Interferon Treatment
Posted , 10 users are following.
Hello Guys
I was wondering if anyone out there is being treated for their PRV with interferon injections? I was originally told by my Haematologist that I would have to go on to Hydroxycarbamide but the hospital review panel that reviewed my case is saying that I need to go on Interferon because of my age. I am still a “baby” at 53 years of age….well humour me at least…LOL – As I am not 60 years or older they feel that the first line of treatment should be interferon and they want to start me on it soonest as I am apparently at high risk of stroke, pulmonary embolism or heart attack. I should point out I am not overweight, never smoked but do have primary PRV and suffered multiple pulmonary embolisms in 2008. My only concern with going on interferon is that the side effects aren’t pleasant. The Haematologist said I would have to inject myself 3 times a week……..REALLY???....3 times a week? Hydroxycarbamide I think I could tolerate better but the Haematologist and review panel believe that as there is a small risk of transformation to AML if I am put on this too early, interferon is the best option. I am fully aware of the risks where Hydroxycarbamide is concerned, but transformation to AML is small around 3%-5% I believe, and feel it’s a risk I would rather take especially if interferon is going to impact on my quality of life. I have managed my condition so far just with venesections and Clopidogrel but am told this is no longer enough.
Any advice/feedback greatly appreciated.
Many thanks
Keith
0 likes, 34 replies
clem19079 keith28441
Posted
angela_o..o keith28441
Posted
Hello Keith. I have nothing very great to add to the discussion other than to refer you to a link I posted about a month ago under a thread called Bruises and their treatment. In a conversation with Peter98873 I mentioned a website which shows the results of different clinical studies relating to the mangement of PV. Interferon alpha is mentioned, quite favourably, in there. Sorry, I don't know how to copy it into here (!) but it shouldn't be too difficult to track down.
keith28441 angela_o..o
Posted
Many thanks for your response. Yes, I do remember reading your response to Peter98873 and the link you sent him. I am sure I can find it and will have a good read through it.
Thanks again for responding.
Take care
Keith
Orseblue keith28441
Posted
Hi Keith, I'm 49 and my hematologist is planning to put me on the hydroxyurea tablets, she has been hesitant about it. My palets are not to bad, it's gone up from 350 to 500 in a few monthe tho.
I had to give myself blood thinning needles while my body adjusted to warfarin and if it wasnt for the bad rash, the needles was sort of manageable (2x day).
What side effects are they talking about?
keith28441 Orseblue
Posted
Many thanks for your response. My platelets were 679 but have since come down to 543 albeit temporarily as I have been on Fragmin (Daltiparin) injections prior to having had a gallbladder operation last Thursday. I continue on these for another 5 days, then I suspect they will start to rise again. Incidentally, my Haematologist said that the Fragmin shouldn’t affect my platelets but I beg to differ. The information sheet that came with them clearly states that one of the more common side effects of taking this medication is a marked reduction in platelet counts. If I thought this could possibly be a long-term solution, I would take it or the warfarin tablets but my Haematologist hasn’t suggested this as a possible course of treatment. My concern with the interferon injections is that some of the side effects can be quite severe. They include flu like symptoms, hair thinning, nausea, vomiting, mouth ulcers, metallic taste, so loss of taste buds, loss of appetite, drowsiness, dry mouth, sweating, bone pain, weakness etc. Of course, it doesn’t mean to say I will get all these symptoms and some might be less severe as time goes by but I am a little concerned as to how this will impact on my quality of life. There are some more serious possible side effects, but these are rare so I am just concentrating on the more common side effects that I may get. I am due to see my Haematologist again early next month, so will be asking him some more probing questions. I am adept at challenging him if I have reservations about the course of my treatment.
I hope you are managing your condition OK?
Thanks again Orseblue and all the very best to you.
Kind regards
Keith
Orseblue keith28441
Posted
Hi Keith,
The symptoms sounds a bit similar to the hydroxyurea, I'm also worried abot the quality of life from taking them.
I have issues with my enlarged spleen, permanent headache and becoming fatigue. Still working fulltime and it worries me how long this can continue. It talks about hair loss and thats ok, can handle that.
