Thought I would share this useful information . Having been treated by my local Haemotology Department since early this year upon my ET Jak2 positive diagnosis I have done lots of reading on this valuable website we have. ET was discovered from my sports injury NOT any symptoms.
Hydroxy did not suit my body & I became very Ill on it . I then requested Peg Interferon & after a bit of a battle was prescribed it. The haemotologist I saw not my usual one prescribed 90 weekly but I queried it stating 45 was starting dose.
She was annoyed at my comment & checked on the phone with hospital pharmacy who agreed with my comment. I came home with the prescription injections with no instructions of administration & read up on this site how to do it.
Unfortunately after 4 injections the migraines were unbearable.
I fortunately had contacted Professor Harrison at Guys hospital for telephone advice. So happy I did. What a wonderful informative lady. I am now off all medication until headaches calm . My injection should have been low dose with bigger date margins between due to my slight build & weight. She will now supervise me . My point is that it is important to contact an MPN specialist if you are not happy . I have gone from a normal fit person to an Ill one totally on the effects of medication & not the disease. Reducing platelet levels was the only target of Haemotology despite my levels low. Because I was over 60 it became an overnight transformation . If 59 they would have left me on aspirin. The moral is don’t sit at home feeling Ill.
MPN experts are worldwide & they will email you or telephone you. They are the ones that specialised in this subject & I am so glad I contacted one , despite it will probably have a backlash that Haemotology will be annoyed I went for a second opinion . It felt good to have a conversation with this Excellent Professor . Don’t just suffer . Also want to say what a great site this is for information as without it I would not have known of my MPN expert .
Good luck on our journeys Julia UK 👍
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Exeter21
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Hi so pleased for you that you were able to speak to Professor Harrison. Fantastic news you have a new way forward and are now in safe hands. Best wishes Claire
thanks She was so lovely & easy to chat with and so glad I made the contact . Unfortunately my sensitive body is kicking against everything but I feel from her knowledge that it’s no problem & it’s not all about our platelet numbers but more a quality of life on a correct bearable drug & dose. Very knowledgeable lady .
That is great news for you and excellent advice about the importance of having a MPN Specialist on your care team. Note that competent ethical providers never mind a patient getting a second opinion. In fact, they encourage it and welcome consultation from a colleague with greater expertise. Good doctors will always put your health before their ego.
Thanks Hunter I feel happier now I have spoken with Professor Harrison & not a failure as to how my body was reacting to the drugs . Hopefully we will get dose correct eventually . Julia . UK .
I agree, such a difference speaking with an MPN Specialist. I had to pay privately despite being an NHS patient but will address this when I have the mind and energy to tackle it.
It is so worth it and necessary to have that specialist input but sadly a high proportion of haematologists take it very personally when this subject is broached.
I hope you start to feel better and fantastic you are now under specialist care
Thanks so much. I felt like a naughty schoolchild when I chased up the MPN specialist & I could tell it was not what Haemotology like their patients to do which is so wrong . I keep you posted but feel much happier & less pressured on the drugs that my body rejected . Julia 👍
PS I have been on my HRT patches years & MPN specialist has no problem with it with our complaint. It kept Margaret Thatcher full of energy till she died so hopefully be ok for us 🤗
this is great to hear! Everyone reluctant to put me in hrt but from what u have researched and read I can go on bio identical hrt which includes patches! Sounds like you have a great specialist!
Ha William you will never need it . They give it us females during menopausal symptoms to help hot flushes & palpitations. It’s a patch or tablet Hormone 👍. Luckily you won’t need it . Julia 😂
It is a significant breach of medical ethics for a doctor to put their ego ahead of your health. Ethical competent doctors encourage a second opinion and value consultation with a more knowledgeable colleague. My regular hematologist welcomes input from the MPN Specialist. He is a fantastic doctor! I value the car he provides.
