Pegasys dosage

[francesb]

Hi, can anyone tell me the maximum dose for Pegasys? I've been on it several months with ever increasing doses as not getting any reduction in counts. Consultant today put the dose up to 270 per week. Is this ok? It seems a bit scary? Thanks, Frances.

[Nray]

I started in November on 45 weekly as poorly tolerant of Hydroxy. Platelets controlled but side effects were bad so we tried 90 fortnightly. Side effects less but platelets increased by 170 straight away and feeling very unwell. Went to Guy's for review yesterday and will try 45 fortnightly for 8 weeks.

My injections only go up to 135. Do you have to take 2 injections?

[francesb in reply to Nray]

Hi, thanks for your reply. I started on 45, then 90, then 180 for a number of weeks, now 270. The pharmacy didn't have 270 so gave me two 135s which I had to inject last night. They are ordering 270 for me for next week. I find the big dose a bit scary and my consultant has admitted its experimental as he has no idea what the dose should be. Good luck with the new regime of 45 fortnightly. Frances.

[johnf57 in reply to Nray]

Hi francesb.

I've been on Pegasys Interferon since June 2015 - diagnosed with Secondary MF in June 2014 – previously ET since 2004.

Initially, I was on 90mcgs of Interferon per week, but this was increased to 135mcgs pw after about a month, due to a substantial rise in platelets.

Two months later I was prescribed 270mcgs pw of Interferon as it wasn't having the desired effect.

The Pharmacist actually phoned the hospital to check if the prescription was correct as she'd never seen such a high dosage.

I was on 270mcgs pw for about 10 months when my Haematologist decided that my bloods had reacted well and the dosage was reduced to 180mcgs pw.

I never felt particularly unwell during the 270 dosage and little or no side effects.

So, all I can say is, stick with your consultant's advice and hopefully your bloods will get to where they ought to be.

Best of luck with it.

John

[francesb in reply to johnf57]

Hi John, thanks so much for your reply, it's good to know I'm not the only one on such a high dose. Great news that your dose is now reducing. I'll stick with it. Thanks for the encouragement. Best wishes, Frances

[francesb in reply to johnf57]

Hi John, could I ask please did your pharmacy get you 270mcg in a single injection? My pharmacy has given me 2 x 135 for the second time and I don't want to keep doing two injections each time unless I have to, so can you advise if you get the dose in one syringe? Many thanks, Frances.

[johnf57 in reply to francesb]

Hi Frances.

My pharmacist supplied it in two 135mcgs syringes also, so I reckon maybe 180mcgs is the most you can get in Pegasys dosage.

If you don't like to inject the syringe twice maybe you could consider the 'Pen' injector.

The pharmacy ordered the 'Pen' by mistake rather than the syringe for me and apparently most people prefer it.

I used the 'Pen' on my upper thighs, left and right rather than the abdomen where I use the syringe and it's very easy and pain free.

Personally, I prefer the syringe but I'm odd like that.

I hope this is of some help to you and if you have any further questions feel free to ask.

Best of luck with it.

John

[francesb in reply to johnf57]

Hi John, thanks very much that's really helpful to know. I've never tried a pen, being quite happy with a syringe but if I get fed up with 2 injections every time I might give it a go. Thanks again and I hope all continues to go well for you. Best wishes, Frances.

[AndyT]

That's the highest dose I've heard of for Pegasys in ET - most I've been on is 90mcg weekly.

Hope you find a dosage that works or can try an alternative.

Andy

[francesb in reply to AndyT]

Thanks Andy, my MPN is not clearly defined as ET, classed as "non specified" which complicates things. the consultant said he has "no idea" about it really so it's all experimental. I am a bit nervous about such a high dose but will give it a go. Best wishes, Frances.

[MPort]

Hi Frances,

I take Pegasys for PV. I am on it for about 9 years. I need it to control the red blood count. I started high at 180 but side effects meant it was reduced to 90, then 45 weekly, now 75 10 days. During that time I needed venesections to control the red cell numbers - irregularly and for no aparent reason. I found and have read that Pegasys is slow to take effect and sometimes Hydrea is taken in tandem until Pegasys starts to act. How are you tolerating the higher dose?

