Pegasys and low White cells

[Lilly1958]

Hi everyone , I'm have frst time problem with Pegasys , and I'm thinking now stop Pegasys or going on low 45. I'm have PV. And I'm on venosection (12 in 15 month). I'm start before 8 weaks Pegasys and my heamo. Told me start with 135 , I'm listening conference about MPN and Pegasys, and Dr Rubén Mesa and lot MPN specialist said everyone must be start with low dosage 45. I'm not listening my heamo and I'm start 45 mcg 2 weaks , after 2 weaks 65, and 4 weaks 90. Not side effect , and I'm was ok . But yesterday I have My full blood count and platelets Was 277(frst time in 20 years , before was stable all over 26 years 450-520) rbc was 5,6 and white cells low 2,6 (before 30 days was white cells 4,6), and neutrophiles was only 0,8 ( normal is 2,0-7,5) . Hct was 45 (last venosection was before 60 days )My heamo told me I'm can stay with 90 , but I not believe .He said I'm be ok with 90, I'm now white cells is important for immune sistem . What be happend with me if white cells go under 2,0. ? Can you tell me you story and white cells, or give me any advice . Thanks Lilly!

[rebeccalub]

I was on 45mcg for 2.5 years......life span of white cells is 13-20 days...so Dr may want to watch for several weeks........Tell the doctor what you want....stay on Peg, I have been in complete remission for 7 years!!!!!

[Lilly1958 in reply to rebeccalub]

Thanks rebeccalub, I'm really like stay on Pegasys , (I'm was 5 weaks last year on roteferon , but stop becouse very bad side effect ) Pegasys is really good drugs, but I'm think go to 45 , maybe evry second weak, and after weakly I'm can't stay on monthly venosection , and I'm can see Pegasys helping with less venosection . You are very lackey becouse you are in remission for long time . Did you have ET or PV? I'm wish you be stay in complete remission all you life !!!

[JackLina]

Just to share with you really. I began on 45mcg weekly and have never been on any more. However, I am ET and JAK2+. After 3 weeks, my platelets were back into normal range and then came down to just about normal. My red and white cells however went down very low. Rather than reduce the dose, the usual procedure, as I understand it, is to keep the same dose but administer every 10 days.

I have been doing that now for a couple of months (just over) and see my haema on Wednesday (12th.). I had my bloods taken yesterday s hope to discover my bloods are now level.

I would wonder why yo are on such a high dose but not being a doctor or a haematologist, I couldn't comment. I hope you get this sorted out and soon feel better about your PV. Please let us know how you get on.

A.T.B. Penelope x

[Lilly1958 in reply to JackLina]

Thanks Penelope MK for reply . My heamo put me on hight dosage frst time on Pegasys , but after 2 month my wbc is very low, and I'm will be ask for low 45mcg.

[JackLina in reply to Lilly1958]

As I said. I can only tell you how I am being treated. There is no way I could suggest you do the same. I'm not a a haematologist. Hope all goes well. P.x

[wotan10]

Good evening.

Can you take the time to consult your medical team who is in charge of your care provision.

As patients we are not qualified to give out advice.

However if you are unhappy with the support your are currently receiving are you able to access a second opinion.

I would never go against medical opinion, your actions are not based on sound medical training.

Don't put yourself at risk.

[Lilly1958 in reply to wotan10]

Thanks wotan10 to reply .Im now patients are not qualified to give advice, but on this forum I'm learn lot about MPN because lot can go to specialist heamo only for MPN . We haven't got specialist only for MPN , only heamo, and my heamo. have only 2 patient on Pegasys . I have ET over 26-30 years and 10 years I'm was undiagnosed , 5 different JP found hight platelets , but not send me at Heamo. My husband had melanoma and JP said nothing dengerous , but I have filing not good and push him to see dermatolog , and was maligan Melanom , but stage 1 level 1., dermatolog said if we are waiting 1-2 weaks he be gon with only 48 year old , but I'm against,medical opinion from JP because I have filing not good , but thanks God everting was ok because we are on time. I'm think too my whites and neutrophiles is very low, and if I'm going with 90 maybe will be worse . I'm interesting people with dosage of 90have same problem or not, becouse Pegasys is very powerful drugs, and I'm don't like stop use Pegasy . I'm think we are here on forum for share our story about MPN , and like that helping and learing about our rare blood cancer .