Interferon or Hydrea
Posted , 10 users are following.
Hello pv community,
Just back from my Dr appointement and he thinks that I should start medication very soon. Mainly because of my high platelets count. I'm from Canada and I don't know what the number means exactly but it's at 1100.
At first, he wanted to put me on Hydrea right away, but, after I asked him about other options, he talked to me about Interferon and seamed to think it to be a good option for me. I see him again in 2 week to give him time to read about it.
I would like to hear from people who tried Interferon and/or Hydrea and could tell me about side effects and results.
Thank you
Marie-Jos
0 likes, 24 replies
frances20411 marie-jos6518
Posted
Welcome! I have Not taken either med. but my platelets run near 700 and it was advised to take Hydrox...but I didn't like the side effects. You can look up thru
goggle any side effects regarding either meds....but this does not mean that you
will have those side effects...each person's makeup is different. I have had DVT
even before I had PV and everytime I have a phlebotomy (America) my platelets
number goes up somewhat. I take baby aspirin and drink lots of water and walk
and wear 30gg support hose. I have battled platelet problems for over 50yrs and
survive each one..."so far". I know nothing about interferon (look it up). Good luck!
ItchyChris marie-jos6518
Posted
Lets get the nit-picking out of the way, I understand your use of the brand name Hydrea as I used it at one time. The active ingredient is Hydroxycarbamide, formerly known as Hydroxyurea, at least in the UK.
Many years ago, I was offered Interferon as a treatment but I declined it on the grounds that it was a twice a day self applied injection and I have a phobia of needles. I have taken Hydroxycarbamide, in a quite large dose for nineteen years with no obvious side effects, You cannot count tiredness and anaemia as the treatment requires a low iron level and it is this that produces those side effects.
Incidentally, my platelet count is 105 * 10^9/litre and my hospital regards the normal range to be 150 – 400.
ItchChris
peter98873 marie-jos6518
Posted
Hello Marie-Jos'
ItchyChris just about sums up the situation nicely. After many years of using Hydroxy-carbamide (Urea) I was finally stopped from taking this drug and now take another newer one (Ruxolitinib). Hydroxy is the choice of many specialists and providing it is regularly assessed for each patient can be used without problem. The difficulties I had were with extreme doses over a long period but even so, some people feel the side effects earlier. Each patient has a different metabolic make-up and will react differently. I never used Interferon so will not comment on this aspect. Hydroxy was until more recently the best available treatment for PV. Newer dugs are becoming available but are much restricted due to high costs. A high platelet count increases the risk of blood clots so needs supervising. Your dosage is assessed on your weight, height and other medical factors which your haematologist requires. Generally it takes a little while to gather all the information needed but this does not pose any difficulty. Any drug should be supplied with known side-effect information leaflets.
marie-jos6518 peter98873
Posted
My platelets have been high for years now, 500 to 600 was "normal" for me. But with the phlebotomias they are out of control and my iron is at 6 (normal starts at 50). I am 52 and my dr considers me young, and he says that Interferon could "repair " the bone marrow. He showed me results from an other patient for whom it has worked. I guess I'm going to trust my dr and do what he says.
peter98873 marie-jos6518
Posted
My platelets went through the roof and stayed there for quite a long period but have come down again since. I guess your doctor is keeping an eye on your situation which can only be good. If you have any queries best give him a call if you feel you need any advice. As I said previously I have no experience personally of interferon but if it does cure your problem then that is what I would term a result. I must say I have not heard of any other person reaching a cure before but it seems in your situation the facts perhaps speak for themselves. Wish you all the best for the future. Let us hope the good news continues. Peter.
marie-jos6518 peter98873
Posted
Hello again,
From what I understand, it's not a cure, it's a partial repair. It could show the progress of the illness.
peter98873 marie-jos6518
Posted
Thanks for your response. I suppose a partial repair is probably the best that one can achieve at this time. It seems that Roni-S has just about answered your questions about interferon usage. She certainly had a tough time. It is much the same with Hydroxycarbamide which can produce some very unwelcome side-effects, and yet others can get by without being over affected by its use. Bewildering at times. Best wishes.
Zapamania marie-jos6518
Posted
Hi Marie pegalated interferon also known as Pegasys is the only drug available to us that can stop the progression of Pv or et to MF. I've read a lot of people on it saying that they are almost "cured" as their bmb shows less fibrosis. It's usually started at a low dosage of 45 mcg. That you inject yourself once a week. I read the side effects can be flu like symptoms the first few times until your body gets used to it. So, your dr. Is right saying that the interferon can repair your bone marrow. Good luck and let us know what choice you have made. Zap
Roni-S marie-jos6518
Posted
Hi Marie-Jos,
I wanted to share with you my experience with Interferon. I was diagnosed with PV ten years ago, when I was 30. Since then every 6 months I'd taken blood tests and met with my doctor to assess the situation.
