Secondary Reynauds....Anyone had iloprost infusions?

hi, Sometimes you wonder, why some people get so many health problems, rationally it seems its to do with immune system for many, be it auto immune or allergic responses. l was diagnosed with intersticial cysitus many years ago, after many years of undiagnosed symptoms, theyve not even decided for certain if its auto immune or allergic response, many of these conditions still a bit of a mystery to experts.

l have done well on meds for quite a few years but slowly getting worse over ,last year or two, last few months quite bad with debilitating fatigue general aches and pains being off it, last few days severe shoulder arm pain wrist, makes a change from usual worst area being pelvic. Waiting to see rheumy to confirm if fibromyalgia,linked to ic,  sjorgens ruled out. l didnt know what mctd was, checked and see another connective tissue

conditions as with sjorgens. l cant imagine the level of pain and debility your living with, so dont worry about having a moan, your entitled, and its understandeable, l hope the infusion help you maybe someone on here has had them and can advice. Are you in uk, as it seems to me by people l know with chronic health problems, immune and pain ones seems to have struggled more through this winter, be its been a quite mild one here in uk, but still taking its toll, l think its as much increasing envoiramental pollution increasing symptoms for the vunerable old and ill, but l guess the colder wetter weather adds to it. l know if l was rich l,d want a place in the sunshine to try help symptoms, but live in hope for that one, going to buy a sad lamp as alternative, see if that helps.

Hope someone can advice you, and you hear soon to start the infusion and they help.  Keep battling you never know what improvements in treatment are to be found in near future. Best Wishes.

No problem, makes me realise there are posters with more probs than me, but we do all want diagnosis whatever treatment there is, or not. Noticed last week or so l,m getting increasing rash on my face, something lve never had before, l can get skin probs, touch of eczma, psoraisis, just patch on elbow, but never on my face, but thinking good, it might give the docs a clue, sometimes they need a lot of them and to be obvious, now wondering about lupus, but wont get carried away as know it could be anythign insignificant, see what docs say. l think the infusions your due for will be quite rare, so might take a while for someone who,s in the know.  Good luck with i t.

Hi, really sorry to hear about this. I have been on Nifedipine ( Adalat Retard) now for nearly 5 months for my Raynauds ( lupus been getting worse for about 18 months now), the first 3 weren't so good and when I went back to Rheumy they were going to put me on IV iloprost, but I was also having alot of problems with the methotrexate, so they stopped that and put me on azathioprine instead. The nifedipine is helping me now I'm not on the MTX. If I miss the nighttime one I feel it the next day! My hands are still white, then red and then purple, they still go numb and I get pins and needles but this settles within an hour or two after I wake up, whereas before it would take half a day before I could use them properly. The healing is better now as well, I had a burn that I got by accident ( overshot an oven tray) that was there for a month but it has finally scabbed over. There are other Calcium channel blockers that you can take or there is research that says sertraline also helps ( not sure how as it is commonly used as an antidepressant). I know people react to pills differently, so I hope the losartan works for you, if not ask for an alternative or see if it is one of your other meds which is affecting it. I had a bad infection for a month and I was so poorly everything was worse, it could have caused a flare up as well, none of my pills worked for ages. By the way are you taking hydroxychloroquine as quinoric acid or plaquenil? Also I have naproxen for pain which is an anti inflammatory, you could ask to try this? I know it is another tablet, but if your hands are as bad as mine, I know I was desperate to take anything if it made a difference. Good luck with it and I hope you find something which will make a difference.