I am in Scotland and want to try Pegasys, I have PV and am treated wiht venisections and asprin only., this controls my counts. My haem says NHS guidelines say Peg is not first line therapy and if peopel fail on HU or regular Inf then we can apply to the commitee but I wont get it until I fail on the others and even then it is not very likely. Does anyone else have different experience.
The system in Scotland is similar to England I think.
Hi Optimistic,
I've posted this elsewhere on the site but I am in Scotland and managed to get Pegasys.
Hydroxyurea is still considered the gold star treatment for MPN's in the UK however docs are becoming more open to using Peg IFN as more studies support the efficacy of the drug.
Peg IFN is also relatively new and a whole lot more expensive so some haems are reluctant to prescribe, however if any of the following apply:
>40 years of age.
quality of life is adversely affected by your present treatment.
you want to start a family.......
.....I would say you have reasonable grounds to request Peg IFN.
Hi ETphonehome (I love that name!) can you direct me towards any research that actually supports IFN. I have seen it as preferred drug for early MF but it is only a couple of years that it seemed that many MPN patients on IFN were being switched to HU. I guess these things go in cycles - whatever is flavour of the month, or am I being cynical?
Hi Beetle,
I think IFN has a bit of a bad reputation among clinicians in the UK and for good reason.
I had a horrendous time on regular IFN with various undesirable side effects however I have found Pegasys much easier tolerated.
I would like to think that cost doesn't come into it but IFN is a lot more expensive than HU too so that could be another reason that it is less commonly prescribed.
I believe there are a number of studies out there re Pegasys for the treatment of MPN's but the only one I can find at the mo is:
haematologica.org/content/9...
ncbi.nlm.nih.gov/pubmed/162...
thanks for these links. I am very interested in the use of interferon in post-ET MF after using HU for treatment of ET. I can find no research to support this suggestion that has been made to me and I have major reservations about IFN. Most researchers seem to want patients with no previous complications or treatment so that they can clearly see the results of the particular drug that they are researching - makes sense I suppose but doesn't help me much!!!
if you are on Pegasys, do you inject it youself and if so is it the 180mcg vials, and say you use 45 or 90, is the rest discarded. Glad to hear you are doing well on it
You inject it yourself using the dose required and discard the remainder.
To throw away such a valuable drug is painful but that is the recommendation.
I know of some people who re-use their vials but you are not supposed to because of something to do with the preservative in the drug.
A pharmacist would be able to explain better.
I was initially just having venesections and aspirin but had to move onto medication when my platelet count got way too high.
Although venesections are not fun, they don't produce any real side-effects and I know that I would much prefer to be back in a situation where I didn't need the hydroxycarbamide.
I used to find them very painful and unpleasant but the hospital started giving me a local anaesthetic cream called Ametop. I keep it in the fridge at home and apply it along the vein about 3/4 hour before the needle is due to go in. It's brilliant because I really can't feel a thing!
How often do you have venesections? I was having them twice a week for a while but it then settled to about once a month. Even with medication (which is still not controlling my platelet count and produces side-effects) I still need them a couple of times a year.
Pegasys is quite widely used. Often additional forms are required and even then the application may be turned down. Appeal and even contacting an MP has proved necessary. We are starting a study of Hydroxycarbamide versus Pegasys in newly diagnosed patients in the UK in October, if you would like more information please email me at info@mpdvoice.org.uk.
For patients struggling with Hydroxycarbamide MAJIC a JAK inhibitor study with Ruxolitinib is about to open in 30 sites in the UK. More information about the MAJIC trial and a list of participating centres is available on our website mpdvoice.org.uk/research/th...
When you say an appeal to a MP has been necessary, do we kow if any of those appeals were succesful and what were the circumstances for the appeal to be succesful.
it does depend on the reason Pegasys was needed, sometimes it hinges on the rarity, generally the success rate is 70%.
I have spoken to at least one person who was successful in their appeal for Pegasys.
They too needed the support of their MP and by all accounts it was a long, stressful and drawn out affair.
How Does Pegasy help ET? 
Pegasys!! 
Pegasys
Pegasy 
Pegasys
