I am JAK2 positive ET, 68 years old and am currently taking 1000mg hydrea and asprin, diagnosed 6 months ago. Apart from ET I am reasonably fit and healthy, but I do experience fatigue, itching, pain in my bones, and at the moment mouth ulcers. I am trying to live as normally as possible but obviously it does impact on quality of life, so sometimes I feel its a struggle. The last time I spoke with a haematologist he suggested I may be prescribed interferon which would mean I would have to inject myself, apart from that he didn't give any more details. Is anybody else with similar details on interferon who could share their experience of this drug?
Interferon: I am JAK2 positive ET, 68 years old... - MPN Voice
Hi Username4444, I am sorry to hear that you are having these problems, they can be very debilitating and distressing, I would suggest that you speak to your GP about the bone pain and the mouth ulcers, he/she will be able to advise on suitable pain relief for the bone pain and also something for the mouth ulcers, lots of people do suffer with this problem and have been advised on various mouthwashes to use, which can either be bought over the counter at a pharmacy or they have it on a prescription, so do speak to your GP for advice so that you can get some relief from the pain and discomfort in your bones and your mouth.
With regards to Interferon, we have a video on our website of Alisia who talks about injecting herself with Interferon, it might help you
I am sure you will get lots of replies from the lovely people on this forum about using Interferon, which I hope will help you.
Best wishes, Maz
Hi, I am also taking hydroxycarbamide and aspirin - almost 4 years now. I am 67 (almost 68 My experience is that my levels of fatigue go up and down and I do still occasionally have a problem with mouth ulcers. I try to rest when the fatigue hits and have found that using a salt solution greatly helps my mouth problems - fairly strong solution and hold in your mouth fas long as possible without swallowing - then spit out. Several times a day.
Hopefully this helps. Keep safe.
Hi. I have suffered with extreme mouth ulcers over the past couple of years and was prescribed a mouthwash called Bezydamine Hydrochloride (also available to buy over the counter in pharmacy) which did help with the pain. I eventually got a referral to the (local) dental hospital (Charles Clifford Dental Hospital in Sheffield). I was prescribed Betamathasone soluble tablets to dissolve in water and use as a mouthwash when I feel an ulcer starting and repeating up to 3 times daily. It really helps ease the pain quickly and also promotes rapid healing
Hope you get som relief soon
Thank you all for advice and tips. Much appreciated.
I am on Aspirin, Warfarin and Interferon, I previously took Hydroxycarbamide. I was told that the most common issue with Interfon were flu type symptoms and mood swings. I've found injections fine, I always put it into my stomach as I find it easier than my leg. It did make me feel a little sick but that has passed. I still suffer with fatigue and itchy skin, but also cracks at the side of my mouth; I started by taking iron to see if it would help but am now taking Aciclovir cream and it has helped. I prefer Interferon as don't have to take it every day.
Hi, I am on Pegasys (Interferon). When I was first diagnosed I was offered Hydroxy, but requested to try Interferon , I was told older people didn’t tolerate it very well. ( I am 63 ), but I still asked to try. Apart from having a dry mouth at night, and occasionally dry eyes ( easily remedied by over the counter eye drops when necessary), I have very little other side effects. At first I was on standard Interferon which required 3 injections a week, but this is now unavailable, and I have been moved to Pegasys, a longer lasting Interferon, which means only 1 injection a week. This was a fantastic improvement, I may feel a little achy and tired the day after injection, but the rest of the week I’m fine.
I’m curious are you in the Uk. I’m 64 and after 4 1/2 years still trying to find a dose that will stabilise my platelets. I haven’t been offered interferon.
Yes I’m in the UK. They seemed reluctant to prescribe Interferon when I first required medication,and I had to really push for it. Then I was told that my trust wouldn’t fund Pegasys and if I wanted interferon I would only be allowed standard interferon. I was on this for over a year before luckily it became unavailable and they moved me to Peg. My platelets are still higher than they would like, (around 600) so at the moment I am on a higher dose than most, 135mg a week, but the rest of my bloods are fine.
I am 64 and have been on Pegasys (slow release interferon) for almost 5 years.
It’s worked very well for me , with no significant side effects and the injections (into abdomen or thigh) are very easy to do. I was originally one one injection per week but now my counts are stable I just inject once every 4 weeks.
If you do switch to interferon you should try to get Pegasys as normal interferon needs to be injected more frequently and tends to have more side effects.
Thank you all for your responses. I really don't like the idea of self injection but of course will take the professional advice. As patients who have experienced interferon are you able to comment on the advantages of interferon over hydrea, and is it also chemo? I am confused as to whether the meds we take are just to regulate platelets etc or offer some degree of relief from symptoms. My haematologist once told me the itching wasn't down to ET because I suffered with it prior to my platelets being abnormal, but when I read how itching affects MPN patients I could have written it myself.
