Hello!
I started Besremi (100 mcg) Feb. 17th and have had two shots so far. I am also on my full dose of HU which is 9 pills a week.
The only noticeable side effect has been periodic dry eyes where I needed to use eye drops. Has anyone experienced that and does it resolve over time?
I appreciate all of your thoughtful comments. It helps.
I experience dry eyes independent of the medications. It is important to treat as it can significant impact on vision. OTC eye drops did not help. Restasis was ineffective, I could not tolerate Xiidra. Cequa is the one eye drop that has worked quite well. Had this not worked, the next step would have been punctal plugs.
Suggest that you consult with an ophthalmologist for the best individualized treatment plan for the dry eye.
Thank you for your response. Ironically, I have my MPN specialist appt. this Monday and my regular eye doctor appt. Tuesday so hopefully between the two, I will have some good guidance. Today they feel better..... punctual plugs do not sound fun..... thanks again for taking the time to respond.
It's a known side effect, and could resolve. But you should discuss with your eye Dr to monitor your condition. In the Bes label section 5.9 it has:
"Evaluate eye symptoms promptly. Discontinue BESREMi in patients who develop new or worsening eye disorders"
accessdata.fda.gov/drugsatf...
Mild dry eyes may not be what they refer, but best to be sure it stays that way.
You should also watch for and rule out any autoimmune cause of the condition, Sjogren's in particular. Your eye Dr is one good team member for this ongoing care.
I appreciate your response and link to info. I know you have shared your journey with Sjogren's disease. Was your diagnosis a result of IFN / Besremi? If you stop taking Besremi does it stop any progression of symptoms that may have a serious outcome?
I can see you're up to date on Sjo, it was just recently changed from"syndrome" to Disease", reflecting better knowledge of it.
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My Sjo was absolutely triggered by one single reduced last dose of IFN. But most likely it was set up by a botched flu vaccine a few months prior. You can see my posts "Last Dose". As with most disasters a sequence of things needs to happen. One of them for me was being a guy, Sjo is on avg worse for males while ~10x more likely in females. A history of bad mononucleosis (EBV) is another among many other unknowables. Even psoriasis history is a large Sjo risk from recent reports in posts here.
Sjo was listed as "common" in the trial, 1-10% (one report on IFN had ~4%) Sorry I don't have these refs handy.
As in the label, all those black box outcomes "usually" resolve upon ceasing therapy. But not always, as I and others here have experienced. Pegylated IFN is great for its less toxic longevity, but if things go south that persistence is a problem. I suspect if I had an "IFN cleanse" that night (there is no official such thing) I would have a different outcome. With what I know now I would try to obtain Sotyktu, an A-I drug that inhibits IFN but this is way out thinking.
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But don't let all that doom worry you. As I and others have noted dry eyes are known with IFN, and alone is not likely to be a worry. But if you experience any other emergent or worsening indicators that could be different. Anyway your eye Dr should be able to clarify things.
-Thank you again for your reply. I really do want this to work, but issues with the eyes do scare me. I appreciate you sharing your experience as I am a "newbie" right now... 
You should be fine, esp if you continue to have no other relevant symptoms. Let us know what you learn at the eye Dr.
In my case my eyesight improved on Bes, ( to near 20/20) and the improvement has persisted two years later even with all the other stuff.
I see you're asking on dosing. Mine was increased up to 140, with the last dose at 100. But with IFN one person's dose has little connection to another pt's dose, both for its benefit and risks. Some have no sides at 500, but also not complete blood control. Some get good control at 50, but sides can emerge even at that dose. Most are in between, with good effect and just typical low risk sides. But what you can ask your Dr is to take the absolute minimum dose that holds blood counts, and no more. I would likely have done better that way.
Rux is different in that dosing and its effects do not vary that much.
Thank you! 20/20 vision sounds like a great outcome!
It's good but I 'd trade coke bottles if I could relive one fateful day to have a different outcome.
I have dry eyes and they seem to be worse if I am tired or looking at screens all day. It has definitely been associated with the Besremi. I use refresh eye drops every morning and sometimes during the day if needed. I have thought about asking the eye doctor at next appointment if I could get a prescription drop, but for now this seems to be keeping me controlled.
Thank you, I appreciate your reply. I do hope it is nothing more than that so I can give this Besremi a chance. Hope you are well.
How long have you been on Besremi and what is the dose if you don't mind sharing?
I’ve experienced this too. I use a warm compress regularly (Bruder) which is helpful. I also use eye drops.
Thank you for your response and the tip! How long have you been on Besremi and what is your dose if you don't mind sharing. I am brand new to this whole process!
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