Morning everyone . Having to decide between Peg or Anagrelide for my next consultation in October at Haemotology. Also my history has been discussed with Dr Claire Harrison at Guys .
The decision is mine . I reacted badly to Hydroxy & taken off it .
I appreciate we are all different but now off everything I am feeling healthy no aches of limbs . Delay in next treatment due to having had Covid recently & told we need to delay treatment.
I am 67 weigh 60kgs fit. Cycle swim sail & walk often. The side effects of depression , palpitations & muscle pain etc listed for drugs are troubling as Hydroxy left me lifeless & ill . It has taken 3 months to recover from it.
Is anyone happy on the Peg .
Many Thanks. Julia Exeter UK .
I am ET Jak2 positive discovered March 22 following sports injury.
Platelets currently 520 went to 400 on Hydroxy. However consultant told me Covid would have caused platelets increase .
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I am also HU-intolerant though my side effects were different that yours. My experience has been that PEG is much easier to tolerate and far more effective than HU. I switched to Besremi to treat the PV when it became available.
My only regret is that I waited as long as i did to try the IFNs. My quality of life is much better with this treatment plan.
Note that we are all different in how we respond to these meds. The only way to find out how you will respond is to try. Most start on 45mcg/week on PEG which you may find quite easy to tolerate. Do note that PEG takes longer to take effect than some of the other meds. My experience is that it is worth the wait.
Here are the PEG guidelines from the NHS if you are interested.
Brilliant thanks so much hunter I will try peg as I have to get through side effects . They cannot be worse than I had on HU. I will read the link . My Haemotology is good at Exeter & emails Professor Harrison for confirmation re my problem with HU. Gastric, weight loss, low energy felt horrendous on it . Thanks again for swift response. Julia 👍
It seems your main problem is possibly mildly elevated PLT, is that right? Has Dr Harrison or other Dr discussed implications of your PLT levels? In a thread from Hunter today, there is a report that it's ok to leave reasonably elevated PLT alone vs the risks of treatments for it. Esp in your case you feel ok without treatment.
But PEG could be worth such a trade off for the possibility of preventing or even reversing disease progression. INF has this potential. But it is usually taken with the goal of normalizing blood counts. If yours are already at or real near normal, Dr would need a different way to set your dose.
Thanks I understand a bit better now. I will speak to the Exeter hospital haemotology at October appointment. He is running things through Claire Harrison for final decision. However as I feel fit & well with no health issues I did query why I need anything other than aspirin. The age & risks re clots strokes etc always comes up. My health records show platelets rose slowly from 2016 which coincided with a sailing accident & torn muscles.
However until another sports injury & me pressing to check bloods as injury not healing ,my then higher platelets of 590 would not have been examined further ,due to my fitness levels & health & no symptoms. My local GPS were reluctant to test anything as no health issues.
I do wonder at what point a Dr would have ever contacted me as apart from this cut off of Over 60 🙈 issue I felt well & still do. I was also 7 yrs past the 60 cut off !!!
The medication was the killer to my fitness & now off it I feel fit & fine.
I would like to leave it on aspirin only & wait & see if platelets rise quick but not sure Medics agree with that idea .
Maybe I think too much , but I had a massive haemotoma in muscle after coming of my mountain bike in lockdown time . Really bad swelling & internal bruising which took an age to reduce . I felt that could have been the start of these raised platelet levels . However at that time no bloods were ever checked .
Like all of us today the more knowledge we read on this subject the more we question our treatments until we get very Ill.
Thnx for input EPguy 👍 I have been left till October for decision.
Making it 5 months since any drug apart from aspirin due to horrendous issues I had on HU.
I am 71 and healthy and fit, et Jak 2 positive. I was very reluctant to start any medication at all but when my platelets reached 1 million I went on a very low-dose of HU which worked for me for over two years. After two years I started to become very tired and nauseous. I recently stopped HU and after two weeks of no drugs went on Pegasys and had my first shot last night. I choose to go on an extremely low-dose so that I wouldn’t have to feel awful, and today I swam for an hour and a half and feel great. I keep choosing very low doses and I’m fine if it takes my platelets a while to go down. I started on Pegasys because of the hope of remission. Of course all of this is a personal decision because you know your own body and how you feel. I wish you the very very best.
Thanks so much. Like you I am reluctant as HU made me so Ill & zombie like. I am fit and like yourself eat healthy & lots of excercise. If not diagnosed by sport injury sailing I would have no symptoms to send me to a doctor. I will certainly get a 2nd opinion when they see me again in October . I am on aspirin alone at present . Please keep me posted in future of your body’s response to Peg. I will follow you on this excellent Forum page . Good luck too.👍. Julia . Exeter Devon UK .
