Pegasys update

[Graham7694]

So after 8 weeks on 45 Mcg Pegasys my platelets are down to 420. Pre starting Peg they were at 820.

Not an easy journey starting the meds but a whole lot better for me as Ruxolitinib and Hydroxycarbamide hardly touched my platelets

Regards

Graham

[mhos61]

Hi Graham.

I’m really pleased for you. Those results look great, hope it continues this way for you.

Mary

[Tico]

Hi Graham7694. Yes those results are very impressive and I was very interested in seeing them as myself and my Haematologist have spoken at length about Pegasys in the past as an option for me if my platelets keep behaving erratically in the near future. Since I was last over the Q/E i've had a blood test at Gps and platelets jumped 200 more than last Haemo visit but still in range. Over the Q/E this Wednesday and hoping for no more big jumps, as I would not even entertain a change of meds this close to Christmas because of the risks of side effects that could ruin my Christmas with my Family, especially the fun I would have with my young Grandchildren. Anway Graham I hope the trend in your blood results continue. Atb,tina.🤗

[Graham7694 in reply to Tico]

Hi Tina

Are you seeing Dr Hussein at the QE?

Graham

[Tico in reply to Graham7694]

No Dr Raghavan, I was due to see Dr Hussien last time but didn't for some reason. Atb,tina.🤗

[Graham7694 in reply to Tico]

I haven't seen Dr Raghavan but would heartily recommend Dr Hussein. He is an amazing doctor

[Peak-Moves]

Hi Graham, that looks good, I’m on a similar journey. Taken 7 doses of Pegasys since mid August, initially 45 mg per fortnight, now 90 per fortnight. Platelets now at 420, but the Haematologist wants them under 400. Are you getting much in the way of side effects? I can’t tell - not much within 24 hrs, but certainly have some ups and downs in the 5-7 days after taking it. Not sure whether to blame the meds, the ET, or the stroke Ive had that pointed to the ET!

Hope your good progress continues.

[Graham7694 in reply to Peak-Moves]

It is hard to know what are side effects and what are symptoms 😊

[JackLina]

Great, isn't it? I have every side effect going with this Pegasys but it's brought my levels down to within normal range and for that I'm so grateful. I too am on 45 mcg and mine came down to within normal within a very short period of time.

It was a godsend really because the hydroxyl was killing me. I only managed a couple of weeks before I felt closer to death than anything!!!!

i# hope you keep on improving. All the best. P

[Graham7694 in reply to JackLina]

I think the side effects are shorter than HU and at least I get some of the week feeling good 😊 I can't understand why more hospitals are not using it.......

[JackLina]

Hi Graham

I think it must be the cost and also, some don't have the permission to issue it in their areas. I just had to stop taking the HU due to the side effects and my haema asked what I expected to take instead. Having done a lot of research re my specific age, condition and historic stroke and TIAs, I told him Pegasys was the recommended drug. Although he tried to put me off he did prescribe it but at 180mcg. That never happened! I further explained my sensitivity to drugs of any kind and suggested 45mcg. , a dose he had never heard about and insisted it would do nothing. Happily, he allowed me to do just that. I have never taken more than 45mcg and now I have just gone down to fortnightly doses.

I did visit Mr Butt in Liverpool between HU and Pegasys and he told me he was not allowed to prescribe Pegasys. It seems extremely unfair, doesn't it?

I couldn't believe that having described the effects of the HU, my haema had said, 'so, are you going to give it another try? I have hundreds of patients on this!' Thankfully, I am not one of them. All the best P.

[Graham7694]

My local hospital were not open to discussion on Pegasys and yet I was prescribed Ruxolitinib which is far more expensive. The reasoning behind no Pegasys was that it is too harsh....... Hydroxy was not kind to me and I think Pegasys is far better. There are lots of people out there that are benefiting from the drug and many who are not getting the option. A sad world