Hi , does anyone else take viagra for there Raynaud’s? I take 10mg of nifedipine 3 times a day as well, I was only diagnosed last year , I’d always struggled with the cold all year round but the last 2 years started getting frost bite which turned into ulcers on my toes 😏 I’m currently being tested for scleroderma, my rumatolagihst put me on the viagra because I’m still struggling with keeping my hands & toes warm , I must say I’m scared 😟
Thank you for reading
Alison x
Hi Alison,
It’s all a little trial and error I’ve found if I’m honest.
Like you I was on nifedipine x 3 daily and Sildenafil but found neither of these really worked for me, other than the side effects!
Diagnosed with raynauds and now scleroderma all by the age of 30! Lucky me
I’m currently trialling Tadalafil (another form of viagra type tablet) alongside a gastro tablet to help combat the GERD, stomach/digestive side effects I seemed to experience the first month of tadalafil. Hoping the weather will get milder and my flare ups will be less infrequent but we shall see. Also on 6 monthly iloprost 5 day infusions - this gives me a slight ease but not dramatic for how intense the 5 days are. Sorry I can’t be of better help and I’m not going to be that person who says layer up on socks and gloves - as trust me I know from experience that it’s not an answer.
Hopefully you will find the winning combination of meds and lifestyle to alleviate the symptoms and flare ups of your raynauds.
Thanks for replying 😊 bless ya must be hard for you , I’ve just felt so alone with it all , at the beginning I was just thrown some pills from my GP and referred to a vascular specialist who diagnosed me and just left me to it .~ told me to research it , then I’ve started getting a lot more joint pain and the pills didn’t help so that’s when I was referred to a rheumatologist and now starting to have the tests , hoping to find out what’s going on because my body just hurts , hope your new medication helps you and the warm weather hurry’s up for us all . X
Your exactly same as me I tried same treatments no rush to repeat iloprost infusion either. I gave up and stopped all medications as they didn't work anyway
Glad it’s not just me not responding to meds. The infusions… not looking forward to the next one. Only so many meds you can keep putting in before you wonder what other areas it might be affecting. You found any natural vitamins or clothing/coping strategies that work for you? I’m at a loss lol
I have taken it for about 5 years now with no side effects. 25 mg 3 x daily. It does seem to have healed and prevented any further finger ulcers. Also on low dose losartan for Raynauds.
Good luck Alison. Did the doctor investigate the possibility of you (and same question goes out to others here, if you’re reading this) having Sjögren’s?
Hi Georgeor , Thank you and what is sjogren’s ?
Sjögren’s is another AI condition.
It’s an AI condition that often goes along with Hashimoto’s and / Raynaud’s.
This is one of the better websites about it:
Thank you , I will have a look .
I was diagnosed with Scleroderma in 2019, I have pulmonary arterial hypertension now and I take 50gms three times a day of Sildenafil (Viagra). I also take omerprazole for acid reflux. I thought it odd but go with what my consultant says, I've only been taking them for nearly three weeks, have no side effects yet other than headaches.
I take sildenafil (viagra) for Raynauds. Apart from my face going a bit pink, which I can live with, no side effects and it has dramatically improved my Raynauds. Been on it about three years and also take lacidipine, as nifedipine gave me terrible side effects. Well worth sticking with the viagra if you can, I think xx
Thanks, good to know that. I have my next appointment with cardiologist in March so hopefully my 6 minute walk test might be better.
It’s not helping me yet , yesterday my Raynaud’s was terrible my toes are so numb it’s horrible, I hope it will help in time.
Hope it works for you , I’ve been getting headaches too.
Hi Alison,
I take 50mg of sildenafil 3x a day. I had terrible side effects to start with but if you can push through them they do ease off and get better. Now I only have facial flushing, which as a PP said I can live with. I’m allergic to nifedipine which is why I was started on viagra. I had horrific digital ulcers on my fingers that amputation was on the table if iloprost and then viagra didn’t work. I’m so glad to say that wasn’t needed and I haven’t had a reoccurrence of ulcers for the last 3 years. Professor Denton at the royal free in London is supervising my treatment plan annually and he’s so knowledgeable on scleroderma. I recommend reading some of his papers on scleroderma and the research he is doing.
