Second Pegasys injection and I’m weak as a kitten!

[Wewo01]

Update/

I took my second Pegasys yesterday evening. I sweat ALL night long. I feel fatigued and so weak. Also had a headache and some nausea last night. I have planted myself on the couch, today, and am depending on my husband to keep refilling my water glass. I am hoping this passes by tomorrow, when I go get my PICC line removed. I don’t think I could walk more than 50 feet today! Ugh!

I’ll keep going and take my next dose and see what happens.

Hope you all are doing well! Picture is of Smudge. I rescued him on his first day on this planet. He is 5 weeks in pic and just made 6 weeks, today.

Kim

[EPguy]

I wish we could all be so comfortable like Smudge.

You could be having the flu-like effects that are known when starting INF. That effect is supposed to get better with time. But if it gets worse you might want to seek Dr's advice.

I'm at month 4 on Bes and I do get some fatigue still that I didn't have on HU. Overall for now I prefer the Bes experience over HU. But yesterday was not good, still so much variation.

[Wewo01 in reply to EPguy]

Thanks for your reply! I tried for Besremi but insurance denied, twice, because I had not tried Pegasys. Now it’s trying me!

[EPguy in reply to Wewo01]

I saw your cardiac history. Is your cardiologist closely involved in the PEG journey?

I see you've also had phlebotomies for HCT, that's usually part of PV. Did you ever get your BMB results explained? The lab that did it might have notes worth looking at also, mine did. If you want the possible option for Bes you should insist on clear explanations for your Dx of ET rather than PV since, while it might not change your actual best treatments, it does affect insurance access to Bes.

For now I hope you can just rest and feel better, let us know how it's going.

[Wewo01 in reply to EPguy]

I reread my BMB and the NGS panel, yesterday, and also another lab test where the pathologist said that due to my low EPO that PV should be considered in my diagnosis. So end of November my specialist did say I had PV but also that with my high platelets I had ET. I don’t remember his exact words… My Cardiologist is not following that I am aware. You bring up a good point and I probably should message him that information.

My local hem/onc doctor has a big ego. She is my 4th local hem/onc and I am sticking with her because- well, I just don’t have it in me to start all over with a new one. I need to have a talk with her.

Thank you for you input! Much appreciated!

[EPguy in reply to Wewo01]

What does your BMB analysis say? Seems your Dr has discussed only your blood work with you. Also, any details in your NGS?

Low EPO is a minor PV Dx criteria. But in my recent post:

healthunlocked.com/mpnvoice...

ET can often have low EPO so if other things point to ET low EPO alone would not force it to PV. But conversely, PV can have high plt too and that alone is a strange reason for ET Dx. Seems your Dx is now the blend of ET/PV.

My cardio and MPN Dr are in the same system so they can see the records, and I did discuss MPN details with cardio. They share a wall in the building but don't hang out together. Cardio guy is more easy going, but cardio field is also less filled with uncertainty.

Ego is not convenient, agree you need to ask more questions, my problem is using up Drs with too many questions.

[Wewo01 in reply to EPguy]

Honestly, none of my Dr’s have reviewed my bone marrow biopsy or NGS with me. I know my allele burden is 17.9

[EPguy in reply to Wewo01]

After the discomfort of a BMB you deserve a review with Dr. To be fair, I didn't get a review either till I asked about the item below... My official Dx remains PV and my Dr said MPN is a continuum as we've heard. It seems each of us in not in the easy-to-figure center spot of the MPN type.

My BMB analysis had tech details and this in a Comments section:

"The findings are consistent with a myeloproliferative neoplasm, and suggest essential thrombocythemia (ET). "

Does your report have any comments?

NGS should have clear yes or no results for any other mutations.

AB of 17.9% is not too high, similar to mine, typical of ET, but PV can be in this range too.

[Barbiebreath]

I hope you’re feeling better soon. (Hugs)

[Wewo01 in reply to Barbiebreath]

Thank you! 🤗

[monarch5000]

If I were in your shoes I'd reduce the dose to 30 mcg per week to see if side effects diminish after 2 - 4 weeks. If they do, then move up to 45 mcg. If they don't, then maybe you'll have to discontinue the drug and try Jakafi instead.

[Wewo01 in reply to monarch5000]

Thank you, Monarch! I really want one of the interferons to work. I was on HU for a year and ended up with skin cancer and so many actinic keratoses! Jakafi makes me nervous.

[AnBee]

When I started Peg I was very sick with it. I started at 90 mcg weekly. All the same symptoms as you. I was told by my specialist to take 2 paracetamol before the injection, then 2 every 4 hrs with taking no more than 8 Tablets per day. This advice was a life saver for the side effects. I eventually went down to I think it’s 45mcg every 3 weeks and still need to take a few paracetamol on some days but not often. I found being very well hydrated with 2-3 litres of water on days before and after the injection and walking each day seems to have helped a lot also This helped dramatically to cope with all the side effects. My specialist was ready to keep dropping the dosage to a level I could cope with and stabilize there and now all my bloods are in the normal range except platelets at just below 700 which she is fine with that is because I am Calr genotype. I take no other meds.

Good luck

[Wewo01 in reply to AnBee]

Thank you for your reply! I appreciate everyone here so much!

[ciye]

I have just reduced my peg down to 90 from 135, because of the nausea and fatigue. Haemo won't be happy she wants me to add HU which I am loathed to do. Have a face to face next month so will see what bloods are like then. Need to strike a balance with meds so they are doing more good than harm.

[Wewo01 in reply to ciye]

Thanks for your response. Hope your Dr isn’t too upset!

[EPguy in reply to ciye]

Did you reduce dose on your own? I got in trouble doing that last month without 1st telling Dr. One reason I did was to know if I could get CHR on the lower dose.

I understand the conflict between dose and misery.

[Wewo01 in reply to EPguy]

Because I know I am dealing with ego, I did message her, first. 😁

[ciye in reply to EPguy]

I just did it, been feeling so rough, I know I should speak to Dr, I am only taking Clopidogrel, Lansoprazole and peg so I believe the peg is the culprit. I have stuck with it as HU not for me.

[Wyebird]

Are you worse than after your 1st jab? You never know you might have been under the weather and the jab has made things worse. I used to give myself a bed date. The side affects grow less and less with each jab. Even 10 months on I choose a time in the day to suit me. Ie if going out in the afternoon I’ll take when I come back, that’s

If I can’t keep the day free.

Now I think I’m ok but apprehension still lingers. Give yourself time. Maybe a reduced dose is needed - good luck

[Wewo01 in reply to Wyebird]

I did not have the weakness with the first one. I think, as has been suggested, that I will go to 45. I did 70 this time.Thanks!!

[Wyebird in reply to Wewo01]

Hope that works but once I had a really bad time with one of my doses good luck

[Wewo01 in reply to Wyebird]

Thanks, Wyebird! Hope you are doing well.

[Hopetohelp]

I would definitely talk to haemo about taking it slowly on lower dose to begin with to help body get used to peg. Absolutely love Smudge. Adorable 🐕

[Wewo01 in reply to Hopetohelp]

Thanks! Smudge keeps me on my toes!

[hunter5582]

Good wishes and hoping you are full of pepe and vigor soon.

[Wewo01 in reply to hunter5582]

Thanks so much!

[Aldebaran25]

Hi, I have no advice regarding interferon (I am now on HU and planning to start Pegasys in September), but I love the kitty! Hope you sort out your dose and get less side effects. I am following to learn from others, pls keep us updated. All the best!

[Wewo01 in reply to Aldebaran25]

Thanks so much!