Further to my previous post, today I had my consultant appt.
My blood results hadn’t come through on my NHS app before my appt so I had no idea whether they had improved or not.
We discussed my side effects & I said I was hoping to reduce the dosage to 65mcg to see if I can tolerate the side effects while trying to bring down the levels gradually.
I was met with 5 mins of being told that I may as well not bother taking 65mcg & that he wanted to increase the dose to 135mcg despite my not really tolerating 90mcg.
I asked whether the process of this drug is that levels reduce slowly & I was told that according to my latest results it hasn’t been working at all. For ref when I started Pegasys my platelets were over 1000 & my haemacrit was 0.45. After 6 weeks of 45mcg weekly my platelets were 840 ish, haemacrit 0.45.
When I asked to see today’s results they are platelets 426 & haemacrit 0.458, so platelets reduced by quite a bit & haemacrit a bit of an increase.
I gave my concerns about increasing the dose when I can’t tolerate the side effects at 90mcg & was told if I can’t tolerate them I’d need to move onto hydroxy, with an added discussion that pegasys Is preferred for under 60s & there is a risk of PV developing into leukaemia on hydroxy.
When medication was discussed a few months ago, this consultant practically insisted I start on hydroxy & not Pegasys. I had to ask the specialist nurse to intervene, but he had no recollection of that conversation.
I absolutely accept that side effects were a risk while getting used to this drug, but to increase the dose while the current dose has made me feel so awful is hard to accept!
He kept saying ‘the protocols I’ve read about’ & this gives me no confidence he actually has any first hand experience with Pegasys & PV.
I am so done with this man on so many levels. I appreciate that a general haematologist will not necessarily be expert in all areas, but surely you’d contact a specialist colleague for advice for your patient?
I’m looking into how to transfer to an MPN specialist 4 hours away near my daughter in Nottingham, if anyone can recommend anyone in particular please?
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Lilliegarden
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Your post makes me so mad! Sounds like you have a real crap haematologist. I wish you all the luck in finding a new one. I shouldn’t say this but at the end of the day you are in control of what you give yourself should you find yourself stuck with him
That is just not good enough. If your haemo could just read the posts if how long Peg 45 takes to work (in my case 9 months) he might suggest you wait to increase. I had a couple of venesections in those 9 months until it started working and now don't need any. He sounds like one of those arrogant, know- alls that the NHS tended to employ but now need to retire. I have three daughters, one a pharmacist and two trainee doctors. Empathy and willingness to continue learning is now the most required attribute with their new recruits. Good luck.
Sorry for your bad experience. I think you are right that your next step should be to get a referral to an MPN specialist. It's very possible to have appointments over teams and I've done so on several occasions with my specialist even though he's only an hour away from where I live. Sometimes it's just easier and everything he needs to see is in the data so physical examination is less of a concern.
I see Dr Donal McLornan who works out of UCLH in London and he's excellent. I would highly recommend.
really sorry you are experiencing this, not being heard is very destabilising and unhelpful. Stick to your guns, if you know that your body (and mind) can’t tolerate a higher dose at the moment then don’t take it. Your platelets are at a safe level (462), what’s the enormous rush? You’ll be heard and your situation will be understood by MPN specialist, all the best and keep us in the loop x
What an arrogant Dr, I stopped peg after being on it for a year horrible side effects and no change in platelets. I got a referral through my heamo but many do go via their gp. I wish you well.
I also stopped taking peg I had too many infections including sepsisI now take hydroxyl 4times Week and aransep injections once a week much better for me so far
sorry to hear how useless your doc is, not that unusual though, at least it’s not a grey area, you definitely need to get better help, only thing I would add is Hct is a tad high so wise to Venisect if at all possible until you get meds sorted. Good your injecting at home ie you have control, I would go nowhere near 135mcg for now, your doc can’t force you.
Diabolical really, your platelets are already improving, reds can take quite a long time to come down, I know one patient it took 2 years, he is fine now. It may be continuing at 45 or 65mcg would work fine , venisect in the meantime and only increase if you can tolerate it. Don’t be discouraged by your current Haem, I’ve had a few of those over the years, remain positive and persistent, you deserve and need proper treatment.
After gleaning all the info I have from this super forum, I did ask whether I should have a venesection for my haemacrit & he said no, as the level is only slightly raised.
This time last year before any medication, I had couple of venesections & they were happy as long as my haemacrit was below 0.45, not on 0.45 or over it.
