I have suffered with Raynaud's for many years. I don't tolerate drugs very well and typically have to find a homeopathic alternative. My rheumatologist is wanting me to take Sildenafil for my Raynaud's which is getting worse these past few years. Anyone taking and can give me advice on whether to start? My current issues in addition to raynauds since diagnosed in 2008 are GERD, COPD, peripheral neuropathy, dysphagia, and several more.
I'm just always nervous as I typically have lots of side effects with drugs.
Thanks!
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Byoungda
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I am the same when it comes to drugs, have tried practically everything over the years. I have tried sildenafil in the past but couldn't tolerate it at all. Now the only thing I have is 6 monthly Iloprost infusions. The only thing I would suggest is give sildenafil a go, start with the lowest dose and see how it goes. You have nothing to lose, many people tolerate sildenafil really well and have good results. Take
Thanks so much for the info. The prescription is filled and I have looked at it daily but hesitated each time. I'll give a try in the morning! I don't feel so alone now.
I have been on sildenafil for 6 years and take 3 x 25 mg per day with no obvious side effects. I think it does help my Raynauds and I have not had any ulcers on my fingers since starting on it, whereas I had several prior to prescription.
Sildenafil (aka as Viagra) is a drug that causes vasodilation (it opens up the blood vessels) so common side effects are lowering of the blood pressure (good if you have hypertension), headaches, nausea and dizziness. Mostly theses side effects last only a day or so and are much preferable in the long term to numerous painful attacks of reynauds and possibly digital ulcerations that may develop if not managed properly (which are awful and extremely painful).
For me Vasodilators don’t completely stop my attacks but they definitely lessen them and reduce the severity. You will still need to take preventative measures like avoiding drafts and cold places AMAP and keeping your core temperature up.
I do believe that some people use Ginkgo Biloba as a natural alternative if that is your preference. Maybe worth a try?
Like you I’ve had little successs with any other medication for reynauds symptoms, I’m 64 and was diagnosed with systemic sclerosis in 2005 and have myosotis overlap syndrome . I’m looked after by the Royal Free. Sildenafil has been recommended to me on several occasions as my reynauds attacks are severe, but up until now I haven’t been able to tolerate it. However last year I developed the worst digital ulcers I have ever had and even now after a year they still haven’t healed. So I tried again… on the advice of my amazing scleroderma nurse at the RF - I began by taking one tablet at lunchtime (after food ) and building up from there and it’s definitely working- such a relief.! Initially the side effects kicked in with flushing and headache but this has now lessened and hardly a problem, the benefits are beginning to show and I’d say definitely give it a try. I have three sessions of iloprost each year. Good luck and I hope it helps
I am in the same situation as I have had Raynauds for many years and tried herbal remedies first but the last year suffered really badly. I have also been having tests to determine if its primary or secondary due to my swallowing issues. I too have been unable to tolerate Nifidipeine and Amolodopeine and Sildenafil is to be discussed at my next appt. I had a chat with the dedicated nurse at my hospital and she also suggested supplements with a high content of GLA (3200mg I believe) and to try that for 3 months.
You’ve got great replies, so am not sure if my experience can be helpful, but, just in case it can, here goes:
I proved unable to safely tolerate nifedipine & iloprost for my childhood onset Raynaud’s (secondary to lupus & it’s secondaries eg Sjogrens, vasculitis etc. So I managed with self help techniques & then about 6 years ago low dose daily Losartan from my wonderful Rheumatologist.
This was relatively effective but gradually the Erythromelalgia caused by my Raynaud’s became so severe causing lots of red flag signs (nails stopped growing, wounds were extremely slow to heal, terrible oedema in feet, ankles etc, unable to wear anything on my hypersensitive feet (all year round no matter what the weather was like) except flipflops etc) that my wonderful dermatologist saw me in person during lockdown & was so appalled by the state of my feet & ankles that she urgently referred me to neurology which resulted in referral for neurophysiology tests which revealed it had segued me into sural axonal peripheral neuropathy combined with permanent vascular injury which my rheumy was then able to recognise & diagnose as ‘Ischemia reperfusion injury’ in my toes, feet, ankles: she was unable to see my in person, but has been looking after me for years so knows my case well & only needed our tele appts + photos sent on our patient portal + those neurophysiology test results to figure out I needed Sildenafil
So my rheumatologist started me on Scleroderma Protocol Sildenafil treatment, under our Specialist Connective Tissue Nurse…we monitored my BP closely & over about 9 months we gradually increased my daily dose of sildenafil to 150mg daily. Now my toe nails are growing & wounds heal faster & the oedema is slightly less, but because I was 68 by the time my childhood onset Raynaud’s severity was figured out, the ischemia reperfusion injury had had so many years to damage my feet, that I can never recover much more than I have. Even so, when I finally saw her in person for the first time in years a few weeks ago, my rheumatologist added low dose losartan back in my combined therapy treatment plan because its chemical action is different to Sildenafil’s so maybe this combo can help me a bit more. Time will tell
Am sending you every best wish …& hope you’ll keep us posted
I wish you comfort with your struggles. As long as I have suffered no one has ever understood my feet issues. You described mine. I wear flipflops all year and use v-toe socks with them. I'm glad you have a great rheumy. Because I worked, retired now, at a teaching hospital doctors come and go. Rarely have I ever had one that understands sjogrens. I will give updates on how I handle sildenafil. I return in December for follow upon my tolerance