Yes it does matter. It makes sense if you think of the Peg injection I was doing that if I were a male of 100 kgs plus compared to my 60kgs our body mass is greatly different. I am pretty sure I read online somewhere that the drugs issued were based on weight. Hence when I lost 7 kgs during taking Hydroxy over 6 weeks I immediately thought the amount I received ie. 500 mg tablet & 5 per week was far too strong for my body to tolerate. I rang Haemotology & told them I was stopping taking it which they agreed with. Since reacting badly on 3rd & 4th doses of Peg with permanent migraines & giddiness it appears it will now be reduced even lower & longer gaps between doses to see if body copes. If you are light in weight & get side effects it’s worth exploring lower dose & space out. Or ask to speak to MPN . I am glad I have. Julia .👍
I agree that weight should matter for most meds. But this is actually big new info, the official Rx labels do not account for weight. It was part of the Rx for the old PegIntron, maybe you saw this info? But for PEG and Bes there is no weight guidance I've seen. So Dr Harrison is providing a new type of guidance, I assume based on her actual experience. If there is any published info on the subject it would be quite valuable for us members to discuss with Drs.
I do have an MPN specialist I see regularly, he's with the conventional weight-independent dosing concept.
We do see huge variations in dose needs among us for both HU and IFN, but up to now I've not been aware of a weight connection, ie are our heaviest members tending to the larger doses?
I will let you know during my consultation with her in future during my treatment. Certainly she felt my 45 dose of Peg currently was too strong for me hence the awful migraines that I never suffered before this . Hopefully an even lower dose will be tolerable . I keep you informed but currently off everything but aspirin for at least 6 weeks to recover 👍Julia
I have had hair loss even on first few doses but think my sensitivity just goes into shock whatever it takes. Currently off it for a month & hair spookily not coming out. I have been told low & slowly with Peg . Julia 👍
yes I did but the horrendous migraines then started. She will supervise it now & will put me on very low dose this time in a hope body adjusts. Been allergic to all medicines all my life & body kicks off really annoying. Causes palpitations rashes headaches or sitting on loo🙈. I will get there as want to stick with Peg 👌
only 4 my first 2 I had blinding headaches 2 days after but felt as though a haze over eyes & balance went. 3 rd & 4 th horrendous headaches wouldn’t stop fortunately spoke to Proff Harrison who taken me straight off it . She will leave me a month then try Peg again on very low dose. Unfortunately it’s my response to any medication since childhood . Anything unnatural creates a reaction. My platelets 560 with no symptoms . I had flown to Jersey between 3 & 4 injections & giddiness & head pain was horrendous. However hopefully it is working it’s way out this week & I hope eventually it will work . 👍
will do they start me again on Peg January but I go Haemotology before then for blood checks so I guess they will be annoyed I have gone to MPN as I already got that impression last time I mention it that was not necessary 😂 👍
Hi did you email Professor Claire Harrison direct? I tried emailing her secretary and was told get a referral through GP or Haematologist of which neither would because my platelets were controlled but my symptoms weren’t and didn’t seem to understand! 🙈
I did same as you initially & her secretary asked me to send a Drs letter. Went to my Dr & got same problem couldn’t understand why I needed to hear from MPN . 🙈
I got really insistent & said I needed the letter to ask her if she would speak to me re options of medication & long term treatment of MPN. Told them she was expert & then asked Dr what he knew about the subject & options. He admitted he had not heard of ET. So sent my letter. She in turn replied with a phone call option that was sent online to my email address . It’s your right to have expert advice. My platelets were low but wanted proper opinion. Haemotology is good but mine were processed on Hydroxy & no other options discussed. I had to read up on other treatments as felt awful on HU . She is the expert on our complaints . Just persist . You still get treated by Haemotology but at least she oversees your progress & listens if you want something different . Julia 👍
I emailed her secretary got told to get Dr referral letter sent . It’s just to cover the fact you have an MPN & would like advice re treatment. The Dr should do it but I find they struggle to accept we are allowed an expert opinion as they think Haemotology & lowering platelets is all that is required 🙈 Julia .
hi I too would be interested to hear how you managed to contact Prof Harrison. I’m managing well on peg no side effects but it appears my body isn’t. I’m now pre diabetic, I live a very healthy active life style my haematologist agrees it’s drug related. Too late I suppose I have been taking the drug 90 weekly for 6 months even my Liver has abnormalities with regular blood tests but it wasn’t until I went to my Dr because I’m losing my hair that this was picked up. I spoke yesterday for the first time to him since July and it’s been reduced to bi weekly but still same dosage. I think I need advice from an expert. So worried now.
