Changing dose of Pegasys

[Poppy6060]

Hi everyone hope you can help I have been on 45mg of Pegasys weekly for 17 months and bloods all great it’s worked very well for my PV with little side effects went to hospital yesterday and my doctor has now ask me to change to 90mg every two weeks she said she would like me to try this as it’s more cost effective and has I tolerate it well I shouldn’t get any more side effects I was very surprised but I had gone with a very bad migraine and hadn’t eaten much so didn’t question this has much has I should have doctor did say if it doesn’t work out can go back to smaller dose . Been worrying all day about it will give it a try has anyone else changed doses like this and did you get more side effects this has not helped my headache today and have a lot on with elderly parents so need to be has well has possible. Best wishes Poppy

[SP-2008]

Hi, sorry I can’t help with your question. I have been on 45mg for 4 months without any side effects. I always get 90mg dose but have been told to waste 45mg before injecting. Seems a waste of money to me.

I hope it goes well for you.

All the best

Paul

[Poppy6060 in reply to SP-2008]

Thank you for your reply i don’t know why they can’t make a 45mg injection because has you say it is a waste and I was happy on that dose good it’s workimg for you also Poppy

[JackLina in reply to Poppy6060]

Hi Poppy. I actually contacted Roche about informing my chemist and haema about the existence/availability of the 90mcg prefilled syringes. both were telling me there was no such thing. it didn't take long for Roche to clear this and I am now doing exactly the same as many others and wasting the valuable drug when others are prevented from being prescribed due to excess costs. Ludicrous! I just wonder if Roche could be contacted by US as a group, if names are collected on a petition or independently, to encourage them to make a 45 mcg dose. It does seem that this is a dose that is working for the majority and one which can at least be used to introduce the drug to one's system.

If we all target them they may get the message???? I stayed on that dose now since June 2018 and it's working well. Plenty of side effects but I'm learning to deal with those........ish! ATB. P

[MPort in reply to JackLina]

Hi Jack, the dosage level of my Pegasys syringe, in my case 135, is a scandal. I use .45 every 10 days. Rest in the bin (well I bring all syringes and needles back to the hospital on my next visit for disposal). Every time I go I ask the dispensing pharmacist and the pharmacy where I pick them up if they can supply a lower dose. I am talking to deaf ears. Even the consultants shrug it off. It used to be 180 so 135 is a small improvement. I can understand the logic of one size fits all convenience. But the NHS is strapped for cash and the cost of it would be reduced by 2/3s if Roche made it in .45. And I suspect it is not prescribed as much as it could be due to cost. I would be happy to join a group to try to change this. Mairead

[JackLina in reply to MPort]

Hi Mairead. That is good to know. If you take a look on the leaflet enclosed with your Pegasys, you will find contact details which allow either email or phone call. Roche is very eager to collect information about this type of thing, so they will probably call you if you're willing to promote this lower dose to be available. It has to be ethically correct. Perhaps they could be convinced. All the best. P

[Poppy6060 in reply to JackLina]

Hi Jacklina thank you for that information I will also be contacting them has you say if we all try it may help stay well

Poppy

[Poppy6060 in reply to MPort]

Hello Mport hope you are keeping well good you are on a lower dose but it is a sham you don’t get the 90 mg syringe it seems all hospital do it differently and I think in my case I don’t always see the same doctor so they all have different ideas you are so right our good NHS is suffering if we can email or phone it might help take care Poppy

[MPort in reply to Poppy6060]

Nice to hear from you again Poppy. With your nudge and Jacks I will see what I can do. Do you get a 90 syringe?

Mairead

[Poppy6060 in reply to MPort]

Hi sorry for late reply yes I get my injection in 90mg doses it is a sham I waste 45mg I am going to do my injection tomorrow at 45mg and speaking to someone on Monday can I ask how long did it take for you to lower your dose to every two weeks have a good weekend

Poppy

[MPort in reply to Poppy6060]

Hi Poppy,

It's good you are able to lower your dose. When mine was lowered it varied up and back for a while.

It's a while ago so I don't have the details. I calculated it on dose and frequency. So 90 2 weekly equals 180 a month. 45 a week is the same ie 180 a month. 45 every 10 days is a reduction of 45 a month.

