AE's on interferon: No drastic new info here... - MPN Voice

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AE's on interferon

EPguy profile image
10 Replies

No drastic new info here, but interesting as we experience INF together.

A report on MPN Hub has >3 level adverse effects on INF vs HU. A few of note, many of us are seeing these, if not at these severe levels:

Severe AEs:

-Lymphopenia, (Low Lymphocyte WBCs) HU: 1%, PEG: 4%.

-Neutrophenia, HU: 4%, PEG 2%

-Both of Hypertension and Fatigue, HU: 3%, PEG: 7%

-Headache, HU: 0%. PEG: 4%.

Some increased fatigue on INF is common on the forum, I have had some myself. We have seen members with headache on INF. Hypertension is the biggest surprise here for me. I've actually had more consistent BP since starting INF, this allowed me to increase my still low dose BP med. Any others with BP changes on INF?

There is a separate finding <<HU produced a greater histopathologic response>> It was a big difference. I think this is for marrow condition, but it can also refer to blood condition. HU is not known to improve marrow from what I've read. They don't define it further.

10 Replies
Hopetohelp profile image

Thanks for that interesting post. Blood pressure slightly higher on peg but not too bad. I check it once a week. Before peg it would go to a good range if I behaved myself but seems stuck at 130/85 on average at the mo

hunter5582 profile image

No change in BP that I have seen on PEG or Besremi. My BP did improve when the erythrocytosis was under better control from the phlebotomies. The improvement has been maintained on the IFNs. Definitely better to not have the blood too thick.

Wyebird profile image

Thank you, those snippets of information are Bril bite size and easily digested.For me being on Peg, fatigue is far far less of an issue. I think it depends on how anaemic on hu you are etc.

I don’t ever want to be put back on hu and anagrelide again. For me Peg I know not for others gave me a reason to live life again.

Solyesh profile image

Interesting on the BP - I did not know that was even a possible AE. I have always had higher than normal BP but amazing cholesterol and am active and do extremely well on heart function tests so my doctor has always said that perhaps I am just a little "north of normal"..but in my last reading at the doctor's office the BP was highest it had ever been at 145/85. My doctor asked if it could be a side effect of the Peg and I said I was not aware of that but will ask my MPN specialist when I see him next week (liver readings def a Peg AE and we are assuming a few wonky Thyroid readings as well). So I will ask and report back...actually the BP reading gave me the impetus to finally lose those last 5 kgs/11 lbs and reduce my salt intake as much as possible!

EPguy profile image
EPguy in reply to Solyesh

See my update below. Did you change any INF dose before your hi BP result?

gilded profile image

Hello! I have been on Pegasus interferon for about 3 months and haven’t experienced any adverse side effects.

FG251 profile image

Just came in from a walk, having done my 26th PEG injection - no issues, thankfully. Took two BP readings after relaxing for 5mins: 1st: 114/76; 2nd: 104/70. I added 2.5mg Amlodipine to my 5mg Ramipril, as the increase in Ramipril was pushing the potassium up. No AEs from any of the meds. Aiming to lose half a stone, though, as have been eating too many treats lately…!

EPguy profile image
EPguy in reply to FG251

Treats are tasty. But what happens after that is an "AE" well known to treats.

Have you had your Guy's visit yet?

FG251 profile image
FG251 in reply to EPguy

I have a sweet tooth - going cold turkey for a while.Re. Prof Harrison: no, not yet. My haem sent me a copy of the letter she wrote to her, asking for her expert opinion. It may well be that she only writes back, rather than requests an appointment with me. Either way, I suspect she’ll want me to have a BMB.

From all my GP appointments, I gather it’s the trend that matters with BP, not the occasional aberration. As you know, they’re well used to ‘white coat syndrome’ too. Home readings are the best!

EPguy profile image

Great replies. It seems no big issues for members with Lymphopenia. I know some of us are low but still ok.

On BP I actually forgot an episode I had early in my Bes treatments. I started a few at 50mcg per HU transition, no problems. Then 110mcg. The next week BP was ~165/~100. (similar to my pre-treatment BP at Dx.) It went down quickly after that. My Dr was ok with it, saying it's the INF, so I am a data point on the AEs above.

So my case does support a short hypertension episode. I was thinking of durable problems, so forgot this one.

I knew about this short episode only bec I regularly use a home BP device. If you get too high BPs at Dr's office, as I do, I suggest you get one to know your real daily levels. I'm listed as HTN (hi BP) on my patient records because that is what they see at the office, so I reassure my self and Drs with these measurements.

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