I agree EPguy. I was first diagnosed at 823! At 758, my doc still hadn’t sent mr to the ühemotology. I had already had light TIAs though. I was 53. Others have 1000 platelets no TIAs and only take aspirin. We’re all different.
Make sure you have an MPN specialist to get detailed treatment. The difference is huge for me.
Have you had a bone marrow biopsy to figure out what you have? That’s important to know exactly what’s joining on.
Your mildly elevated PLT count is good news because that means only a low, 45 mcg weekly or biweekly dose of Pegasys is likely going to be needed that has minimal initial side effects and possibly no side effects after you've been on it awhile.
Thanks Monarch maybe I worrying unduly but the horrendous HU effects left me very Ill . Massive weight loss exhaustion & muscular pains. I looked & felt horrendous. All due to that drug totally as my body hated it & once off it & out of my system I am normal & healthy. I could not bear to become a zombie again to a drug as unfortunately my body has never responded to anything past paracetamol. Let’s hope 👌. Thanks Julia .
I started on 45mcg of PEG at the beginning of the year - have just done my 33rd injection. No side effects so far and I’m convinced that the fatigue I experienced in 2021 was due to HU and not ET: I had no fatigue prior to starting HU and have had none since stopping! Good luck with your decision.
Thanks that’s good news . Yes my exhaustion & severe health reaction was horrendous on HU. Took a while to convince Drs I was taking myself off it after 6 kgs weight loss & legs that didn’t work . Off it I am back to normal fitness cycle sailing & hiking no issues whatsoever. However it concerns me that sometimes someone will be persevering with these bad side effects convinced it is the ET causing it .
In my case I was told as over 60 I must be on it . Fortunately I read lots & queried it. It’s just sad we don’t have more drug options for this complaint. I really don’t ever want to feel so Ill again . 👍 Julia
Yes, and sometimes it’s the doctors themselves who are convinced it’s the ET, not the drugs, causing it. Although PEG is less convenient to administer (I’ve just been on holiday, and I was a little anxious that my cooler’s digital thermometer said 6 degrees by the time of my arrival, when it’s supposed to be stored at between 2-5), I’m so relieved the fatigue hasn’t returned. I just couldn’t function for days on end. As we all repeat on this forum, no-one knows your body better than you, so I hope you can push for the best available treatment. As others have also noted, there’s never been a ‘better’ time to get an MPN, and our treatment options WILL increase - sooner rather than later. I’m enquiring about Bomedemstat, although my haem (probably quite rightly) doesn’t want me to chop and change treatments too frequently!
Thnx I will push for it. Before ET diagnosis I travelled frequently but been on hold now. I back to fitness & read about these travel fridges . I am sure the injection will never be as bad as the terrible HU on me . Will keep you posted. Cannot start till October as had Covid so apparently they told me has to get out of my system . 👍. Julia Exeter Devon .
Trips are worth thinking about. I wonde if Anagrelide could be substituted for interferon if I’m out of the country for a month. But I also read that there’s a interferon form as powder that needs to be mixed before injection.
The powder version was PegIntron. It is no longer made, and regular PEG is better at holding even drug levels. PegIntron was dosed according to weight, while modern pegs are not, I think it had something to do with Intron's limitations.
HU is a cytostatic drug. A real chemo. It makes changes to all blood cells not just thrombos. You’re not even supposed to touch the capsules with bare hands.
Hi I started on Peg aged 66- Et Calr. I was on anagrelide and Hydroxicarbomide.I’d jump at Peg. It’s given me my life back. I had to ask for it. I have a needle phobia but the jab is tiny. I put an ice pack on first to numb the area.
That’s so brilliant. I honestly felt I was an abnormal moaning patient when on the HU. I couldn’t believe anyone could accept feeling so Ill but I read the Health Unlocked pages & people were coping with HU. I felt it was the end of my life & ET was doing it rather than drug. So I persevered getting worse & weaker each week . Contacted Haemotology but made to feel side effects would pass . Persevered 6 weeks, lost 6kgs mainly sat on loo 🙈. Legs that felt like lead & my skin normally healthy ashen & grey with massive black rings under eyes.
I took myself off it. After speaking to Haematology again. Taken 3 months to get back to normal. Now fit healthy back doing my sport & shocked how bad I was on it.
I could never stay on something that makes me so awful. Hopefully I will try Peg from October as being left to recover. Interestingly that drug wrecked my gastric tract. Had to have medication to settle the soreness of eating . Prior to it I was fit healthy & loving life !!! Only issue was discovering I had ET after sports injury & being told as I was over 60 I had to go on HU .
Thankfully I realised it was the drug not my health 👍. Julia . Exeter .Many Thanks .
