First dose of Peg

[RazB]

Its 5 days since I took my first dose of Peg (.45) and I’ve had a pretty mixed week. The first 24 hours I felt incredibly sick, could eat much, only drank water, very very thirsty. Second day felt a bit better but incredibly tired and sick on & off throughout the day and that seems to have been the pattern going on. Have woken up this morning again feeling quite sick. I’m still on full dose of Hydroxy so wondering if these two together clash. I don’t seem to want to drink anything other than herbal tea or water (no wine…I’m not even missing it, unheard of for me!!). Am really hoping that I can tolerate this drug! Fingers crossed. X

[ainslie]

sorry to hear it’s hard so far, one small point is that allegedly Peg is dehydrating so more water needed, but careful not to over do water as it can deplete minerals inc salt if overdone. For a non Peg person my urologist says 2.5 litres is enough.

Maybe others more experienced with Peg can chip in about how your feeling, if you can’t tolerate 45, you could with agreement of Haem try lower dose, ie half that, I have heard of some dropping down to 22.5 per month to slowly try to build up tolerance, I think that was a Clair Harrison patient on here so maybe interesting to find out how that plan worked for them, maybe they could chip in

Good luck, been there done that. 😀

[RazB in reply to ainslie]

thanks for reply. When you started Peg how long did it take to settle? I was expecting to feel rough for a while x

[ainslie in reply to RazB]

I didnt continue with Pegasys, stopt at 3 weeks I had the itchies before Pegasys but a few days into Pegasys the itching became impossible, Dr Hasselbach warned me in advance this can happen to a very small percentage, ie the huge increase in itching, and it doesnt get better by trying to tolerate it for itching at that scale, it also made me depressed which I am not prone to. I am on Ruxolitinib for PV which is working really well.

It may be wise to contact your haem nurse or doc to discuss and to consider stopping until feeling better and start lower dose slower. I recently spoke with Dr Kiadjian who is one of the world experts on Peg/Bes for MPN, he reckoned 70% can tolerate it so fingers crossed for you

[RazB in reply to ainslie]

thank you, and I’m really glad to hear that you have found a drug that you are doing well on. I realised something interesting today… I have been taking my normal Hydroxy dose at midday since starting Peg, and have felt really sick every afternoon but haven’t taken it yet today (6pm) and haven’t felt sick this afternoon…so perhaps it’s the mix of the two drugs that isn’t helping. I’ll contact my consultant on Monday and see if I can start bringing the Hydroxy dose down asap. Thanks for support x

[ainslie in reply to RazB]

That sounds better, it will be interesting to hear what your consultant suggests, I read it’s Clair H so another positive. I was a bit curious why you were on Hydroxy at your age and lowish platelets.

[RazB in reply to ainslie]

Is the use of Hydroxy linked to age? I started it when I was about 41, now 54.

[ainslie in reply to RazB]

generally, unless risk factors (which NHS includes being over 60) or symptoms Haem experts tend not to think platelets need treating with meds for ET unless somewhere over a million, I think I also heard Clair H saying that on some vid, but if she has you on it there must be good reason as she is clearly a expert.

[RazB in reply to ainslie]

my platelets were way over 1m when I started!

[hunter5582]

This combination of drugs does come with drug interactions.

Monitor/Modify Tx - hydroxyurea + peginterferon alfa 2a

monitor CBC: combo may incr. risk of myelosuppression; may incr. risk of cutaneous vasculitic toxicities in myeloproliferative disorder pts (additive effects; mechanism unknown)

Additional Considerations - peginterferon alfa 2a in Pegasys

when used to treat HCV, caution advised w/ narrow therapeutic index drugs extensively metabolized in the liver; viral eradication may improve hepatic metabolic function, decr. levels, efficacy of concomitant drugs

PEG and HU are both medications that can have significant adverse effects. Taking them together would most likely increase risks of adverse effects even where there is no known interaction. You will not know how you are going to react to PEG for certain until you discontinue the HU.

online.epocrates.com/intera...

Wishing you all the best on the next stage of your journey.

[RazB in reply to hunter5582]

Thank you Hunter5582, you are a mine of information!

[Grum1]

It was interesting to read re your lack of desire for alcohol. I have been on Peg for 18 weeks now and found that I lost all desire to have alcohol since then (also unheard of for me!). And I’m not missing it either. It’s as if a switch was turned off 🤷🏼‍♀️🤷🏼‍♀️🤷🏼‍♀️ I am just disappointed that the weight I put on whilst prescribed HU hasn’t dropped off me, especially with not consuming wine or any other alcohol.

[gilded in reply to Grum1]

Hello Grum1!

I must admit that Peg has not reduced my love of wine! I enjoy a tipple or three. Preferably red or fizz.

[RazB in reply to Grum1]

That is interesting isn’t it! I’m with Gilded, I absolutely love wine normally but like you a switch has been turned off so not anymore…it’s probably a good thing long term! X

[Solyesh in reply to Grum1]

Interesting as same thing happened to me. I love wine (and tequila) - especially a full bodied red. Since starting Peg I have not had the desire or frankly been able to really drink a full glass. If I try to I wind up not feeling great and my sleep is horrible and can even wake up next morning regretting 3/4 of a glass. I initially thought it might have something to do with liver sensitivity (since my liver readings did jump when I first got on Peg) but they have been back to normal and still no go on the Red Wine...can try a white but even then not really - the tequila is easier but also vastly reduced...

