Hi everyone, I'm Charlie, I'm 27 and have ET. I've been on Peg-interferon for the last year and I just wondered if anyone else experiences worse symptoms in the few days leading up to their injection. I do my injection every Sunday evening, and from Friday I started to feel a bit off (mainly mild body aches, feeling warm and brain fog). These symptoms get progressively worse over Saturday and Sunday before I do my injection on a Sunday evening. The only explanation I can think of for this is that they're a sort of withdrawal response, as the level of Interferon in my body is slowly reducing in the few days leading up to my next injection. I get the typical cold/flu-like symptoms on a Monday but this is generally very mild and not as bad or impactful as the symptoms I get in the lead-up to my injection. I've asked my Haem team about this before and they weren't familiar with it. I've been having this pattern of symptoms pretty much ever since I started with Interferon so it's not new. Can anyone else relate? It would be great to know I'm not the only one! Thanks in advance.
Pegasys - Withdrawal side effects in the days p... - MPN Voice
Pegasys - Withdrawal side effects in the days prior to injection
Good that the PEG is working if not long enough.
I'm on Besremi INF which starts at every two weeks. I do feel some variations thru the period. But of interest to all of us is INF tends to even out its effect after time, degrading more slowly in the body after a year of use for example. I recently read studies on early INF that showed this. So you would have more benefit remaining thru Friday at some point.
Besremi is intended to go to once/month after the 1st year which matches this leveling idea. Of more relevance for you, we see here some members go to longer intervals on PEG after a while, I think even up to three weeks.
Others here should give you their experience on this, but it's possible your problem will improve with time. In meantime has Dr discussed your dose? Could a temporary higher dose hold up better thru the weekend?
...or maybe slightly increasing the dosing frequency so as to patch over those few days and keep you on a more even keel.
Strangely I have been trying to see if there is a pattern with my peg too. Have started writing down effects as cannot see a direct correlation but have noticed the day before my injection feeling more tired and after injection on Wednesday feeling good and quite awake. Will be interested to see what others say so thanks for posting
I used to feel exactly the same as you during the first year. I still feel extremely well the day of the injection and the following days, although this pattern tend to wear off over the years. All days are now generally good and very similar.
That sounds like good news to me and very hopeful. Thanks
It would wonder if the resumption of symptoms is related to the half-life of Pegasys. As the PEG is wearing off, your body starts to return to the underlying MPN symptom pattern. The uptick in the production of inflammatory cytokines as the PEG wears off might explain some of what you are experiencing.
Suggest you continue to track what is happening and review with your MPN care team. Please do let us know what you learn.
Exactly what I was tossing around in my head- fits the symptom description and relatively short half-life:
" PEGASYS® has a reference half-life of approximately 3 days..."
from:
ncbi.nlm.nih.gov/pmc/articl....
So the level is over half for first 3 days after injection, and then after that it presumably goes down to 1/4 [down by another 1/2] by day 6- so that somewhere between 1/2 and 1/4 the dosage is the lower limit of your 'sweet spot' for symptom relief.
Interesting report in your post. It's for a Brazilian PEG formulation, BIP48. They were looking for longer half life vs Pegasys. It was was 8 days according to their data. This is even better than Besremi at ~7 days. (but data are from very different sources) They got 4.5 days for PEG, longer than the 2 I've seen, and the three you note from prior studies. n was small.
Increased half life was the main goal for Besremi. Maybe BIP48 could have been good, but I think it never was introduced.
BIP48 and Besremi use interferon alfa-2b while PEG uses alpha-2a. Maybe alpha-2b is better for longer half life? I've been looking for why one over the other.
Yah, I was just looking for any reference re: Peg 1/2-life, but you're right- when I re-read it for the rest of the content, it was really interesting- hopefully the longer 1/2-life will [eventually] get it looked at more closely here too- some day.
Random landings are a great source of new info, we find these together.
I suspect Besremi is the longest one we'll see for now at 7 days, they spent 10 years on it with their unique "monopegylation" The Brazilians apparently gave up, likely bec Hep C is now treated with better drugs. We have sort of inherited the INF category that used to be for Hep C.
Hi Charlie - For the first few months after I started Pegasys, I experienced a worsening of symptoms leading up the my pegasys injection day. I assumed the drug was wearing off by the end of the week because my achy joints would kick up and the numbness in my hands would return... I take the next Pegasys dose and my symptoms lessen again. Repeat each week.
I hope the Pegasys does wonders for you. You're too young to have to deal with this!!
Thanks for this - I just wanted to check, do you mean you take your Peg injections early each week? Rather than waiting the full 7 days?
Sorry for confusion. No, I take my dose every Sunday. I notice on the friday, Sat, and Sunday leading up to my injection day that my symptoms are more noticable. After injection, Monday - Thurs I don't have the achy joints or the numbness in my hands. I don't do anything about it, it is just my observations. Hope that makes sense.
Ahhh yes I see! That's exactly like me! I'm wondering if I do maybe need a slightly higher dose as the current dose doesn't seem to be quite enough to last me through the whole week. Thanks so much for your insight, it's great to know I'm not alone!
I have a bit different symptoms than you, but it's the exact same pattern. After about a year Peg, my symptoms seem more controlled all week long now. Has the peg started working for you? It took a year but I'm just getting to normal ranges now, so this effect isn't happening as much anymore. Hopefully, once your numbers level put, this will subside. Maybe you do need a bigger dose? (I'm on 90mcg per week). Definitely see what you doc has to say!
It's really interesting! Yes - my platelets were around 1200 at their highest, and after 7 months of interferon at 30-45mcg they came down to within normal range! I've been having these pre-injection symptoms despite my platelets bejng within normal range so think I'll have a chat with my Haem team and see what they suggest as you say. Glad to hear your platelets have come down too. MPNs are tricky aren't they because everyone has a unique journey but it's great we have this forum to share our experiences
Thanks everyone for your helpful replies!!
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