclerosis diagnosed 2005 with severe raynauds. Keep your head and core warm, back of neck, wrists, try and be active as much as possible if your condition allows. Always layer up and be ahead of the game. I have tried various medications over the years, some I can’t tolerate. Now settled on sildenafil (it works!) just get through the early stages of side effects (headache etc) then you’re ok, also I have iloprost infusions (five days each session) three times a year at the Royal Free. The goal is to reduce damage to the blood vessels as much as possible to avoid future problems, I’ve battled with ulcers for years and now acro osteolysis as a result of severe prolonged attacks so it’s worth being tuned in to your triggers and try and rescue the attack as soon as you can . Hope your rheumatologist is helpful, it makes all the difference.

Good luck!

[Ligeiael in reply to lindyanne]

Hello, thank you very much. I used to have ulcers in my toes every winter, in the last years not for some reason but the numbness and usual crisis in my fingers are a daily issue - despite using gloves (some with silver) and so on. I can try and ask my Dr about Sildenafil - do you perhaps experiment any swelling in your legs with this? Thank you!

[OldTed60]

unfortunately there are no treatments that prevent vasospasms - just treatments that limit the impact that prolonged episodes can have on the fingers and toes and other parts. The obvious preventive measures are extra clothing and battery heated gloves and socks, keeping core warm with layers of clothes and asking for work place adjustments if this is a problem for you. Beyond that there are blood pressure drugs which also dilate the blood vessels such as nifedipine and amlodipine your GP can prescribe. These can help some while others struggle to tolerate them.

For myself I’m on Losartan 100mg for hypertension and Raynaud’s and monthly one day Iloprost infusions. But in my area you have to have confirmed secondary Raynaud’s and have tried drugs I’ve mentioned and sildenafil to qualify for this. I have systemic sclerosis, Sjögren’s and hypothyroidism but this may be different for you if your Raynaud’s is classed as primary.

[Ligeiael in reply to OldTed60]

Hello, thank you for your reply.

I have tried calcium antagonist meds in past but my blood pressure is already low and struggle to tolerate them - I have been prescribed PROZAC but haven’t tried it as worried about the side effects and having them at work, I am aiming to speak to the rheumatologist again and see if something can be done. I do have primary Raynaud’s and Hashimoto’s with Endometriosis and it seems to me there might be a common base for these diseases related to the autoimmune system.

[OldTed60 in reply to Ligeiael]

Oh I see - yes BP lowering meds can be too much for those with low BP. Prozac I haven’t heard of for Raynaud’s but there are a couple of other anti depressant meds that others have mentioned here - can’t recall the names but Mirtazapine was one. I was given it once for low mood but I lasted around 5 days before telling my GP no thanks - it made me so dizzy and tired that I slipped and fell down the stairs.

Yes I’m sure there’s a link with endometriosis - many now think this awful condition is autoimmune but I’m not sure it’s yet confirmed by science. Hashimoto’s is obviously a common autoimmune - I have it too. I’m glad you’re at least under rheumatology for Raynaud’s. I don’t think the rheumatologists in my area see primary Raynaud’s patients apart from for nailfold capilliary testing. I had to travel all the way from Scotland to Royal Free last year to get unequivocally diagnosed with systemic sclerosis (another capilleroscopy and specific antibody swung it) in order that my rheumatologist could keep getting my monthly Iloprost infusions. I guess we can only give things we’ve been prescribed a chance?

[Ligeiael in reply to OldTed60]

Sorry to hear that, unfortunately dizziness is in between the potential side effects but at least you tried. I might consider it as well, just need being on annual leave so can manage better or try. Yes, there are many theories about endometriosis, certainly it is really awful but after a big operation I am just praying it stays quiet. Indeed, we can only give meds a chance!

[Lupiknits in reply to Ligeiael]

I have the low blood pressure problem too, which is why I now have Iloprost infusions each month for secondary Raynaud’s: they can monitor my blood pressure there. Prozac is something that’s offered now. I took that years ago for depression. Personally, I had no side effects with it, but everyone is different. For me, mirtazepine is the devil’s invention and I will never take it again!

[Ligeiael in reply to Lupiknits]

Thank you for your feedback, that’s useful!

[Jensue]

I have tried all sorts of meds but nothing worked until a consultant suggested Viagra! And it helps a lot for me. Still get some attacks but they tend to clear quickly . But like others have said layers of clothes & of course gloves, I’m never without my cashmere lined leather gloves