MPN Voice
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Feeling Rubbish

Hi sorry to moan, diagnosed with PV JAK2 positive last year and have now been on interferon Alpha Roferon for 5mths. I started out on 3x weekly injections but this was increased to 4times weekly 2months ago. Steadily since then and particularly in the last 2weeks I have felt awful, very fatigued, horrible joint pain particularly in my knees at night which is impacting in my quality of sleep. Just feel my quality of life is reducing compared to 12mths ago, I work almost full time in a demanding job with a family so I have to keep going.

I am thinking this could be medication related and since increasing my dose my body only gets one day in between before the next injection is due. Back at hospital on Friday so thinking about asking to change to pegasys. Apparently needed to try Roferon first.

Sorry to moan, has anybody any experience of changing to pegasys and have you felt better. Very keen to stay on Interferon as still quite young in PV terms and want all options open for the future.

Any advice would be gratefully appreciated

Jen

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Hi Jen, so sorry to hear of the horrible fatigue and pain. I have PV and osteoarthritis so I sympathise. I don’t know anything about the meds so can’t advise there but you need to get something for the pain if you have to continue putting up with it. If you continue in consistent pain it becomes a cycle which is difficult to break: pain, lack of sleep, exhaustion, less able to cope, pain increases (or seems to) and so on.

Sending you E hugs which I know don’t cure your symptoms but hope that you will know I’m thinking about you. Kindest regards Aime xx😺😺

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Thank you Aime really kind words, some days are better than others and on good days I feel can continue on the interferon and put up with the more milder side effects as it is working really well on my blood counts.

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Hi

is is pretty well known that Pegasys has less side effects than normal INF so maybe worth trying next. Good Luck

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I can’t comment on switching as I was fortunate to be able to start on Pegasys straight away for my ET.

It has worked very well for me with negligible side effects, so I suggest you push to switch to it if you can.

Control of blood counts should be just as good with Pegasys and side effects for most people are significantly less.

Good luck.

Andy

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Hi all. All good wishes to all of you. I am on Hydroxychloramide and I have all the symptoms you are all mentioning and more. In fact, I had a lot of them prior due to the ET and JAK2 mutation but I now have more joint paint and am presently losing the use of my hands. From being a healthy and fit (apart from the occasional TIA and silent migraines) . My right knee is so painful that I now have a limp. My thumbs are extremely painful when I get up at night and in the morning, I stand and walk like a disabled old lady. I need to slowly make myself stand as straight as ossible before I can walk without being bent over.

After 3 weeks of the drug I have had no change in my platelet count, in fact it has increased slightly. For some reason my doctor is not seeing me again for 6 weeks and that was only when I gave him a disbelieving look when he initially said 12. I have other symptom and constantly feel unwell. Doctor says he's happy that I am ok on hydroxy. Tingling hands and intermittent numbness with white or blue shades. Very colourful. I am on 500m only. This is so obviously due to the drug. I have read that Pegasys has been known to correct the JAK 2 gene. Is this correct and if so, why on earth was I not offered it as a first approach? Any ideas? I am 66 but only on paper!!! Location, NW England.

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I’m not sure there is any evidence that any of the drugs halt progression of the disease let alone reverse the disease. As far as I understand halting progression is the next big goal. And one day maybe 🤞🏻there will be a ‘cure’. Perhaps others have more insights.

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Thank you. I read about it reversing the effect of JAK2 somewhere on here, I thought. I still feel I should be on something other than this. Fed up of being like this but can't break the barrier my doctor puts up to me having any discussion at all. Maybe I should relocate.......... I would if it wasn't for my determination to carry on working.

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I always think that a big part of successfully managing any chronic illness is having a clinician in whom you not only have faith but also someone with whom you can have a dialogue. Feeling that you are not only being listened to but being heard is just so important. It does seem less than good practice that drug options have not been discussed with you. My own experience of starting Hydroxy (at Guy’s) was a follow up call with the CNS in week one, a follow up visit for bloods etc in week two, a clinic appointment in week four and another one (on the basis everything was going well and counts were dropping) about five weeks later. My counts have now plateaued so I have been told to up the Hydroxy and will go back to clinic in six weeks. (I have PV).

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Well that just shows that my suspicions were correct. I had my second appointment 6 weeks after the first, after being put on hydroxy, which to me seemed far too long for a person who is intolerant of most drugs and there are so many 'symptoms' that come with it. That was my second when he was suggesting 12 weeks.

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I reckon that's correct. I found the article I read and it only hinted at it could 'maybe even prevent'.... So that must have been me clutching at straws.

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Hello,

I visited a mpn specialist last week at cleveland clinic. He told me that there are no drugs that stop progression of any of the mpn's. He said that interferon has been shown to lower the allele burden in jak+ individuals but that lowering the allele burden has not yet been shown that it makes any difference in the course of the disease.

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Thank you for taking the time to reply sorry you are not feeling great too. Pegasys was never a first line option for me until I had tried the Roferon Interferon. Interferon was offered to me due to me being in my early forties, instead of Hydroxy. I thought I was doing ok on Roferon but with dose increases and time think it's time for a change. Please speak to the hospital or a specialist nurse if you have one, can't praise mine enough. All the best x

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Thank you. I will do that. She is really nice and supportive but it seems she can't get through the crust either. x

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I was 'pleased' to read your post as I to am pretty sure that all my aches and pains are due to taking hydroxy. I was diagnosed last year and had no symptoms apart from aches and pains due I believe to getting older. 74 next month and that is also only on paper. I was at that time still working part time. I am on 2 and then 3 caps. alternate days of HU. Unlike you I have had no TIA's. I also take aspirin and allopurinol ....no desire to get gout as well! I struggle to get moving in the morning .