[francesb in reply to MPort]

Hi, thanks for your reply. My first 270 dose was last night, so far I'm ok but I expect to feel the side effects by Wednesday as I did on 180. I'm hoping the Pegasys is just being slow to kick in but after several months it doesn't appear to be working. However, I'll keep trying! Best wishes, Frances

[francesb in reply to MPort]

Hi, my first high dose was Monday night. Yesterday I felt pretty rough most of the day but improved by tea time and feel ok so far this morning so fingers crossed. I usually get one rough day on Pegasys. Thanks for your reply. Best wishes, Frances

[MPort in reply to francesb]

Hi Frances. It's good to hear you had standard reaction on day after. It might be worth noting how you feel each day. And check Pegasus site for reactions. I noted a sine wave reaction when I was on higher doses. It is good to have as much info as possible always but especially if your haematologist is not familiar with interferon use. Best Mairead

[francesb in reply to MPort]

Thanks Mairead, will keep an eye on the injection sites. Best wishes, Frances

[maryv]

Hi Frances, I started on Pegasys 18 months ago, having previously read up all I could about it on this and other US forums. I have continued, if at lower intensity level, to monitor reports of other people's responses to Pegs. I have NEVER come across ANYONE being prescribed a dose higher than 180mcg. I suggest STRONGLY that you contact an MPN specialist and in the meanwhile I would not personally take more than 180mcg which is already a very high dose for MPNs. I know I'm sounding very dogmatic, but frankly it is very concerning that a consultant should prescribe such a high dose on an "experimental basis"!

Best wishes,

Mary

[francesb in reply to maryv]

Hi Mary, thank you for your reply and concern. As you may see I've had a reply from another person on the same high dose as me with no problems and I've also found details online of people on doses of 360 and 450. My consultant is an MPN specialist but says that with Pegasys it is always experimental to find the dose and time between doses that works for each individual. I found it scary at first but have been reassured by what I've found out since. Best wishes, Frances

[AndyT]

Hi Frances - have you thought about seeking a second opinion from an MPN specialist..? As these are rare conditions not all haematologists are familiar with them and it sounds like yours may be inexperienced in this field. An expert might help you to get a more definitive diagnosis and to find the best treatment.

Good luck

Andy

[francesb in reply to AndyT]

Hi Andy, I'm lucky in that my consultant referred me to Professr Harrison at Guys because of my unclear diagnosis and he keeps her informed of what he's doing. I'm due for a review with the Prof shortly so am trusting my consultant until then. I've been encouraged by another forum member who is on the same dose so that has helped. Thanks very much for your advice, best wishes Frances

[AndyT]

Hi Frances - if you're also seeing Clare Harrison I'm sure you'll be fine - what she doesn't know about MPNs isn't worth knowing..!

Good luck

Andy

[francesb in reply to AndyT]

Absolutely! Thanks Andy, I just had a slight wobble at first about the higher dose but am back to taking things in my stride now. I Much appreciate all the advice. Best wishes, Frances

[linphy]

Hi everyone, I've seen my consultant today. I have been on Anagrelide since end of February, but have had bad palpitations. Consultant has taken me off anagrelide today. His putting me on Pegasys, I have to wait for next week for the chemo nurse, to show me how to inject. Feeling worried, hydroxycarbamide didnt agree with me or anagrelide.

[francesb in reply to linphy]

Hi, I was apprehensive about starting Pegasys but it's been fine and I'm on a high dose. I usually get one day when I feel a bit "slow" but not ill, usually the day after injecting, but no other problems. I inject at bed time and take two paracetamol as some experts recommend and am fine. So don't be downhearted, I find it far more tolerable than Hydroxy. Good luck and best wishes, Frances.

[linphy in reply to francesb]

Hi France

Thank you, had a call from nurse today, seeing nurse Wednesday, for her to show me how to inject.

Lin

[francesb in reply to linphy]

Hi Lin, I was slightly apprehensive about injecting but when you've done it once with the nurse you'll realise it's a doddle, I do it without thinking now, you'll be fine. There's a pen injector or syringe. I use the syringe. Both are dead easy. Good luck with it and the Pegasys. best wishes, Frances.