[Madness58]

Itching after stem cell transplant and no sleep

by Madness58 on Wed May 14, 2014 4:25 am

I am suffering with continual itching on my whole body. My back and upper arm is the worst. I feel I am self harming myself. This is going on for nearly 9 months since I have had my stem cell transplant for multiple myeloma.

Every doctor I see I keep on telling them, they look at me and say they have never heard of this from any other patient. One doctor laughed at me and had to apologise afterwards. With that I crunch 6 kg (13 lb) of crushed ice every week. My dentist said I need to try and stop this habit as I am ruining my teeth. If I can't get my fix of ice it's like I am possessed and will go to any lengths to obtain it.

No one can tell me about my ice addiction. I feel very suicidal some nights or early hours of the morning .

I once ended up taking sleeping tablets just so I could get some sleep, forgetting I had something on the fire. Well I nearly burnt down my studio. Thank god for my neighbour.

Please, please can anybody out there help me on any of the above. I am so desperate.

[Beacon Staff]

Re: Itching after stem cell transplant and no sleep

by Beacon Staff on Wed May 14, 2014 6:12 am

We're very sorry to hear about the itching you've been suffering, Madness58. Unfortunately, this appears to be a side effect that occurs in some myeloma patients after their stem cell transplant. You'll find the problem described, and solutions mentioned, in these discussions here in the forum.

Can you describe a bit more what you wrote about ice? Do you mean just regular ice (frozen water), or ice cream? And is there a particular reason you are eating it all the time -- is it related to the itching, or just something that you are doing separate from the itching?

[LauraScot]

Re: Itching after stem cell transplant and no sleep

by LauraScot on Wed May 14, 2014 9:46 am

Hi Madness58,

I had the same itching symptom as you after stem cell transplant, but it did not last as long. Doctor told me the same thing – he didn't know of other patients with this side effect – but he did prescribe me some creams, which really helped. I used Diprobase and cortisone creams for about 4 weeks and stopped using any other creams. It eased the itching immediately and it eventually went away. I also used a gentle emollient showering cream.

My doctor referred me for a dermatologist appointment, but itching was gone before appointment time, so I cancelled.

Have you been referred to a skin specialist? Must be awful for you to have these symptoms for so long with no relief. Hope you find something that works soon.

Laura

[Madness58]

Re: Itching after stem cell transplant and no sleep

by Madness58 on Tue May 20, 2014 8:35 pm

My ice cube addition has ruined my teeth. My dentist has ask me to stop, but she does not understand, it is like a drug . I like the crunching sound it makes. All my tooth nerves are shot, but I still can't stop myself. I am crunching on some now . Tesco Crushed ice is the best, I find lol.

Again, all this started after I had my stem cell transplant. I have been referred to counselling. But that could take months on the NHS .

[Madness58]

Re: Itching after stem cell transplant and no sleep

by Madness58 on Tue May 20, 2014 8:47 pm

I went to the skin clinic they sent me to for a session of photo light treatment. It's like a sunbed and you stand in it for seconds at a particular setting and each time you go there the time increases. I had to stop this as it made my itching worse,

Asked to have a skin test. They are reluctant to carry out this. Was told it could be my gall bladder giving off chemicals, etc. Now the itching has gone to my face and my face is so so dry. Got cream for the dryness and steroid cream for the face. This was yesterday. Has left quite a lot of marks on my face. The skin doctor said that this is part of the speed up of ageing due to all the meds I am on. I could not stop laughing yesterday.

Said to her she should market that. This is what would happen to my skin, she said, when going into my seventies lol. How could she know what my skin would look like? I told her to her face that she just made all that up – that she was talking rubbish .

Just told her to give me more creams and tablets for my itching and let me go .

I am in despair with all this .

[R007]

Re: Itching after stem cell transplant and no sleep

by R007 on Sun Dec 20, 2015 6:48 am

I've had a haplo (partially matched) stem cell transplant and I'm having severe itching on my entire body. Haven't slept in 3 days. My doctors told me to take Benadryl (diphenhydramine), but even that isn't working.

[coachhoke]

Re: Itching after stem cell transplant and no sleep

by coachhoke on Sun Dec 20, 2015 5:24 pm

I've had a rash and itch on my back and scalp for over three months. I never had a transplant and have been drug-free for almost a year. My dermatologist did a biopsy and some additional blood tests and cannot explain it, but blames it on my "malignancy". I've tried prednisone and some topical steroid creams with very little results.

Coach Hoke

[Stann]

Re: Itching after stem cell transplant and no sleep

by Stann on Tue Dec 22, 2015 2:25 pm

I had mild itching and sleeplessness and Benadryl fixed both problems. Your situation is obviously more severe, but I'd give Benadryl a try, but I'm sure your doc already recd thT.