I had a major operation back in February and managed to heal ok. So hoping the PV will behave, got the jak and lupus was found as well, have not had the bone marrow biopsy yet due to the blood thinners I take.
Let us know how your symptoms are, and if it is affecting your day to day life.
Regards / Anna
keith28441 Orseblue
Posted
Yes, my JAK2 also came back positive. So sorry to hear they found you had Lupus as well. I have a friend that has it and it’s not nice. Poor you.
My symptoms are by and large fatigue and tinnitus. I do have a slightly enlarged spleen but this doesn’t cause me too many issues just an occasional dull ache. I used to suffer from terrible migraines with aura but following treatment to lower my blood counts, I have not had a headache let alone a migraine since the 28th May this year despite the fact that my platelets are high. I first started experiencing these headaches back in 2010 along with some other symptoms such as shortness of breath and dizziness so in hindsight, I believe this is when it perhaps all started for me. With regards to the tinnitus, I was referred to an audiologist at my local hospital. I do have some moderate hearing loss but no one could say whether the tinnitus was down to this or the PRV. I subsequently qualified for hearing aids and whilst I was a little reluctant in wanting to use them, I did from day 1. It made a huge difference. When they are in, I hardly notice my tinnitus. When I take them out at night, I really notice it. I have since bought a tinnitus relaxer from Action on Hearing Loss. It’s a sound oasis playing soft sounds such as surf, wind chimes etc and I have this by the side of my bed and play it for half an hour, which helps me (and my wife for that that matter) to drift off to sleep. It’s on a timer and you can have continuous play, 90 minutes, 60 minutes or 30 minute duration. The music gets quieter as the time lapses. So if you ever suffer badly from tinnitus at any point, have a chat with your GP and get a referral to see an audiologist or perhaps speak to your Haematologist about this. For me, it’s a god send.
My quality of life isn’t too bad at the moment although most afternoons I have a nap for a few hours, which helps with the fatigue. I just don’t want the interferon drugs to compound this hence my concern about going on this drug.
Let me know if they put you on the Hydroxyurea and how you get on with it.
Take care Anna.
Kind regards
Keith
suzannepv keith28441
Posted
Hi Keith,
I'm female in early fifties with JAK2 and polycythemia vera. Have been on interferon for 11 months. Started on 3 injections a week and have come down to 2 as blood counts started to hit normal range.
It's an intense medication and I've experienced fatigue, hair loss (about a 3rd ), nausea, weightloss, sweats. On the day of injecting a dose, it's recommended here (New Zealand ) to take paracetamol 1000 mg x 2. For me 2, 1 dose of 1000 mg paracetamol really lessens body aches and moderates hot/cold temperature fluctuations.
I chose to take interferon because of my particular presentation of Polycythemia vera and some research that I read. At the moment, I'm transitioning to trial hydroxyurea instead to see if I experience better quality of life and less fatigue.
I don't have advice for you, as we are all so unique and make decisions based on personal needs. But if it's side effects you want to avoid, I'm not sure interferon is the best choice for you.
keith28441 suzannepv
Posted
Many thanks for your reply, which is quite timely as I met with my Haematologist just yesterday to discuss the way forward. From what I have read, interferon is not tolerated well whereas the side effects from Hydroxyurea seem, in most cases, to be more on the mild side. I am really pleased to have received your post Suzanne as you are the first person that I have come across that is currently on interferon so it’s good to get your perspective on the drug. During my conversation with my Haematologist yesterday, I told him I wasn’t ready to commit at this stage. He did however say that despite the hospital review panels strong recommendation that I go on interferon, he would support my decision if I wanted to go on to Hydroxyurea instead. He strongly recommended I go on one of these two drugs as Phlebotomy/venesection alone is no longer managing my condition and I am classified as high risk of clotting. As it stands I have to go back to the hospital tomorrow for another venesection and I meet with my Haematologist again next month to make a final decision on what to do. My wife is currently in the US (I am UK based) but felt I should discuss it with her first (as she is after all, a big part of my life) before making an informed decision. I am edging towards Hydroxyurea but we shall see. I feel for you having your quality of life impacted in this way, that is my main concern and I can certainly empathise with you on the fatigue as I too suffer from it. Keep in touch and let me know if you go ahead with the transition to Hydroxyurea. I’ll let you know what decision I come to.
