Possible side effect?

[dogsandhorses]

I started Pegasys just about 2.5 months ago. Dose 45 mcg. per week. No real side effects. Then just increased to 60 mcg. per week. Injected on Friday, and Saturday felt sore throat, difficulty swallowing, swollen feet, and labored breathing. Also super gassy and diarrhea. Are these side effects that are expected, and will they go away after a time? I don't see the Dr. for another week and a half. Maybe I should wait on further injections until I see him? Any advice?

[Exeter21]

Probably doseage too high to start on. I was put on 45 weekly & felt awful I only slight build 6o kgs. I contacted MPN & immediately told to come off it . 6 weeks off then to start on 30 monthly then 45 monthly past 18 months & no side effects & bloods in range. No plans to increase me. Low & slow is MPN instructions & they are experts on our disease . Julia UK 👌

[dogsandhorses in reply to Exeter21]

Thank you for the response. I'm super sensitive to ALL drugs, so probably this as well.

[HazeBlue in reply to dogsandhorses]

Might just be coincidence and you had a bug . Ring heamotology for advice .

[Anag in reply to dogsandhorses]

We sensitives have to really take care of our basic health and make sure our liver and kidney remain as happy as possible. Usually 1/2 of what others take works for me and I'm not skinny. ; )

[ainslie in reply to Exeter21]

Great info 👍

[Spanelmad]

I would contact your Heamatologist that's a lot of sudden side effects.

[dogsandhorses in reply to Spanelmad]

It's a holiday weekend. I will contact him as soon as I can, and no further injections until I do. The generalists that staff the ERs would not have a clue what to do about this unusual drug, so I sure don't want to have to go to the ER. Don't feel as bad today.

[RedCardRob in reply to dogsandhorses]

If you have access to a phone, call them and leave a message. At least you will be further up the queue in the voicemails which could be longer after bank holiday weekend.All knowledge I gather from this forum is that everyone is different and you could have differing conditions, i.e upping to 60mcg, but I was told when diagnosed that forgetting to take even two injections would be okay so you could even wait until you get a reply. I was started on 45 weekly.

[monarch5000]

I have 8 years experience with Pegasys and am not a doctor, but have never heard of a mere 15 mcg increase in the dose causing such intense effects.

[67Newlyn]

You need the advice of your consultant/ haem specialist nurse. If you haven't been given an out of hours haem emergency contact number for your area then ring haematology first thing tomorrow.

You need to speak to the experts who are treating you and who know your case.

[DottyDaisy]

Hello DnHWe've talked a lot on this forum about how to start with Peg.

What worked perfectly for me was 45 every two weeks. Within a few months I was down from ±1000k to under 450k. And after 10 months, on the day of my very successful hip replacement it was, l think, 330k.

The general conclusion seems to be: with Peg, always start low and slow, and don't rush to increase the dose because it doesn't always get immediate results, and even a small increase in either dose or frequency can trigger a disproportionate increase in side effects. Which is exactly what seems to have happened to you.

Warmly, Daisy

[dogsandhorses in reply to DottyDaisy]

Thank you Daisy.

[AndyT]

I suggest you get those symptoms checked out asap in case it’s something else causing them. It seems odd that such a small increase in dosage would cause such a dramatic change if you’ve been tolerating Pegasys well until now.

I’ve been on Pegasys for about 9 years with no significant side effects at up to 90mcg weekly.

[ainslie]

we can’t really advise but if it were me I would keep off injecting more until you speak to your doc on the phone which should be asap

[DougyW]

What we're your white blood cells like at your last test. Peggy can reduce your immune system. Do you have a temperature? If so may be worth a trip to A&E. Get in touch with your Haemo nurse today.

[Mike1974]

Hi. That sound as if it is linked to the injection and a severe reaction.I am interested in this because I am starting peg tomorrow at 45 per week for 2 weeks then he wants to increase it to 90 per week for 2 weeks then up to 135 there after it seems as if he is pushing it up quickly and most of what I can see here is low and slow .

Anyway I will know more after tomorrow.

Thanks for all the great advice and comments on here.

Mike

[dogsandhorses in reply to Mike1974]

I think so, too. I've had discussions with my Doc about the dose, and talked him in to the 60 instead of up to 90 after 4 weeks. I am hoping he will let me go back to 45 for awhile after this reaction to 60. My platelets have gone down from 1050 to 735 in 6 weeks, so I think we are getting there. Just needs to take a little longer to reach optimum results.

[Mike1974]

Good that they are going down,I went in today to start peg and I got my bloods done and I feel good,Its 5 weeks ago since my platelets were over 1560 and when I got down to the nurse she told me I was up at 1713 today.

We had a chat and she said we should go with the 45 and she showed me how to inject myself and got me to do it and I was surprised how natural it felt doing it.

Just hoping for a drop in numbers in the next few weeks and bump up to 90 on the 13th of June.

Hopefully no bad side effects now.

Thanks.

[dogsandhorses in reply to Mike1974]

The nurse at my Hematologist showed me, and had me do it as well. It really helped me. Have had no problems with the injection except slipping when I pulled the cap off the needle one time, and cut my finger. despite putting alcohol on it immediately, it swelled, and was very red for about a week. I've since learned to put my wrists together when pulling off the cap to prevent the rebound effect.

I sure hope Peg works for you as quickly as it is for me. I am 5'8" and 112 pounds, so side effects are probably more pronounced with me, and I also react to almost all drugs.

Best of luck to you.