Interferon side effects

Right here we go, topic for conversation. After 10 years on hydroxy, I have changed to Interferon Doctors now working on me separately Raised liver enzymes raised thyroid and now today, high rh factor result aahhhh Havent seen my haem Consultant for couple years, he passes messages to continue after reviewing fbc but have always trusted him, but its different since Covid, know theres more priority patients, I understand that. Platelets seems only concern, platelets good 45mg weekly interferon, 1 hydroxy capsule daily Done the dreaded googling and I have only had these recent results since starting interferon (liver etc) but apparently this is nothing to do with haematology, they focus on platelets and fbc only Can anyone relate to this ? Are you looking out for these things ? RH factor not normally done as routine, has anybody developed liver disease or rhematoid disease with interferon ?

[EPguy]

If your Dr is following only PLT I assume you have ET, rather than PV. Are your other blood counts ok? If not you need to get a better Dr on your team. You're right that FBC is a basic part of hematology, but any good Hem will be checking various others too.

On the liver, while on any of the meds we take, and especially interferon, any Dr who prescribed it to you should be getting CMPs (metabolic panels) with every blood draw. This follows liver, kidney and other important measures and has plenty to do with hematology if you're on IFN.

The FDA label for Besremi, Table 1 here, shows the allowed values for liver counts. They are ok with up to 3 to 5 times normal. PEG should be similar.

accessdata.fda.gov/drugsatf...

Rh factor you're right it's not followed as closely in Hematology. Usually only if there is reason to suspect it: other relevant counts are high or you have auto immune symptoms. I qualify here, see my post "Cope with Hope."

If your Rh is high, there is a whole set of additional rheumatology and inflammation blood counts they should do to get full info on your condition. I can provide what I got if it's of interest.

I was forced off Besremi because of auto immune troubles although all my blood counts were near perfect.

[Hidden in reply to EPguy]

Hi EPGuy It is peg interferon alpha 2a I am on. I was diagnosed with ET abt 11 years ago, have to admit not sure if it has developed into anything else, not had a bone marrow since before diagnosis my Consultant just looks at bloods. Maybe he is annoyed at me, as he suggested angreledade when hydroxy stopped been effective and I didnt want that, moaned to get on interferon. Now I now hear more from the nurses or his Secretary telling me to continue, going on fbc, had 1 scan for spleen few years ago. After reading on here, its true, think we should all be referred to MPN specialist from start. I was started on hydroxy when platelets where still in 500 range, 11 years ago, I am 64 now, think I was put on it too early Thankfully my platelets have always stayed that way. I feel like just stopping all trt, think interferon is causing other health issues Planning on trying to speak to my Consultant next week darent upset him by asking to be referred to specialist but GP said they dont do that Dont know what to do trying to get out of my negative mode lol so moaning first but hey ho, Im not the only 1 still feel grateful and truly wish all us MPN'ers the best

[Not2bad]

HiI was treated with hydroxy on first diagnosis (myelofibrosis) but changed to interferon after a few months. I just couldn't cope with the extra fatigue the hydroxy caused me.

I switched to interferon and felt much better and my platelet count came down from the 700s to 'normal' 400s.

After about a year my consultant took me off interferon as my liver counts were high. Apparently this is a known side effect.

I have been without treatment now for a year and my platelets are staying in the 700s and the liver function is back to normal.

It definitely sounds like you should see an mpn specialist if you can

Best of luck

Finbar

[Hidden in reply to Not2bad]

Awe brilliant you stable Finbar Amazing love hearing good news like yours, real pick me up too I am at present debating if I should annoy my Consultant by ringing his Sec and insisting on tel appt to ask if I should come off trt for a while and take chances. Is till take hydroxy too 1 a day. Feel he will just say to me, its your choice, and worry it will affect me in the future re: trt MPN Specialists should be more of them local, too far away, but you worry abt upsetting your Consultant too I do actually appreciate my Consultant, he has helped me loads in the past, but I know I cant be his priority, others more in need than me. Ooh what to do :/ Have a fab day Finbar keep in touch

[PhysAssist in reply to Hidden]

Hi Pippa2021,

When I started Besremi and was still on HU, my liver enzymes and creatinine blipped up quite a bit, so my MPN specialist had me go immediately off the HU and they went right back down, maybe ask about doing that instead of foregoing all treatment?

I totally agree with EPguy, the Heme/Onc MD's HAVE TO take responsibility for ANY changes in liver, kidney, and electrolyte levels that occur when they are actively treating you with medications that are well known for making these changes occur.

If yours are not willing to be responsible, you have a much more than adequate reason to seek out an expert.

FYI, things like having too many platelets or RBC's can also directly change your lab results:

Pseudo-hyperkalemia in Serum: A New Insight into an Old Phenomenon

Which discusses the false potassium results found in the presence of thrombocythemia and/or erythrocytosis.

I posted the whole article previously, and just copied this in to illustrate the wide range of changes our MPNs can be associated with.

Best,

PA

[EPguy in reply to Not2bad]

To: Not2bad

How high were your liver counts? As in the thread above, for the IFN Besremi, up to 3-5X normal may be ok. This is for PV and not PEG IFN, and note the exception for bilirubin. But good background info for decisions.

Your Dr knows best. But we should always ask for details when important things change.

[Hidden in reply to EPguy]

Not sure EP just told by GP raised, but have to say when I raised it with haematology they highlighted to my Consultant, he not concerned at present, so suppose thats gud news But told GP needs to deal with this anyway x

[EPguy in reply to Hidden]

Your consultant is probably following the 3-5X guidance. For member Not2bad, it may be not so. Hope to find out.

[Not2bad in reply to EPguy]

Hi, to be honest I didn't ask what the liver levels were.She did say that they had started going up shortly after starting the Pegasys interferon and after a year or so they got to a point where she felt that I needed to come off the interferon.

It seems that I'm a 'reactor' to some meds, the hydroxy made my fatigue so much worse and really sensitive to the sun and the interferon hit me in the liver.

Lots of people take these drugs with little or no side effects - for years!

When my platelets do start going up again there's going to be a difficult conversation about what options are available for me on the NHS. Apparently I've tried the 2 standard drugs - anything else has to be approved by the mdt, not just my consultant.

Hey ho - hopefully that will be a long time away and one of the many other drugs in development will be available and work for me!

[EPguy in reply to Not2bad]

Your Dr knows best and is taking good care of you.

I relate to reactions, I was forced off Besremi from a vaccine reaction that turned life upside down. I'm now on Rux (Jakafi) hoping for tranquility. It seems that you would need that special approval to try Jakafi if you have reason to look to the other options.

[Not2bad in reply to EPguy]

Hi EPGuy

it was Rux that the consultant mentioned, she reckons that even though I have the CALR mutation a JAK inhibitor would still be beneficial.

I have to say that I am very pleased with the care I've been getting - hopefully it will be a long time before we need to discuss any further options!

best of luck to you!

[Wyebird]

oh dear what a worry for you. Do you have a nurse you can contact?