Bye the way, I love New Zealand. I have to admit to being a massive All Blacks fan, they play such beautiful rugby. I’ve attended a number of matches over the years and had the pleasure of seeing them play on a number of occasions!!
Thanks again for your response, much appreciated.
Take care and all the very best to you.
Kind regards
Keith
suzannepv keith28441
Posted
Hi Keith, Here's a bit more about my interferon experience. A symptom I forgot to mention was that my taste buds are very effectived the day after treatment. Food I normally enjoy is tasteless.
If my hematocrit was controlled by interferon, I wouldn't be switching drugs. For me the additional use of venesection as well to control my blood is the tipping point for me. The added fatigue with venesection effects me greatly.
Without venesection, I managed side effects of interferon with the use of hyperbaric oxygen therapy (hbot). After trying daily treatment for a month , my side effects were so diminished that we imported a soft shell mild 1.3 ATA chamber via Australia from China. It's expensive as a treatment but the improvement in the quality of my life led our decision
Also, hbot is a clinically valid treatment for treating anemia. It's the anemia that is the greatest cause of fatigue after venesection. That's my opinion and experience. So getting oxygen into the plasma and available to the cells of the body has certainly made my life a lot easier as I learn to work with polycythemia vera.
Hope this helps you and others coming to terms with this condition.
And about the rugby, we were all a bit sad after the AB's lost last week. So we're happy with a win over Italy. By the way, hbot is used here after rugby games and is part of helping the players recover after a match.
All the best,
Suzanne
keith28441 suzannepv
Posted
Again, many thanks for your response Suzanne. By the way, hope you are not affected by that terrible earthquake? Very sorry to hear South Island got hit again. I still remember the devastation in Christchurch 5 years ago. Terrible!
Take care
Keith
suzannepv keith28441
Posted
Hey Keith, More re: interferon. My Haematologist has mentioned that I can move between interferon to hydroxyurea as a treatment option. So the medication wouldn't preclude you from doing so. But health care regulations are so different between nations. I don't know if you would have such an offer.
Re quakes. We were just rocked around and suffered very little damage. Wellington CBD more affected, being our closest city. Had quite a few quakes yesterday and through the evening. We were all glad to have a night without more movement. Our fellow people down South have surely had it much worse than we have.
All the best with your decision, Suzanne
keith28441 suzannepv
Posted
Take care and stay safe. Hopefully, the aftershocks will dissipate soon.
Best wishes
Keith
christine54132 keith28441
Posted
I was diagnosed in May with the Jak mutation and all the usual symptoms of PV. I was put on interferon after 6 weeks of weekly blood draws and at 6 months my blood counts are relatively normal. I still work full time and have not had any adverse effects from the interferon.. from the research it seems this gives sa good chance of gettiing things back to normal. good luck with your decisions.
margaret22116 keith28441
Posted
hi Keith. Just saw your post. I suffer from a different disease. Used interferon very well for a period of 3 years. Didn't find the side effects bad at all. I have had to stop taking it now because there may be a 'late reaction' to it. But I am not convinced it is that which is causing problems for me. And symptoms not dreadful so nothing major going on. Hope this helps.
keith28441 margaret22116
Posted
Many thanks for your responses. I paid for a private appointment to see another Haematologist yesterday in order to be able to sit down for an hour and go through the pro’s and con’s of both interferon alpha and hydroxyurea. It was money well spent and it is apparent that not taking either one of these drugs is no longer an option for me. I am mulling over as to which one to take but am edging towards hydroxyurea for a number of reasons including the fact they are taken in a tablet form and therefore I don’t have to worry about storing them in a fridge unlike interferon, which is a particular challenge (albeit small) as I often travel overseas. I have the option to switch if I don’t get on with either of these drugs. Thanks again both of you for your responses. Much appreciated.
Kind regards
Keith