Hi Steve / dieselsdinker,
can I ask, when you had Ecp did you have scleradoma ie tight skin, and if so how bad? Or was most of your gvhd skin issues in dermis ie skin pigmentation issues and subdermis ie skin sensory issues and sweating issues? After what sort of time period of Ecp did you start to see improvements? I do understand everybody’s relation to Ecp is different to Ecp with different timescales if any change at all.
Dave,
Most of my issues with GvHD was dryness and flakyness of my skin which was incredibly itchy and uncomfortable. It was also reddened and inflamed in places, particularly around my neck and eyes. I can’t remember it being tight particularly. I’d lost so much weight that I think my skin was a little looser than it had been. I guess the joints around my knees and elbows felt a bit tighter if anything.
The other effect (though I’m not sure it was GvHD or general recovery) was that I felt cold most of the time, even when everyone else in the house was feeling hot.
ECP was a slow process and frequency initially was fortnightly I think. There was an initial improvement in the first three months which gave them confidence to continue. The most noticable improvement for me was that the dryness of my skin improved as that was the most debilitating effect. At one point the frequency of treatment was reduced in conjunction with stepping back my Ciclosporin which allowed the GvHD to flare up again slightly, so the frequency and Ciclosporin were put back to the previous and reduced slowly later.
I hope this helps,
Steve
Hi Steve and Dave,
Just a quicky, my skin on my ankles is very tight, skin breaks and hurts, is very thick and flakey. My feet are numb but at points very sore and painful. I’m on number 20 of ecp, so at the start still really. I recently got painkillers for the polyneuropathie in my feet and painful skin, which allows me to sleep better.
Apparently ecp is good for skin gvhd, sclerosis and inflamation so I just need to wait. I’m becoming less mobile , even with my granny walker. Stairs are tortuous. General skin gvhd, as you described, eyes too, mouth, having a pee is painful. Roll on any ecp improvements!
Best to you both,
Helen
Hi Helen, good to hear from you. I understand how you feel. GVHD takes over our lives and for me I cannot move on until I get my mobility back, I seem to be on constant hold hoping and waiting for the scleroderma to let up a bit on my legs. I sometimes feel like that there is a slight improvement then a few days later I feel like I am in the same place I was six months ago. Then I feel like my skin on my legs is getting tighter. Like you I try not to go upstairs that much as is not easy or comfortable for me. Tomorrow is my 29th Ecp session in my 7th month so I am also in my early days of treatment. Mentally I have definitely been mentally scarred by this gvhd experience and my mental recovery I know will take quite a time after the start of my physical recovery, but the physical recovery needs to start first to give me the independence back to start the mental. Luckily I do not have any really bad skin peeling issues but to have a few dry skin issues namely my back and skin depigmentation at top of arms. Let’s hope things start to get better soon so we can hopefully move on soon with our lives.
Thanks Dave, wishing us all just what we need, when we need it. That would be great.
Helen
Have been reading about UVA1 treatment which is available in some dermatology departments in some hospitals which is used to break up the fibrosis in some peoples sclerotic skin. Will seek to find out more when see my consultant on Wednesday. Does anyone know anything about uva1 treatment or ever used it.?
Low-dose UVA1 phototherapy for treatment of localized scleroderma☆,☆☆
,★
MartinaKerscherMDaPeterAltmeyerMDa
Hello all,
Here’s the title of some research on the uva1 treatment. I just googled uva1 treatment. It looks promising. My only concern is that the chemo and ecp have made me more prone to skin cancers triggered by sunlight. I presume uva1 lightwaves are also present in sunlight. But I’m not a scientist:)
I guess it’s a good question for my next check up.
Wishing you all a peaceful evening.
Helen
Hi Dave
Are you having the light treatment already? What do your team say about it?
Best wishes
Helen
Hi Helen,
on 8th month currently of Ecp however gone wrong this week. Yesterday transport did not turn up, and today my blood was continually clotting in the tubes so today was a bit of a waste of time as they could not return my cells to me. So far had 33 treatments however not much seems to be improving at the moment so feel quite low
Sorry to hear that Dave
I has the clotting problem too. It went on for months. They usually found a solution but process slowed down. It has got better and I think it’s cos the ecp is helping. Have the feelinh the quality of my veins is improving. They say drinking lots of water helps too, but difficult cos they can’t release us for a pee. Do they rinse out the needle and kit with NaCl? They tried it with me, but with little effect.
I just got back from the clinic. I’m writing this after lying with eyes closed, lots of gel in my eyes, and I’m under a blanket. Need to get those slera lenses made. Eyes burning most of the time.
We’ll see these things through Dave. Even though it’s rotten.
Best,
Helen