I’m certain it’s the drug it’s too coincidental. Just wish it could be confirmed. I’ve got to go on a course …. finding what I can and can’t eat a bit of a minefield !!
yes try & get MPN phone call . I am literally on nothing with sugar. Use honey to sweeten things . Dropped caffeine, alcohol as lots sugars in it. Eat chicken fish lots vegetables nuts etc . Read anti inflammatory diets online as it really helps with aches & blood sugars etc . It’s amazing how quick your weight decreases just by eating the healthy foods we were bought up on before Junk Food quick foods invaded our World . Julia 👍
thanks for advice it’s all still a bit of a shock. Last thing I expected to hear is a further complication. Can you eat wholemeal bread, pasta and brown rice? I’ve read two different opinions.
Yes get your Dr to send email to her secretary as you wish to discuss your treatment . You are entitled to discuss it with MPN & there should not be a barrier to reach her. Just explain to your Dr you want another opinion on treatments . She books telephone calls. The Dr has her address & all other MPN specialists on their computer . I guess the Drs want a reason to write on your behalf due to everything so rammed up in our NHS system . I took me 2 months to get a call 👍
I am also prediabetic and not overweight and I take plenty of exercise. Haematologist told me a couple of weeks ago that even though I've made changes due to being on the NHS prediabetes programme for several months, I'm still at the same level! It's obviously due to Peg.I exercise regularly and I've lost weight even though I didn't need to! The group leaders on the NHS programme can't get a grip on the fact it's due to the medication. Not their fault as they are mainly dealing with obese people who don't exercise. Haemo is now telling me I mustn't lose anymore weight otherwise she'll get worried! What to do?
definitely time to speak to MPN expert re this as on my journey the only Dr who knew anything of ET was a young medical student who did my MRI scan who had wrote about it at University. Haemotology are good but some working there have to deal with everything & we are a minority disease 👍
you sound just like me. It’s all such a minefield and causing added stress . Which drug do you take and how often as I now think I’ve been on too higher dose of peg and too frequent. I’ve now reduced only since yesterday to two weekly.
45 is the tops I would do but even that made me I’ll. Try speak to MPN about it & you can always just do 45 no one can force you into it. Maybe stick with 45 & check next blood tests & try to speak with Professor Harrison if not happy 👍
yes contact MPN for 2nd opinion on dose. My hair came out in handfuls after just 4 weeks on Peg. I had long thick hair & even H U didn’t do that. It has slowed up now I am off it temporarily but hair so thin & that’s body telling me it doesn’t like this doseage . I was only 45 weekly & too strong for me . 👍
and they tell us stress increases platelets but difficult not to worry when health depends on these drugs . Or does it who knows in long run if it’s causing more complications in our health damaging other organs . I am not convinced yet unfortunately . I start my Peg again in January & won’t be going above 25 this time to see if headaches stay away 👍Julia .
I honestly am beginning to feel I’ve had far to much of this drug for the last 6 months. I was healthy with normal blood counts now Things aren’t so great and hair loss is so devastating isn’t it. I could cry I too had lovely thick hair 😢
yes it’s the drugs & their effect on healthy body that concerns me but they try to frighten us with its progression . Be nice to know if anyone is doing well on nothing 👍
I know they are so fixated on reducing our platelets. Regardless of what it is doing to our bodies. I’m going to Australia in December for 3 months. I’ve got to get a couple of blood tests whilst there I’m tempted to reduce my dosage to the same as you. See what happens 🤔
yes I am sure it won’t harm . I have been off everything 4 months & not risen much between Hydroxy & Peg. Professor Harrison is not obsessed on platelet numbers but more on health & control. Wish I was off to Ozz Usually go there as my brother in law & family live there. . Have great trip 👍 Julia . If you are chilled out the platelets May stay good if you are careful on the sugars & non inflammatory foods that seems to help 👍
I had a similar experience when I was diagnosed 13 years ago not through any symptoms but a routine blood test. After a battle with the GP and the local haematologist I searched the internet and found Professor Harrison. She is the best and I have been under her care ever since.
