Seen rheumatologist at last

Appointment in October was cancelled yet again. GP contacted rheumatologist and I was seen at last this week. Definite dignosis of systemic scleroderma and secondary raynaulds. Gastric and bowel problems have increased and muscel weakness in thighs increased waiting for CT scan of lungs as more breathless. Going into hospital in 2 weeks time for 5 consecutive days for Iloprost infusions. Does this help the raynauds? I am increasingly frustrated that few people understand what is wrong with me and say things like "you look ok and my hands and feet get cold!" I try to stay positive and keep busy with sewing and other crafts, its too cold for gardening! Not looking forward to winter, have bought sheepskin boots and battery heated gloves.

Last edited by

11 Replies

  • I also hate the 'u look fine' comments. Iloprost is different for everybody. I have it when I get bad ulcers to help them heal but it doesn't have any long term effect on me. I know others who have it every 3/4 months as it reduces their raunauds attacks. Hope u feel a benefit from it!

    Also sat here dreading winter!

  • Iloprost dilates blood vessels wich is what we need badly. It must be the reason why you are being given the maximum number of days of Iloprost. But it takes time to take effect. We all know that people cannot understand our condition, it's too complicated for us and anybody else and it is rare. At first it makes us silent, but as we mature we realise that it is up to us to explain to people calmly and interestingly, Good luck.

  • Hello, make sure that they start the dose low and slowly increase it. Have your antisickness and paracetamol before you start to feel poorly. Some people tolerate it better than others. Best of luck

  • Had Iloprost for 6 hours a day for 5 days last week. I was mostly ok with it just a bit of a headache, some nausea at end of last day. I took the paracetamol and cyclizine at beginning of each day and infusion was started slowly. Not yet seen any benefit from it but I guess its early days. Heres hoping!

  • Glad that you had the Iloprost without too much discomfort. Hope that you start to feel the benefit soon.

  • I am glad you have now had a proper diagnosis. Unfortunately Iloprost is not for everyone. I could not have it as it caused serious low blood pressure for me. Fluoxetine did work for my Raynauds but the side effects were not worth it (I was tired all the time and fatigue is already a symptom of the disease). My cousin has Lupus and Raynauds and she takes Viagra and swears by it so I am going to make enquiries.

    Take care of yourself, listen to your body, keep warm and above all stay positive this is vital.

    Best wishes Helen

  • I too have systemic sclerosis (Scleroderma) and have had Iloprost each winter for the past three years. Previous to that I had very painful digital ulcers for years and suffered extreme Raynauds attacks which brought me to tears. However, since having Iloprost over 5 days,( taking the anti-sickness and headache pills beforehand) I have found it to be beneficial as I have had no further ulcers. Iloprost is tolerated differently by each person and as long as you make it known how you feel as the infusion progresses, the dose may be regulated to suit you. Obviously Raynauds, calcinosis etc. is still there but I have found it to give some relief. Good luck.

  • For your GI issues - have you considered removing all gluten from your diet? It hides everywhere - but it maybe worth it to help. I have celiac on top of systemic scleroderma & secondary raynauds. I have been GF before the other diagnosis' - but it will help w/your GI stuff.

  • Hi Bealepup, we are all going through a bad time now, we know this.

    I have found that dietary issues are absolutely critical towards well being of general health....I have learn't to eat what my stomach can manage, rather than what I want to eat.

    Take care.

  • Sorry Bealepup, I saw my Rheumatologist last week, he is very good.

    All your problems/symptoms mirror the same or similar to mine.

    The eating regime can help. Take care.

  • Just beginning to have some effect from Iloprost. Raynauds attacks not quite so frequent. Is there any connection to polymyalgia with scleroderma and raynaulds? As I have been having acute shoulder pain for last week this happens every few months, strong painkillers having little effect. My mother had PMR so wondering if I have that as well. Need to contact GP tomorrow about pain relief so will discuss with him then. I have a fantastic GP who has been sorting out all my problems this year. You begin to wonder with this disease what next!

You may also like...