My bottom line is quality of life with that in mind I have kept a print out of my blood results and can see the pattern over the last 12 months. I am lucky that my consultant lets me email him about my concerns. I would suggest that you could try do the same listing all your concerns. You would then also have a record of the concerns you have voiced to him and his reply. Good luck keep asking questions.

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Thank you for your reply and suggestion. I have my specialist nurse's email but not the consultants. I will give it a try.

All the best. P

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Not long to your next visit. Let’s hope the hospital can make things easier for you xxxxx

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Thank you for the positivity. I'm finding I need this input more and more. x

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Lol, now I need positivity,

4 hours in clinic, anaemic, totally fatigued, increased platelets.

I’ve had enough!!!

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I only have experience of Pegasys. I tolerate my low dose well. Definitely push for change. You will never know unless you try. Your haemo should be interested in improving your quality of life. Keep us updated on how you get on. All the best. Eleanor

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Spoke to my nurse specialist yesterday and told her I have stopped taking the hydroxy. I couldn't take any more. She's arranging that I have an appointment when I return from France. Over the 4 days since I took my last dose I am loving feeling myself return. The depression, anxiety and frown that went alongside all the pain and breathlessness, not to mention the crippling bone pains and loss of use of my hands, swollen ankles and general disability I have suffered are abating rapidly and although my thumbs have not yet returned to normal, I can smile and I have my sense of humour back. I really doubt that I will be allowed to go on to Pagasys my doctor seems determined that I should be on hydroxy. I wonder if he has any idea how it feels when your body is rejecting the drug.

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I too am seriously thinking about with drawing meds and now I’m being offered an alternative to hydrox. I don’t have pain but breathlessness and low Hb are getting to me. I ‘m going to keep going until I’ve come back from a family holiday in October.

I’ve already seen GP and have requested to see a palliative care counsellor.

I’m just exploring, no decision yet.

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Just to continue this following my return from France. Felt fine whilst there. as soon as I'm back, the blood pressure is sky high and I wouldn't be surprised if my platelet count has gone up. However, no contact from my specialist nurse nor an appointment to see the haeme prior to the arranged 6 week one on June 13th. I so do not want to see him. He makes me feel worse. I take all my time tying not to be depressed about this and see him and I'm on the deck again in the 4 minutes he allows me!

You are worrying me suggesting you will need palliative care if you come off the hydroxy.

Do you reckon this will make him offer an alternative? Still don't want to see him. I need to find one with some genuine consideration for me as a human rather than another person he can shovel chemicals into! Please let me know how you get on and what you're offered. I would have thought I should have been offered Pegasys but he probably gets a better cut for having us on hydroxy! Did I just say that?

ATB Penelope

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Hi Jen,

sorry to hear about your interferon problems.

I have been on Roferon, viraferon and am now on Pegasys for my Calr+ve ET!

Interferon side effects are not constant please see this graphic

slideplayer.com/slide/88895...

I went through the same drug initiation side effects for each brand.

The sleep problem could be the interferon it directly affects sleep quality.

If your bloods are normal speak to your haem about reducing the dose of interferon.

If your bloods are high speak to your haem about trying a different anti platelet drug or drug combination.

Try light yoga/stretching or masssage. The interferon and the disease itself will inhibit blood flow.

Look to your diet for inflammatory and anti inflammatory foods making sure your weight is within a good range.

I hope this helps and wish you luck

Jawas

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Thank you for your advice, the sleeping issue is being disturbed due to joint pain (knee). At the start of treatment this was there intermittently and only after injection but I believe since dose has been increased I take an injection every other day my body has no time before another one is given. Maybe I am wrong. That's why I thought pegasys being slower release given less often might help. The fatigue is definitely worsening and maybe the joint pain is all interlinked. How long have you been on pegasys and what initial side effects did you get? Don't want to bailout to quick but my quality of life is not great at present. Thank you for taking the time to reply.

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Hi Jen

Sorry to take so long to reply. I have been having problems with aspirin poisoning.

I had an overlap issue can't remember which interferon though.

Joint pain might be an interferon side effect.

I have been on:

Roferon six months

Viraferon 90mcg six months

Viraferon 50mcg 1 year

Pegasys for over a year first 90mcg weekly then 45 mfg twice weekly.

The side effects at the start were similar for each brand. So it seems reasonable to suggest that you would experience similar side effects as when you started non pegylated interferon.

Good luck

Jawas

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Interesting. I am unable to take aspirin due to severe side effects, which is why I take clopidogrel. Not come across anyone else with such severe effects from aspirin. I felt as though I was having my skin taking off from the inside of all my organs and other more gross symptoms.

P

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Yep me too with the aspirin problem. Very leaky blood vessels giving me lots of pain. I am sensitive to aspirin for asthma. Apparently there are several types of sensitivity.

When I started and eventually stopped it felt like having acid flowing through me.

All the best

Jawas

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