Hope things get better for you and you get a diagnosis soon. Xxxx
Yes I take it three times a day x
hi Alison, sorry your having these worries. I have suffered with Raynauds since childhood ( both my parents suffer and numerous other family members). I was then diagnosed with scleroderma aged 30 when 10 weeks pregnant with my second child. Doctors unsure if pregnancy kickstarted it or not. That was over 19 years ago. I take nifedipine for Raynauds but have tried numerous vasodilators but I find that the only way to control attacks most effectively is to keep core temperature up and avoid situations I know trigger symptoms. It’s definitely a trial and error game and what works for me may not work for you. Wind chill, air con etc are big triggers of mine. I live in Scotland 🏴 so tend to hibernate in winter or go out in numerous layers. I always carry gloves even in summer along with a scarf/poncho for shoulders if it’s drafty. I also wear Merino wool socks in winter with insulated footwear as much as possible. No Glamour I’m afraid. Ulcers are extremely painful and treble to get healed sometimes, luckily with all my precautions I’ve not had one for a few years but do have a very painful chilblain at present that may breakdown but I’m hopeful it won’t.
Scleroderma is a horrible disease but it is possible to live a relatively normal life ( we just need to take more care and planning in certain things) but please believe me when I say that for the majority of sufferer’s with the limited version it is not the life sentence a lot of the literature in books and online will have you believe. I’m nearly 20 years post diagnosis. I still work as a podiatrist (but I did have to give up my NHS job to obtain more control and balance) and have a full life. I manage my fatigue by listening to my body and not pushing myself to hard. Learning to say no to people can be a challenge but you need to be a little selfish sometimes with scleroderma for self preservation. I hope your tests prove negative but if not we are here to listen, share and answer and concerns you may have. xxxx
Thank you all for your lovely reply’s 😊 xxxx
Hi Alisonmac65. I've had bad Raynaud's for decades, only in last 2 years also spotted as have Scleroderma. Been on slow release nifedipine for all of those decades, given me headaches for the first few days- a week each autumn when I re-start, and flushing but as said, I live with it. Never convinced it did much good but too scared to stop ... Since SSc I'm now on 2-10mg per day and now 1x25mg Losartan Potassium per day (in deep winter ) and finally I feel that the meds definitely help keeping things open. Also enhanced Turmeric (turmeric with black pepper) in capsules, ginger tea, garlic capsules and gingko biloba seem to help me.
But most of all, even with the meds, I always keep my core very warm and my extremities too - but the direct application of heat. Blazewear.com have a zip-up gilet that takes USB-connection power banks, and also battery-heated liner gloves. There are also battery-heated mittens on the Health and Care website that I use for winter walks when I don't need much dexterity. And Hot Rox plug-in rechargeable hand warmed that I use with more 'normal' gloves, inside my pockets or my much-beloved hand muff (we should bring these back into fashion!)
It just depends the type of day, type of activity, how much I'll need my fingers etc which of these options I'll use at any given time. But always have one or other with me, except in heatwaves. Basically, keeping my fingers as glowing and red as possible for as much of the day as possible, rather than cutting it fine - to they are constantly getting as much blood and oxygen as possible.
My toes haven't been too bad, but there are heated socks and equivalents out there too. Expensive, but an investment in my future.
I was put on Viagra almost a year ago for pulmonary hypertension which I hope it is keeping under control. Next hospital appointment in April. It has definitely helped the Raynaud's where nothing else did. Still do all the keeping warm rituals but it is easier now.
I also take nifedipine but not Viagra,instead I take fluoxetine (Prozac) other than that hydroxychloquin and methotrexateI have scleroderma and Raynaud's .. .still suffer with the cold
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