Back on Peg..Any tips?

[IrishSarah]

Finally bit the bullet and took first dose of peg last night after a 14 month break. Man I forgot how rough the hangover can be 😅

In such a (relatively) short space of time I’ve forgotten all of the tips and tricks that make side effects a bit easier! I did the paracetamol & inject right before bed but didn’t drink enough water 🤦🏼‍♀️

Any tips for joint pain?

[hunter5582]

Aside from good hydration, which is important anyway, the tips vary by person since we all react differently. I have no immediate reaction, so I prefer to do the injection first thing in the AM. The main side effect has been itching, which is well controlled with a daily Claritin. I also do what I can to boost my immune system since WBCs are a bit suppressed. Other than that, it is tally ho and carry on.

I expect PEG is like riding a bike. It will all come back to you quickly.

All the best.

[Hidden in reply to hunter5582]

Pleased you doing good Hunter and know how helpful and clued up you are can I ask question to you and other MPN buddies please. I have had weekly interferon jabs, a low dose of 45mg weekly, for 4 months now but my bloods now showing raised liver enzymes AST and ALT GP is arranging scan and further bloods, me anxious now. My haematology team not really taking much note of this, only looking at platelets, 489 from 220 and to continue peg, but I seen interferon can cause liver failure aahhhh Any tips to help liver ?

[hunter5582 in reply to Hidden]

I experienced the same thing periodically with Besremi. Elevation in Liver Function Tests are common with the interferons. The label for Besremi indicates that no action needs to be taken until LFTs = 5X Upper Limit of Normal. My LFTs never reached more than 3X ULN. Therefore we did not make any changes, just continued to monitor. WHen my HCT crept up above 45%, it did mean a venesection rather than an increased in Besremi over 150mcg.

My initial approach was to simply be kind to my liver. Maintaining good hydration and limiting alcohol. I also consulted with my Integrative Medicine doc, who recommended a Milk Thistle extract to support liver function. My LFTs have now returned to Within Normal Limits. (Note: some docs will say that Milk Thistle will not help).

For those who wish to consider complementary health interventions, a few suggestions. Supplements are not well regulated. Some are worthless. Seek expert guidance on obtaining quality supplements. Also seek expert guidance on what interventions may be appropriate. Most Western-trained providers are not trained in complementary health interventions. They are understandably reluctant to recommend something outside of their scope of practice. That is why I consult with an Integrative/Functional medicine doctor. It is important to bear in mind that anything that is biologically active enough to help you can also hurt you, and interact with things.

For anyone who wants to consider complementary health interventions, suggest seeking expert guidance. Some hospital oncology center now use Integrative Medicine specialists. There are also Integrative and Functional medicine doctors in their own practices.

Functional Med - Worldwide ifm.org/find-a-practitioner/

Integrative Med - USA fonconsulting.com/resources...

It also helps to do some checking on your own. Here are two useful resources.

reference.medscape.com/drug...

mskcc.org/cancer-care/diagn...

Note: I always inform my entire care team about everything I use. I always check on the potential for interactions with everything I take using my own resources too.

All the best.

[Solyesh in reply to Hidden]

Hunter, as always, provided great feedback/advice. I too faced elevated liver enzymes on Peg. I was initially on 180mcg every two weeks. After about 6 weeks, my liver started to complain (high AST and ALT readings). The readings reached about 2x upper limit. My MPN specialist suggested we take a break from Peg and see if my body could bounce back. I took a month off (during which times my platelets jumped 200 points). I went back on Peg at half of my initial dose (so 90 mcg every two weeks). My liver responded well and the readings, which had fallen as soon as I was off Peg, stabilized. I have now been on that dosage for about 8 months and liver readings are 100% normal. My MPN specialist said he often sees liver sensitivity issues "self-regulate" over time as the body gets used to the interferon. He also suggested that I work with my GP and look to perhaps incorporate milk thistle. He said there was not definitive proof that it helps in these cases but he had seen positive anecdotal results.

[Hidden in reply to Solyesh]

Thanks for lifting my anxiety with your contact, its great to hear good news stories So happy for you too that you are doing well I think I would prefer fortnightly injection too, what do you think Hunter, have you noticed any evidence of fortnightly helping ? THANKS again Solyesh

[Hopetohelp]

I take my injection mid morning and that gives me lots of time to drink plenty of water. You can’t drink when you are asleep😂. I believe this flushes out the kidneys. Not sure about the liver. Good luck

[RazB]

I can seriously empathise with you IrishSarah. I’m not sure I’ve felt that ill ever before. My consultant (Claire Harrison, my hero) has advised me to come off Peg for a month after 4 weeks of feeling really grim. I only had 2 shots, 4.5, every other week. I consider myself quite tough mentally and physically (father a Marine, say no more!) but Peg floored me in every way. I’m taking this time to think about whether I really want to continue with it. Hope you can find a way forward with it. X

[Exeter21 in reply to RazB]

I was the same & reduced to 30 monthly at present to let body adjust to it. Platelets rising slowly but on my weekly 45 dose they came down but I felt very ill on weekly doses. This is much better. However I don’t drink alcohol anymore as even the smallest red wine leaves me giddy & just not worth being ill for . 👍

[RazB in reply to Exeter21]

Thanks Exeter21, that’s interesting. I may try that smaller dose less often too. And yes, sadly the love of vino has had to go, as you say it’s just not enjoyable or worth it. X