I can’t comment on Anagrelide but have been on Pegasys for 7 years with great results and no significant side effects. I was 59 when I started on it due to rapidly rising platelet counts and it brought them under control quickly. I now just take a small maintenance dose every 4 weeks, which is very easy and I prefer it to taking more frequent medication.
Wow Andy that sounds brilliant I will try it from October. The Hydroxy made me so bad . Feel great now it’s out my system . Thnx for info. Julia Exeter 👍
I have been on peg for 5 years now, although I had a few issues to start with, I am now tolerating it well, with no side effects, I am on quite a low dose. I was on HU to start with, but had side effects after a few years, the same happened with anagrelide, but we’re all different. I have ET, MPL since 2009 & I am the same age as you.
I switched from HU to interferon, after a year the side effects at 135mcg were just too much depression, weight loss, zero appetite, constant diarrhea, blurry vision and light sensitivity. I came off it and apart from aspirin didn't take anything for 6 weeks felt great apart from the fatigue. . Back on HU I have bone and joint pain, sore feet numbness in hands and feet didn't have this on interferon. Interferon didn't reduce my platelets count either.
Interesting on the light sensitivity. I had that to extreme when I started Besremi. But it was a one off and that issue went away. And as I posted a while ago, my vision has signif improved on Bes. I can't figure it, so many different responses we see.
I am happy on peg. Been on it for a year and 5 months. It can take a while to get figures under control as in my case, but for some it can be quick. I started on 45mcg to get body used to it and increased to 65. Make sure you drink lots of water. Instructions recommend taking injection before bed with a paracetamol but the nurse showed me how to do my injection in the morning and I didn’t have any side-effects so that’s what I have always done and it gives me plenty of time to drink water. Just thought I would mention that in case it helps at some point. Good luck and let us know how you get on
Hi Julia, I am PVJak2 and was diagnosed 18 years ago from a random blood test. Like you I'm very fit and active and have high platelets but mine tend to hover around 1000. I tried HU for 2 months but refused to remain on it because of the risks of being in the sun and skin cancer which runs in my family. I was on aspirin for this entire time until I turned 60 (61 now) and my hematologist said I needed to be on something so I tried PEG 45 dose and my ALT liver enzymes shot through the roof. Had to go off of it for 2 months. Then was put on a 22.5 dose which is hardly any drug at all and I had slight depression, terrible brain fog and felt like a zombie. Quality of life was not good. My body is extremely sensitive to any drug. My MPN specialist out of Mayo suggested I go off the PEG because it was hardly lowering my counts on the very low dose and take 2 aspirin a day which I've been doing for the last year. I've never felt better. I might add though that I've had very few symptoms from PV for all these years and have no other health concerns. The daily exercising, lowering stress and healthy eating have been the key for me. I'll get my results from my BMB tomorrow which will be interesting in terms of if there is any progression. You really need a 2nd opinion regarding if you really need to be on anything besides aspirin as your platelets are not that high. We are not all cut of the same cookie cutter.............make sure you are treated as an individual with unique qualities and always always advocate for yourself. Good luck...Kerry
Kerry thanks that is such great information. I feel great off the HU & just on aspirin & cannot understand any insistence that I need to be on any drug. My body like yours reacts to anything . I am fit eat practically vegetarian plus fish no dairy etc . If no symptoms I don’t want my life wrecked on this awful stuff if my platelets are not through the roof & I am not breathless etcI feel the insistance is because our NHS have to cover themselves incase we had a stroke etc & not given us preventative medical treatment. I will hold off in Octobers consultation & question them further when I get next blood count. Glad I am not alone with drug sensitivity as take nothing all my life . I keep you posted Thanks Again Julia . Exeter UK .
Hi Julia, Just got excellent news today regarding my BMB results! After 20 years of not being on any long-term drug my marrow shows zero disease progression, and no fibrosis! I'm still awaiting the NGS genetic testing. My platelets have always hovered around 1000 and I'm still on a regimen of 2 low dose aspirin a day. The main reason for the BMB, was because my HCT's were not climbing like they used to. The culprit was zero iron stores. I started taking low dose iron pills every 2 days starting July 28th which activated my bone marrow to start making blood again. I will closely monitor how much iron to take so it's the right balance. It would be in your best interest to find a MPN specialist who isn't driven by the fear of litigation, looks at you as an individual and doesn't feel like drugs are the only treatment. My MPN specialist at the Mayo clinic had to write my hematologist a letter stating it was okay to have a 61 year old women not on medication! Its all about liability. My MPN doctor does not believe in looking just at chronological age but instead looks at overall health, risk factors for clotting/stroke and fitness. I truly believe that exercising and eating healthy are vital to managing PV and related symptoms. Stick to your guns on what you think is right for you. Best of wishes....stay in touch. Kerry
Wow that’s fascinating Kerry gives me some hope then . I will definitely not be rushing into drugs again & if platelets don’t rise stupidly will fight to stick on my aspirin only . So pleased for you. Julia . UK 👍
The MCH being high is a sign of not having enough B12 or folic acid in the body. Mine is low which tells me I'm anemic. Best wishes! Stay in touch Kerry
MCH can increase from taking HU. This plot shows mine on HU. MCH was normal at Dx when my PLT was way high.
