Systemic sclerosis

[Lo1234]

I have limited cutaneous systemic sclerosis, but my doctor told me that my condition is overlapping and would progress to diffuse systemic sclerosis. My pheripheral veins in both hands and feet are damaged. It's difficult to get veins open and extract blood. My right foot was recently operated on, and my toe was amputated. The right foot has a severe ulcer and osteomyelitis. Due of the acute ulcer and osteomyelitis, some toes are amputated and others are lost. I'm taking injections of mythylprednisolone and cyclophosphamide, but they don't seem to be working. My doctor recommends that I start using biological medications, specifically ritixumab or illoprost infusion. Is anyone on illoprost infusion? Also, what is the price?

[fairy56]

Hi, I have Iloprost infusions every 6 months, I find it helps with my Raynauds. It is free on the NHS, I was prescribed it by my Doctor at my local hospital, hope this helps. Take care x

[Lo1234 in reply to fairy56]

NHS? Sorry I'm not getting

[fairy56 in reply to Lo1234]

Hi Lo, have just read your reply to another reply, and noticed you live in Nepal, I live in the UK, and we have a National Health Service. Hope you get the help you need. Take care x

[trunchalobesity]

So sorry to hear of your problems.I almost lost a finger tip this summer, I take Sildenafil (viagra) 3 times a day. I had a weeks long infusion of flolan at the QE, as they no longer recommend Illiprost.

I had two course of cyclophosphamide, each one infusion every month for 6 months. This was to arrest my lung disease.

I’m on a maintenance dose of prednisone but the game changer for me has been mycophenolate for my lungs.

My RA overlap has caused joint pain and swelling and it is now recommended that I have Rituximab but I have been hesitant but will probably start shortly.

Are you in the UK? Treatment is free on the NHS.

Best wishes and kindest regards

[Lo1234 in reply to trunchalobesity]

Not UK but I'm from Nepal

[trunchalobesity in reply to Lo1234]

I hope you get all the help and support you need. X

[kimbalina]

Ask your doctor about Botox injections. I was referred to a plastic surgeon who advised they are having lots of success with Botox to open arteries. Fortunately mine had nearly healed when I spoke to the plastic surgeon. But he advised me to get back to them if I had further problems.

[Sanmateogirl107]

WHY DIDN'T YOUR DOCTOR TELL YOU ABOUT (PRAZOSIN 1 MG) OR WILD LETTUCE EXTRACT FOR PAIN. I TAKE IT WORKS GREAT 10 DROPS UNDER THE TONMGUE MORNING AND NIGHT FOR PAIN. EBAY, MT ROSE HERBS HAS IT. 4OZ 18.00 AND UP LOVE JULIE