Hi Helen,
you state you are waiting for prescription? Is that for Rituximab? I believe I have Myositis and my main issue is I believe because of this bought on by gvhd. Myositis being muscle inflammation and this I believe why muscles are so week and I fatigue so easily. I do believe I also have some skin gvhd but how bad I am not sure as I believe the Myositis is masking it. Rituximab looks like a quite good 2nd line cure in UK for muscoskeleter issues such as myositis. This effects mainly my thighs that feel they are continually swelled and sort of numb because of it and also burning and tingling in thighs which are all also typical of Myositis. When I go to clinic next week I will see if I can mri to confirm or not if I have Myositis. Today my I went to day therapy clinic where I had my third Rituximab infusion over hours. So far it has been a month since my first infusion and to date I have not really seen improvements yet, but hoping I may get some slow improvements in next month. Again I have been too impatient hoping to see some results by now.
sounds like good news for you.! You are able to shower and swim. Be careful though as you don’t want infection and up as inpatient. Softening the skin sounds a good idea as it is likely to heal better if soft, but how do they plan to do that? Rezurock sounds like a good drug for that but it again takes time.
I am currently on really low prendisone steroids 5mg every 2 days. I don’t know how much the steroids contribute to my muscle weakness, mood swings, I just hope the doctor takes them down soon so we can stop.
as my progress does seem so non existence currently and has been like this for some time now, I guess it worries me as I need to sort my my mobility issue otherwise nothing else will improve, so I guess I am sometimes hard on myself and I am not really a person who sits around to wait for things to happen, I like to go and do, and I can’t do that I just have to wait and is frustrating and this gets me on low ebb. It is worse as Ias I have been like this for so long.
on your note I hope doctor has something she has something to soften your skin that does not take to long. I know Ecp also does this but it takes so long.
hoping for us both that we start having more gradual improvements now we are into our third year after sct where things should hopefully get better.
would love a coffee.
lots of love Dave
Hi Dave,
Just a quick update, I’ve got to eat something.
So far today I’m very sceptical about everything the dermatologist said yesterday. She, and a nurse, bandaged my feet ankles and last night I had lots of fluff stuck in the open wet wounds and caught pulling and tearing, pulling the flakey skin off. I doubt her permission to swim is sensible too. She said in the same breath not to take a bath. All a bit dodgy. She said she’d give me this that and the other and nothings materialised yet. Patience 
But I was really low this morning. My senior gymnastics helped me get out of it. Being helped by 80 year olds and being the only one sitting… but still..
Let’s have the coffee later, just got to force myself to eat for now LOL.
Hi Helen,
Try not to get too low. I know it is easier said than done in our condition. I understand what you say about the wounds and being sceptical. For a wound to heal you want it to scab and the more it is interfered with the more chance for the scam to come off. You also don’t want bits and pieces in there if it is weeping. I think a lot of what doctors say is to try and help pick up up. Mine does not really say anything. Don’t know which is worse. I am struggling like you to eat, never really get feel for hunger so forcing things down myself to eat, I keep hoping this will one day go. Everything seems to be at a standstill for both of us. I just hope our bodies don’t leave us here as I want to improve as I am sure you want to. I hate hanging around waiting for something to happen.
keep the coffee pot hot
Hi Dave,
I won’t get rituximab. I trust my team with that.
The dermatologist doesn’t belong to my sct team thank goodness. I just can’t get an appointment with another dermatologist practice so she comes to me when it’s aaabsolutely necessary. I won’t bother again. She’s based in the university dermatology department. I’ve got an appointment in a different clinic in July up in the Black forest. I’m sceptical to say the least. Maybe it’s good to be cautious. I can so easily get my hopes up. It’s not a good idea.
I found a good thing that seems to have helped me emotionally Dave. It’s an ap from the BBC called reels. There’s a short video on it about changing the way we feel about very dark challenging experiences. If you want I can try and post it here, or on Facebook. I was sceptical and a bit scared, but it’s light and helpful.
By for now, thanks for being there for me.
Helen