I’ll speak to the specialist nurse today as I’ve discovered I can’t get any type of GP appt to refer me elsewhere until early August.
good idea, maybe the nurse can help with getting venisect, Hct should be under 45 and some docs reckon 43 for female, your Haem is being irresponsible, no point in sugar coating it.
Hi there. I live in Nottingham and am under Dr Wadelin at Nottingham City Hospital I find her to be very kind and understanding and certainly wouldn't pressure you into any treatment your not happy with. I would highly recommend her.
I agree with the others! You are in charge. I am a perfect example of being my own advocate and convincing the doctors to let me try Besremi and thankfully mine listened. And mine are so good at letting me make decisions. My local doctor told me my dose is the lowest dose that works and that I don’t have side effects! And these drugs take time. I wish you luck.
This is the second time I have had this type of issue with this consultant & I’m done with it.
Nothing would make me happier than to be that patient who doesn’t make waves, but the time, effort & brain space this is taking up is unacceptable.
I’ve left a message for the specialist nurse to call me & will ask for a different consultant while I look into transferring hospitals 😊
Hi there, sorry to hear of your bad experience, I go to Nottingham City hospital, was more than happy with Dr Herman’s, recently I was transferred to another consultant there. All Drs I see there in clinical haematology seem very knowledgeable on MPN’s. Hope you get a better service soon. I am on Pegasys for ET at the moment and refused to take Hydroxy on diagnosis at another hospital as I was just 50 when diagnosed. It took almost a year for Pegasys to work for me started on 90 weekly now on 45 fortnightly.
This Doctor has a poor understanding of many things!!
I just wanted to add that it took 6 months and a dose of 180mcg of pegasys to move my stubborn blood.
If a dose of 45 or 65 can move your blood that much then the light dose is what you should be taking, and possibly very shortly you could spread that dose out to 10 days or 14 as to maintain blood levels and help your body adjust to medicine side effects. If any numbers should rise then you has room for adjustment. Remember many Doctors are happy with platelets under 500-600 with treatment.
Well I hope you find a better more experienced MPN knowledgeable Specialist.
Personally I would still stick with the Pegasys because those are great numbers now. 😎🌼❤️
Sorry to hear about the ongoing negative saga with this hematologist. You are quite correct in dismissing this provider from your care team. It is not just your right to do so. It is your responsibility. Inadequate care can only continue when it is tolerated.
Others in the UK can give you the best advice with specific providers. Here is a list of patient recommended MPN expert docs. mpnforum.com/list-hem./ .
In most cases, MPN care is a marathon not a sprint. We have to be able to tolerate the intervention for it to do any good. Each individual responds differently to the treatment options. We each have to decide what our treatment goals are, how quickly we need to reach our goals, what our risk tolerance is, and then make our preferences clear. Assertive patients receive higher quality care. Passive patients do not.
suggest you bin him as an absolute idiot & not fit to be employed. Speak to Professor Claire Harrison the most knowledgeable MPN at Guys London she helped me . I couldn’t tolerate HU & Haemotology tried to start me on 90 weekly. I refused as had read up on it . 65 weekly creased me with headaches & zombie feelings . Spaced out.
I contacted Claire Harrison & reduced to 30 monthly to tolerate drug . It’s not a space race to reduce platelets . Mine our still 500 but I feel great . It will be reviewed but this drug is LOW & SLOW & don’t let some idiot make you a sick Guinea Pig . He has no idea it’s not meant to make you feel I’ll .
Stand up to them Julia Devon UK .
Ps. I came off it for 3 months to let my health recover & it worked. I will not be pushed into high doses that wreck my day to day health 🙈👍
Very sorry to hear what you've been subjected to by this "doctor". As everyone has suggested, it's time for a new doctor. I made a change last year to a new hematologist/oncologist and it was the best thing I could have done. He stopped the phlebotomies, lowered the HU dosage and 9 months later my numbers have improved. His philosophy regarding dosages is that it needs to be tailored to the individual; that recommended dosages are too general and need to reflect the individual's physiology.
Don't give in on this. You'll be happier when you find the right doctor. Good luck and best wishes.
Good for standing up for yourself! We are our own best advocates. Most hems do not have experience with our conditions and definitely not with the latest "protocols"..a good doctor (like any good professional) will reocgnize their areas of opportunity and, if they are truly there to help their patients, would welcome outside expertise (they might even learn something and be in a better position to help their next patient. Good on you for looking for a true MPN specialist! Also, Peg can take a while to work and your numbers seem to be moving in the right direction - much better to hold steady and see if your body adjusts to the Peg and side effects subside as your numbers continue to improve. we have so much to manage with these conditions and unfortunately in many cases that includes non-expert medical teams...
