Is anyone with PV on interferon?

[jogging1]

I had a stroke last year and was diagnosed with PV. I have been on hydroxycarbamide for the past 18 months which has been no problem, apart from mouth ulcers, but I have felt great. Because I am relatively young, my consultant has advised me to change to interferon alpha within the next couple of weeks. Can anyone advise me regarding interferon?

[tombs]

Hi, I have had MF for over 4 years and have been on Alpha Interferon since diagnosis. I am very fortunate not to suffer from the legendary side-effects and it is controlling the symptoms well. I hope you receive the correct advice and that you respond well to the treatment.

[jogging1 in reply to tombs]

Hi Tombs,

Thanks for the reply. Its nice to hear that somebody is not having the Interferon side-effects I've read about.

[Dodders]

Hi, I'm on Hydoxycarbamide (hydrea)and have been since diagnosis 8 years ago. I can not give you any first hand advice on interferon however I have become good friends with an American (same age as me and also with PV) who was diagnosed with PV after a heart attack ( also 8 years ago) and he was on hydrea until he had to change to Interferon because of chromosomal damage due to radiation treatment for a subsequent thyroid cancer. He is now on Gleevec and appears to be, essentially, in remission- no venesections and numbers spot on. He was fine on hydrea/venesection and would have stayed with hydrea had it not been for the radiation treatment. Both his interferon treatment and now gleevec cost his insurers around $100,000 a year! I guess that if your consultant advises change then you should go with it. If you wanted to ask my American friend any questions I'm sure he'd be happy to help- he's very knowledgeable about PV in general as well as being a really nice guy, not sure how to set that up though.

[jogging1 in reply to Dodders]

Hi Dodders,

Thank you for the reply and it's interesting to hear how the Interferon has helped your friend. I've not heard of Gleevec though but his current state of health is a very positive sign. I'm sure there are questions he may be able to help with. I can supply an email address if that starts the ball rolling. Thanks again and I hope you are keeping well.

[Dodders in reply to jogging1]

I'll check with Matt first just in case, but I'd be very surprised if he wasn't willing to help with any questions you may have. I'm keeping pretty well thanks; glad that you're doing ok by the sounds of things.

[Weismant]

Hi, I was on Hydrea for PV until I needed radiation treatment for Thyroid Cancer. My doctor was no longer comfortable with the mutagenic properties of Hydrea following the damage to my DNA by radiation. Hydrea worked perfectly for me, with out side effects and was prescribed because I was high risk having been diagnosed with PV at 43 following a heart attack. I frankly wish I could have stayed on Hydrea as it worked so well and was so easy to deal with as a drug. Plus is was an inexpensive choice. I was first moved to Pegasys and used it for over 2 years. I started at a low dose and worked up to quite a large weekly dose but had absolutely no noticeable side effects. Expense for my insurance company was at about $10 - $12,000 every few months. Strangely Pegasys controlled my white and platelet loads perfectly but had relatively little impact on my red cells. The great thing about Pegasys is that it is a weekly shot and has much reduced side effects compared to the daily shot of Intron A. The weekly shot was not a problem but traveling was not easy due to the requirement of carrying syringes and having to keep the drug at refrigerator temperatures. My doctor at Cornell, in NY, added Gleevec to my prescriptions and I had an immediate improvement in red cell lines. After about 6 months, I was removed from Pegasys and kept on Gleevec with rock solid perfect numbers. I have not had a phlebotomy since starting Gleevec and have been reduced from having to have blood tests (CBC) every 2 weeks to once every 2 to 3 months. Gleevec has been terrific but it is about $17,000+ for my insurance company every 90 days. Due to my situation with radiation treatment they have been accepting of this cost. I hope this helps and good luck! Let me know if I can answer any additional questions.

[ainslie in reply to Weismant]

I have never heard of anyone being treated with Gleevec for PV, did I miss something, I read all the forums and the MPN net conference at the Mayo in Arizona this feb, consulted several experts on PV and no mention of Gleevec, Sounds like its been fantastic for you, what is it and how do you take it.

[Weismant in reply to ainslie]

It is one of the possible drug options and there have been some limited studies in the US since in many ways it should not work. Gleevec (Imatinib) was developed by Novartis and is the "miracle drug" (tyrosine-kinase inhibitor developed in the 1990s that turned Philadelphia Positive Chronic Myelogenous Leukemia (CML) one of the myeloproliferative diseases, from an inevitable death sentence to a long term treatable disease. It has revolutionized the treatment of CML and allow most patients to have a good quality and started the hunt for JAK2 inhibitors and other small molecule drugs. It is not clear why it works for some folks with other MPNs. We had a few that had been on it for a long time doing quite well in our support group. I am among the fortunate ones where Gleevec works very well on my PV and causes no noticeable side effects. But it is not cheap at about $50-$60K per year.