Right at the start of the downhill in this plot was when I switched to Besremi. So it can take a while to normalize, but you should see a decline if HU was the cause.
The ones that go high on HU my Dr puts in the category of not important, at least for me.
Thnx . I was on the HU for 6 weeks but it wrecked my health & weight. Taken 3 months to feel ok again . Then Covid . I believe Covid can raise platelets too. So waiting game at present. Possibly Peg in October. Would love to manage on just aspirin but guess platelets rising & 68 won’t let that happen . Julia. . Devon UK 👍
I am still dealing with peripheral neuropathy after being on Hydroxyurea. I have only been on aspirin since ditching the hydroxy just over 5 months ago.
In Australia I am considered an intermediate risk level due to my age of 61. As I have no history of thrombosis, am not JAK2 mutated and have no other cardiovascular risk factors my haematologist isn't pursuing other treatments at this stage. My last platelet count was 649.
After 7 months on Hydroxyurea they only reduced to 567 anyway.
If I was in your situation I'd opt for interferon as it possibly has a disease modifying effect.
With your platelet count relatively low hopefully the lowest dose of IFN will be enough.
Many thanks Phantasia . Yes the Hydroxy really messed up my healthy body especially digestive tract. I am with you on the injection as need something to stop progression . I am happy to stay on aspirin but will wait & see next blood results . Hopefully you will be ok . My relatives are in Sydney & like all of us have never heard of Essential Thrombocythaemia 🙈. Good luck . Julia . Exeter UK 👍
Hi Exeter. Im I. The same situation. I’ve been on Anagrelide for almost 5 years. It causes heart palpitations for me. Since the Pfizer vaccine, my heart and veins have even more serious problems. I tried HU 2 years ago, but stopped after 2 days on my own. I had neuro symptoms. Couldn’t coordinate my movements or remember anything.
I found another MPN specialist in Austria 70km fromme home. There are only 5 in Austria. I was looking for lawyers as both HU and Interferon were both crossed out by other doctors. She told me I could do Interferon without thinking twice, although I have Hashimoto; that Interferon works better. Important point is that Ive gotten rid of all my allergies and other immune problems. Ive reduced my Hashimoto by half in 5 years. All her Hashimoto patients are successfully on Interferon. We would need very careful control. She seems more competent than the other 9 doctors that kept being rotated at the other hospitals. We even discussed a plan of action regarding heart and general health for the next 4 months! I am thinking of making the change in October, but the list of side effects seem worse than Anagrelide.
You don’t have aas much a problem as I do. My thrombos were at 750 while taking 4 Anagrelides a day. I couldn’t do more else my heart was constantly pumping hard. 5 caused lethargy. In Mai I got cavitations (not cavities) cleaned at s biological dentist and since then, my thrombos are down. I’m now on 3 Anagrelides. I feel Much better.
One thought I have is, when do I do my detox and will my supplements cause problems if I change. Anagrelid has a 1/2 life of 1.3 hours. Thats easy to calculate and deal with. Interferon stays in the body I guess the whole week. I’d be able to give myself the shot in my belly.
I think I will give Interferon a try. I can always return to Anagrelide, if the side effects are worse.
I had Covid in June and my thrombocytes plummeted. The doctors at the hospital in Vienna said Covid does that to many patients.
Thanks . Yes HU caused horrendous palpitations on me hot sweats & exhaustion as well as weight loss due to loose bowels constantly. Off it I am normal . Anagrelide is supposed to be the same content but different manufacturers. If I have to go back on anything I will I feel try the Peg. However I would prefer to stay on just aspirin but platelets would still increase so not a long term option Julia . UK 👍
Am on anagrelide. Switched to HU about 2 years ago afyer 14 years on anagrelide......HU didn't work for me....awful side effects..had a TIA also, back on anagrelide now and feeling much better.
Thanks yes HU was horrendous for me . Did they not offer you Pegasus Interferon after these drugs . So many side effects for all of them it seems hoping I get lucky . Julia UK . 👍
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Is peg interferon always slow to reduce platelet count? 
increased Peg interferon
Peg, interferon
Hydroxy or Interferon for ET Jak2?
Started Interferon
