Body Itching

[Redbone55]

Hello everyone, I find that when I go to bed at night my body is itching all over. Is anyone else having this issue?

[Okiksaints1955]

I intermittently have the same issue. I asked my Nephrologist - he mentioned that this could be phosphorus related, or dry skin - both are known side effects of transplants.

I will be tested on my phosphorus level in my next cycle. And I also started using moisturizer - which already has helped.

Remember - always consult you Nephrologist, regardless of how trivial it is. It could be a symptom of more serious issue.

Take care, be well.

[Redbone55 in reply to Okiksaints1955]

Yes I placed a call to her and she basically said that it could be one of the side effects of the medication but she also suggested that maybe I take a Benadryl at night or an anti-histamine like Allegra to see if that helps I haven’t tried it yet but I will tonight

[PostivelyJo]

I had this so badly . The itching wasn’t all over but in one place and it was intense. I had to use ice to stop me scratching . I think it was the drugs as my skin has changed and is no thinner , possibly the Prednisolone? When I mentioned it to my team they gave me antihistamine and were slightly baffled by it.

It passed, it was in the first 6-8 months of my transplant. Try good moisturiser and don’t overdo do hot baths or showers ! Or get overheated at night ?

You haven’t said when your transplant was , but in the early stages there is much adjustment ….

Speak to your team for advice

[Redbone55 in reply to PostivelyJo]

Thanks for the advice!! My transplant was January 12,2021, so it has not been six months yet. I spoke with my team and she said to try Benedryl (don’t like the way it make me feel) but going to try it anyway. Anything to stop this annoying itching.

[Eyak1971]

Have to agree with everyone who posted. There are multiple causes for itchy skin from medication to nutrient imbalance. Your doctor is your best resource. Had it also earlier but it comes and goes. As they say - this too shall pass but it's a bummer when you are trying to sleep.

[PostivelyJo]

I think you will find it will pass. It was short lived for me but excruciating and very exhausting. I barely slept for weeks . Touch wood it’s gone .Early days, congratulations and best of luck.

[Redbone55 in reply to PostivelyJo]

Oh goodness I hope it does go away soon and you are right I already have sleep apnea and insomnia I really can do without the itching🤣🤣

[ILMA54]

I experienced the same thing. I was itching all over. I first tried Cetaphil soap and lotion, and that worked for awhile. Then I went to CeraVe (both regular and anti-itch) and Sarna (regular and anti-itch). Eventually, I had to use ice packs at night to take the edge off. Went on 3 hrs of sleep a night for nearly six weeks and eventually noticed a rash on different parts of my body.

It was not related to phosphorous levels as mine were normal. After seeing the dermalogist and doing a biopsy, I found out I had bullous pemphigoid, which is an auto-immune disease that manifests itself as blisters that break out all over my body, but mostly my feet, my arms, and my chest. This condition, and the itching grew worse over a 6-12 month period

He put me on topical steroid, which slowed down grown of blisters, but eventually needed a 16 day course of prednisone. In the interim between prednisone and starting a new medicine, dapsone, I had even worse blistering than the first time.

The good news is that the itching stopped when I started prednisone and dapsone. The bad news is that with dapsone, I still see blisters pop up on feet and ankles.

I am getting ready for a transplant on July 13, and I am going to see the doctor next week to evaluate whether this would require me to postpone the transplant.

Hope that helps.

[Redbone55 in reply to ILMA54]

Oh wow my kitchen only really happens at night and I recently just bought itch relief lotion it seem to help some but I also take half a Benadryl at night as well and this is what my transplant team told me to try. Hope everything goes well for you good luck!’ 😊