hi ,
I have tried a few different meds for my raynauds including fluoxetine most recently. I haven’t found anything that helps and so stopped taking due to certain side effects .
Now the weather is getting cold my rheumatologist suggested trying sidenafil (viagra) . I’m just looking for any experiences with the medication please 🙏
🥶🥶☺️
I tried many different treatments for my Raynauds, none of which had any impact apart from Sildenafil. That was a game changer for me and helped enormously. At first it can give you thumping headaches (I was on 3 tablets a day initially) but the headaches subsided and I could gradually reduce the dose over time. I’d say give it a go if your doctors are suggesting it!
I was put on several different meds. Sildenafil is the only one that without any doubt helps. I get digital ulcers. I do vary my dose of Sildenafil up to 150mg per day max, and if my ulcers are bad and I up my dose accordingly I can see a definite difference within a couple of days. I don't have any notable side effects either.Sildenafil is my little wonderdrug 
My experience has been the same as the others; sildenifil is the only drug that has helped alleviate some of the pain of Raynauds. I still get ulcers/have iloprost infusions twice a year but this would undoubtedly be worse if I didn’t take the sildenafil. I started taking it at night to help my body get used to it and managed to avoid the banging headaches and flushing. I don’t take it through the summer but have started taking it again this week now the weather has turned a little and it is helping. You don’t have anything to lose so give it a whirl. Good luck!
My experience and use of sildenafil same as yours. Works well and minimal side effects
I.too found it more helpful than other drugs and didn't take over the summer. I'm wondering if I need to start with a low dose and build up gradually as i did when starting it.?
I’ve restarted a 25mg dose and will build up to 50mg. Having not taken it over the summer, I’ll end up with a cracking headache and very red cheeks if I go straight in for the full dose! Everyone is different though so do what you are comfortable with
Thanks sounds like good advice
Hi PBMB,
I have had the same experience as others above. I’ve previously lost a fingertip through secondary Raynauds but since taking Sildenafil I’ve not had another ulcer 🤞🏻.
Like tcogb I started on 3 x 50mg tablets a day but have now been able to reduce that to 1 a day. As it gets cold I will up that if necessary.
I’ve not experienced any side effects except a flushed face shortly after taking the pills and which goes fairly quickly.
Sounds to me like it would be worth trying.
Good luck 😊
thank you so much for your responses !
I am picking up my prescription at the end of the week 🙌🙌🤞🥶
HI, I have been talking Sildenafil (60mg per day) for close to a year for severe primary Raynauds; I do think it helps but I don't think its as effective as nifedipine for me. I was on a high dose of nifedipine and had side effects so rheumatologist thinks Sildenafil is a better option. I am female; problem for me is Sildenafil (as an agent for Raynauds) can only be prescribed by a consultant ; GP is unable to issue scripts for me.
Good luck with it
I tried the nifedipine but couldn’t tolerate the side effects and carry out a ‘normal’ lifestyle. I do think it helped a bit but I probably didn’t get it long enough because for side effects 🤦♀️
That’s a shame you can’t get a repeat prescription from your GP
I asked my GP whether I could get prescription from them or whether I needed to go back to the consultant & because they'd had a copy of the letter where he'd suggested trying it, he added it to my repeats for me so wonder why your GP can't/won't. Might be worth asking again?
Same for me. GP Prescribed after Consultant recommendation
Hi,
I was taking 70mg of Sildenafil for 12 weeks, i had no improvement in my Raynaud's and i did not get any side effects, i am going to try nifedionine, but not sure it will work if the Viagra did not help me.
I think most are worth a try yoi just have to weight up if the pros out way the cons .
Nothing has worked well enough for me so far to tolerate the side effects so keeping everything crossed for this one 🙏
HI,
The reason GP's can't prescribe Sildenafil for Raynauds is that the indication for which Sildenafil is licensed is not Raynauds and hence it is prescribed off-licence (GP's do not have the privilege to do this); my GP did give me a script for it before and the pharmacist would not give it to me. I am female and I kind of know the local pharmacist; she will only issue Sindenafil for me with a 'high-tech' script that comes from a specialist Hub and issued by a consultant. I have 6 monthly appointments with the rheumatologist which cost in excess of €200; a repeat script costs €120 so I might as well visit the rheumatologist as I can claim back some of the fee on my health insurance - not a great system imo!
Not sure where you are based but I am in ROI.
weigh up
I've tried all of them & none made any difference unfortunately. The Illoprost Infusions leave me wiped out for 2/3 weeks after as also have chronic fatigue so consultant has decided they're not viable long term. Am trying acupuncture & am back on 75mg of sildenafil to see if does make any difference whilst he's investigating digital Botox or a sympathectomy. Given my hands are freezing & getting 6/7 attacks a day , don't think they're making any difference. My GP has put them on my repeat prescription based on the copy letter they received from my consultant. Good luck, hope they work for you 🤞
I tried sildenafil many years ago but couldn't cope with the side effects. I now have Iloprost infusions, while they don't stop the raynaurds the ulcers are definitely much worse when I don't have the infusions. Have never been able to tolerate any oral medication.
thank you for all the replies ❤️
I just want something to work well enough that I can put up with the side effects 🙏
Started today so will keep you posted .
For those that have said it worked for them how long would you say it took to have a noticeable effect ?
TIA
I tried Sidenafil after trying nifdepine (both slow release and the normal) then amlodopine which all gave me side effects I couldnt tolerate. I tried this last winter after being prescribed by the rheumatologist. The side effect I get is stomach issues, I am ok if I dont eat anything when taking the tablets as it makes me nauseous when I do. Even tried splitting the pills which helped slightly but still causes problems. Never got up to the prescribed amount as I would like to be able to eat ! This winter I think I am going to try the natural remedy route and se how that goes.
Hi I'm the same, also was prescribed sidenafil. It's worked however I have naturally quite low blood pressure so found I got a bit dizzy doing things like climbing stairs (anything that raised my blood pressure). Found it irritating that I couldn't do exercise. So if you are the kind of person to take things easy it might work for you.
unfortunately it’s not helping me and I’m still getting frequent attacks . My gp has upped my dosage to 3x a day .
Tbh this is the only meds where I have tolerated side effects so I’m keeping my fingers crossed 🤞 such a shame you don’t have the same experience .
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Does anyone else suffer from arthritis?
