Hello friends, I have been out of hospital for a few weeks now and am just starting to feel stronger. Today is day +65.Blood counts are slowly improving but I daren't take anything for granted.
The main issue now is that I have developed skin GVHD; the itching is horrendous though Dermovate cream helps...though only for a while.
The good news is that my chimerism (proportion of donor cells to my cells) is 100% so, taking one day at a time, I feel relatively positive.
Any advice on the GVHD would be gratefully received.
Thank you for all the support you have given me - every word of support genuinely helps.
Jennie
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Otterfield
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Hi, Jennie. Glad to see you’re out of the hospital and that your blood counts are improving. It sounds very promising. I hope you find someone here who can help you with your itching.
Delighted to hear u are home and doing well. Sorry about the itching...must be annoying. Not sure if it will help but I used to get an Aloe Vera Gel when I developed severe eczema on my lower legs (and I used to keep it in the fridge) so it was extra cool. Nay be worth a try. Lots of Love
Hi Jennie. Great to hear of your progress.. there is an MPN voice talk on Tuesdat re SCT, maybe submit an online question? Hope you continue to make steady progress. 🤞
So glad to hear the essentials are looking good. Stronger and ever better...
I have no personal info on the "Cutaneous" GVHD. But in this report a pattern of photo therapy and steroidal treatments is mentioned most often as first line options. They indicate not everyone can use steroids however but proper photo therapy may be more widely applicable. They do note that a dermatologist should be on your team:
"In this context, dermatologists play a key role by diagnosing and treating GVHD from the outset since cutaneous features are not just the most common but are also usually the presenting sign."
Excellent. Great news about the chimerism. Can’t offer skin advice as didn’t experience it. Your medics should be able to give you a steer. Now, onwards and upwards.
Hi Jennie. So good to hear from you and that you’re back home and progressing. The chimerism is really good news. I didn’t get any gvhd so far(🤞) so I don’t have any advice other than speak to your monitoring team and keep nagging them about it. They will have a range of options to try I am sure.
One of my fellow patients here in Sheffield suffered with extreme dermo gvhd and he was sent for photo therapy which he reported was useful in reducing his rash.
Keep battling on and keep improving, even if it’s just a little at a time it’s a step forward
Hi Jennie, so good to hear that you are home and feeling stronger but sorry about the GVHD. I hope you can get some relief from the awful itching. Thinking of you xx
Hello Jennie, wonderful news, so pleased your progress has enabled you to go home and be with your family. Your bravery , stamina and forward thinking are an example to us all, thank you for sharing the ups and downs of your journey with us. Wishing you steady progress and peacefulness.
Very pleased to hear of your continued success - at an MPN forum I once attended a patient (PV) gave an account of her experience of sun tan treatment/ultraviolet/'all over' in a cubicle to help ease her 'itch' symptom, with approval and guidance from her consultant.
Really pleased all going in the right direction and you a feeling stronger. As they say the journey of a thousand miles starts with the first step. Sorry can't help with the itch. Thank you for sharing your journey with us. We are all alongside you supporting you on your journey. Look forward to hearing about the next milestone. Take care.
That is excellent news that you are out of hospital and bloodwise you continue to make good progress. The GVHD itching sounds horrible. Have you been referred to a dermatologist? I fully appreciate you haven't got eczema ( however modern research seems to be proving eczema is a result of our new friend inflammation as well) but it might be worth looking at the Eczema Society's website especially as you have been given a steroid to try and help it Their section on managing itching is helpful. My daughter had acute exzema as a child and young adult and we found a lot of sound advice about use of emollients etc but actually the small tips of eg filling an old white sock with oats and running it under a tap to fill and then soak in a bath helped morale. However no doubt there are other people on here with actual experience of the post sct problems who would be more helpful.
Hi, your doing great, i know its hard. Your journey sounds alot like mine, ive just had my 1st re-birthday and i still have itching but i think it's mainly menopausal issues (no hrt) ive found the best relief if showering using cool water and using dermol lotion to wash then moisturise with doublebase. Congratulations on your 💯 cells
So pleased to hear you’re out of hospital and things are improving. Hope you manage to get things resolved with the itch and keep getting better day by day. Best wishes, Fran.🙏🙏
Very happy that you are home and doing so well.Great news for all of us who have have been willing you thru !
