Pegasus interferon injection : I have just done my... - MPN Voice

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Pegasus interferon injection

Hughley profile image
23 Replies

I have just done my 7th injection and so pleased to say it went well. I was originally having problems with the prepping but thanks to all the advice different mpners on this site have given me I am feeling more confident now thank you . I have my next blood tests next Monday so keeping my fingers crossed for good results.

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Hughley profile image
Hughley
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23 Replies
hunter5582 profile image
hunter5582

Glad to hear it is going more smoothly. It really is pretty easy once you get the hang of it. Hope your next labs look good. I repeat mine next week too. Please let us know how your results look. All the best.

Hughley profile image
Hughley in reply tohunter5582

Hello Hunter I just wonder if you have any advice on certain foods and lifestyle to combat the side effects that you can get when on Pegasus interferon thank you

hunter5582 profile image
hunter5582 in reply toHughley

I do not know of anything specific to PEG and diet. I would suggest that across the board all of us with MPNs benefit from an anti-inflammatory diet. Pretty similar to a Mediterranean diet. Heavy emphasis on plant-based nutrition, which really is better for everyone.

I will note that I have started a couple of things under the guidance of my Integrative Medicine doc to try to boost my immune system. My WBCs have dropped off on the PEG so I want to help my body fight infections. I am using Reishi Mushroom in tea form and Astralagus in capsule form. We will see how that goes. We have some other options if that does not seem to be enough.

Hope that helps.

Hughley profile image
Hughley in reply tohunter5582

Thank you for your advice Hunter I will try the Mediterranean diet

hunter5582 profile image
hunter5582 in reply toHughley

Good plan and tasty too!

Hughley profile image
Hughley in reply tohunter5582

I have had my results and my platelets have gone up but all others down to a better level. The haematologist has increased my Pegasus interferon from 45 to 90 so I’m hoping that I do not suffer increased side effects.

hunter5582 profile image
hunter5582 in reply toHughley

Hoping for the best for you. If you find that 90mcg is too much, some split the difference and opt for 67mcg. Please let us know how you get on.

Hughley profile image
Hughley in reply tohunter5582

Yes it does seem a lot to double the dose but she said they expected my platelets to go up they are now 590

Manouche profile image
Manouche in reply toHughley

It’s extremely common to double the Pegasys dose, especially between 45 and 90.

Hughley profile image
Hughley in reply toManouche

Yes the haematologist said that they expected to double it I’m hoping it doesn’t cause more side effects though

Hughley profile image
Hughley in reply tohunter5582

I had my results last week and because they have gone up and my hct is 46 I am having a venesection tomorrow one thing I have noticed that I am getting are feeling very down some days have you suffered with this and do you think it will eventually pass thank you.

hunter5582 profile image
hunter5582 in reply toHughley

Not sure if by feeling down you mean depression or fatigue. I have not experienced any level of depression since starting the Pegasys. If anything I feel more hopeful. I have experienced fatigue, but not from the PEG.

I did start to experience fatigue from the phlebotomy-induced iron deficiency. It is one of the reasons I decided to opt for treatment with interferon. I am hoping for less of this as my iron levels come up and hoping my HCT will be well enough controlled by the PEG. The complication is that the PEG can also cause fatigue. So can the MPN. From the timing of when my fatigue began (an the presence of other symptoms, I am pretty confident it was the iron deficiency for me.

It is hard to say whether it will pass without knowing the cause. I am hoping in my case that it will. Fortunately my fatigue has not been too sever and I can push through it when I need to.

Please do be sure to follow up with your care team with what you are experiencing.

Hughley profile image
Hughley in reply tohunter5582

Hello Hunter thank you for your reply I am not suffering too much with fatigue it’s more of a feeling of being more anxious than normal and a bit under the weather.

hunter5582 profile image
hunter5582 in reply toHughley

It could be a reaction to the PEG or just plain feeling anxious with all that you have on your plate. The thing about anxiety is that it is a normal and healthy response to a threatening stimuli. Our bodies evolved response mechanisms to avoid getting eaten by sabretooth tigers and other such predators. Anxiety can most certainly be triggered by illness, injury and inflammation via a variety of mechanisms, both neurological and biochemical. The problem lies when when we are feeling anxious with no threat is present or when the anxiety debilitates us.

Do be sure to follow up with your care team. The good news is that lower grade anxiety can be managed through a variety of means and higher levels of anxiety can respond well to medications or modifications to medications.

All the best.

Hughley profile image
Hughley in reply tohunter5582

Thank you for your very in depth reply I had said to my husband that at least I know what is causing my anxiety a change of medication after 9 years is a big step and I am hoping that I will improve after my venesection tomorrow.

hunter5582 profile image
hunter5582 in reply toHughley

FYI - I have only been on PEG since May. So far it is proving more effective and easier to tolerate than HU. Time will tell but I am feeling hopeful.

Hughley profile image
Hughley in reply tohunter5582

Thank you I hope all continues to go well for you I have just arrived home after having a venesection .

hunter5582 profile image
hunter5582 in reply toHughley

Thanks. Hope you are feeling better too.

Hughley profile image
Hughley in reply tohunter5582

A bit tired at the moment they said that my blood oxygen was a bit low it varied between 92 and 95 but I know it is normally 98 for me

hunter5582 profile image
hunter5582 in reply toHughley

Not uncommon I believe. I expect you will feel better tomorrow when your plasma volume restores itself.

jillydabrat profile image
jillydabrat

Is this a weekly injection

Hughley profile image
Hughley in reply tojillydabrat

Yes I was on hydroxycarbamide and went over to Pegasus 7weeks ago currently on 45

Hughley profile image
Hughley

Still feeling quite tired and very hot I am a bit concerned about my blood oxygen level which the nurse checked before and after my venesection she told me to remove my mask which is mandatory in English hospitals and take 5 deep breaths

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