Hi all, I’m looking for tips and information on the ecp treatment I’ve just started (4th week). The gvhd skin is affecting my legs, arms and now eyes and mouth more and more. Anyone any experience of how long, if at all, it takes to work? Should I reduce fat intake before and after? How many days do I need to wear sunglasses afterwards?
Any tips on dry mouth?
Hi Helen,
I am currently on Ecp for skin as my skin has become very sclerotic due to gvhd, ie it has become very tight in bands above and below the knee making me very inflexible especially walking and now I can only walk like peg leg for a very short time before feeling very fatigued and unstable. I also seem to get scleroderma in a band around torso where I had lumbar punctures and around shoulder where I had a skin biopsy and these seem to continue to seem tight. I am taking Ecp every two weeks for two cosecutivr sessions and I am currently on my seventh and I have not noticed much difference in skin yet but it has not got worse. My liver gvhd has improved though which I believe is down to ecp. I am currently also on 7.5mg prendisolone. There are many persons with gvhd skin issues on a Facebook gvhd page mainly from US and I saw a survey that 23% saw improvements in gvhd by Ecp in 5 months and 50% saw results in over 6 months. As everyone is different with thier bodies, treatment etc the response will also be different in all of us. I am sorry I have not had a positive outcome to feed back to you as I am going through it like you. Hopefully someone may give more encouraging news or a success story. Good luck and keep fighting.
Hi Helen and Dave,
It’s several years since I had ECP for skin GvHD so my memory is a little hazy on the details but I’ll give you what I can recall of my experience.
I ended up having around 30 cycles of ECP over the course of about two and a half years. At first I think it was weekly or fortnightly intervals and after a few weeks they reduced the frequency gradually. It increased to monthly, six weeks, bi-monthly, and I think the last session was three or four months.
It took a while to see a noticable effect and when they tried to reduce my immuno-suppression at one point the GvHD flared up so it was put back to the original rate. Throughout most of the treatment I was still on Ciclosporin and a low dose of Prednisolone, both of which were reduced towards the end.
I can’t recall any special advice about fatty diets, though it would probably make sense to not have anything too fatty in case it affects the machine. Maybe check with the team doing the ECP? As the hospital was quite a way from home, I used to plan the sessions to have a late afternoon session, stay in the hospitals patient hotel overnight and have an early morning session the following day. I’m trying to remember whether I had a cooked breakfast or cereal in the hotel!
I think the advice was to wear sunglasses for at least a couple of days afterwards whilst outside, until the UV reactive drug had worked its way out of the system. I was also advised to wear long sleeves and gloves whilst driving due to my hands and arms being exposed close to the car windscreen. Generally during the treatment I tried to keep covered up whilst outside anyway as the sun could cause the GvHD to flare. It’s probably about 7 years later now I have no lasting effects and can sun bathe happily.
It does feel like a long time to be continuing treatment after your transplant, but it’s worth persisting. My medical team used to send me regularly to the medical photographers to have photos taken for comparison and to monitor progress. I remember seeing the comparison between some of the early and lat ones and the difference was quite dramatic.
GvHD doesn’t work for everybody, but from what I’ve seen it does appear effective for many. I hope it works for both of you, and for others going through the same.
To both of you, keep going and hopefully in time you will see results.
All the best,
Steve.
Hi DaveT and dieseldrinker,
Thank you both for your posts, so supportive. I’ve ve just got back from my 5th week’s ecp, one night and 2 consecutive days. After spending 8 months in the same place lying in bed after my transplant with acute gvhd, I’m realising why I find it so very challenging being there. To find your supportive posts on my return home, well, you both really helped me just being there.
Today I was seen by a dermatologist and she wants to keep track of a new patch on my face. I wear sunglasses, even indoors for the first 24 hours on their request. I have some expensive but well worth it sun cream with 100sun protect factor. My ankles sound similar to your leg bands DaveT, leading to difficulties walking and my face is now going patchy and changing colour. But that all said, the good news is that they are reducing my ECP to every second week. I nearly cried with joy at the news. They are keeping tabs on things when I’m there, with check ups, examinations and all, but they can see in my blood values that it’s taking effect. I’ll keep you posted!
Hi Helen, thanks for the update.
