Secondary Reynauds....Anyone had iloprost infusions?

Posted , 3 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

My Rheum consultant has requested a course of 6hrly iv iloprost infusions 5 days a week since i have 6+years of MCTD/Sjogrens/SLE and the Reynauds symptoms have worsened this winter and tip of index finger hasopen unhealed crack unhealed after several weeks...blood pressure erratic high normal to high. Nifedipine course for Reynauds a year ago produced horrible side effects and gp advised me to stop taking, so nothing taken since apart from my regular hydroxychloroquin dose...but am now prescribed loratan tabs from consultant plus antibiotics pending infusions...no date as yet...difficult tokeep positive with painful and tender finger a constant reminder things could be deteriorating........sorry to moan on ...just to know someone will read this is a comfort....thanks for that....

.

1 like, 4 replies

Report

4 Replies

  • Posted

    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.

    Report
    • Posted

      Thanks Lynne for your kind response... I hope you soon have a clear diagnosis, it's not good to feel uncertain about things, best to know the score i think and then come to terms with it....thanks again for replying and so keeping the thread alive and maybe it will lead to more info regarding iloprost infusion experiences. Best Wishes to you.
      Report
  • Posted

    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.
    Report
  • Posted

    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.
    Report

Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up