rashes and skin burn

[Suzanne]

Just a note about this. It sure can have many causes for MDS or AML patients. However it is also the symptoms of Herpes Nostra and the Herpes Simplex group. Both nostra-carried in dormant form by anyone who has had chickenpox, and simplex 1- the “cold sore” herpes carried by over 90% of the adult population over 30 in dormant form in the nerves can become active from the effects of a compromised immune system and/or chemo or anti rejection drugs.

Now that all the chemo is over and my immune system is back to almost normal counts it looks like I am having trouble with one or both and may not be responding to anti viral medication.

It is not usually a full body rash-more like blisters in a specific location but the skin definitely has a burned appearance & feel-sometimes without rash. It can also cause a fever and serious pain in branch of the nerves that it is in. Just a heads up to consider this as a cause of symptoms that can’t be traced to something else.

I can’t help but wonder if that is why they watch us so closely for mouth sores and so many people have trouble with those. Simplex one can present in other parts of the body and I believe Nostra is not usually associated with the mouth.
It certainly is a minor complication compared to many-and I understand it can usually be gotten under control.Many people have had incidences of both that are otherwise healthy.

[Suzanne]

I forgot to mention that the information I have also says that it usually takes care of itself and goes away within 7-10 days. Medical help is needed if it has repeat flare ups and if you run into the pain and fever with an incidence of it. Just another thing to watch for in our complicated lives.

[gemloyear]

Suzanne, Thanks for posting, your info is helpful Re causes. I certainly hope that you don’t have Herpes IT can be very uncomfortable. My husband has had several incidences of rashes,some very severe. It occurred to me that it could be herpes when there were blisters, but then they spread out and had that firey burned look. Allergic rashes, cellulitis, Most with swelling and pain. It usually takes longer to completely clear up than the 7-10 days, probaley due to the compromised immune system. You’ve got that right about complicated lives, little did I know! but I’m slowly learning. I appreciate your knowledge,you seem so professional in your postings. I think you’re the poster girl for remission, don’t laugh, you give everyone hope. Stay well.
thanks again Ellie

[Suzanne]

I am glad to help if I can. and I remember how scared I was when this was first was diagnosed. I want people to know that if you work your way through it one step at a time, it is possible to have a much more positive outcome then it seems at first when you are looking at those statistics and dealing with the initial development of the disease.And there are other positive things to do besides a BMT. We have so much more hope now then people did just a few years ago and many good Dr’s are working hard to help us.

Herpes is a pain -but much easier to deal with then AML and MDS!! And evidently not an unusual result of the meds and low counts. At least I am dealing with the “socially acceptable” types that most people carry and don’t know it!-Ha!

By the way even tho I celebrate and am so thankful for my remission and treasure life in a very special way, there are challenges to this stage. When fighting the disease has been such a big part of life every day for such a long time, it is hard to decide how to orient your life.You probably can’t walk totally back into an ordinary life as if it never happened but it should not be the center of your life, thoughts and every conversation anymore. You don’t want to sit frozen in fear that it might come back-even tho it might and yet you don’t want to waste or throw away time just in case quality time is limited.It is impossible to lose the awarness that it might be. The nerves get frazzled before every blood test or BMB. I can see why they have support groups for those in recovery. Happy 4th!

[Terri]

Suzanne thank you for the information, You are an inspiration. I hope all is well with you can you continue on your complete remission. I agree with you as far as treasuring life so differently now. I wish it was easier for all those battling this disease.
God Bless you and again thank you for all the information you are always passing on to us

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