Interferon Alpha

Hi Erica the bad pennies turn back up again I’ve just been diagnosed with covid-19 I’m assuming it’s the omicron because touch wouldn’t thank god it’s been reasonably mild so far I’m about 6 or 7 days or so in and tomorrow they want me to go and have some mono clonal antiviral thingamajig which to be honest scares me a little bit but I’ve heard that covid-19 complete mild and then turn so I don’t want to take no chances I do still miss my fairy princess every single second of the day day but but as my dad is to say is what is sun hope everybody’s well all the best pop

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Oh @Bobby I am so sorry that you have been diagnosed with Covid, I think the thingamajig’s are what we are hoping to get if we are diagnosed with Covid.
Oh, I bet you miss your very special fairy princess so much all the time, that is so natural.
Take lots of special care of yourself and please keep posting how you are doing

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All the best tomorrow and hope it all goes well

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Thank you for your kind words I had my infusion of these new antiviral drug today and to be fair I cannot forward a nurses at all they were absolutely brilliant professional and very very kind but as I said in another post when I spoke to my haematology nurse he said he didn’t know what I was talking about because they haven’t heard that this new treatment in haematology which I thought was a bit strange I wish you all well and may God bless you and if you’re not a believer in any god my you just be blessed anyway

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@Bobby

Glad to hear it went well…

I heard rumours that ecv people could get this treatment should they test positive but wasn’t aware it was in play. What’s even better is you’ve told us and hopefully fellow readers can take note should they test positive and feel less anxious that it all went well… be sure to keep us posted how you’re getting on and feeling.

You’ve definitely made me feel less anxious and less nervous if I was to test positive.

Definitely agree being nicely looked after in hospital makes a proper difference to everything.

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Hi @Bobby I was just wondering how you are doing now?

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Thanks Rammie will do, starting on March 7th, then I have a bowls match straight after, so hoping any side effects make themselves known after that, not during!!
I already inject Methatrexate so I’m a bit blase about the needle thing

Keep well!
Jill

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Fingers crossed too hopefully you have a similar experience to me in that it’s just like taking a pill and everything is left to science with little impact to you carrying on with everything as you are. I know from my experience of taking interferon is never impacted me.

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Rammie, long may that continue I I have my 4th jab (booster) on the Friday before so I’m hoping that it won’t be negated by the Pegasys. Then if I feel OK, I’m off to Las Vegas at the end of March, partly for fun and partly to spread a few of Mum’s ashes as she loved being there when she was alive>

Positive mental attitude required at all times!

x

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Hi @Quercus Las Vegas at the end of March is something to aim for.
I hope the spreading of your mum’s ashes goes as well as can be expected and I am sure it would be just what she would have wanted.
I expect your visit will bring a mixture of emotions for you, but that you also manage to have some fun, it sounds just what is needed after our last 2 years.
Look after yourself and stay safe.

Las Vegas sounds absolutely amazing and much needed I’m sure.

I went to India with my folks to spread my sisters ashes as she loved it there. Sad thing to do but it warms the heart knowing you’ve done something and at a place that has lovely memories for you and them and knowing you’re doing something they wanted.

Think you’ve timed the 4th jab perfectly for your trip.

Very jealous but incredibly happy that you’ll going to a happy place to get a break from it all

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I just had my first Pegasys injection about 5 hours ago and so far no ill effects but I dare say everything comes to he/she who waits!

Las Vegas is definitely on! The temptation to cancel was quite strong due to all the hoops we have to jump through in order to board the plane. One night in Los Angeles and then fly to LV next morning.

Bit sad to be missing Mothers Day with my daughters but I have decided that is the day I will sprinkle Mum under the Welcome To Las Vegas sign.

I’ll try not to write off my hire car too!

Love to all you Mums out there
xx

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Oh @Quercus I am sure that your daughters will understand the appropriateness of the timing of your trip to Las Vegas.
Who says that you have to have Mother’s Day with your daughters on that Sunday, you can celebrate any convenient day and tell them all about your adventure and show them lots and lots of photos.
I will picture you on Mother’s Day.
I await hearing all about your special trip.
No, I would rather that you don’t write off your hire car too !!!
Hoping you are still feeling no side effects.
Bon voyage.

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I did get some side effects around about 7 hours after the injection. A sudden onset of being freezing cold, then the banging headache and felt like I had been run over by a train!

So I crawled into bed and took paracetamol and various sleep inducing herbal supplements, with loads of water at hand… This morning all that remained was the headache which has now passed.

I am now feeling a bit more positive about the treatment, although my haematologist was already talking about increasing the dose after 9 weeks. So how long does it take for the drug to start acting?

By the way, Las Vegas weather looks good for the end of March - 28C, bring it on!

xx

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Sounds very similar to my first injection but I was fine after a day or two and still after almost a year … never felt anything like that since …

I just get itchy which is proper annoying after a shower or lying in bed or idle.

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Hello @Quercus, I am glad to hear that the side effects have improved now from your first injection of interferon. The time it takes to work varies but generally between 2-4 weeks. There is some information from our collegaues at MPN voice that may be useful Interferon alpha – MPN Voice and you can also download this booklet too https://www.mpnvoice.org.uk/wp-content/uploads/2021/03/Drug_Interferon-Alpha_Sep2020_A5web.pdf. Do right down your side effects in diary form to relay back to your treatment team. I hope this helps and enjoy/embrace Vegas. Take care Gemma

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