@BritinSwitzerland - I have no experience of interferon, but wish you all the very best on that journey. Have you spoken with your clinical nurse support? I found them very helpful when I went onto Hydroxy and was overwhelmed with possible side effects. Their reassurance that I could contact them as soon as I experienced any side effects was very helpful. There will be people here who do have the experience of Interferon. Again, I wish you well.
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Hi @BritinSwitzerland. I can imagine any change in medication causes a bit of worry. I hope @Rammie18 can offer some insight 
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Hello there @BritinSwitzerland
It is understandable you are concerned about changing your treatment and please do speak to your Clinical Nurse Specialist about this when you start.
Our colleagues at MPN voice have some great information about interferon and itās side effects here Layout 1 (mpnvoice.org.uk) and also some frequently asked questions too Interferon alpha ā MPN Voice
I do hope this helps and keep in touch, we are are also here on the phone line if you would like to talk: Blood cancer information and support by phone and email | Blood Cancer UK
Kind regards
Gemma
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Interferon was the first proper course of treatment I had for my Polycythaemia vera (PV). It started with a low dose as my levels were just over the normal level. As it comes in the form of an injection I was a bit nervous about doing it myself but actually unlike any other injection Iāve had I could take it as slowly as I wanted. The needle is small and I took mine by grabbing as much of my belly and then injecting. After a few goes it became second nature.
In terms of side effects. I had a bit of a temperature and flu symptoms after the first time but that was because the nurse gave me double the dose. It wasnāt her fault as I think she was more focus on showing me properly how to do it. But generally I was absolutely fine with interferon. No side effects at all didnāt feel any different days after and nor did it stop me from doing anything. Itās not a form of chemotherapy so no fear there and my levels were absolutely fine.
Iāve watched a few medical seminars on Polycythaemia vera (PV) and it said that inferon is a really positive form of treatment in terms of outcomes, itās newer than hydroxacarbamite and tends to be the preferred course for younger patients.
I suffered no fatigue sleep loss hair loss or pains while I was on interferon.
I feel like Iām babbling but Iām more than happy to answer any specific questions you may haveā¦
Thanks @Nichola75 for bringin this to my attention. More than willing to talk about my personal experiences particularly if it helps others 
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Thank you so much @Rammie18 for your feedback here and I really do appreciate it as I am very nervous to change as I had read so many things about Interferon. I know people respond differently and overall I have done really well on Hydroxy but they are seeing progression in fibrosis within my bone marrow now and want to move me to Interferon. In Switzerland it is actually the latest version specifically for Polycythaemia vera (PV) which is called Besremi which I do not think is in UK but it is effectively the same product so I hope I can also get away with no side effects as you suggested. Can I ask how long you were on it for as you say while you were on it. What are you taking now ? How are you feeling ? Many thanks for the response, really appreciated and I hope you feel well now. Abby
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No problems at all happy to helpā¦
I was on interferon for 18mths and really had no issues with it. Despite the low dose my hct level was sub 0.45 and platelets were 350-400. So everything was well controlled. Yes Iāve read many people abroad taking besremi, I was on Pegsys, but like you say sure they isnāt much difference. There is some uncertainty of the long term effectiveness but thatās expected with it long being out so long or not much patient data as there is for hydroxycarbamide.
I had a random heart attack with no explanation why, I am 110% confident it was due to interferon as I had been doing really well on for 18mths prior. My attack was 3 weeks after my fourth covid vaccine that year but no one medical can explain it. It spooked my Haemotologist in thinking it may be best to move to hydroxycarbamide but as itās a chemotherapy I am really cautious about it. Especially as my family arenāt aware of my diagnosis. I read similar to you that many people on hydroxy have been absolutely fine but I wanted a referral to an mpn specialist to enquire a bit more as to the best treatment for me and my situation. So while waiting for that Iām actually no on any meds at all. Everything level wise is surprisingly normal though my platelets are increasing into the 500s.
I was diagnosed aged 39 in 2020 and turned 41 in dec past.
Still new to the Polycythaemia vera (PV) game but im learning and being on here talking about stuff or helping others makes it all the better.
I think it affects me more mentally than physically at the moment.
Iāve reduced my hours at work just to make going to appointments more convenient without guilt.
Please feel free to askā¦ itās nice to talk Polycythaemia vera (PV) as there arenāt many around to find
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Hi there. Wow I am so sorry you had a heart attack at such a young age! Do you have to have venesections quite often or are you fairly stable at the moment as you say ? You think that the Interferon caused your heart attack ?..