Last summer he decided we need to start treatment as certain levels were too high (particularly hematokrit, if I remember correctly, but also platelets and my enlarged spleen). Becuase I am planning to get pragnent my option was Interferon, not Hydrea.
I took Interferon for 3 weeks, self injecting it three times a week. It had really, really bad side effects. Physically, I felt weak most of the time (though did manage to work full-time or nearly full-time), had little appetite, and my skin was very itchy. I also feld dizzy twice or three times. Emothionally, the impact was even stronger. It was so strong that it's difficult to put it in words, but in essense, I felt a lot of sadness and fear and hopelessness and felt really bad about myself. Luckily for me - my normal self is quite energetic and optimistic and happy with life and with myself. I guess Interferon's impact on my body was so great that it really messed around not only with they physical senses but also with my thoughts and emotions (which were so different to what I know and am use to that it was mad). That's why after 3 weeks of trying I told the doctor that we are done with Interferon. He is now suggesting peg-interferon, which research has shown has less side effects. I'm still not excited about taking it, we'll see, there are also financial considerations.
I guess if I were to read this post I would be really concerned about taking Interferon. But then again we are all so so different. I can say about myself that I had rarely taken any medication, ever, and that I am a really healthy eater and have been vegetarian since I was a teenager. So perhaps the impact Interferon had on me was so strong because my body is so use to digesting good things?
Take care,
Roni
marie-jos6518 Roni-S
Posted
Thank you for sharing your experience. That is what I'm looking for. I know everyone has different reactions to different drugs. Since diagnosis 4 months ago, I started daily workout sessions, which makes me feel good, I used to be in good shape, always loved sports, but I was so tired from PV (before the dx) that I couldn't do anything, I even had to stop working temporarily. My biggest worry is that the new treatment will make me tired again. The first treatments, phlebotomy and Aspirin made me feel like a new woman, energy was back, but my dr is worried by my very high platelet count and very low iron level so he stopped the phlebotomies a month ago. I see him again next week and he will tell me wath treatment he chooses. I will keep you posted.
bill71415 Roni-S
Posted
Thanks,
Bill
marie-jos6518
Posted
Hello all,
Saw my Dr this morning, he is still undecided about the treatment, he is now leaning towards Jakafi. He will be going to a conference about it on wednesday and will see me again on may 8th. I'll keep you posted, but of anyone has anything to say about Jakafi, please do so.
Thank you for the great answers
Marie
peter98873 marie-jos6518
Posted
Hi Marie-Jos'
I have been prescribed Ruxolitinib (Jakavi) for over two years now and I have found it a much better proposition than the Hydroxycarbamide it replaced. It is a more expensive drug though which may affect your usage in USA where some have found it a bit prohibitiuve. In UK it is now more freely available once recommended by the medical specialists but even so the cost is a factor. I needed to stop taking Hydroxy after many years of use and the effect of Jakavi was quite apparent from the beginning. Its dosage is considered by your weight, height and other personal factors which form part of the medical calculation. Hydroxy (Urea) for me did a good job of controlling my symptoms of PV until I needed large doses which eventually gave me some difficullt symptoms. Hence my move to Ruxolitinib (trade name Jakavi in UK) which has been quite beneficial inasmuch that I feel generally better and withoiut many of the former side-effects I suffered. My PV is now diagnosed as MF but I cannot say I have noticed much difference, as yet. I feel that the new drug is a great improvement in controlling things generally and makes life more comfortable. Hope this information helps you decide if Jakavi is recommended for you. Good wishes.
Peter.
marie-jos6518 peter98873
Posted
Hello Peter,
I'm in Canada so we, like in the UK, have medication universal insurance that would cover most of the cost with a recommendation from my dr (because it is an exception médication). I also have a good insurance at work that covers it. The cost is a factor for someone who is not covered. I went to my pharmacy to know how much it is and it would be 6000$ (Canadian) per month. This is my political statement: cost should NEVER be a factor in healthcare.
Thanks for the feedback on Rubinitinib. Taking medication is a big deal for me and I need all the information I can get. My hæmatologist appreciates that I come informed to my appointments and asks me what I think before he prescribes anything.
Thank you
Marie
peter98873 marie-jos6518
Posted
Sorry, I was not aware you were Canadian. Seems like you have similar medical provisions as we have here in UK. My grand-father and some family moved from UK to Winnipeg many years ago. I never knew them but did occasionally see some of our younger relatives when they visited here. None of them ever returned. Must be good. Keep well.
Peter