Thank you for your input and vent .... really pleased you took action and contacted Professor Harrison.Are you from Exeter by any chance? I live here and curious to know if we're dealing with the same haematology doctors.
yes Lynn Exeter . Haemotology are good but I felt very blinkered on my side effects & how meds effected my what was good health before on it. Dr Veale is excellent but I saw another last time & it was a grim appointment like being rushed through a supermarket checkout where no one looks up from computer or even asks if ok 🙈. Hence I needed an MPN expert I felt for another opinion. I know they won’t be happy but I need to know my best treatment options as end of day it’s our lives & nhs are so short staffed there currently I waited 2 hrs . Julia . 👍
Hi Julia,I wonder if you saw Dr.Smith or Dr Majeed? I agree unfortunately I don't see Dr.Veale as often these days as like you've said extremely busy. I am there a lot as transfusion dependent ....I have MF/MDS but I am a complicated case as have bad Bronchiectasis and inflammatory arthritis...so on different various meds.I have considered contacting Dr Harrison and you may have prompted me to do that but my conditions have taken over my life.....ie nebulizing antibiotics twice daily and several in patient hospital visits this year with lung conditions etc etc! I am on hydroxicarbimide atm....have been on others various times.I was diagnosed 5 years ago and my life changed completely.
Where do you live... could we possibly meet up for a coffee? Lynn
Majeed & was far from impressed . Did not look up from computer once & wanted to get me back onto HU as obviously cheaper than Peg I had requested. Really bad patient skills . Went home with the injection’s eventually from hospital with no instructions re administering. Fortunately our MPN website is very informative so I managed ok . My take on this procedure though is that if anyone had a reaction to first injection they give themselves & live alone there is no back up.. Even with Covid or flu jabs they make you sit a while just in case . 👍
Hi Exeter21 - what a very informative post -thank you! No-one knows how any one of us will react to the meds for MPN - they are very complex conditions,,,,,,,,,,,,, Lots of luck with getting stable & having meds which suit you too. Good to know there is an approachable expert in the uk too...x
many thanks Annula it’s important I think that we recognise that sometimes our body responds differently & even if we annoy our medical professionals asking too many questions it is our health & quality of that life on drugs to be bearable . As I said some do not like being questioned but I read as much as possible on this disease & information on this MPN site led me to Professor Harrison. It’s a brilliant site for us & good that everyone Worldwide can get some advice on who to contact etc & moral support. Regards Julia 👍
thanks I don’t think some of them like to be questioned & this one was certainly one of those even down to too high dose to start on 🙈. Stay in control is my motto if I feel horrendous it’s my body telling me something is too strong 👍
yes I had same problem when trying Peg, haem wanted to start me on 135mcg with correct start dose being 45mcg which I couldn’t tolerate so 135 would have been fun
I gave the headaches 2 weeks but that was well over what I should have endured the same as HU but tried to hope body would tolerate . I will get there slowly . Unfortunately good Drs always busy & others just wanting to get prescriptions done & move to next patient. NHS in bad way . Over a year since shoulder injured & mri scans taken forever & results being read. In Europe. It’s a real mess up in UK 🙈
I am sorry to hear you’ve had such trouble getting the right help for you! And glad that you’ve managed to find it!
Please if you don’t mind saying what your platelet levels are
I have been trying to get referred to an MPN specialist as my local department doesn’t really have the complete answers to my queries related to fertility drugs and my condition.
my platelets were 560 dropped to 420 on Hydroxy but it made me really I’ll & like a zombie. Risen to 560 now & started peg but bad migraines so time off then lower dose. My platelets had been rising 4 years before I asked for tests on bloods following a sports injury failing to heal unusual for me. After several repeat bloods I got diagnosed ET Jak2 positive no symptoms. Only put on HU because over 60 despite being sporting & fit. It knocked me back horrendously as my body never takes medication . My diet & excercise has always been good but I now 60 kgs having lost weight on HU . I contacted Professor Harrison due to my bad response on meds for alternative suggestions as quality of life had gone on hold due to bad reactions to drugs. Off them I feel fine but eventually have to find a solution unless my platelets balance which is unlikely or a miracle. I found medical professionals don’t always accept we are all made differently & HU is not the only drug . However Professor Harrison is extremely understanding & not focussed totally on platelets & age unless crazily high. Glad I contacted her . Julia 👍
Thank you so much for your post which I have read with interest. Hope you eventually get your medication adjusted to correct dose and no side effects. I have ET JAK2+also and been on HU 500mg daily. I have always been very sensitive to lots of medications too. I’ve just asked Haematologist on phone consult if I can stop HU for couple of months or so to see if I feel better and perhaps consider Peg Interferon instead. Best wishes, Fran
Thanks Fran I came off HU in May & went 4 months without anything just aspirin & felt very healthy. The Peg for me is where I want to go but obviously with me it has to be a very slow transition. I do not worry at this stage on my platelets count unless goes through roof & effects me physically . I do however believe I must get something to control it that’s bearable . The HU made every bone ache which disappeared once off it. I suppose I have been in a strange position of being a Guinea Pig on my response to these meds. But as soon as I came off the HU there were no more aches & pains which I had not experienced until I was placed on that drug. Maybe my body just hyper sensitive to anything . 👍 Julia.