Sorry you are suffering the itch again,I am sure you will receive lots of advice. I still get irritating rashes sometimes and find Aloe Vera a soother.
I use a gel one and also the pure Aloe Vera oil which has worked well on carcinoma removal scars.
Very Best to you Jennie for return to complete good health. 😍Sally
So happy that you are home and that your road to complete recovery continues to improve. Sorry you’re suffering from the itch and pray you find help with that soon, too.🙏🏻💕
Its great news to read and can now enjoy being at home again in order for you to make your full recovery. I hope very much you find something to solve your itching situation too.
So glad to hear you’re out of hospital & hope you continue making a good recovery. Hopefully you will be able to sort your itch problem out. Keep positive.
hi sorry to hear about this but glad things are improving for you. When I had this a few years back the only think that gave me some sort of relief was a cold flannel on the area mine was on both arms I also used the ice pack sleeves that you put on wine bottles they just slipped on my arms the ones that have Velcro on so was able to move up to where I wanted it Hope this helps and it improves for you
Hi Jennie, it’s amazing to hear a generally positive update from you. Your story and courage are uplifting for anyone thinking about SCT and I’m glad to hear you’re doing well. Sorry to hear about the skin itching, hopefully it will be addressed and worked out in the coming weeks with medication.
Still in my thoughts & prayers &, whilst I appreciate you can take nothing for granted at this stage, I’m chuffed to bits to hear about the positive parts of your progress 👍👍👍x
So glad to hear from you-I was beginning to fear the worst . How long were you in hospital for?I have my first appointment this week with the stem cell transplant consultant in Bristol. I've come round to the idea that a transplant is the way forward for me ( well 90%!) so if you have any tips for that meeting I'll gladly accept them
I was in for seven weeks. I would say make a list of questions and don't feel any pressure to make a decision. Brace yourself for hearing about the risks - there are plenty but most people get through it.
When my consultant told me there is a 20% mortality risk, I asked what makes the difference and it is mostly people with serious comordidities that don't make it.
Ask, ask, ask for clarification, even if the doctor is intimidating.
Ah thanks for the update Jennie and so glad you are now back at home and still got 100% on your counts. Hope you manage to get the GVHD skin issues under control v soon. Good luck xx
I was just re-reading down the posts, and it triggered my memory of another possible treatment option that is non-steroidal, and very effective- regardless of the cause of itching.
I was prescribed it for atopic eczema.
Starting i n my early 30's [and onward for decades] the skin on both of my hands used to be terrible with broken, dry, thickened skin that would crack and bleed with minimal triggering.
But the problem eventually attenuated over time [and aging], so now it's just persistent patches in the palms of my hands, and pretty much no where else- although apparently the PV-caused pruritus has picked up where that left off- albeit without the rashes and broken skin.
Anyway, I was having a terrible time with my hands itching, despite using maximal doses of the ultra-potent steroid ointment I was prescribed, and to treat it, my old [now-retired] dermatologist prescribed Zonalon cream, which relieved even the most intense itch almost immediately upon application.
The generic name for it is Doxepin cream- which was previously an old [oral] tricyclic antidepressant medication, which like all of that family are poorly tolerated due to side-effects.
I had to be just a little careful bot to really overdo the amount of it I used, partially because at the time it was so expensive, being a new formulation [despite the age of the original medication], and partially because it could make me very sleepy after I used it- which was also probably in part because of the broken skin I used it on [increasing the systemic absorption], in conjunction with my untreated sleep apnea.
As I said, it's very effective even when used in very small amounts, and it is a really safe treatment for even severe itch.
A little GVHD can be quite beneficial. Hopefully you won't get too much. Itchy skin is horrible.
I shed a layer of skin from head to toe. Very messy. Was treated with prednisone. A drug I have a love / hate relationship with. Was also prescribed an aqueous cream.
Jennie, so pleased you are back home and making good progress after the transplant. Your courage is an inspiration . Hope the itching settles quickly. Best wishes and keep us updated. Rachel
Lovely to get an update on your journey. Your really are an inspiration to us all. I hope someone can help with the skin itching though. I take ii antihistamines would be of no use, or some of the anti itch creams u get these days. X
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start of my SCT journey 