Are you Jak 2 positive ? There are not many of us around and it is hard to try and find the clear answers on things so it is very helpful and reassuring to find you !!
Thank you again
Abby
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Hello @BritinSwitzerland i have just been catching up with your posts - itās good to be able to come here and get some help - I am a MPN patient too for me itās ET and I am not JAk2 positive. I had 13 years on HU as a treatment and once that stopped being effective in treating my counts I was changed over to Peg interferon about 3 years ago. The āusualā transfer of treatment means a low dose start of interferon to see how the patient responds on side effects and a small dose of HU at the same time - I think I had HU in smaller doses alongside interferon for about 4-6 months - interferon is also very slow acting so for most it takes time for the interferon to start having effect on itās own (altho there are some that get quick responses). For me the initial months on interferon were not easy - I was on weekly 45mcg and did have fluey symptoms, sleep disturbance and generally not too well for some days after and as it subsided it was time for the next dose 
As for me it was very slow to effect my counts my dose went up to 90mcg weekly and on that dose I really felt the effects with acute muscle pains - that dose was soon adjusted by my consultant back to 45mcg and it was decided for me never to go higher on dose - for the last year I have been on fortnightly 45mcg which is really good and keeps my platelets reasonable 450-500 so top end of reasonable counts - so for me yes it was a challenge initially, yes I did have to go thro some months of finding the right dose and my body adapting and have now found a more workable routine for it - it still leaves me very tired a couple of days after - and has had a good effect on my counts but not the dramatic good results that many have on it. As others have mentioned it really is such an individual reaction and thereās no foresight to know how it will be without trying - I do know many patients find interferon excellent, very effective, with little side effects which is a real positive - I believe it can also be very effective long term for the JAk2 mutation. Keep us posted what decisions you make and how you get on.
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Hi Gail1, I have only just come across your contribution! I would like to be sure I understand; are you saying you regularly use both hydroxycarbamide and interferon at the same time? This might mean someone who was changing from one to the other could do so very gently and gradually, for example phasing out hydroxycarbamide over a period of 3 or 4 months, starting the interferon from a very low dose.
Another point is that 17 capsules a week is far the highest dose I have ever seen mentioned. Finally, do the doctors say the haemorrhages were caused by the medication? My late wife had several but they were attributed to diabetes`
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I am on both Iinterferon and hydroxycarbamide. Which have been at 11 per week for a year. The interferon is 90 mg each week it started at 45 mg per week no side effects at that dose
The blocked retinal veins in one eye such as diabetics get are a real bore and are worsening in spite of four injections into my eyeball and another due. My haematologist said when I pointed out retinal bleeding was a side effect of Interferon looked into it and said it only occurred when taken in combination with another drug I am not on
After I have injected interferon the following day or the one after my vision is more blurred and I donāt drive then . My platelet levels cycle up and down from 850 to normal and the interferon is to reduce the upper numbers and extend the wave of the cycle in time. . The hydroxycarbamide after a few years was not keeping my platelet numbers low enough and when put up to 17 per week my white cells were going too low. I had a few venesections but was told my iron levels would be too low if I continued and it was just a quick fix
It is all very individual but eyesight apart Iām a fit slim 79 yo. Hope this helps
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Hi I am on Hydrea for one and a half years for P. Vera. Initially I was ok with it but when the dosage was increased from alternate days to 6 doses a week, it played havoc with my system, loss of appetite, completely flattened, couldnāt wake up let alone get up, my hair begun to fall out in clumps. I had to discuss with my Consultant the options. I am now back to 3 tablets per weeks,venesection every 6 weeks or thereabouts depending on the blood levels.
I was too nervous to try another drugā¦I was given that option.
It is interesting to learn that Interferon didnāt produce any side effects in your case and that Interferon isnāt s chemo drug. Hydrea is a chemo drug as far as I am aware.
I had a nasty accident recently had to resort to painkillers, Solphadine! above all drugs, never took them before. Am on warfarin blood thinners so brufen couldnāt be prescribed. Side effects of painkillers wrecked my stomach, I couldnāt even take the hydrea. One very intetesting thing happened when I stopped Hydrea was that upper body rash which was mainly on my shoulders, back of my neck and a cluster on my chest disappeared completely. Before my diagnosis I didnāt have any body rash. It appeared a few months after I started on Hydrea. Am back on 3 hydrea for past week & lo & behold the rash is back again on chest and back of my neck.
Have Clinic next week am almost sick at the thoughts of going there, probably my blood readings will be all over the place.