they say there is some comfort in shared troubles…& your frank, kind reply does comfort me. Right now am ‘processing’ lot of extra tough health stuff in spine & mouth to exit GI tract as well as this feet stuff, which is all ‘all the worse’ due to all my early onset illness + ageing 🤷🏼♀️…so: thanks
Yes it really is a lot harder when doctors come & go. I suspect one of the reasons my rheumy took so long to realise the condition of my feet had become so severe is that I missed an in person appt with her due to my recovery from big spine op making attending impossible…which meant I went nearly 2 years without a rheumy appt & THEN when I did come to that appt just before lockdown I only saw a registrar. Yes, while I’d been waiting for that final pre lockdown appt I had been sending photos of my feet/ankles + explanations to my rheumy on our patient portal, but turned out that what she REALLY needed to realise I needed long term scleroderma protocol sildenafil was those neurophysiology test results
One thing I forgot to mention: starting sildenafil, I did have a headache for a few weeks, which resurfaced every time we upped the dose. I knew not to worry about the headache, cause am on lots of heavy duty long term oral meds & starting them up almost always involved temporary headaches as my bod adjusted to each new med. but I did have regular tele appts with the SCT Nurse who always knew what my BP had been doing + about the headaches. am lucky that my medics all make sure I don’t add on more than 1 med at a time: prevents confusing which med is giving the symptoms
Good luck & take care SassyGranny (great forum name😆)
yes, I take three a day at the higher dose. One of my fingers became blue and stayed blue and I thought I would lose the end of the digit. It was frightening as I’ve lived with Raynauds for 20 years and am good at managing it. I also have a weeks flolan infusion twice a year.
Definitely worth try, it's one of the standard proven treatments. I'm actually on Nifedipin without issues, but I'd recommend trusting the doctor. Homeopathy won't help, it's never been shown to work despite lots of money being thrown at it.
You are so correct. My grandmother taught me natural remedies many many years ago (i'm 73). Things have definitely changed especially when money became involved. Thanks for your comment.
I suffer with SSC . Amongst a list of thirty SILDENAFIL is one. I currently take 150 mg daily. It is a real help, no doubt about that. Without it I would have lost fingers and lord only knows what other problems I would have encountered. I found through bitter experience: With any drug these days there are many different manufacturers with different ingredients, binders, gums, many and various ingredients. When I first started taking Sildenafil everything was absolutely fine; slight headache, bit of a flush in the cheek’s nothing of concern. When I got my second issue of Sildenafil it was a different manufacturer (the first lot were viagra original). I took the normal dose as prescribed after a couple of days I started having problems. I won’t bore you with the details. My point is take the drug, it will help you. Give it a chance, three weeks at least. If you have problems then try another brand. It may be the binder or coloring that your body doesn’t like. If you have to try ten different one’s it’s worth it believe me. The benifits derived from taking the Sildenafil will greatly outweigh any minor discomfort you may have in the outset. It really is worthwhile.
Hello there. Yes I tried it last winter as Nifedipine MR was no longer in stock EVER.. but it didn't work.. but it gave me dreadful nightmares too... I had to stop taking it. Nifedipine MR is the moderated release version which is needed if you have heart issues as I do ie AF and leaky valve. It has always worked very well... the other options (brands) are Adipine and Tensipine... but they are really struggling to supply these at Boots so have asked me to ask my GP to only prescribe the generic version so then they can order either of the three. I was on 10mg for over a decade but now am on 20mg..
I have raynauds since my early teens (now nearly 60) but only started taking meds after I couldn't get in the door ie couldn't use my fingers to find my keys in my bag! And it was affecting my feet upwards too if I sat out in the cold too long. I would recommend those three in the same family - it changed my life. My hand was on the front of SRUK for a couple of weeks... here it is.
Anything else, do ask as I'm an old timer re the raynauds! I also have cancer, sjogrens, lupus, heart disease, inflammatory arthritis, IBS and slow transit (ie no transit!), bonkers tinnitus and all the other lovely things this lot brings..
I had the worst Winter ever last year and very nearly lost the index finger on my right hand due to worsening Raynaud’s causing an ulcer that wouldn’t heal. I am now taking Sildenafil 25mg twice a day and will soon be increasing to 3 times a day. Like you, I do not have a great track record with reacting well to new medication and it was something I was not looking forward to. However, I can honestly say by starting with 1 tablet a day for one week and then increasing to two, it has allowed my body to adapt and the side effects have been minimal.
It’s difficult for me to say if it’s really helping with the Raynaud’s yet as the weather has been so much warmer, but I’m really hopeful it will help me to avoid the stress and pain of last Winter when the temperature dips.
Thank you so much for all the wonderful responses. I was able to overcome my fear of taking that first dose of Sildenafil. I began after lunch last Thursday. Hardly any side effects. Yes I can tell a little dizziness but just getting up too fast, etc. Saturday night I was unable to sleep. My lower back was causing terrible pain different from normal. But it was worse when lying down which I thought strange. Fortunately I had a doctor's appt this morning for a follow-up. I mentioned the back pain and he assured me that it was NOT a side effect of sildenafil. Actually we had a lengthy discussion about the drug and he said the benefits I will receive will be far greater than any side effects.
I don't believe I would have ever taken that first dose without the support, kindness, and suggestions I received from this group. Thanks to all. Have a blessed day!
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