That’s good news that they feel confident to reduce the frequency of your sessions. They will probably only be able to reduce it gradually so you may be on fortnightly sessions for as few cycles now before they can step it back a bit further.
I wasn’t back at work when the ECP started so I didn’t find it too disruptive. The hospital was about 60 miles away from home though so it worked out well to have a late afternoon session, overnight stay and an early morning session to keep disruption from home to a minimum. I used to take an iPad and watch a film or video or listen to music during the sessions, which were typically a couple of hours each. I often used to just dose off in the chair which helped pass the time.
My skin GvHD affected mainly the skin around my eyes and neck, and the skin was blotchy, red and dry and I’m not sure whether it affected my hair growth as the hair on my head was really thin. I look back at old photos of when I had the GvHD and I looked so old and wrinkled! I’m pleased to say that once the GvHD had gone my appearance reverted back to more or less normal.
Keep plugging away, try and be patient and persevere and the ECP will hopefully resolve your problems eventually.
Steve
Thanks very much Steve. They always have problems with me cos thrombozytes level is so high my blood coagulates really quick and stops the machine, even if they do find a functioning vein. The hospital food is a problem too cos of my gvhd mouth, so I take all my own food, medications and creams. That’s why I’m more than over the moon that it’s every 2 weeks now. I get the feeling the ecp is working, the fatigue is less. .. and my thrombozytes are down a bit.
I’m pleased to hear there’s hope for me to go back to a normal looking person, at the moment .. wrap around sunglasses and FFP2 mask. I look like a bit of a zombie.
Hi Dieseldrinker62
Hi Steve, that’s a good tip about the timing, afternoon and early, I’m going to try for that too although they want everyone early and finish early. Tomorrow morning is a late start at 10am. I’m delighted to read you’re 7 years on… it gives me hope.
Best wishes
Helen
Hi Steve and Dave
My ankles are going like the bands round your torso and walking is becoming more painful.
To be honest, I think the ecp is affecting my mood too and bringing me down a bit. I have a therapist , thank goodness, but he’s not super human but he is definitely better than nothing.
I’m struggling at the moment but reading over your posts again helped me. Thank you, both of you,
Helen
Hi Helen. Sorry to hear the gvhd is getting you down, I find it does the same to me. My mood swing is up and down like a yo-yo and I keep thinking there is no end in sight. I too am currently like you I have theses tight bands around my legs from ankles to mid thighs and also around torso and my shoulder. Some days these seem tighter than others. I think the best analogy is like bands of concrete as the weight makes it difficult to propel ones self and difficult to bend due to weight. I am still on 7.5mg of prednisone and Ecp every second week and now on about 13th session. I feel often this is not getting me anywhere , but have to remember it is my body doing all the fixing not the drugs. The drugs and Ecp are just holding the immune system back from being too reactive while the body does the work for the new immune system to accept the existing cells in your body. Unfortunately we all just have to be patient for this to happen. We often get too impatient and keep wanting more drugs to fix the problem sooner. However with the drugs developed to hold back different parts of the immune system we quite often cause more issues from the side effects and the body repairing itself can take longer due to the damage some of the drugs can do due to the side effects. If your gvhd is staying fairly stable and issues are not increasing try to stay on your current regime. If they are getting worse it would be best to speak to your sct team. We need to stay positive that we will eventually get there one day and your body is doing the best to get there, we just need to keep it well nourished as best we can, well rested and exercise a bit if we can as this also helps with flexibility as well. My thoughts are with you, I am going through this with you and we will get there!!!
Hi Helen, I also forgot to mention that most persons who have seen the benefits of Ecp for skin gvhd did not seem to start seeing effects until after 6 months Ecp and it was still slow progress after that. I believe for me it helped reduce my liver function alt results. Prednisone helped bring down my gi gvhd where I could hardly swallow especially most tablets. I am currently trying to hold fire on the steroids and Ecp hoping I may start to see some further progress soon. I recently bought myself a revitive medic which works a bit like a tens machine and exercises the muscles in my calves and helps the blood flow and has brought down the oedema in my legs and this little bit of progress has made me feel a little better. However I believe the revitive medic is not good for anyone who has deep vein thrombosis or pulmonary embolisms. Any little progress whatever it is means you are going in the right direction. All the best.