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@PVMags you certainly are on many treatments for your needs.
Please do let us know how your clinic appointment goes.
Look after yourself
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Thank you so much Erica. Easter Blessings to you and all the team there.
I will update you on how my appointment next week goes.
.
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I am on both Iinterferon and hydroxycarbamide. Which have been at 11 per week for a year. The interferon is 90 mg each week it started at 45 mg per week no side effects at that dose
The blocked retinal veins in one eye such as diabetics get are a real bore and are worsening in spite of four injections into my eyeball and another due. My haematologist said when I pointed out retinal bleeding was a side effect of Interferon looked into it and said it only occurred when taken in combination with another drug I am not on
After I have injected interferon the following day or the one after my vision is more blurred and I donāt drive then . My platelet levels cycle up and down from 850 to normal and the interferon is to reduce the upper numbers and extend the wave of the cycle in time. . The hydroxycarbamide after a few years was not keeping my platelet numbers low enough and when put up to 17 per week my white cells were going too low. I had a few venesections but was told my iron levels would be too low if I continued and it was just a quick fix
It is all very individual but eyesight apart Iām a fit slim 79 yo. Hope this helps
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Things have changed with my medication as of today when my platelet count was still too high at 752 The specialist had taken me off the Interferon injections for the next six weeks. Then to be reviewed after a blood test. I am still taking 11 hydroxycarbamide capsules a week.
She thought the interferon was ceasing to help my blood count and was causing increased blurred vision after injecting for a day or two each week.
Hope this helps for others taking these drugs
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Hi Erica & all of you good & brave peopleā:blush:Got on well thankfully at Clinic last week. My Hct was 0.40 so I was taken off Hydrea altogether 3 Ć 500mg which I had been on presumably on a trial basis for 4 weeks. What a relief. I am a super pessimist! (which one of my brothers called me), he was indeed 
correct as I know I am! on that account, I am expecting readings will be all over the place next timeā:thinking: so just have to wait and see. I do not wish to go back on Hydrea due to side effects of it in my case, but suppose Iāll have to try an alternative drug. Just wish venesectio alone would do the job! so I could avoid an alternative drug altogether. Time will tell so will report back following next appointment. Sure all we can do is hope for the best & take each day as a bonusā:wink:
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Just coming in with an update after a Dec '21 updateā¦
My numbers have come down to 428 with my last appointment last Tuesday 18th April. A relief, as I am now on 9 HC capsules a week. Hoping the next reading in July will take me below 400. I had a bit of an adjustment to taking 2 extra tablets, but just a bit of extra tiredness, which I am feeling less now I have been on this regime for about 5/6 months.
After being rather reclusive, due to Covid, (rightly or wrongly) I have burst out of the Covid bubble but booking a flight to Madrid to be present for our sonās latest Poetry Book launch in Madrid. I got back last night, after 5 days in Madrid. Absolutely worth it!
I was thinking that the bubble would be burst in May when I have to take two paintings to London to be shown in the Society of Botanical Artists Plantae 2023 Exhibition at the Mall Galleries from May 16th to May 20th. After the flight to Madrid, going to London will be much less of a hurdle!
ET in the time of Covidā¦but thankfully, so far, I have not had to cope with Covid!
All the best to you all!
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Wow @Modesigns you have burst out of your Covid bubble, Madrid sounds wonderful and what a moment being at your sonās latest Poetry Book launch.
As for your brilliant achievement of having 2 paintings shown at the Botanical Artists Plantae 2023 exhibition at the Mall Galleries, wow, is all I can say.
Look after yourself and bask in your and your sonās glory.
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Good news to have my platelet levels down to 318 after 18 months of Hydroxycarbamide, 7 per week, and now 9 per week. (from over 800)
Not such good news to have a breast lump, or '17mm new symmetric density with suspicious of cancer features! I have had biopsies, and go to see the Breast Surgery Team on Tuesday to find out more specific information, and to know where I go from here.
Having had Uterine Cancer, then Essential Thrombocythaemia, I was not so keen on another diagnosis, or the possibility of more treatments. But I guess we donāt choose these thingsā¦and the annoying thing is I am looking pretty healthy for 76! Ah wellā¦will know on Tuesday!
Meanwhile I have been enjoying a borrowed veg garden, so finally, after planting it all in the middle of that very hot June, it is finally starting to yield some crops. It will appreciate a week of projected warmer temperatures! The garden, and. painting are keeping me distracted from the ramifications of possible bad news.
Hope everyone else is managing on this crazy Myeloproliferative neoplasms (MPN) journey!
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