Hello all,
ET patient here. I have seen two MPN specialists (one at MD. Anderson and one at Moffitt). From what they both have told me, I think the next step for me is interferon. What should I know? Does interferon stop working after some time? Do you feel really bad after the injection? Please, tell me the good, but most importantly the bad so I know what to expect.
Thank you all.
Answer Summary
Members openly shared their experiences with interferon for essential thrombocythemia, with many expressing cautious optimism about Besremi as... Read more
Hi, something to know. It does not working for everyone.
I took it for 1 year, and despite the high dosage i was resistant to it. Thus, keep in mind, it might not work.
Second, the side effects, initially they are worse, you need time to get use to it.
You could feel like having flu the first days after injections before feeling better.
I experienced more GI side effects (3/4 days per week), strong probiotics could help.
Last point. Be careful about psychiatrist side effects.
I realized how depressed and down I was only when I suspended it.
That's the worst side effect. It's sneaky and you might not realize it. I suggest to start taking a journal (if you do not have it) it might help keep track of it.
I stress this point, because differently from the other side effects, that's difficult to understand and could be life threatening.
Other points: do not drink with it, your body will react differently if compared when off interferons ( for me it was hitching and strong pain in the legs). Thus drink with moderation or quit it.
If you are experiencing flu like symptoms, taking paracetamol 30 mins prior injection it helps.
Be careful of the interferon temperature. It has to be stored in the refrigerator (3-8 degrees) but before injecting it has to be brought to room temperature, thus wait 15 mins out of the fridge or warm it one minute in your hands.
Good luck!
Hi Laimi,
How are you coping with your thoughts of taking an interferon?
I am currently in the same situation. I live in Canada, my scheduled start-time for Besremi is on hold due to logistical procurement issues.
I deferred taking HU 1.5 yrs ago. I was waiting for the opportunity to take this new improved interferon.
I can add the following.
Much of the current opinion regarding interferon is biased and based on the older interferons. AI included, does not take into account that Besremi is a new generation of treatment, intended for older patients, regardless of previous treatment.
European studies indicate that tolerance is much better than oral chemo.
As with any drug there are warnings of possible side effects. Interferon provides a possible path towards remission and can be used for long duration (tolerance is always the caveat).
I asked the same question you have. The response i received was very similar. The feedback I did received was positive. Remarks included, "should have started sooner", "best I've felt in 10 yrs", "feel totally normal", "wish I had never taken HU", "injection site rash, but tolerable", "Allel burden has dropped from 38 to 18"
AND
"Had to stop due to psychological issues", "waiting for guidance due to increased liver enzymes"
All we can do is try, be positive and hope that we have an experienced team to monitor us.
Wishing us all well.
GMcRay, the videos you sent are great! I subscribed to the man's channel and already watched the first one. I will watch the others as times allows me. He posts one vid every time he gets an injection. Some people deserve the best for thinking about helping others at the same time they are going through something so stressful.
Your answer is great! You have told me so much in a few paragraphs!
My appointment was changed from Oct 22 to Sep 4. I don't know if my MPN doctor will want me to start interferon yet. My platelets were at 640 in June.
I really want to hear what he has to say. He ordered some tests, but I have not seen the orders. A nurse just messaged me saying she will send them to me tomorrow. Depending on what I see in the orders, I will also ask him if there is a way to test platelet aggregation before I switch. Apparently, doing a light transmission aggregometry (LTA) test is very complicated and they don't do this test at hospitals. But it has to be done somewhere and I am willing to go anywhere! Now I have to see if the doctor is willing to order it and deal with my insurance to get approval. I would really want to have that test done (or a similar one) while I am taking only aspirin, before I start anything new.
In the worst case, if the hematologist I am seeing gives me a good reason for not doing the test and convinces me that interferon is needed already, I will go forward with it. Honestly, it may not take too much effort to convince me. If I am indeed aspirin resistant, my risk of having a stroke is high right now. Every time I have a headache and think there may be microclots causing it, I freak out. Aspirin worked like magic for 2 years (almost 3). But in the last month, the hematomas I got from it disappeared completely and the migraines came back. The migraines are not as bad as before the aspirin, but for someone who was completely asymptomatic, this means something is not going well. If something else is needed, one of the pegylated interferons (like Besremi) will be the next step.
I will update you as soon as I have more info. Please, stay in touch. Let me know how it goes for you when you get it. I hope it does not take too long. When it is not one thing, it is another, right? Here in the US, who knows how much the co-payment for each injection may be. I will probably faint when I hear the number ๐.
Hi, if you want to watch a real person's experience with Besremi there is an excellent Youtube channel mapping an MPN sufferer's journey. It is generally positive and very worth a look.
https://www.youtube.com/@MatthewMesler