Well what can I say, off I go for my regular "chat" with my rheumatologist. I come away, having been informed I need to have an iloprost infusion (my first) , another lung function test, another heart scan and my Alkaline Phosphatase level is high so shall need to be monitored!! Wow that was some "chat". As if hair falling out, eyebrows disappearing (have found a very good answer to that particular problem Superbrow from boots chemist) mouth tightening, dry mouth, aches and pains, sleepless nights, and fingers that will not pick up things!!! Hey if I did not know better I would think I had done something really bad in a previous life, lol Thank goodness for this site, where we can have a moan and feel better for it. So thank you everybody for reading my tirade, and now I am going to get my fluffy blanket and vegetate in front of the television. Love to you all, wrap up warm and keep smiling.

21 Replies

  • I recognise everything in your message, At least they are keeping an eye on us. Keep smiling.

  • Hi zenabb, thanks for your reply, this site really is supportive.

  • Hey I'm with u, I dread my rheumy appointments... But as I'm unable to tolerate an infusion of any kind, I don't have to worry about that particular horror!

    Get that fluffy blanky and wrap up in the knowledge we're all with u in spirit!

    Sending you healing and positive vibes hun!

  • Hi gindy, thank you for your positive vibes, and my fluffy blanket is well and truly wrapped around me.

  • 😀 I've bought 2 fur (fake obvs) blankets from Sainsbury while they're heavily discounted. From I think £30 ish to £17.50. Haha there's one in my favorite chair, and one on the bed. Things like this are a blessing, as they keep us vitally warm, but comfort also!

    Are u able to tolerate alcohol in small doses? I've been having a small hot toddy at night, which is working wonders in helping me to drop off. But also warms your core. I know we need to be careful as too much, or even just a couple of drinks play havok with us. But yeah, atm a hot today is really helping.

  • I'm going to try that. Do u have whiskey or what?


  • Marymary991 I can't stomach whiskey so I've been adding a tot of brandy too a hot chocolate just before bed. It really does give a warning feel, and at bedtime even with hot water bottles and the heating on I often find myself having a raynauds attack as I'm changing into my jammies!

    The alcohol not only warms me up but helps me to drift off. I think caution should definitely be used tho, as I'd not want it to become a habit. At the moment I'll do it every other day or two days in a row then a day off.

    Let me know what u think of it after you've tried it.

  • My heart goes out to you . I had a phone call today with results of my gastrocopy , it seems I now have gastric bleeding , hiatus hernia , & ulcer 😤 this awful disease certainly keeps on giving 😟 Take good care to you all XX

  • Have you heard of the nisson fundaplcation? That is when they go in thru 4 little holes around your stomach and wrap the esophagus. It really works good for me. They only did a half a wrap because of the CREST disease. I never have anything come up in my mouth of anything any more. Sounds like that could benefit you, my friend.

  • I feel for you. im in Australia and the hot weather does not help my condition either.

  • Warm weather is good for he raynauds though.

  • This all sounds very familiar territory, tests , tests, tests, and I find some weeks I have several in one week and then none for a few weeks.

    I have a really nice Christmas snowman fluffy blanket, which gets used all year round. I spend all day in my recliner chair and I am now watching lots of Christmas films to keep myself from getting bored.

    Keep smiling!

  • Hi chuck hope you are well, when the doctor asked if you want to try the illioprost infusion it's really important you get it. It might not feel like it has done any different to your life with regards to the struggles we cope with on a daily basis. 20 year Studies have came to light and proved that the infusion gives a massive difference in the long term preventing our condition from being worse over the years. I've just had my third infusion in three years and now about the have my fourth in weeks increasing to 3 infusions total for the single winter period. I struggle mostly with digital ulcers and sore tendons in my legs. Always remember this is a slow desease and all the repeated tests are only looking for progression in all the possibilities of it effecting us. The lung function tests are the worst like!!!! Blow blow blow blow ! All the best and let us know how your doin x kind regards Daniel

  • What is a illoprost infusion. Don't know about that one. And what does it do for you?


  • I was just wondering the same? Thanks.

  • It's an infusion of the drug iloprost (so it goes into your veins via a cannula or line) it's usually for five days for six hours a day. It's a drug which dilates blood vessels and does something (not sure what) which often causes healing in your fingers of where ever is raynauds affected. It has side effects while it goes in which can be difficult to tolerate but the positive effects often seem to last for months after the infusion has ended (well it does for me)

  • I agree I often think wow I must haven been really bad in a past life or what have I done to deserve this. Its a horrible disease I wouldn't wish it on my worst enemy!

  • You have done nothing to deserve is just your luck! I have sys. sclerosis and I have a son in law who has ankylosing spondylosis which, to my mind, is much much worse.....his spine is bending and he is in chronic pain...going blind too as part and parcel of his disease..which is genetic apparently, He spends so much time in hospital receiving steroid rods into his eyes to help him in delaying loss of sight...other infusions to help the pain he has in his body. He spends hours in the loo because of chrones disease...another side effect of his AS. He has possible bowel cancer to look forward to when I am feeling low with what ails me....I think of a young man under 30 who is suffering so much more ....and I weep for him. So, please, when you are feeling down just remember that we may be ill but we can have so much to be thankful for....yes, believe it or not!

  • Prayers coming for both of you.

  • God Bless you, no matter how bad u feel on ur worst days, there is always someone out there worse! When i have a bad day and feeling down thats what i keep telling myself.

  • Thanks Sharon and Mary....positive thoughts do good feeling sorry for yourself as it doesn't bring comfort but causes despair...not good for you! So.......chin up and carry on! x

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