What the heck

[jillydabrat]

Am I crazy. This is what I have been prescribed and why I am so ill. This is 4 times the recommended starting dose.

[Helpatlast]

It does seem a very high dose - usually start is 45 mg for MPN - they do tend to dispense high dose pre filled syringes as smaller ones are not made - mine are always 135 mg and I have to dispense to my required dose of 45 or 90 when it's upped. I do hope your dispensing person didn't miss off an all important instruction to do the same to a more usual dose amount? Defo you need to check with your consultant as soon as poss

[JediReject]

Hi Jill , just caught up with your posts , hope you get sorted when you ring up because although I've no experience taking Peg I am aware as others have said this starter dose is significantly misaligned with the recommended for PV/ET. No wonder you're suffering badly. Please let us know how you go on.

Chris x

[jillydabrat in reply to JediReject]

Hi Chris, just phoned the consultants secretary and my consultant is in a meeting right now but she is going to get her to call as soon as possible. I got worried that I had read the dispensing label wrong but no, it states to take the 180 mg on the same day every week. Someone has made a mistake somewhere, it’s just finding out who. I didn’t get any sleep till 5 this morning and I still feel terrible. Thanks for your comment my friend x

[JediReject in reply to jillydabrat]

I must admit to being concerned for you when I saw your dose , I think it sticks in my mind because I've seen many posts about Peg on here and discussed it once with my Hem many moons ago and I recall 45mg as a start point. I'm sure you will sort it , , x

[jillydabrat in reply to JediReject]

Unbelievably Chris my consultant has just called and tried to tell me that 180mg is a mid range dose. When I told her I had read the guidelines for PV patients and the starting dose should be 45 mg I was spoken to like I didn’t have a clue what I was talking about. She told me that the dose could be as high as 360mg!

As I have lost all faith I have refused to touch it ever again and have gone back to Hydroxy. I would much rather put up with the side effects from that than Interferon. If I had a choice of local specialist I would change but there isn’t one.

[JediReject in reply to jillydabrat]

Well with your feeling the way you do I would think best to start low on a new drug and build , why potentially take 2,3, or 4 x more than you need to control symptoms and bloods. It happened to me with a migraine tablet called Imigran /sumatripan . Doc started me on 100 mg tablet which stopped the migraine but gave me shortness of breath and chest tightness. After a time I asked if there were 50mg ones (pre Google! ) and yes there were so I said we'll please give me those and if one works without the side effects great and if I need to I can pop 2. The 50mg was fine, no migraine, no chest issues.

I'm sorry you've reached an impasse with it , maybe your Hem will reconsider given time to think about or check it when used for MPN more thoroughly.

Hope you're ok , don't let it mess with your head too much , the only one stressing will be your good self. Chris

[Manouche in reply to jillydabrat]

360mcg per week for an MPN patient? It must be a world record. Never heard of someone having anything above 270mcg per week.

[Indigo42916]

Hello,

I agree with a previous poster. They don’t make syringes filled with the typical starting dose of 45 mg, (in the US) also the dose I take. Definitely get clarification. I load my syringe from a vial, and suggest you get schooling on how to load it with the correct dose, if that is what you will need to do.

Best to you.

[jillydabrat in reply to Indigo42916]

Hi, just had the district nurse come to take my bloods and deliver my Hydroxy tablets. She told me that in this region they automatically start at 180 mg. I just don’t believe them. I would love to hear from anybody who is a patient at Janes Cook Hospital on Teesside and is taking interferon to see what dose they started at.

Since stopping the injections my heart rate is coming back to normal, my severe dizziness is abating and my legs feel like legs instead of Jelly. Best of all I am sleeping with only 1 or two wake ups.

I think it’s Hydroxy for me, I couldn’t handle those symptoms any more.

[Tico in reply to jillydabrat]

Hi Jilly, just came across your post and decided to do a search. Their is a post from 4 years ago on here from francesb titled Pegagys dosage. Think it might be of use to you as their are 24 replies to the said post. Their was someone taking 270mg weekly for an mpn, can't remember which one. Hope you find it of some use, but if as you say your having a rough time on it than maybe like you say I would consider going back to Hydrea. Tina.x🤗

[Manouche in reply to Tico]

Well, the starting dose was certainly not 270mcg

[Tico in reply to Manouche]

No,but 1 who replied was started on 180mg, then reduced accordingly. Others actually went up to 270mg and questioned it. At the end of the day everyone as a different threshold and tolerance to medication. I've taken Hydrea for 13 years, I started on 1 500mg daily but before the year was out I was on 3 daily. The highest dose i've ever taken for a period of time was 5 daily,7 day's a week. At the moment I take 3 daily, my choice I might add as my Haematologist wanted to keep me on 4 daily but I refused. Tina.🤗

[jillydabrat in reply to Tico]

Hi my lovely, I have gone back on to Hydroxy at my usual dose of 1000. According to my blood work I was great on the 180 mg of interferon but I could not tolerate it any more. My body is catching up on the sleep I was not having when on the injections. I am fast asleep by 10 which is unheard of for me. Hope you are keeping well xx

[Tico in reply to jillydabrat]

Good news Jill. You alway's have to do what you feel is best for you. Always question it if something dosen't feel right for you and never be afraid to challenge your Haematologist and ask them for their reasoning behind a change of medication or dosage. At the end of the day any decisions should be made between you and (preferably) your Haematologist on board, easier said than done sometimes! Lol. Hope your feeling better soon. Tina.xx🤗

[hunter5582]

That makes no sense at all. Don't blame you for not believing them. Hope others can give you some feedback about their experiences with MPN treatment at Janes Cook Hospital on Teesside.

[EleanorPV]

Dr silver has some good dosing advice for Pegasys. I'm glad you took control. Sounds like the dosing advice your hospital is going with is similar to the advice for treatment off hepatitis. I personally was stated on 45mcg and the highest dose I went up to was 90mcg. Interferon is slow acting and many patients don't show any altered blood results for many months. I was prescribed that box for the first year. I was told to take the syringe down to 45mcg. I'm in Scotland, been on Pegasys since 2016.