Been to the hospital today and have been changed to pegasys. First injection tonight. I am a little worried as I have been started on a dose of 180mcg/0.5ml weekly and am concerned this is a high dose to start with and the side effects which may come with it. Anybody on pegasys what dose are you on and what did you start on? Any side effects? Any tips with the pen injection? I appreciate everyone is individual with differing counts etc just determined to try and make this work better than the Roferon A did. Look forward to hearing from you.
Jen
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Poppy112
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Thank you really want this to work, given 1st injection tonight, very painless compared to the needle and syringe of Roferen. Taken paracetamol so fingers crossed.
Sounds like you are most fortunate from the view of those of us antipodeans...
In Australia, 'pegasys' is still waiting to be made available by our PBS scheme, which reduces the costs due to government subsidies etc...
Our Therapeutic Goods Association (TGA), has approved it, however, the Prescription Benefits Scheme is yet to give it a price, and as our current government has recently announced its next budget, (& pegasys didn't figure in it?), safe to say that we here in Oz will still be waiting a tad longer before we can also gain from the benefits of pegasys being available.
Canada is the same Steve. I have asked for it - I think if I had insurance that would cover it I could go on it - but its a no on that front also. I am told 2 things as a reason, a) you don't want to take it it makes you feel like you have flu, and b) its not clear if there is a benefit from it. However, bottom line it seems to be the cost.
Hopefully, Canada's system will also change into the future.
While Interferon per say, does have some flu like side-effects, it also seems to provide the best overall outcomes... or so says most of the marketing that I have listened to or read about thus far...
Hi, I was on Pegasys last year starting on 90 and my dose went up every couple of weeks until the dose was 270 for a long time as my consultant just kept putting it up. At that dose I felt really unwell. He didnt seem to understand that it's a slow working drug. He now says he realises he fiddled with the doses too much and should have been happy with what it was doing! So I've just started again at a dose of 90 hoping desperately that it will work! I use syringe or pen whichever they give me. Good luck! F.
That's reassuring that somebody was on this dose, I will see how it goes, gave 1st injection last night as so far no side effects, fingers crossed. Good luck on re-starting on 90 and I hope it works for you
Yes I asked for the pen, are the lower doses not pens? Not sure how it works? Took paracetamol after shot last night and feel fine this morning. Fingers crossed.
Where I am the pens are only 180. If you have 45 or 90 they are in preloaded hypodermics with separate needle. I find these very easy to prepare and use.
I started on 90 for a couple weeks then 135 for a few weeks and now i’m on 180. I find it is fine but it does take a while to get hold of things. Very few side effects other than sometimes I feel a little bit down and tiered. Usually after a good nights sleep I am find again. I think 180 is a higher dose than most people have to take as some people’s blood counts can be managed fine on just 45. But my consultant tells me that for more proliferative cases, a higher dose is needed. She also said this has no bearing whatsoever on the progression of the condition. It is just about managing the numbers and related side effects for each individual case.
Best of luck with it and look forward to hearing how is goes.
The other thing is make sure you are always drinking plenty of water. I drink at least 2.5 litres a day - if I don’t then I do start to feel a bit funny.
Dear Jen, that is a huge dose. Are your counts extremely high or your disease very aggressive? I started at 90mcg when my platelets were 1.5 million, and HCT 0.50, and reduced to 45mcg 10 months later. Now injecting only every 3 weeks. Most people start at 45mcg or 90mcg - it is a slow acting drug, needs time to work. We need to take it for life so should not be on high doses that are unsustainable over long periods (180mcg is the dose given for hepatitis patients who only take it for a short time). Are you seeing an MPN expert, or a haemo with experience in MPNs? If I were you, I would query the dose with your doctor and ask to reduce if you don’t have a satisfactory explanation. Good luck. Susana x
Thank you, yes I am seeing a MPN specialist I have just changed from Roferon Interferon. My counts are now controlled although I am about to fly on holiday. I didn't get a choice on dosage but will query it. Do all pharmacies and hospitals stock the different doses? Just got the impression that this was the only one and I am under a large hospital trust. Difficult at time of appointment as all these questions happen when you get home. I assume pegasys worked very well for you on the lower dose when your counts were high. How long did it take to bring them back into normal range?
I use the Pegasys pre-filled syringes (from Roche). My hospital only gets the 90mcg syringes, so I discard half the contents and inject 45mcg. The syringes are pretty good as they allow us to control the dose. I was 10 months on 90mcg and then switched to 45mcg - I started having hair loss after 4 months so was keen to reduce asap! It took about a year for platelets to go under 400. All counts have been normal since then. I really don’t understand why you were prescribed 180mcg if your counts are under control from your previous Roferon treatment. I’d say S omething to query at your next appointment! The higher the dose the higher the chances of developing auto-immune conditions, liver and thyroid problems, depression, hair loss and so on - so the advice is to be on the smallest possible dose that works, even if it takes months to work fully. Even at 90mcg, I had temporary hair loss and frizziness (for 5 months), developed a very sore mouth (which turned out to be an auto-immune condition lichen planus which now also requires monitoring...), cotton woool spots in one eye (now gone) and elevated liver counts (they are still a bit high on and off). All fairly minor but irritating... Let us know what your haemo says. In the meantime, enjoy your holiday! Susana xxx
Oh please don’t be scared! The problems I described arise with longer term use. I had no immediate side effects, just things that arose over time after a few months (like the hair loss). So it is good that you checked with your nurse now, at the beginning. There may be a good reason why they put you at that dose, and maybe it is just for a very short period - but it is important to check and understand given that it is unusual. I am UK based, attend a local haematology clinic in Hertfordshire (where they see other MPN patients) and also see an MPN specialist in London. X
That's a high starting dose. Pegasys is slow acting and you will do better if you start at a lower dose and build up to 180 if necessary. I am at 135 mcg per week but i started at 90. When my doctor bumped me up to 135 after 2 weeks I got real sick so I demanded to go back down to tolerate it and I did. I barely have any side effects. Good luck!
Thank you, yes did think it was a bit high and as I have changed from Roferon Interferon due to side effects feel it might do the same thing due to high dose. I have sent the specialist nurse a message to query the dose. Glad it is working well for you
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