Treatment Change, question

[Swim360]

Hi Everyone,

I'm enjoying all of the posts and replies they are really informative.

I'm in the process in changing my medication from hydroxycarbamide to Pegasys.

I'm currently on both whilst still taking the hydroxycarbamide I am introducing the interferon at 45mg every 2 weeks, for 8 weeks, I'm into my 7th week, so far so good.

My Consultant wants me then to go onto 90mg weekly injections, is this the norm?

Best wishes,

Brian

[Solyesh]

Brian

Good luck on the switch. Each of us is different so it really does depend on current stats, treatment targets, medicine tolerance etc.

I believe most of us have heard and try to follow the mantra “go low and slow” - meaning usually preferred to start any medicine at the potential lowest dose and ratchet up if necessary. After my switch from HU to Peg, I started at 180mg every two weeks. Results were good but my liver didn’t like that dose so had to stop for about 6-8 weeks. Liver readings came back into ok ranges and I restarted at half that dose - 90mg every two weeks.

It took over a year to get the dose/timing correct but as I just wrote in another post that after two years on Peg all my bloods were in the normal range for the first time in probably decades.

My MPN specialist reminded me that this is a marathon and takes time, patience and persistence.

Good luck!

[Swim360 in reply to Solyesh]

Thanks for the reply Solyesh,

Everything I read points to low and slow, I will discuss the options with my Consultant.

There is no rush. Did you continue to take HU whilst you were taking Peg?

[Solyesh in reply to Swim360]

I did taper off the HU during the switch - so there was an overlap of about a month where I took down my HU doses..

[ainslie]

maybe worth considering going slower, maybe 45 per week and move up more gradually, however if you jump to 90 weekly and have sides you can go back down and go slower, maybe your doc has a reason to increase faster but with what you have written I can’t see the logic, is there a rush?

[Swim360 in reply to ainslie]

Hi ainslie, thanks for coming back so quickly.

There's no rush, my feeling is the Consultants just work of a script and don't really look at the patient in front of them.

I agree, my feeling is the change in medication should be carried out slowly and just increase the frequency of blood tests to every 2 weeks to monitor for any changes. I could gradually reduce the hydroxycarbamide and allow the interferon to do it's job.

Ideally the smaller the dose the better!

[hunter5582]

Once on PEG-only the norm for is to start at 45mcg weekly, give it time to do its work, and then increase to 90mcg weekly if needed to reach target and if the higher dose is tolerated. As others note, low and slow is often the best approach. Having said that, it is important to keep the erythrocytosis in check (HCT<45%) since it is a risk factor. PEG can be supplemented with venesection to stay at target.

We each need an individualized approach to treating MPNs. There is no one right protocol for all people, Your treatment goals, risk tolerance, MPN profile, actual reaction to treatment, and more need to be taken into account.

Wishing you success with the transition to PEG.

[Swim360 in reply to hunter5582]

Hi Hunter,

Thanks for your response. The HCT is my check, everything else is ok. I agree with supplementing the PEG with venesection. The least amount of drugs I am on the better!

My Consultant is a little bullish so I am going to be having an interesting conversation with her. I don't think she likes having an informed patient!

[Exeter21]

Brian my MPN advised low & slow . I stayed on 45 weekly to start with but too strong so reduced to 30 monthly then 45 monthly. It has worked fine & bought platelets & bloods in range. Taken probably 18 months but each check up I had showed it dropping towards normal.

Haemotology wanted to do 90 weekly originally but I refused as had terrible headaches on higher dosages. Better your body accepts it slowly than rejects it. I was glad I contacted MPN for advice when weekly injections gave me side effects. Now excellent treatment . Julia . UK

[Swim360 in reply to Exeter21]

Hi Julia,

Thanks for your reply. I completely agree low and slow.

I will have an interesting conversation with my Consultant.

The responses I'm receiving are invaluable

[Exeter21 in reply to Swim360]

Yes good luck the information on here is brilliant it certainly helped sort my treatment . Also consulting MPN online was a game changer re treatment 👌

[AndyT]

We all respond differently to interferon but a low initial dose and then increasing it sounds logical.

I hadn’t been on any other treatment previously, so just did a trial Pegasys dose of 45mcg then moved straight on to 90mcg weekly.

Stayed on that for just over 2 years till my counts were all normal, then gradually reduced the dose and extended the interval till I got to a maintenance dose of 45mcg every 4 weeks, which I’ve now been on for 6+ years and which keeps everything on track.

[Swim360 in reply to AndyT]

Hi Andy,

Hopefully I can follow a similar path to you. 45mcg every 4 weeks would be good!

[Janis12]

Hi Brian, I am going through the same process, hydroxy to peg and weaning off the hydroxy very gradually. I am 6 months in now and and since the start of the switch I have been on 45mcg of peg every two weeks. Doc thinks eventually increase peg to weekly at 45mcg, I am a very small frame and I don't think they want to inflict me with a larger dose in one hit. At the hospital today so we will see what those naughty platelets are doing. Best wishes and good luck.

[Swim360 in reply to Janis12]

Hi Janis,

Thanks for replying. It's lovely that none of us are alone here we all have shared and are sharing our experiences.

I'm going to insist I stay on 45mg Peg every 2 weeks and slowly taper off the HU.

As Hunter says we are all different I have a large frame yet given the same treatments as somebody with a much smaller frame. Many Consultant's seem to have a set protocol to follow and won't deviate.

Good luck today I hope your platelets are behaving!

[Janis12 in reply to Swim360]

Hi, good results today so my hydroxy has been dropped to one every other day instead of every day. No change in peg but there is plenty of time to sort out any fine adjustments there. Feeling quite happy with the visit . Best wishes.

[Exeter21 in reply to Janis12]

Janis I was same small build & we had to reduce to 45 monthly it’s been perfect & bloods now in range on peg . Low slow 👌

[Janis12 in reply to Exeter21]

Yes I am going to be quite firm with this issue of the dosage, there has been varied opinions from the docs relating to this but my results at hospital today were good so my hydroxy has been reduced again , to carry on with peg 45mcg every two weeks....suites me.

[william-Indo]

If your result is still good, meaning your are in the right path.what the need to increasing your dose....?Should ask your doc about his/ her strategist.

Btw, congrats to your switch and result.

Cheers

[Swim360 in reply to william-Indo]

Thank you for the reply, and I appreciate your good wishes! all indications from the responses I have had is low and slow. I'll be discussing this with my Consultant

[russkatt]

I started on 45, then 60, then 75 and finally 90. No side effects. My doctor wanted me to double my dose and I said NO. BTW I am also taking both HU & PEG.