Hi Folks,
It's been ages since I posted on this site but was hoping that I could get a bit of feedback from those of you out there taking Sildenafil for help with the management of Raynaud's symptoms.
I've been to see my consultant recently and he has suggested I give this a try, I have CREST and have tried Nifedipine and Fluoxetine in the past but haven't seen any benefits with those.
Would be great to hear your experiences of this drug.
I have CREST ~ limited Ssc - and nifedipine didn't seem to help but have been on sildenafil for nearly a year and it does seem to help more, with no associated problems.
I think have a fairly mild type of Scleroderma compared to some of the stories I read about here. It has responded well to treatment by a mixture of immunosuppressant (Methotrexate), steroid (Prednisolone) and Sildenafil.
I am officially prescribed 3 Sildenafil pills (75 mg) per day, but i rarely need to take more than one per day. I may take a second one in the afternoon if I am outdoors in cold weather. On hot days a half of a pill is OK. Basically, I take them as need arises, bit regularly in winter - they help by significantly reducing ulceration. I do not experience unwelcome side effects beyond a feeling of having a 'hot' head. If I took three pills per day I'd expect to get stronger symptoms.
Please let us know how you get on.
Tim
Hi. I've been prescribed Sildenafil 3 times a day. Like one of your other responders I only take it if I feel Raynaudsy or during the winter. I think it helps but I do have some headache and hotness. I've avoided it lately as my BP has been unusually low and I know it would reduce it further. Hope it works for you
Hello, I take Sildenafil, 50mg 3 x daily. It does help with the Raynauds, I have very few full blown white finger attacks, although my hands often looks a dusky purple colour. No side effects. Hope it works for you.
I took it for 3 weeks at lowest dose. It gave me headaches and seemed to worsen the pain in my legs for a while but maybe this was just a coincidence. It also made my nostrils swollen and finally my mouth so I stopped altogether. It didn't helped with Raynaud's attacks but perhaps I needed a higher dose. The weather has been much milder since then but I plan to ask my rheumatologist if I can increase my dose of Losartan instead.
Hi
I also have CREST. A few years ago I took part in a drugs trial having tadalafil (viagra) (20g) with ambrisentan (20mg). Both had been approved separately but not together. Because I was on the trial I am able to continue using the 2 drugs and they have stabilised my pulmonary hypertension, the result of scleroderma. I don't know if they can now be prescribed - I get my supply from the drugs company. I am also on adalat. I find that with Raynauds the best thing is to try to manage the condition by avoiding draught and cold, dressing appropriately for the conditions, etc. Have you found silver gloves - available from the Raynauds & Scleroderma Association? They are really good. I wear them under my other gloves and you don't have to take them off to handle money, use your phone, etc.
Hi,
I have crest, systemic sclerosis scleroderma. It's not much fun to say the very least. Currently and for the last year plus I am taking 150mg sildenafil per day. In the great scream of things that is one heck of a lot. When first prescribed there were side effects. However, stick with it. After about three weeks once your body adapts you will, Love & hugs my opinion find it very helpful. I suffer badly from ulcerated finger tips. Without it I would be in trouble without any doubt. Bear in mind that there are many different manufacturers of the product. Should one give you problems, try another and so on until you get it right. The end result is well worth the trouble of trial and error getting dosage, product and indeed the time of day one takes it ( I have one 50mg morning, one lunchtime and one last thing at night. That works for me. I hope it will for you. Good luck with it.
Regards to all. Mark.
I have had a cocktail of various things... Corracten, Losartan, Sildenafil and Prozac (which all open the blood vessels)...
Its hard to say what really helped me, due to the excessive amount of drugs I had been prescribed for the bad state of my fingers (digital ulcers, necrotic tissue, nerve pains...) but after having had a brief break from Sildenafil and worsening symtoms with that, I have now improved again after being back on it. So this one helps me for sure! - Even though I have been on 3 tablets per day and now only take one per day, it has helps me a lot!
Not entirely sure about the side effects though as I still take Losartan and Prozac too... Prozac has by far the most crazy list of side effects out of the lot... but hopefully I can skip that soon! Feeling pretty 'happy' for the time being though...😉
According to the specialist I saw last week, Sildenafil is not as freely given out if something else helps too. But that's down to the cost of the drug.
I take 4 x 25mg of Sildenafil per day. I have Raynauds in the feet and legs and also sadly in the genitals and buttocks. Sildenafil was designed to open veins and increase blood flow. All I can say is that it works for me, not completely, but it helps. David
Raynaud's in only one finger?
My 3yr old son is showing signs of Raynaud's.
Nose bleeds and Raynaud's also ongoing lack of appetite
Raynaud's in dark skinned patients
Skin peeling hands. Is this a consequence of Raynaud's?
