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?
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.
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?
@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
@
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.
Neutropenia results in less ability to fight organisms that wish to use your body. Neutropenia results from MDS, so I think skin disease is more probable if you have MDS.
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?
I have MDS, diagnosed last summer. My ferratin levels are consistently 800-1000. By January of this year began experiencing migrating itching all over my body, esp in my hands, less in my feet. It is in other places also. I started taking Cetirizine HCL (allergy med) and it stopped entirely. However, my ophthalmologist said I need to be careful with antihistamine meds if I have increased eye pressure. Now I am itching all over again. I use lotion (short lived) and sometimes Voltran Cream if I'm itching so bad I am excoriating my skin.
I have MDS, diagnosed last summer. My ferratin levels are consistently 800-1000. By January of this year began experiencing migrating itching all over my body, esp in my hands, less in my feet. It is in other places also. I started taking Cetirizine HCL (allergy med) and it stopped entirely. However, my ophthalmologist said I need to be careful with antihistamine meds if I have increased eye pressure. Now I am itching all over again. I use lotion (short lived) and sometimes Voltran Cream if I'm itching so bad I am excoriating my skin.
My ithing seems to be a bit a quandry from my PCP to my hematologist-oncologist. I'm not one to take pills for mysterious reasons, since I have stopped taking cetirizine hydrochloride tabs the itching came back. However, as time goes on, it isn't as persistent and not everyday. When it gets really persistent, I use a spray diphenhydramine HCL 1% and zinc acetate 0.1% which lasts a short time. What I am most curious about is if this is common for those with high ferratin levels, or am I barking up the wrong tree?
My ithing seems to be a bit a quandry from my PCP to my hematologist-oncologist. I'm not one to take pills for mysterious reasons, since I have stopped taking cetirizine hydrochloride tabs the itching came back. However, as time goes on, it isn't as persistent and not everyday. When it gets really persistent, I use a spray diphenhydramine HCL 1% and zinc acetate 0.1% which lasts a short time. What I am most curious about is if this is common for those with high ferratin levels, or am I barking up the wrong tree?
Hi @emaddox Relentless itching is the worst, isn’t it? I can tolerate pain over itching any day. Unfortunately, itching can be a common side effect of having a blood cancer/blood conditions due to inflammation, which can trigger an immune response to release more histamines…causing itching.
In your case, you were diagnosed Myelodysplastic syndromes (MDS) which are a group of bone marrow diseases. I’ve posted a link below with a pretty good article explaining MDS.
This condition may be the culprit in your itching and you were on the right track with taking an antihistamine. I had to use them daily for a while. My hematologist suggested Claritin. (Avoid any that have a decongestant because that can raise BP) There are a number of over the counter antihistamines that work to quell the itch.
You will need to check with your ophthalmologist to see which antihistamines are safe for you but from my understanding, phenylephrine can be the culprit for elevating eye pressure because it can act as a vasoconstrictor. So avoiding products with that ingredient might be helpful. Again, check with your eye doctor.
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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?
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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1 Reaction@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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1 ReactionI 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.
Neutropenia results in less ability to fight organisms that wish to use your body. Neutropenia results from MDS, so I think skin disease is more probable if you have MDS.
I have MDS, diagnosed last summer. My ferratin levels are consistently 800-1000. By January of this year began experiencing migrating itching all over my body, esp in my hands, less in my feet. It is in other places also. I started taking Cetirizine HCL (allergy med) and it stopped entirely. However, my ophthalmologist said I need to be careful with antihistamine meds if I have increased eye pressure. Now I am itching all over again. I use lotion (short lived) and sometimes Voltran Cream if I'm itching so bad I am excoriating my skin.
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2 ReactionsAn ice pack on the itching area stops the itch for me.
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1 Reaction@emaddox how are you doing? Has your hematologist suggested anything for the itching?
My ithing seems to be a bit a quandry from my PCP to my hematologist-oncologist. I'm not one to take pills for mysterious reasons, since I have stopped taking cetirizine hydrochloride tabs the itching came back. However, as time goes on, it isn't as persistent and not everyday. When it gets really persistent, I use a spray diphenhydramine HCL 1% and zinc acetate 0.1% which lasts a short time. What I am most curious about is if this is common for those with high ferratin levels, or am I barking up the wrong tree?
Hi @emaddox Relentless itching is the worst, isn’t it? I can tolerate pain over itching any day. Unfortunately, itching can be a common side effect of having a blood cancer/blood conditions due to inflammation, which can trigger an immune response to release more histamines…causing itching.
In your case, you were diagnosed Myelodysplastic syndromes (MDS) which are a group of bone marrow diseases. I’ve posted a link below with a pretty good article explaining MDS.
This condition may be the culprit in your itching and you were on the right track with taking an antihistamine. I had to use them daily for a while. My hematologist suggested Claritin. (Avoid any that have a decongestant because that can raise BP) There are a number of over the counter antihistamines that work to quell the itch.
You will need to check with your ophthalmologist to see which antihistamines are safe for you but from my understanding, phenylephrine can be the culprit for elevating eye pressure because it can act as a vasoconstrictor. So avoiding products with that ingredient might be helpful. Again, check with your eye doctor.
Here’s the link for MDS
https://www.verywellhealth.com/what-are-myelodysplastic-syndromes-mds-2252548#:~:text=Myelodysplastic%20syndromes%20%28MDS%29%20are%20a%20group%20of%20bone,how%20the%20bone%20marrow%20creates%20healthy%20blood%20cells.
Another useful article as to why cancer can cause itchy skin.
When Is Itchy Skin a Cancer Symptom?
https://www.verywellhealth.com/is-itchy-skin-a-cancer-symptom-4582580
~Allergy meds:
https://www.everydayhealth.com/news/allergy-medicines-can-harmful-your-heart/#:~:text=%22In%20general%2C%20antihistamines%20are%20safe%20in%20patients%20with,to%20the%20U.S.%20Food%20and%20Drug%20Administration%20%28FDA%29.
You mentioned you were diagnosed with MDS last year. Were you tested for any cell mutations? How often do you have bloodwork done?
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