[jogging1 in reply to Weismant]

Thanks for the reply. I'm so glad you seem to be doing very well considering all you have been through and these stories give me encouragement to try different drugs. Gleevec seems to be doing very well for you although I've not heard of it and it's never been mentioned to me when I've seen my consultant here in the UK. If I think of any other questions I'll come back to you if thats OK.

[Loubprv Volunteer in reply to Weismant]

Hi!

I was interested to read your post on the site re hydroxicarbamide and radiation damage to your DNA.

Could you tell me what your symptoms were re radiation damage?

I've been on hydroxicarbamide for 6 years - was diagnosed with PV when I was 54.

Until 2012 I was really really well and Hydroxicarbamide suited me well - in fact I believe it still does.

However! In 2012 I was treated with a very strong antibiotic called Nitrofurantoin for an ecoli infection.

Around the same time, I was receiving strong UVA treatment to try and combat aquagenic pruritis.

The antibiotic caused severe nerve damage ( peripheral neuropathy) but bizarrely, at the same time, I became intolerant to all foods containing preservatives, additives and chemicals, and lately have become constantly nauseous, which is horrid.

Just wondering if all this is connected to the UVA treatment.

I'm rather grasping at straws which you might gather, but any information would be greatly appreciated!

Thanks

Best wishes

Louise

[Rachamim]

Hi Jogging

I was on HU for a year after diagnosis in 1989 but it didn't help. I've been on Interferon A for the past 23 years and it did take a few years for my body to get accustomed to it. However, it's kept the PV under control and helps with the itching although the dosage has needed to be adjusted one way or the other from time to time. I take a couple of analgesics to help with the side effect of 'ache-i-ness' which in the UK would be something like Paracetamol or in the US something like Tylenol (?) I'm extremely blessed having access to the UK National Health Service although it's creaking at the seams, as I don't have to pay anything for drugs although I did contribute to the National Health Insurance through my working life. I calculated a few months back that over the 23 years I had 'consumed' over £400,000 worth of Interferon. That's around $620,000. I could never have afforded that.

Hope your treatment of your condition is successful and that you are able to enjoy life in spite of it!

John

[NewBloom in reply to Rachamim]

Hi, do you know how much each pen cost? would be interesting to know.

[jogging1 in reply to Rachamim]

Hi John. Thank you so much for replying to my post. Its good to hear that Interferon has kept your PV under control for so long, I find this very re-assuring but I know that we all respond differently to different medications. I am going to give it a go!

[Malaika]

Hi I have ET and started Interferon five weeks ago as after 12 years of Hu it was no longer controlling the platelets. The first injection gave me a real roller coaster ride with the side effects even with the recommended paracetamol. However that was the only bad night.I am able to cope with the side effects which are getting better each time.It did disturb both my INR and blood glucose levels but we are working on those and I am sure they too will improve. The good news is that at my hem appt my errant platelets had more than halved making all side effects very worthwhile in my case.

Hope this helps a little we are all different but wish you success in this.

[jogging1 in reply to Malaika]

Thanks for the reply. I'm also on Warfarin for AF and if you don't mind me asking how often are you getting your INR checked since being on Interferon?

[Malaika in reply to jogging1]

No problem ask away. I had my INR checked after first week then weekly. It was stable until week 3 when it dropped very dramatically, altered dose and has been stable again now for two weeks so now not being checked for two weeks. I think it will depend on your reaction we are all so different and INR can be tricky to get right I find but I was happy with this level of being checked. Good luck keep us updated please.

[NewBloom]

Have been using Interferon alpha since Oct 2012, first injection was pretty awful but did improve over a short time. Some nights I experience back ache, headache and can either sweat or become very cold some symptoms may be PV related and not due to Interferon. For the first 4 weeks of diagnoses I was on HU which controlled my counts well, counts have been higher since using interferon and not yet stable. I did travel earlier this year and have to agree it’s a pain to travel with but advised Interferon is better for long term use, with this in mind I will continue for a while longer. I do think it’s worth a trial at least. Good luck!

[jogging1 in reply to NewBloom]

Thanks for the reply. I am going to give Interferon a go as I think it's worth a try at least, like you say. This site is so good for gathering stories and opinions on so many subjects regarding MPD's.

