Interferon

[ciye]

Just done my 1st injection, simple enough, now hoping any side effects will be minimal.

[JediReject]

Hi ciye, wishing you luck on that , always daunting starting a new treatment no matter how many one has. Chris

[JP1952]

Hi Cite,Well done and glad to hear it was straightforward for you. As I am going to change to interferon from hydrea next month could I ask did you deaden the point of injection and was it sore after.

[ciye in reply to JP1952]

I didn't numb the area and apart from a slight tenderness it was fine. I forgot to buy swabs to clean area before injecting. I did have antiseptic so used that. The thought of self injecting was worse than the act. I am sure you will find this the same.

[WeylandYutani in reply to ciye]

Hello ciye,

congratulations, did my first injection on Sunday and had just dry eyes as side effect.

Fully agree on the thought being worse than the act.

We will do great

Cheers!

[Hopetohelp in reply to JP1952]

Hi JP1952. I don’t deaden the site and am not sore afterwards. I wipe with an antiseptic wipe first. A small tip is make sure the pointed bit at the end of the needle is closest to the skin if injecting at a 45 degree angle. I think it is called the bevel. I don’t feel a thing this way. If it is the other way round it really doesn’t matter as the prick is so small I hardly feel it and feel it less than the jab in your arm for covid and considerably a lot less than having a blood test. Let us know how you get on

[Windy51 in reply to Hopetohelp]

It’s the after affects not the jab

[Hopetohelp in reply to Windy51]

Was replying to JP1952

[hunter5582 in reply to JP1952]

Would also add that I experience no pain at all with the injections. I can barely feel it. I have to be looking to see that the needle is really going in. I have had no injection site reaction at all. The injection really is not big deal once you know how.

[Windy51 in reply to hunter5582]

It’s the after affects that’s the worry not the jab

[ciye in reply to Windy51]

So far none...... Bet I just jinked myself 😊

[hunter5582 in reply to Windy51]

I get nothing at the injection site. No adverse effects at all.

[Sam2022 in reply to hunter5582]

Is PEGINTERFERON covered by insurance for ET patient? I am JAK2+ ET patient and taking HU now. I want to switch to interferon but concerned with the cost if insurance doesn't cover it.

[hunter5582 in reply to Sam2022]

Pegasys is not FDA approved for ET. Neither is hydroxyurea. Both are considered off-label in the USA. However, both are also recognized as first-line treatments for ET and other MPNs. HU cost about $70/month. PEG costs about $4,000/month. most insurance companies like HU better regardless of which is better for the patient. Depending on your insurance formulary, it can be either relatively easy or relatively difficult to get PEG approved. I can usually be done provided your doctor knows how to work with the insurance plan and is willing to do the extra work that may be involved.

Note - I had no trouble at all getting PEG approved through my Cigna Medicare part D Rx plan,

[Sam2022 in reply to hunter5582]

Thanks, Hunter. Very helpful. I will see my doctor this Friday and hopefully he agrees with me on interferon.

[hunter5582 in reply to Sam2022]

It may help to make it clear you have done your homework and reviewed the options. Make it clar that you feel the risk/benefit profile of PEG is superior to HU based on your goals, priorities and risk tolerance. Both HU and PEG are considered first-line treatment options. This is your decision. Not the doctor's.

Here are two of the better articles on this topic.

mpnjournal.org/how-i-treat-...

legeforeningen.no/contentas...

[Sam2022 in reply to hunter5582]

Thanks, Hunter. Due to my age, 49, I prefer interferon than HU considering the long term side-effects of HU. My doc prescribed PEG today, but not sure how much I will pay from my pocket. I am so surprised why interferon is so expensive under insurance even it is first-line medicine for ET.

[ciye in reply to Sam2022]

So glad we have the NHS, cross at present I am throwing away 90mls of interferon, shame it doesn't come in smaller vials but it's all £$€ for drug companies.

[hunter5582 in reply to Sam2022]

Glad to hear that the doc respected your very reasonable preference. Your co-pay will depend entirely on your insurance plan. I pay $100/month until I reach my annual cap of $2000. Note that while HU and PEG are both considered first-line treatment options for ET, neither is FDA approved for this purpose. Besremi is nearing FDA approval for PV and is in clinical trials for ET. Hopefully it will be easier to access once it is approved.

Hope you find the PEG to be both effective and well tolerated.

[Sam2022 in reply to hunter5582]

Thanks Hunter. It is the first time for me to know that both HU and PEG are not FDA approved for ET treatment. So what is FDA approved medicine for ET patient? Just curious...

[hunter5582 in reply to Sam2022]

There is no FDA approved medication for ET in the USA. The process of getting FDA approval is expensive and there is little financial incentive to the drug manufacturers to do this for an existing med approved for another condition. That is why use off-label use is so common. It is hopeful that Besremi is nearing approval for PV and in trials for ET. Perhaps this will give u the first FDA approved medication for ET. Hopefully this will make approval from insurers easier for ET patients.

All the best my friend.

[Sam2022 in reply to hunter5582]

But if the Besremi result is not as good as HU or peginterferon, it would be difficult to get FDA approval. Good to know there is no FDA approved medicine for ET😱 Thanks

[hunter5582 in reply to Sam2022]

The good news is that the results for Besremi are in for PV and are favorable. I would expect they will be likewise for ET when the trials are done. It would be nice to have at least one FDA approved medication for ET too.

[Sam2022 in reply to hunter5582]

Hope we can use it soon with decent price.

[hunter5582 in reply to Sam2022]

The last figure I saw out the price near that of Pegasys, but I am not really sure what it is going to cost. Hopefully it will end up on the formularies so it will be covered even if at a higher co-pay.

[Sam2022 in reply to hunter5582]

Hi, Hunter. I am finally about to start interferon next week. I am wondering did you check liver, kidney and thyroid to have a baseline before taking interferon? Just want to monitor other organ's normal functions while reducing platelets. Thanks.

[hunter5582 in reply to Sam2022]

Yes I did. Primary focus is on kidney and liver fx. We regularly check with a CMP. I have recently checked thyroid, bit only occasionally check in that.

[Sam2022 in reply to hunter5582]

Thanks, Hunter. Hope your CMP check is doing good.

[hunter5582 in reply to Sam2022]

So far so good on the CMP. Liver and kidney look good. The WBCs are dropping more than I would like, but so far not so low as to be a major concern. Hope your PEG journey goes well.

[Sam2022 in reply to hunter5582]

Will update my PEG journey here. Thanks for valuable suggestions.

[DottyDaisy]

Look forward to hearing how you get on. Thanks for sharing.

[Hopetohelp]

Good luck and drink plenty of water. I know some unfortunately get side effects but many of us don’t or they are minimal

[hunter5582]

Congratulations my friend. You are right that it really is pretty easy to do. Hope you respond well to the PEG.

[JP1952]

Thank you all, that's reassuring.

[tatty123]

I will be changing to interferon in a couple of weeks. It’s good to read everyone’s comments and reassurances about it. Xxx

[Cja1956]

Good luck on your new treatment. I hope it has the desired effect.

[Otterfield]

I hope you didn't suffer with side effects. I was on it for a year and found that Paracetamol sorted out any effects.