Thanks Dave, you’ve said lots of reassuring stuff which only someone who really knows could say. This gives me trust and belief in what I was losing.. patience. I’ll keep you posted.
Sounds like the skin with the ecp might well take ages. I’ll see this one through too. Thanks so much.
HI Dave and Helen.
Dave is right that it does take an inordinate amount of time to see some improvement with the ECP. I was on ECP for around two years but it did eventually cure my GvHD, so please persist with it and give it chance to work. It’s an expensiive process so I suspect your clinical team wouldn’t continue if they didn’t think it was being effective. I know it feels like your treatment is dragging on, but keep going as it will hopefully eventually show results.
All the best,
Steve
Thanks Steve, you’ve helped me (and my hubby) accept the situation better. Not easy but patience patience… the neuropathy doesn’t help but patience will get me through this.
Best
Helen
Hi Helen,
how is your tight skin scleroderma? And the Ecp sessions going? I on Monday and Tuesday went for my Ecp sessions. I was on my 11th round ie sessions 21 and 22. I did not feel too bad after my sessions but today the day after absolutely worn out with no energy and I feel really rough. I am not I’ll I just think the Ecp process takes so much out of me. I know the old T cells are not replaced until 24 to 48 hours after the treatment so I guess the energy replacing the T cells could be what tires me. I cannot see much change to my gvhd at the moment from the Ecp except for bringing my liver gvhd down to nearly normal levels and also maybe keeping any more flare ups at bay. I have to admit I have throughout all when been in presence of other company or at appointments always kept masked as any flu, colds etc can bring on flare ups and I wish my body to spend its resources sorting out gvhd rather than fighting new flare ups from colds and flu. I hope you are making better progress than me, however I know it is a long process requiring lots of patience and many ups and downs.
Hi Dave
I’m right with you. I had a really bad day yesterday, today a little better. That makes sense what you said about energy replacing old t cells. I didn’t know that. I feel really sad after the ecp for 3 or 4 days, it seems to take ages to get energy back.
You’re right, patience …and I’d say trust too. Trust that it could get better with the ecp. It’s definitely worth the try, my chronic gvhd makes life quality really poor.
An app that has really helped me is untire. They have a facebook group too and it really kept me going yesterday in a moment of need.
I’m sending you kind energy, be your own best friend Dave, especially now. They told me that yesterday in the group and it really helped.
Helen
Hi Helen. Thanks for your kind words. I hope others get some help as well from our updates here as well and I hope others will contribute if they wish. Today 2 days after my Ecp I am feeling a bit better and a bit more positive, somebody else with gvhd I met at Ecp this week unfortunately thier gvhd had got worse. Gi gvhd had flared up, eyes were worse and stomach worse so thier steroids also had been increased also meaning they are now not getting any sleep either. Even though I feel I am currently not aware of any progress forward I luckily have not made large steps backwards. It is such a slow progress and i just need to be patient.
Hi Dave,
Our recovery is not lineal, it’s more like a scribble. I hope our journies end up moving forward in some way, even if it does take ages. Exhausting,
Best wishes
Helen
Hello all,
Could it be that the ecp is making my polyneuropathie and gvhd skin worse?
Stabbing pain and burning sensation in the ankles. Had the ecp yesterday and today. It’s horrible.
Hi Helen,
sounds like you have had a hard tiring day or days with your Ecp. I doubt the Ecp is making your nueropathy or skin worse as really all the Ecp does is calm down your immune system so it is not so over reactive. It may be your body is reacting to the treatment in a positive way and things are starting to wake up. However I would mention it to your consultant if you believe things are getting worse as he may need to change your treatment. It is always to update your consult and with all changes as it can aid recovery. Remember progress is slow and along the road you will take many steps which seem backward in your progress. I know as I have a lot of these and I seem to have had a lot also this week and thinking my legs were tightening which they may have been then after a few days they seem to calm down a bit. I hope the pain and burning sensations subside soon. Have plenty of rest, apply plenty of cream to the skin as is possibly also dry and keep yourself hydrated.
After looking through posts for users having Ecp and stats from patients, it looks like minor benefits to Ecp are seen after a few weeks such as liver acl going down, but bigger changes such as skin tightness seem to happen after six months of continual Ecp treatment. However for some people it can take longer than 6 months. Everybodies issues are different and body make up is different so timescales and degree of success can also be be different.