Has Dr Harrison discussed the Bomedemstat trial? It's been promising for PLT control. One forum member here did not work out with it, but in general it's worth discussing with Dr.
(From the company) : "As of the data cutoff of 29 April 2022, bomedemstat demonstrated durability of response with 81% of patients achieving normalized platelet counts for at least 12 weeks "
know nothing on that I will ask thanks. Too much knowledge now on this subject I keep wondering how I would be if never aware I had this, due only from my shoulder injury . I keep you posted on Whats next. Meantime I am hoping to get out to Majorca. My son is there training all Winter as he is in British teams Americas cup sailing on INEOS with Ben Ainslie. He did last one in Auckland NZ but lockdown stopped us going. The test boat now finished & he testing it this week . So I really hope to get there. Search Ben Cornish sailor & Team INEOS sailing .
I was so glad that I got off of hu and wish I had done it sooner. I was so happy to find this site and read about peg interferon since it can actually make a difference in progression. I have been on peg for three months now and I’m still working with adjusting the dosage, but I feel so much better than I did on the hydroxy. Before the transition I went off of hydroxy for several weeks which was helpful since I then had a sense of my health off of medication. I wish you the best in finding the right dosage and the right medication.
Thank you Octopedes for the update in your position regarding HU and Peg. It helps us all to compare notes on our MPN’s.
Good morning Julia lm most grateful for your response,lm also over 60 and recently changed from Hydroxy to Pegusus. Manged to give myself my second injection yesterday so pleased about that. I also have migraine type headaches as well as other side effects. I'm seeing my consultant soon and will see what he can do to help me through what are hopefully teething troubles.Good luck to us both things will improve my dear.
keep me posted Adie. I was on 45 weekly but Professor Harrison will reduce that further for me & bigger gap as head pain should not go past 24 hrs. I could not touch scalp as whole head was inflamed & tender to touch, All normal as currently off it for a month . I do wonder if lots suffer in silence thinking it’s the disease so I was lucky enough to see how my body responded off medications . Julia 👍. Hopefully they can reduce your injection & space it out more but let’s hope they listen to you 👍
Hi Exeter21 lve just seen your post it whent into my other MPN expert file. Thank you sooo much for sharing your response describes my physical reaction to 3rd injection. Your response was proactive and Dr Clare responded to that. This Thursday I will be properly prepared and lm sure my consultant will be listening.Best wishes buddy.
gooduck Adiewon I will follow progress. I starts again mid January on the Peg . Really hope headaches don’t return they were horrendous. Not sure where my posts go as my I t skills are rubbish 😂 Julia 👍
Good to hear you are being cared for. I have contacted Claire Harrison, or at least tried to, but never got past her secretary. I imagine it's because we live in Wales and the NHS is not a United Kingdom thing anymore, so my wife has to put up or shut up when it comes to specialist care.
Completely agree! An MPN specialist can make all the difference. Was lucky enough to be referred to one immediately by my GP who stated that he did not think a regular hematologist would have the KPIs to deal with an MPN - they are just too rare and as he reminded me at the time "practice does make perfect" so better to have someone with a lot of practice. Also have noted that most MPN specialist, as they understand the individual nature of each of our diseases, seem to be willing to work more with us, at least in my case, than a regular doctor might be.
that is such good advice and I wish you the best in finding the dosage that works for you. I weigh only 110 pounds and have been aware for years that I will always need less medication than others. It is so important to listen to your own body and to push for what you want with your specialist. Wishing you the very best!
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Access to Prof Harrison's presentation on ET
