Polycythema RV and interferon
Posted , 7 users are following.
I am having lots of itching and seen various dermatologists. They just say it is probably the PRV. I have been prescribed various lotions that sometimes help a bit. My heamatolagist suggested iterferon (pegalated interferon A I think) injections once or twice a week. I don't like needles but if I must I will inject myself and as usual there is somone on YouTube showing how! Has anyone tried interferon? What were the side effects you had? I look forward go your replies.
0 likes, 9 replies
margo82957 jim27451
Posted
** I also have lots of itching. So for all my Dr. says is Ecerin lotion.Helps some not all.*
jim27451 margo82957
Posted
Thanks Margo. As I said dermatologists have prescribed various lotions etc. I bought some Eucerin and , if anything the itching was worse.
angela_o..o jim27451
Posted
Hello Jim,
I get itching sometimes. Usually in the mornings. I find that if I take a bath in the normal way but add a good tablespoon of baking soda to the water it stops the itching more or less straightaway.
I'm not a fan of any kind of drugs - I just take aspirin and have venesections - so I can't help you there, sorry.
dianne70747 jim27451
Posted
Hi Jim.
I have been taking 1 Hydrea Mon - /Fri and 1 asprin for the last twenty years. My hematologist tried me on Interferon injections. I had to injected my stomach daily. I did that for just over two weeks. The Interferon did not agree with me and made me come out in a rash. The itching was even worse.
I am back on the Hydrea and asprin. I still suffer with extreme itching. Temperature changes, water temperature, changing my clothes and worrying about things all trigger my itching. I take Claratyne if the itching won't stop. Sometimes I take half a Polaramine as well when it is really bad. Itching is the worst part of this complaint. I find eating ice helps to cool the body. I have been to dermatologists and allergist but they could not help. I also went to a naturapath but they tried me on various things but nothing helped. I have also tried acupuncture but that made me feel very strange in my head. It made no difference to the itch. On days when my itching is really bad it makes me feel strange in my head like it is spinning and I feel light headed. Very weird feeling to experience. My husband tells me to be positive as there are many people far worse off than me. I agree but it is had to be positive when you have been itching for three hours. I am 67 years old. The only thing that will sometimes stop the itching is to stand under the shower with the water very hot and let it run on my head for a few minutes. It calms the itch. Generally I have a warm shower. Cold or cool water makes the itch bad. I continue to search for something to change the way I am.
Regards Dianne
jim27451 dianne70747
Posted
Diane,
I was on hydroxy and venesection for a couple of years with no problems then the hot skin/itching started. I thought it was hydroxy causing this so asked my hemotoligist to come off it but the itching is still there. I was offered pegalated? Interferon A? but as I didn't fancy injecting myself or having flu like side effects I decided against it. I have not had a venesection for about nine months and all my readings, as of yesterday, are perfect. I do take a 75mg aspirin daily which is strange as for about 20 years I had very bad reaction to i aspirin but thought I would try it as I didn't fancy the alternative (can't remember the name) . It appears to me that whatever caused my JAK2 gene to go haywire also effected other parts of my body. Have you tried bicarb in a bath ? I may try it but don't like having a bath.
Keep smiling.
john57598 jim27451
Posted
Hi Jim, I am on a Facebook group called Aquagenic pruritus support group. It is a condition shared by PV and non-PV sufferers alike. Many people on there are finding relief by taking Beta Alanine powder. I am awaiting my first package of the stuff from Amazon today. Join the group!
jim27451 john57598
Posted
John. Many thanks for your reply. I have ordered some beta alanine from Amazon. I try to keep away from Facebook but as polycythemia is such a rare problem I have been trying to find other suffers. I have signed up to the PRV support group. Again thanks. I will let you know if the beta alanine works for me.
jim27451
Posted
John,
I had a bad bout of itching over the weekend and could not sleep so I spent time searching the web and came up with a treatment called Z+Z. It is Zantac and Zyrtec. That is ranitidine 150 mg and 10mg of cetirizine hydrochloride. I took one 75 mg tablet of ranitidine and a 10mg tablet of cetirizine in the morning and a another 75mg of ranitidine in the evening. Both are readily available over the counter in the UK and I think would cost less than £2 per week. It worked for me and greatly reduced the itching. Since starting it a I have had a decent nights sleep every night. Today I started on pegasys interferon. I have a thing about needles but managed to inject myself with hardly any pain. I am keeping my fingers crossed that this stops my itching.
jim27451
Posted
I started on peg interferon a month ago and although I still have itching it is more far more bearable. I inject 90ml ? once a week and find the injecting is no problem. The syringe comes preloaded with around 110ml ? and.find i need the whole dose to least a week. When i have injected only 90, it starts to wear off after five days. I am 71 years old, live in England and am treated by the NHS.