Lillie, I was on Besremi (interferon) for 6 injections, and they did lower my platelets a good deal and HCT completely, but by the time I reached 250 or 300 mcg (Besremi numbers don't match Peg's), my liver enzymes jumped up too high. I've been off the drug for a few months, and my platelets are climbing but HCT holding firm in the green zone. My local hem/onc doc would also prefer me on hydroxyurea as I'm 65 and frankly it is what he is used to. Besremi clearly worries him, and I suspect he would not want it himself. I conferred with a Mayo specialist I'd seen once before, and while he also says HU might now be the "go to" drug, he agreed that I could try either interferon at a much lower dose and go for "duration not dosage." I'm considering this advice, just juggling whether to try Peg instead of Bes this time. I am as afraid of the drugs as of getting a thrombotic event, actually, but I know this flies in the face of PV wisdom, so I'm trying to be reasonable, and take a semi-reasonable course of action: interferons and aspirin, anti inflammation supplements, eat well, do qi gong, etc. Best of luck to you!!!!
so sorry to hear this. Which hospital are you at? I am at Freemans, Newcastle and have mostly been happy with the treatment there. This is after a couple of hiccups of not being heard in the first place, I started peg at 45mg as they were concerned about side effects. I am now up to 90mg and the process has been relatively easy. It did take about 3 months to notice a change in bloods. Just remember that you have to live with this, so you get to make the ultimate treatment decisions. Take care. Penny
I spoke to the specialist nurse this evening, she spoke to the consultant & he has agreed (🙄) if I want to try 65mcg & see how I get on.
She will also arrange for me to change consultants in the dept until I can transfer to another hospital.
We discussed the possibility of venesection to lower my haemacrit but the concern is that it could make me even more anaemic so the hope is the Pegasys will gradually bring it down.
It all just seems such hard work & unnecessary this performance every time I have a consultant appt , but fingers crossed it will be fine until I can transfer elsewhere 🥴
good for you for speaking up! My experience with Pegasys has been that for me it is taking a very, very long time for my platelets to come down. I started at an extremely low dosage of 25 and very gradually, over a period of six or seven months, I got up to 50 with no reactions, which is where I am now. The initial six months my platelets continued to go up with each blood test. Then finally around two months ago they started to go down and went from the higher 800s at six months down to the 500s at about eight months. I am very happy with this, because after being sick on hydroxy, I feel like myself again. I do not have an MPN specialist, as there are none here in Hawaii, but my oncologist has been very willing to allow me to take it slow, which has now paid off.
The good thing is that your platelets are already going down. I am wishing you the very best in your healing journey. This website is such a blessing. Everything I know, and understand about MPNs I have learned here. We are lucky to have such a supportive community.
hi, that maybe a good idea. Staying with your daughter over night in the process.
After almost 24 months of Peg I’m hoping to reduce even more. Approx 4 reductions already. Although minor. I have heard of people being on hydroxi and Peg.
I don’t know how long you’ve been on Peg for but I continued to have side affects fafter each jab for about a year. Although they diminished with each one. Now I have none.
As a comparison, i also have been on Pegasys for 6 weeks after my (Nottingham based) Haematologist and i had had a good discussion about me wanting to stop Hydroxy which i had been on for 10 years. This was considered to be sensible given my age and I stopped Hydroxy in December, and went onto close monitoring with venesections for HCT as and when required.
Platelets went up during this time to 980 and HCT at 45 with no meds (only aspirin).
Week 4 of 45mcg Pegasys and platetlets down to 850 and HCT at 45 still. Haematologist is happy that things are slowly heading in the right direction.
It's now week six and i'm tolerating this low dose well, though i do get post shower itching if i am dehydrated. We are taking it slowly with 4 weekly check ins currently though if the next is in the right direction, i think we'll open that up a bit.
Pegasys was in clinical trials when i was diagnosed and there were no places left. Glad i made the switch at last, though i was rather anxious about the side effects as i was tolerating Hydroxy pretty well, but so far so good.
Anyway, i think you will find an understanding ear at Nottingham. I'm under Dr 'Kandee' and he is very kind and relatable. It's a good team there and i'm sure that whichever Dr you are assigned to, your treatment will be be vastly improved.
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Hydroxyurea side effects?
Pegasys treatment
Besremi side effects?
Interferon side effects?
Just saw MPN Specialist | ET+CALR 
