Pegasys nhs

[Scaredalone]

Has anyone had a problem getting prescribed Pegasys on nhs as a first line treatment at 45? Really keen on this as a starting treatment due to age.

[RoundTheWorld]

Hello. I've been offered Pegasys on the NHS (early 50s). My haematologist initially proposed Hydroxy but was supportive and understanding when I queried this due to age and a relevant skin health history. He consulted with the area's MPN specialist who recommended Pegasys; I don't know whether due to PV profile, age or because of the skin factors (possibly all of these).

The MPN Voice leaflets really helped as I went into the initial discussion already knowing some of the relevant considerations.

Good luck! Let us know how you get on.

[hunter5582]

PEG is the preferred first-line treatment potion for people age<60 due to the long-term risks associated with the other first-line treatment option, HU. In addition, at age 45 you are still considered to be of child bearing age. PEG is less likely to cause problems with pregnancy or fertility.

The issue can be that PEG is much more expensive. Some healthcare systems and insurance formularies prefer to use cheaper drugs. You may need to advocate for your preferred choice of PEG. It should not be difficult since it is a well-recognized first-line treatment option. It should be your decision about which first-line treatment option to use.

nccn.org/patients/guideline...

mpnjournal.org/how-i-treat-...

[Spanelmad]

NHS normally offer HUas first line treatment, so you might have to push. If your not seeing an MPN specialist I would get that sorted as they will almost certainly offer Peg

[hall2]

I’m on Peg and in my late 60s never had any trouble getting it in England.

[gilded]

I was prescribed Peg from the start of diagnosis ( 2 years ago) .

[Scaredalone]

Thank you. My husband is currently having private treatment and thus is what his consultant is recommending due to his age. I’m not sure about the private cover though so was hoping that this could also be prescribed on nhs as necessary (it would be the same consultant as he is nhs too). Fingers crossed.

[NCB1983]

I’ve been on PEG for four year, prescribed and delivered via NHS. They even deliver it to my home.

I guess your bigger issue is NHS footing the bill for meds prescribed via a private consultation. He may need to start his journey again via NHS….?

Good luck

[AndyT]

Some consultants may still suggest you try HU first, not least as it’s a very low cost option for the NHS, but most MPN specialists will offer you Pegasys as an alternative and if yours doesn’t it’s worth pushing for it or seeking a second opinion.

I was fortunate to be offered Pegasys as a first line treatment for ET back in 2015, aged 59, as I was lucky that my consultant was one of the first to support its use. Since then many more have started doing that.

Peg has worked very well for me with great control of my blood counts and no significant side effects. I’m now on just 45mcg every 4 weeks, which also brings the cost to the NHS down significantly.

[Carol0925]

Hi, I age 66yrs was offered PEG or Hydroxy. I chose PEG and have absolutely no problems. I haven’t got PV, just wanted to give positive remark for PEG. Good luck on your journey.

[Gesha]

Had the same problem a while ago. Have to get Pegasus from another country. And right now got some extra if you need Pegasus you can come talk to me.

[PVKween]

I was diagnosed at 42 and had no troubles (although high risk as had a blood clot). I suppose it depends on what trust you’re in (I’m Barking, Havering). Advocate for yourself as much as you can if they’re being difficult.

Peg is the go to treatment for our age etc.

[Lyndjs]

Hi,

I was diagnosed with PV at 58 years young. At 60 my haematologist wanted me to start treatment. Initially he'd talked about Hydroxycarbamide but the MDT team offered me a choice, and I chose Peginterferon after support from this forum. I have had no problems getting these meds in the nhs.

I hope all goes well for you too.

Lx

[Scaredalone]

thank you. Hoping he can start this treatment in the next week or so

[UKZA]

I am with the NHS and was only offered Peg once it was confirmed through a BMB that I had Progressed to MF. I was on hydroxy until then. I wish that I had had a BMB sooner and had been on peg sooner and should have pushed for this. The results mention that it could have been MF rather than ET all along. In answer to your question, my NHS trust only offers Pegasys depending on symptoms and progression. it’s Hydroxycarbomide or angrelide first. Learn to be a pushy patient. Penny

[Leveret20]

Pegasys needed approval from the hospital and the district NHS trust, as I am older, but it was approved after a wait.