Hi, I've been taking pegasys (interferon)since 2016. My personal experience is, the thought of self injection is far worse than the actual injection. I have the itch due to my PV, it has reduced with Pegasys. My itch isn't linked to my blood counts. Pegasys has reduced most of my symptoms. Happy to give you my experience on anything else related to Pegasys.
Hello again. The itching is a known effect of ET and many of us suffer from this. There are various remedies that work well for some and not others. It really is trial and error but I found, after a great deal of research, that a change in diet (low inflammatory) helped me immensely. If I remember rightly, it's due to cytokanes and after bathing in particular can be a nightmare. I wondered for years why I hated showers and why I felt as though I was being bombarded by thousands of little needles (like Gulliver in Lilliput) but it seems this was the reason.
I removed oranges and juice from my diet first. I had been having a glass with my breakfast for a long time. Over-indulging in raspberries and strawberries had also been a habit but I have managed to kick that as well. I do have one or two occasionally but not a whole pack of raspberries......... oops!
When I bathe I use Oilatum in the water and Lancaster body cream/lotion afterwards. Although I do experience a little itching it is a far cry from previously being so severely affected that i wanted to rip my skin off! Now it is very mild and goes quickly.
I hope this helps you.
Thank you so much for this. I don't want anybody else to suffer itching because it's miserable and horrible but it's so reassuring to know I'm not on my own. I also dread showers and baths because of the itching that follows, at its worst like hundreds of tiny ants biting me. It is also triggered by a change of temperature and when I change my clothes. A course of photo therapy stopped it completely but it returned within two weeks although to date not as bad, not like ants biting more the little needles as you described. I use a cream, Balneum at the moment, but all of them and I have tried dozens all start the itching but I continue to use in case the long term moisturising effect will help. I have to pace up and down to calm myself.
I am very interested to read about the dietary changes you have made. Do you know where I can get a comprehensive list of foods I should avoid?
Mouth ulcers have cleared up and itching not too bad at the moment (perhaps warmer weather) so am feeling very much in better place. Thank you all for continued support.
On this site there are a number of anti inflammatory diets mentioned but I find it's trial and error because we're all different.
Online if you just search 'inflammatory foods' and non inflammatory foods, rather than over restricting yourself, you can pick and choose until you find what suits.
I can tell you, since the day I discovered my orange juice every morning was causing 'major' itching, I have not had an orange or juice! I can however pig out on pineapple and eating apples and kiwis helps me greatly.
Do remember to drink water all day. Sips not gallons at a time because that overloads the kidneys. Keep smiling! It's a lot to take in all at once so you need to take one bit at a time and concentrate on getting that right. All the best Penelope.
I am 68 ET, JAK2+ and injecting interferon (Pegasys) due to being severely allergic to Hydroxy. For me, although I experience many side effects, it is 200% more tolerable than hydroxy and when I manage to overcome the fatigue and lack of motivation, I am exercising and leading as normal a life as possible. not at the moment of course due to shielding.
I also take clopidogrel as my body does not like aspirin!
It took a very short time for my platelets to return to the normal range, once I was using Pergasys. The other had done nothing but given me major problems, which included those you mention and the loss of the use of my thumbs and severely reduced dexterity.
I stopped taking hydroxy due to those effects and others before my haema agreed to prescribe the alternative. I hope this helps. I must add that I am notoriously unaccepting of the majority of drugs and even I tolerate Pegasys well. All the best Penelope
You mentioned loss of dexterity. I’ve noticed I’m all fingers and thumbs these days also I experience pain in my right wrist and thumb. My gp has said it’s a touch of arthritis. All this and added fatigue since increasing my hydroxi dose by 1 tablet a week. Now on 17 hu and 9 anagrelide weekly.
'It's not the drug' & 'it's not the condition' were two statements made continually by both the haematologist and specialist nurse. It's fibromyalgia said the nurse. See your GP. No test for that so they just prescribed me something that according to the leaflet would render me virtually incapable of normal functions.
My hands were so bad, I had to have an occupational health assessment and was told I could have an assistant to carry out the duties I could no longer carry out and Dragon, which would allow me to speak into my computer rather than type because my thumbs were completely useless and my fingers felt as though they didn't understand the messages I was sending to them.
Strange then why within around 3 months of not using the drug, my hands became better. Within 9 months I had got the use of my thumbs back and now, almost 2 years after changing to Pegasys, I have no symptoms at all in my hands. Back to normal!
Sorry, I should tell you, I never dosed more than 45mcg, although my haema told me that would do nothing (I had done a lot of research) and that was initially once a week. I reduced to every 10 days and now, for the last 2 months, once a fortnight. I reckon that's success. Of course, the fewer doses, the lower the side effects. All the best. Penelope
Thank you so much. That is so so interesting and really important. I wonder if the heamo has taking note.
Very doubtful. I changed hospitals recently and now I'm so happy to be seeing a wonderful haematologist who listens and actually discusses the situation with me. He also has far better knowledge and an open mind. Something foreign to his predecessor. All the best in your future endeavours.
