Anyone had success with Tadalafil for treating severe Raynauds?

[-missymoo]

Hello all

I have Systemic Sclerosis and Secondary Raynauds. Have tried (all separately) Nifedipine, Losartan 75mg, then Sildenfil, GTN patches, combined Losartan and Fluoxetine all with NO success. Professor Denton has mentioned that I am a candidate for Tadalifil. Just wondering if anyone has had success with this drug? Starting to lose the will on this.

Thank you for reading 😊

[SpindogE]

I was diagnosed with severe Raynauds and limited Scleroderma last August. My Rheumatologist prescribed Tadalafil 10mg daily at that time. It did help me a lot the first few months, my recovery from raynauds attacks was much quicker. However just this week I have had the dosage of the Tadalafil doubled to 20mg daily as my Raynauds has been bad and now have constant pain, pins and needles in my hands and feet. I'm hoping that the increased dose will help, if not I am to be booked in for the Iloprost infusion treatment. Fingers crossed the Tadalafil 20mg works!!

[-missymoo in reply to SpindogE]

Thank you! Hopefully it works for 🤞

To date nothing has worked, thinking Iloprost if doesn’t x

[SpindogE in reply to -missymoo]

I think we all would try 'anything' for a reprieve from the symptoms of this dreadful disease! I hope you find Tadalafil beneficial to you.

[-missymoo in reply to SpindogE]

Yes, you’re absolutely right!

Can I ask where you are? Where I am they try and not give infusions unless you have ulcers/sores.

[SpindogE in reply to -missymoo]

I live in County Down Northern Ireland,

My Rheumatologist suggested the Tadalafil when I asked about the Iloprost infusion last year.

My hands were blue, almost black when I saw her last week and she increased the dosage of the Tadalafil, I would prefer it over having to attend the hospital for the Iloprost infusions for 5 days at a time, 3 or 4 times a year.

I don't have any ulcers or sores at present but I am having difficulty using my hands through the painful cramps and weakness I'm experiencing.

My fingers are always swollen and cramped into a claw first thing every morning, but I'm unsure if that's because of the Raynaunds or the Scleroderma.

It makes day to day activities difficult, sometimes impossible to do. Buttons, zips, taking money from my purse, handling raw meat, peeling/mashing potatoes etc I'm more reliant on family to 'do' things for me now which is very frustrating as I've always been independent!

[-missymoo in reply to SpindogE]

It’s absolutely awful isn’t it! The pain is insane. I too struggle daily with basic stuff, started dropping things and often can’t use my worst effected hand when driving as it can’t be touched because of excruciating pain. I’m really loosing hope that anything is going to work. Fingers crossed 🤞

Take care x

[KatieAnna]

Hi I'm sorry you're having so much pain. I moved from Sidinafil to Tadanafil over a year ago due to the headaches I had with Sidinafil and my Raynauds hasn't particularly decreased but the pain is massively improved. I haven't had any side effects either. I love it! I only need 1x20 mg on alternate days. Good luck. X