Lastly I had more frequent blood tests. Got the gp service to do it and give me the results. I have identified my best hct is 38 and no higher than 40. If blood test showed 40 I increased pegasys dose to 60.

So it was trial and error before it stabalised. See if the above helps you to adjust the dose but keep your counts at best level for you.

Please feel free to tell me how it goes.

XMairead

[Hidden]

Hi Poppy, I think it’s disgraceful if your doctor wants to change your dose just for the reason of being ‘cost effective’, when the present dose is working well for you. Surely the patient’s well being comes before financial reasons?

If it were me I would decline the change, or, if they insist and the higher dose doesn’t suit you, insist you change back to the lower.

[JackLina in reply to Hidden]

I couldn't agree more. They may not know much about this but show some respect, please. Don't use us as guinea pigs to further your own knowledge! ATB

[Susana7]

Hi Poppy, If your bloods have normalised then I would have thought it is time to try spacing out the injections at the same dose and see if the bloods remain stable. I went from 90mcg weekly, to 45mcg weekly, to 45mcg every 2 weeks, and currently only every 3 weeks. Ultimately you have the syringe and can determine how much you inject. When I switched to injections every 3 weeks I actually decided to inject 65mcg for quite a while (rather than 45mcg as prescribed) as I was concerned the platelets would rise. My doctor said that was fine. So maybe try an intermediate dose of 65mcg and see if the bloods hold and the side effects remain minimal. All the best, Susana

[charl17]

I live in the US and I use a 180 mcg vial. I started on 90 mcg every two weeks and went to 90 mcg weekly. I would not worry about side effects too much. Try it once and see what happens. I too am curious about why they wouldn't try going to 45 mcg every two weeks in your case since your counts are normal.

[Poppy6060]

Thank you so much for all your replies they have been very helpful it is a sham doctors after all there training have to talk money and these drug companies should be more flexible and maybe talk to the doctors more I am going to ring the hospital on Monday has this this clinic day and talk to my specialist nurse about this change and has sasana 7 said maybe just up it a little every two weeks will keep you posted

Poppy

[Tico in reply to Poppy6060]

Hi poppy, i entirely agree with you and others that it is shameful that cost always seems to determine our treatment and as jacklina remarked, in essence we are being used as guinea pigs and we feel we have no choice.Best of luck poppy and hope if you have any side effects they are minimal. Best wishes,tina,x🤗

[Poppy6060 in reply to Tico]

Thank you Tico for your reply I know I am lucky to get the Pegasys has some don’t but it’s not our fault that they don’t make in smaller doses and I don’t feel happy about taking a higher dose hope you keep well

Poppy

[charl17]

Well, here is an interesting update on my Pegasys. I saw my specialist at Moffitt in Tampa yesterday. Platelets 275, Whites 7.2, Reds 5.5, Hematocrit 47.4. He increased the Pegasys from 90 mcg/week to alternating 180 and 90. He wants my hematocrit below 45. Well, I did it last night and aside from some difficulty falling asleep, I feel fine. I was anxious and we are doing the spring time change this week. Good luck to you with the higher dose.

[Poppy6060]

Hi Charl17 thank you for your reply I hope you are still well has your dose is high I wonder if because we are already on the drug it makes the higher doses better well let’s hope so my red cells were always 47 but have comedown to 41 my doctor likes it to be below 45 hope this change works for you and then you can lower it again to 90 mg a week our clocks go forward in a couple of weeks so looking for to spring we are getting very bad winds at moment I have been to Florida a few time it’s my favourite place but feel nervous to fly there now with PV had bad experience on a short flight my vains all burst was very painful and worrying while in Italy I wish you well and hope all goes well

Poppy

[charl17]

Poppy, so far so good with the increase in Pegasys. For me the 180 was easier than the first 90. I slept better last night as well. It beats the alternative of phlebotomy which was offered to me by my Moffitt specialist. I was surprised that he (Dr. Rami Komrokji) was unwilling to give the hematocrit more time to drift down to 45 but I trust his judgment.

[Poppy6060]

Hi good you feeling well and slept better it’s not good when you can’t sleep and all sorts go through your mind I hope you stay well and this change works for you have a good weekend best wishes

Poppy