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 shared personal experiences with interferon and Besremi for ET, offering honest insight into what to expect when starting treatment.... 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!
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 😊.
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
IKEALover, did you get rashes before? Are these at the injection site or everywhere? I immediately thought of the possibility of taking Benadryl before the injection, but it may not be a good idea. Look at this: https://www.drugs.com/interactions-check.php?dr...
What do you do when you get hives?