Myelodysplastic syndrome (MDS) and skin itching

Posted by lithuanian @lithuanian, Jan 20, 2019

what can be done for extreme itching from myelodysplasia

Hi @lithuanian, I would like to invite a few members who have talked about a myelodysplastic syndrome to see if they have experienced skin itching and what they did about it. @cybears, @jaylevel1, and @reibur1951 may have experience they could share with you on this symptom.

@lithuanian, have you discussed this symptom with your medical provider? What have you tried thus far?

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my firend took epsom salt baths and skin so soft bath oil sometimes combined both – not sure how much was due to the aransep as that when it started – i agree discuss with your dr and if he refuses to tall discuss with you find another as soon as possible communication between the patient and the caregiver is essential and very important he had one who would not discuss it was take this medicine because it was do as i say he went as far as to tell me i did not give a dam only about money he talked in analogies instead of plain straight forward facts as if he was a kid…. but when you read – find he was having 90-95% and spent 80-90 percent time in bed while on the F_ aransep and it was affecting he mental status and balance etc…. and yes we did go for 2nd opinion but he concurred with the treatment but when medicare refused to pay for the shot in Aug 2017 he done a turn around but damage was done…. sorry for my rant…. also educate yourself bring a list of questions to ask etc.

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@JustinMcClanahan

Hi @lithuanian, I would like to invite a few members who have talked about a myelodysplastic syndrome to see if they have experienced skin itching and what they did about it. @cybears, @jaylevel1, and @reibur1951 may have experience they could share with you on this symptom.

@lithuanian, have you discussed this symptom with your medical provider? What have you tried thus far?

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@JustinMcClanahan I just got my report today from my bone marrow biopsy and to the doctor's and my surprise, besides the ET, I now have myelodysplastic syndrome, and anemia… not sure I yet understand it all. Have not started on the shots yet but will have an abdominal ultrasound, which was already scheduled and see the doctor on the 11th to proceed with treatments. Does not seem to explain my leg pain, but does explain my lack of energy and feeling bad. So, a little more compliction to my already fairly rare disorder. I have had quite a bit of itching. Not unmaneagable but annoying. So I would lkie to hear from ET patients as well as this new diagnosis which I was given today. Esperanzam
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I get Procrit shots for my myelodysplastic syndrome which help a lot, BUT I'm also having terrible itching on very dry skin areas which is very difficult to live with. My doc has given me prednisone but I had a bad reaction to it. Oh how I wish I could take something that would relieve it some.

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