[Hidden in reply to jogging1]

Hi Jogging1

I am in the process of changing my meds I have ET/PVR and am considering other options. I read your post with interest and I am wondering how you are managing on Interferon? My other question is - there seems to be a lot of names/versions of Interferon which is totally confusing me, can anyone define these for me please? Many thanks Indy

[jogging1 in reply to Hidden]

Hi Indy,

I am on interferon alpha. I've been on it now for 18 months and I've persevered with it. My haematacrit at first did rise and so did all my other levels but they just kept increasing the interferon. I inject 5 times a week and am on a higher dose than normal. I am so pleased I have kept with it and I still take two paracetamol every night after I've injected to minimise the side effects because when I didn't take them

I got very achy legs. If you need any other advice, just message me.

Good luck!

Mandy

[Hidden in reply to jogging1]

Hi Mandy I really appreciate your reply. I was wondering how you were, as I was reading this thread and your original post was over a year ago. I'm glad you are seeing good results and are happy you persevered. I'm not sure yet what my choice will be, but would be glad of further advice if I decide to go down the Interferon route. Many thanks - best wishes Indy

[LondonKid]

Indy_Pindy

My wife is on Pegylated Interferon (Pegasus) for PCV

Pegylated Interferon is a slow release interferon which is injected once a week whereas Interferon Alpha is a daily injection.

Interferon is normally recommended as the first line treatment for under 40 year olds - the downside with interferon is that it has its fair share of side effects and many people initially suffer from cold and flu symptoms.

On a more positive note it reduces the production of blood cells from your bone marrow which can reduce the progression to Myelofibrosis.

My wife's platelet count was 685 before interferon - seven weeks later it is now 442 and still dropping. HB and HCT have remained the same

I hope that helps

London Kid

[Hidden in reply to LondonKid]

Hi London Kid - I appreciate your feedback, yes it has helped. I'm glad to read your wife is doing well on Pegasus and thank you for explaining the difference. I am wondering why there are different types and different ways of administering I? Best wishes Indy

[LondonKid in reply to Hidden]

I think the only way of administering it is via injection.

I think the interferon alpha has been around for a while and the slow release pegylated interferon could still be classed as a trial drug (i maybe wrong though)

The Slow release version is not meant to have as many side effects as the daily version

[Hidden in reply to LondonKid]

Thanks London Kid, this might be worth exploring further. Appreciate the advice - best wishes Indy

[Loubprv Volunteer]

Hi

I've been on hydroxicarbamide for 5 years with so far, no problems.

I'm 60, and also have regular venesections - I have PV.

Do you know why your haematologist wants to move you to interferon?

I would ask if you don't know.

Best wishes

Louise

[Hidden in reply to Loubprv]

Hi Louise - Like you I have been on hydroxycarbamide for approx 4 years and had few problems until recently with infections. These were infrequent at first but in the last year or so they have become regular as clockwork, i.e. chest infections, oral thrush, mouth ulcers, dry mouth, tingling lips and tingling numb tongue and they don't respond well to treatment. I have tried stopping the hydroxy for short periods to give my white cells a chance to increase and the infections to clear but this causes my platelets to start climbing immediately and unfortunately I get symptoms from rising platelets. Rock and a hard place .........My Consultant isn't happy with this situation and would like me to consider Busulfan or Interferon. I said I needed time to think about it - hence my frantic search on this site for other members experiences. Best wishes Indy

[Loubprv Volunteer]

Hi

No chance of you trying the Ruxolitinib trial?

I gather interferon is given by injection - am I right?

No stopping if it doesn't suit you, or maybe I'm wrong.

(Maz are you about? Do you anything about this?)

Have you researched Interferon on the MpDvoice.org website ??

Not an expert so don't know.

I've recently started feeling between queasy to really nauseous at the weekend and wonder if it's the effect of 5 years of hydroxicarbamide .

Ah well.

Best wishes,

Fingers crossed

Louise

[Hidden in reply to Loubprv]

Hi Louise sorry you are experiencing nausea, that is the worst feeling in the world. I can cope with most things but feeling sick it floors me. I hope its not the hydroxy because its a minefield deciding on an alternative. You mention trial, my Consultant has copied me into a letter he has sent for a second opinion and he has asked if there are any trials I might be considered for. I am not sure about this either, because of the time involved in being a participant. I know I sound spoilt and as if I have a choice but I work full time, have a busy family life and love travelling abroad when on leave. I even plan to spend a lot of time abroad when I retire in 4 years and I just wonder how much medication will get in the way of this. Hydroxy is so handy, I wish I could just stay on it and get on with life. I must sound terribly ungrateful but I don't want things to change