Went to MPN specialist yesterday and had my first shot of Peg - starting on 90mg/week (I was on 1,500mg daily of Hydroxy). For the time being he is also keeping me on 1,000mg of HU which after my next blood draw we will either drop to 500mg or eliminate completely...of course continuing on baby aspirin daily.
The shot itself was fairly straightforward - chose thigh as opposed to stomach and no injection issues. Super tired last night and very achy but noticed more than anything just how thirsty I was last night and today. I always try to drink but I have been parched.
For those on Peg, if you had SE, were they immediate or did it take a while to build? Initially I was fine with HU but as we increased the dosage the SE become less tolerable..of course now my platelets are best they've been in years (still mid 600s) but as my specialist stated - HU definitely works but not just for everyone and thank goodness we have options..hoping Peg will do the trick with minimum side effects.
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Solyesh
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Hi... I was on H U but it stopped working for me. I was put on interferon and I felt really bad the first time, but subsequent injections where better, I was on 4 a week injections for 4 years. Now I'm on pegylated once a week and its great. My platelets are into the normal range. To keep it at that level I'm on 65ml a week
I was pretty rough for the first 12 or 13 weeks, but not with consistent SE. I think around week 3-7 we’re the worst. Sometimes I felt knackered and flu like, sometimes leg pains, sometimes nausea/gi issues. Significantly eased after the 13 week mark. Paracetamol, loads of water and antihistamines for joint pain all help. Platelets now in normal range, definitely worth sticking with it if you can. Best of luck!
I’m on jab number 8 this week. I felt really tired and had a bad headache to start with at the beginning. Since week 2 my only SE has been that I’m really tired most of the time. If it stays like that then I think I’m quite lucky.Wishing you no or minimal side effects. Good luck
I've been on pegasys for 5 months. I believe my SE have generally diminished some over time but still seem to have an occasional day with fatique, leg pain or general spaciness including blurred vision. My MPN guy started me at 45 mcg and told me they try to go real slow as far as increasing dose for individual patients to counter SE. Just saying, 90 mcg might be a tougher place to start....
Thanks..I have a question into the specialist about the initial dosage...his rationale at the time of the appointment was that he wanted to see if 90mcg will bring number in line - given that I barely had a response at 1,500mg of HU after 5-6 months he felt good about starting at this level and either going up or down as warranted.....I am hoping I tolerate it well
from what I have heard, pegasys is slow to act compared to HU (sometimes up to a year). In my case, that means periodic phlebotomies while it gets going. But maybe for you that will be different. If your tolerating 90 then it doesnt really matter. I was at 45 for 5 weeks and then went to 90 and have stayed there. My MPN specialist doesnt seem to want to go higher as the overall quality of my blood is getting better. Seem to be seeing effect after 4 months or so. I think there is a history with interferon where they started high doses and had major side effects so at least with MPNs, they have found going slow helps with side effects.
I have yet to have any AEs from 45mcg of PEG, other than LYMPH dropping below reference range, but not so low as to be a concern. After a few weeks, my platelets are back in refence range for the first time in a long time. My reaction to PEG is way better than HU as I experienced AEs with HU even at very low doses.
We each respond differently to these meds. With both of these meds how others react only tells you what might happen. The only truly consistent trend is that higher doses mean more likely AEs. That is true for any med.
Hi Solyesh - I just posted a question about Pegasys side effects this morning before seeing your post. I'm on shot #3 - I just started also. I don't have too too many side effects but I do feel pretty tired for a day after and I noticed my joints started aching pretty significantly (which had not before at all). I'm starting on 90mcg a week also. So far, each week I seem to experience the post-injection slightly different. Last week I felt particularly rough since I also had my 3rd covid vaccine also which knocked me around a fair bit also. Best of luck and I hope the Pegasys works wonders for you with little side effects.
Emmyroosky - thanks! Hope ti goes well with you as well! Definitely have felt the achy joints and last night had significant night sweats (never happened before) but hoping that things settle down as body gets used to new drug.
I’m now on week 5 of Pegylated interferon on top of HU for which the side effects at 1.5 grams were not tolerable and my counts were climbing still but have started at half your dose of Peg. I’m also on 1 gram HU but 1.5 at weekends. I have found the side effects are building and at first nothing much except more sweats and thirst. Now I’m a bit dizzy most of the time. I did have blotches at the injection site but these are a little bette, or recovering more quickly. I think it may take a few months to judge whether the side effects are permanent or just passing - I’m hoping the latter as early signs are that Peg is working well.
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