[Grum1 in reply to Solyesh]

I loved a Shiraz or a wine with dinner, beer in hot weather and the occasional cocktail. I just stopped everything straight off. Holidaying in Indonesia currently with all the cheap drinks and it is water or mocktails for me! Just so unbelievable. My liver enzymes also were high for first 4 months on Peg but are perhaps starting to lower now

[Wyebird]

fear not, every dose I took meant a reduction in symptoms. I used to call it the 5-2 diet. With The 2nd dose my symptoms were greatly reduced. They continued to reduce for at least 6 months. That seems a long time but my blood count improved significantly as did my body and general well being. What dose are you on?

Stick with Good luck

[RazB in reply to Wyebird]

have only taken one .45

[Wyebird]

sorry just read that you are feeling sick 5 days after your first (45)Peg dose.

I went straight onto 90 plus my 17 Hydroxicarbomide but cut out 9 anagrelide a week. I had blood tests every week for a few weeks. Are you being closely monitored? Try and stick with it its early days. Do talk to your clinic, maybe 45 every fortnight.

Don’t hesitate to private message me. I’ve been on Peg approx 19 months now and still having it tweaked. I’m trying 90 every 17 days at the moment. My body loves it.

[RazB in reply to Wyebird]

Thank you Wyebird. It sounds as though you are doing well on it.

[Wyebird in reply to RazB]

yep the only problem is that through inactivity being on Hydroxicarbomide and aches, pains and strains, I’m struggling to increase my physical ability.

A lot of it is mental. X

[AndyT]

My experience of Peg has been very positive, with minimal side effects and I started on a small dose of 45mcg like you.

I hadn’t been on HU before, so wonder if as you suggest it may be the combination of the two drugs. Can you talk to your doctor about stopping the HU to see if that helps you tolerate Peg better?

[RazB in reply to AndyT]

Hi, yes I think the plan will be to stop the HU. It’s really good to have so many responses and to hear everyone’s views, very helpful.

[Blonde25]

My first dose of 45 made me feel a bit nauseous , dizzy and tired and I had a funny taste in my mouth . I've been asked to inject every two weeks .

I took my second dose on Friday but I spilled some, the plunger came out and I put it back in to the mark and injected myself .

I've had no side effects apart from a funny taste now and then but I'm unsure now if I've had enough so I'm going to contact the nurse tomorrow to see if I need to repeat the injection this Friday .

Hope you start to feel better

[UKZA]

sorry to hear that it is affecting you this way. I am on 500mg hydroxy a day and 45mg peg Interferon per week. I have felt a bit clammy and have stomach discomfort but otherwise alright. Hopefully your body will manage as it gets used to it

[RazB in reply to UKZA]

hi, are you staying on both drugs together? My understanding is that I’ll slowly reduce Hydroxy over next few weeks.

[UKZA in reply to RazB]

I reducing HU as I increase the interferon, but have only been on it for 4 weeks and they have not changed anything for the next four weeks.

[Peak-Moves]

hello, sorry to hear you’ve had a difficult start.

I started on weekly .45 3 years ago. Now on .90 every 4 weeks. Overall symptoms a lot less. Still have to plan for being tired at about 24-48 hrs later and I do get quite low in mood at the same point, all for about 48 hrs. I can still function but wouldn’t plan anything I need to be really on the ball for.

Recently reviewed with Prof Harrison. I was on every third week, now on every fourth week, to reduce frequency of impact of side effects. The other option was to reduce dose and take more frequently but I’d rather deal with the side effects less often, assuming blood results remain good. And for the moment the side effects are tolerable for me for the benefits of being on Peg.

Best wishes, Heather

[RazB in reply to Peak-Moves]

Thanks Heather, I’m sorry that you experience low mood but good that you’ve got Prof Harrison on your side, I do too, she’s the best! X

[plum27]

I have been taking Peg for several years now, after a few years taking hydroxyurea. In the beginning, I too had a strong and unpleasant initial reaction, with moderately severe flu like symptoms though no vomiting. Poor appetite, aching legs and all over, headaches, unable to sleep. It was unpleasant but I had been warned it would happen so was prepared for it. I stopped taking the hydroxyurea at the same time I started Peg, so no overlap. After each injection of Peg I felt worse, then gradually better through the week. But overall the trend was to less severe side effects. After three or four months it was not nearly so bad and I was somewhat used to it. After a year the side effects were mild most of the time. Occasionally a bit of aching in my legs or general malaise but not bad. Over the year I mostly recovered from the side effects of the hydroxyurea also. And my blood counts stabilized. I needed venesection every few months before switching to Peg. I have had only 1 since, soon after switching. My blood results have been much better and more stable and overall side effects are much less severe than when I was on hydroxyurea. While Peg may not be best for you, I hope you will not be put off by the initial unpleasantness and in the longer term it works as well for you as it has for me. While the first few months were quite unpleasant, I'm glad I persisted with it. The past few years, barring those first few months, have been much better than when I was on hydroxyurea. I would not go back now.

[RazB in reply to plum27]

thanks plum27, that’s interesting reading and really good that you are now having such a positive time with Peg. X