MPN Voice

Drug Therapy - Interferon

Hey, I would love to hear from any PV patients who have had success with interferon?

I have had PV for over 8 years nearly 9 and I was able to fight the fatigue and live a normal life, however, my life seems to be getting smaller and now even exercise has me feeling awful for days so I am avoiding it. Ever since an op in June I have struggled. Before that I was still running and racing 10ks my last one in March (not super fast but sub 60 mins) Now my iron is low, my ferritin is low, so now discussing drug therapy but I don't want to rush into anything but as we can't have iron as will increase RBC I feel I may have no other options.

Thanks

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What is your RBC?

I’m in similar position, very low iron and ferritin (single digits) and MCV around 65. HB about 130. Venesections and aspirin.

However my RBC is around 6 and I’m feeling no fatigue. I wonder if the high RBC offsets the low iron.

I exercise every day (10K fast steps) and two gym sessions per week.

Only been diagnosed PV JAK2 a couple of years ago so maybe just early days.

Hopefully in your case it just takes a long time to recover from major surgery?

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Hi, My iron is 4 my ferritin is 5 last time it was taken in the summer. Waiting for iron results from yesterday. My RBC is about 6 too... my HB was 139 but I think they said it was down this time. My MCV is 66 so we are similar in that way!

I am active as a massage therapist but even some days that has taken its toll where as I used to feel energised by my work!

Definitely loosing the blood after surgery and the bladder issues have not helped but June was sometime ago.

I was feeling ok before that and like I say ran a 10k race, I never felt better when I was first diagnosed although maybe over time it's not helped but it is annoying. I felt better being raw for a month but it's hard in Winter, and I stay clear of coffee due to the bladder so gone are those times when you can push on through with caffeine!

I did try a run recently, it was awful and I felt crap for a day or two after! My body totally aches a lot more than it used to even with just being on my feet all day.. I feel like I am 63 not 43 lol...

Glad you are doing well, keep active for sure it does help, and that's what is frustrating me not being able to be as active!

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My wife bought me chocolate covered coffee beans and that caffeine helped fight the (very slight) fatigue and depression that Hydroxyurea (Hu) gave me. I didn't notice that delicious snack contributing to my peeing, so you might want to give it a shot.

I don't know the mechanism for your PV, but my body has produced too many megakaryocytes (platelet factories). I read that the combination of caffeine and hydroxyurea helped with apoptosis (cellular suicide) of cancer cells, so that was encouraging. I still haven't done another 10-day fast to see if I can lower my Hu dose again. I went from 11 pills a week to 7 and now I'm at 8.

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Amazing! That's great!

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I avoid coffee as caffeine really can affect my bladder (I have bladder cancer too) so that's why I cut it out and then when I did introduce it a couple of times it made me feel ill which I was glad about as stops me drinking it!

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I m currious about the relationship between coffe and HU , what cells are killing ? ( in PV are t cancerous cell as I know )

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Just noticed my iron from August to October went up from 4 to 6 so that's good but annoyingly my ferritin test was cancelled - apparently a friend said because they don't measure it more than once every 4 months but be interesting to see if iron went up because I am trying to increase it naturally or if it just stole more from the store!

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You may also want to check if it’s PEgylated Interferon or Not. PEgylated Interferon Alpha 2a Or 2b usually comes as IntronA or Roferon-A

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Not sure having had a migraine attack before appointment memory worse than before but have booklet and learning more about the different ones doing some research and I know it will be a really small dose just to measure my symptoms rather than by the bloods.

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Yes I checked and it is Pegylated

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I have the same problem with memory, write down all the questions to ask as Interferon may be helpful for PV but may interfere with your other treatment. Hope it all gets sorted out. Raff

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Thank you

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Paul 123456 makes a damn good point about surgery recovery Lou. You know, seeing you the other week, I completely forgot about that. Is that because of rubbish PV memory or because you looked so great? Either way a good point.

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I hear you but my body normally bounces back quite well. Doctor mentioned about Vitamin D, so going to get that checked too!

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I do 40 minutes brisk walking daily as i have a desk job but if I miss some days it takes a while.to get back to the same point of fitness and I think that may be something to.try, just try to ease your way back to.10km...start back.with smaller mini walk/runs and build it slowly back.up if that works.

Good luck

John

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Yes good plan and actually I have been quite desk bound with other projects so maybe I am just needing to move more.... going to try a few things. Thanks for the tip!

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I find that since diagnosis, i've had to increase exercise gradually and then try to maintain it. If i let my fitness drop, it takes longer to get back to where i was. I used to just go out and do 15 mile walks but i can't now, i have to ease my way up to that sort of level.

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I’ve had success on Peg-interferon. My experience was within 4 weeks many of my PV symptoms had gone (including fatigue). We are all different. I also have low iron but I have, been told, with less venesections my iron will recover slowly.

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That's great to hear. I was wondering if they would let the iron recover slowly or allow me to have some. Do you mind me asking how long you have had PV and also your last iron count? Do you know your ferritin too? I checked and my iron went up from 5 to 7 so I am doing something right although I can't say I feel any better for the small improvement more is the pity!

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Hi surreygirl74, they will let your iron recover slowly naturally. The only time doctors should give you any iron is if your haemoglobin is very low. I was diagnosed July 16. My last ferritin count was 6. When I was diagnosed my ferritin was 19.

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Hi How long have you had PV? They did prescribe me iron tablets well one doctor did but the Prof said no, plus I looked at the ingredients and wasn't happy to see SLS in there when I avoid that on my skin lol... yeah my ferritin was about 5 last checked and had dropped from 10 after my op.. so annoying as I got it up from 5 to 10 over 18 months of going vegan and then that happened - bloody bladder literally... ;)

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I’ve had PV for 17 months

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Dear Surreygirl, I was diagnosed with PV in August of this year. My RBCs and my PLTs were high. I’m also JAK2+. I started Pegasys a month ago. I give myself a 90mcg injection every Friday night. My counts are down and I have very little side effects; not really worth mentioning.

Good luck to you! I hope you do as well on Pegasys as I am!!

Mary

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I am glad you are doing well. Is there a reason they put you straight on Pegasys?

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Truly no idea.

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