Thank you again. We seem to be in very similar circumstance. I am also 68, ET JAC 2 positive. I think at my next appointment I'll discuss changing meds to the haematologist but the hydrea has been successful in reducing my platelets so he may be reluctant to agree. He is of the opinion my symptoms are due to ET and not a side effect of hydrea, and that the itching is not due to my condition because I suffered with it prior to my bloods being abnormal. Although, I have never experienced any skin complaints or allergies in my life, and even now my skin is smooth and blemish free.
Hi again. I believe the itching IS a symptom of ET (cytokanes which cause histamines). early on in my treatment, I visited another haematologist, in Liverpool who had not heard of the itching but researched it when I was there and confirmed this. You say you did suffer this prior to having this condition but so did I. It wasn't BEFORE I had the condition but before anyone noticed it and it was diagnosed. I have had this for so many years and suffered the symptoms, including so many TIAs I lost count and one minor stroke in 1993. I had got so that I didn't even mention the TIAs to anyone but my hiusband because I knew I would be on a stroke ward and I hadn't had a stroke. Just taking up a space that was needed by someone who had. I thought /i was just weird in not liking showers and feeling uncomfortable in them. It was like my skin crawling. Clearly, the mutation hadn't reached it worst at that time but it certainly did. I now have a big problem with allergic reactions to so many thngs it's become restrictive in the extreme. Sorry, I got carried away then,. I was only diagnosed in 2018.
I’ve been on PegInterferon since the start of the year, gradually increasing dosage up to 135mcg - didn’t tolerate it very well at start but all OK now and most of my symptoms due to my JAK2 PV have gone
I opted for Interferon as it’s a natural substance your body produces so is not considered to be Chemo treatment
I’m ET Jak2+ and been injecting Interferon for over a year now.
The injection process is simple and totally painless.
I inject on a Weds eve, have some dinner, plenty to drink (water/squash 😀) take a couple of paracetamol and then to bed.
Am fine the following day but begin to feel a little jaded around 4/5pm. Another earlyish night and I’m 100% fine on Friday onwards.
It’s been extremely effective at keeping platelets down with minimum side effects.
Absolutely nothing to worry about from my experience👍
I can't speak to a personal experience with an interferon (yet), but I do have experience with hydroxyurea. While many people tolerate HU and benefit from it, not everyone can. That would include me, as I experienced HU-toxicity even at sub-therapeutic doses. Asthenia (fatigue) and stomatitis (includes mouth ulcers) are common side effects of HU. Bone pain has also been seen with HU, but like fatigue, can also result from the MPN. It can be hard to sort out what is the HU and what is the MPN. Clue - when did the symptoms start?
It is important to understand that ALL of the meds used to treat MPNs have their own risk/benefit profile. Not treating the MPN also clearly has significant risks. We each have a unique presentation of the MPN and react differently to the various treatment options. It is very important to make a fact-based assessment of what our treatment options are.
Suggest always going to reliable sources for information about meds and side effects.
The ePocrates site requires a free membership to look up multiple drugs.
HU and bone pain. (Note MPNs can cause bone pain)
HU vs Interferon. One of an emerging set of studies showing Interferon more effective. Not everyone agrees, but more are moving in this direction. Note: PEGylated Interferons are much more expensive than HU, so there is resistance to its use in some systems of care.
This is just one study. There are more. The general consensus is that they are either equally effective or PEG-interferon may be more effective. I expect the unique nature of how individuals with MPNs present complicates this analysis.
I was taken off HU my the MPN specialist who I consulted. He was very clear that HU benefits were not worth the risks for me (mutagenic and other risks, experiencing mouth ulcers/leukoplakia, compromised intestinal endothelium at low dose). Only you can your doc can determine what the right choice is for you. For now, I am on on a phlebotomy-only tx regimen for age 64 JAK2+ PV. That is the right choice for me - for now. It will change someday as the MPN progresses. I consider PEGylated Interferon to be the first choice when I need to resume medication. I would also consider Ruxolitinib depending on how the PV is presenting. I am hoping that by the time I have to make this choice, I will have even more options.
I hope that helps. All the best to you as you go through this decision making process.
Lot of more educated on the topic and experienced folks here than myself. I’m newly 40, PV Jak2+, diagnosed in Jan this year. I’ve been on peg interferon weekly injection for 12 weeks now all at 45mcg (25% of a full 180mcg dose). I have had very minimal if at all side effects (though again my dose is low compared to others here). My platelets are back below 400. My wbc is a bit too low but we’re watching that and my hct remains elevated but the monthly phlebotomies help with that. Hang in there and lean on this group - everyone here is awesome! So thankful everyday for it.
My answer to this problem is using bicarbonate soda, 1 tablspoon soda in 1 galss of water,hold in your mouth like Turfbeg mention for the salt.
I wish you all the best.
Have a nice week.