Anyone on Interferon for 5 years or more??

[Meatloaf9]

I just read a post of a member who has been on Peg for 5 years and has an AB of 1%. Wondering what the experiences of those who have taken interferon for at least 5 years, both good and bad have been. Have you had lowering of AB, CHR, any effect on bone marrow, have you progressed to another mpn, etc. I am seeing my mpn specialist this month. I take HU for PV, 72yo, good control so far, but I am wondering if I should switch to Interferon for the possible long term advantages? Any comments, both good and bad would be appreciated. Best to all.

[Kelly2]

Hi. How long are you on HU? I have the same question. I asked for Besremi but my doctor said that due to my age I will have side effects! So I did not insist.

[Meatloaf9 in reply to Kelly2]

Hi, I have taken HU for one year, almost exactly. I have no problems with it and my blood counts are well controlled so far. I saw my MPN specialist two days ago and had the Besremi discussion. I don't think he is all excited about it though he has quite a few patients on it and they are all doing well he said. It has only been available since last Dec, I think.He told me that Hu was #1 choice in my case and Besremi was #1a. I asked him if I were his father would he still recommend I stay on HU and he said yes.

He said if I wanted to try Besremi he would help me to get approved, he said it is still difficult to get everyone approved for it and it is very expensive. When I asked him about all the new studies saying besremi has a better long term record he said he was not convinced due to the large number of people who dropped out of the studies, I don't know, that's just what I was told. He did say that besremi has a whole new list of possible side effects.

I am 72, I think that is playing into his recommendation to stay on HU, May I ask your age and were there other reasons your hematologist did not want you to take besremi??

[EPguy in reply to Meatloaf9]

I've seen concerns elsewhere about the Besremi study drop outs.

From the actual study document, see image:

In the right column

<<Co-primary endpoint

Disease response rate at assessment visits (discontinued patient counted as non-responders): >>

From Table 3 in the supplement to the Ropeg Continuation PV trial:

static-content.springer.com...

It seems they were quite conservative counting drop outs, putting them as failing the endpoint. This method makes Besremi look less effective, but it still looked good even after this. It may be more complex than this, but maybe not.

If you can, ask your Dr where the implicating drop out data is from or whether my reading here makes sense?

Ropeg SuppTable 3

[Pat032018]

Hi Meatloaf9,

Besremi have been very good for my PV, but I did not have experience with HU. I think that Besremi has a long list of side effects as listed on its website and in all official communications about Besremi to patients. However, in my case the only side effect worth mentioning (after almost 5 months of treatment) is the flu-like symptom within 48 hours after the injection - and it is a manageable symptom without the need for any drug; and I can function 'almost' normally during the 48 hour period I am talking about.

Good luck and God Bless you!

[Meatloaf9 in reply to Pat032018]

Thank you for your experience, very helpful. Best to you.

[shiftzz]

That person was me…

Some background , I was diagnosed and was put on aspririn and Hydroxy, I was on a large dosage Mon, Wed, Fri, Sunday 1,500 mg, Tue, Tur, Sat 1,000mg, plus regular venesections, to date over 65.

My original numbers were

WBC 12.7

Hb 18.2

HCT 0.614

Platelets 1143

Neuts 9.59

That was in 2014

My HCT did not come down to a reasonable level until 2019, that was two years after I started Pega and I was still on Hudroxy (lower dosage) and still having venesections.

Advantages, well in my case, Hydroxy was well tolerated and there was some concern that Hydroxy may in the longer term cause more problems. Pega is regarded as a lower risk option. I have had no issues with either Pega or Hydroxy.

If my numbers stay low, after I start on the lower dosage of Pega then they may reduce it again.

I did attend an MPN forum in Birmingham and some people did see a very quick response to Pega, mind did take a lot longer, I did ask my consultant would he consider upping the dosage when there was little evidence of any benefit.

My current consultant appears to be moving in a different direction, regular spleen checks, mine is slightly enlarged, annual DNA testing for JAK2. She is going to avoid venesections as she suggested that I have had too many.

Symptoms, I suppose I am slightly less tired, brain fog still there, but I am now reading a bit more.

I’m 67 years old on September, I know I’ve had an issue for a long time, but, they diagnosed ear infection etc etc,,,

The biggest problem we have is the lack of knowledge within the GP and general medical profession, they don’t come across it on a regular basis and they don’t react when the evidence is before them, see attached report that was sent to my GP, who did not do anything..

Hope this helps?

Blood results

[EPguy in reply to shiftzz]

Your GP was clearly not paying attn, also with your initial CBC numbers being out of range.

Hoping you can reduce your INF dose. It could be the fatigue will continue to get better.

Did your WBC and/or PLT respond faster than the HCT on INF? Or was the HU already controlling that?

[shiftzz in reply to EPguy]

Its hard to say… There are the results in graph form.

During my treatment I was diagnosed with suspected pancreatic cancer, that turned out to be a dodgy gall bladder. My Bilirubin went into Orbit..So some of the numbers are out of range during that period

My treatment has consisted of the following stages.

Aspirin/Venesection

Aspirin/Venesection/ Low dose Hydroxy

Aspirin/Venesection/ higher dose Hydroxy

Aspirin/Venesection/ Higher dose Hydroxy/ Pega 135

Aspirin/Venesection/ Low dose Hydroxy/Pega 135

Aspirin/Pega 135

Aspirin/Pega 90

My symptoms have improved slightly, brain fog not as bad, but I have a Pega Cough, which is getting better.

What I have found that the recording of my numbers has allowed my to add a moving average and see where the numbers are going. The Consultants don’t have the same insight, they don’t see the numbers in a graphical for or over a long period. I’m lucky that my doctors supply me with the data,

charts

[EPguy in reply to shiftzz]

Great plots, they are not easy to do. My provider has these automatically online, but that seems the rare exception.

From your plots, it looks liked the HU did its job quickly and well (except the outlier) Other than Hb, all sorted within 1st year. It looks similar to my PLT plot here for example. Good that your Hb is ok now.

PLT to 6-22

[shiftzz in reply to EPguy]

Indeed, I've been lucky my haematology consultants have always provided the numbers, and, me being interested decided to plot the numbers. Hydroxy appears to have worked in the 1st 12 months, but, that's slightly misleading as I was having very regular venesections, sometimes one every two weeks.

They were very keen to keep me below 0.45 hct, they would request on a venesections even if the numbers were 0.451. So a tough regime.

I do think is important that this data is available, i produced the charts on xl and have shared a number of copies.

As sufferers we need to encourage getting the numbers, educating GP's and add symptom management to our wish list.

I get the risk aspect, but it's hard to explain my symptoms when my numbers are within range.

[EPguy in reply to shiftzz]

Your Dr is closely following the risk data on HCT, we've seen others that are looser with it. You're right plot data should be standard from everyone's provider.

From what I've seen venesection tends to increase WBC and PLT, which if so suggests HU was working very well you on for those two numbers by opposing that force. Here is a discussion from the Voice. But now you're good on INF, which is neat.

healthunlocked.com/mpnvoice...

<<My haemotologist told me that after a venesection my platelets and white blood cells will rise>>

[Meatloaf9]

Thanks for posting. If I recall right, your AB came way down to around 1%, that is great and what we would hope for with interferon. You bloods were also good as I recall. I guess you couldn't do much better, maybe a holiday from all meds if you continue such good results, we all certainly hope so. Hoping that the fatigue and brain fog improves and gets back to normal. Best to you always.