Update 6.3 - Good News

[hunter5582]

Besremi dose 3 was on March 2. Still at 100mcg, which seems to be the right dose.

On March 1, HCT was back down to 42.3%. PLT stable at 406. LYMPH sill low but up a bit to 0.91. CMP numbers all look good, so kidney/liver function is fine. Iron Panel reflects iron levels coming back up. Von Willebrand Factor Activity also WNL.

The only clear Besremi adverse effect is the mild lymphopenia. I am also getting occasional histamine-like episodes of generalized itching on my back (not aquagenic pruritis). Maybe a Besremi AE, but could be something else too. I do have some skin sensitivities so it could be most anything.

I also saw the endocrinologist on Feb 22. All endo-labs are WNL. No indication that IFNs having any endocrine impact.

Before I contracted COVID in January, my energy levels were restoring. I have had some issues with reduced energy levels again post-COVID. Seems to be getting a better finally. Hopefully will shake the lingering COVID impact in a few more weeks.

So one the whole it is all good news. I am very pleased with my response to the interferons. My only regret is that I waited so long to start IFN treatment.

I am finally ready to travel again. I have a job in Tulsa, OK at the end of March. While reviewing information on one of the PharmaEssentia websites, I came across some helpful information for those who are flying. They recommend that the Besremi not go through the X-Ray machine at airport security. They advise that you request a visual inspection of your Besremi travel kit. They also have a letter that you can have signed by your doctor to answer any potential questions. Here is the link to this. besremi.com/pdf/BESREMI-tra...

All of the best to all of you all.

[Cja1956]

Thanks for the update. Glad you’re doing better.

[azaelea]

Sounds as though things going well for you. Excellent news and good luck with your job in Tulsa. Fran

[MaggieSylvie]

Glad things are improving for you.

[Wewo01]

Great news, Hunter!! I am so happy to hear that all is going well for you. Happy travels to Tulsa and thanks for the heads up on Besremi visual inspection vs X-ray at the airport. All my best!

Kim

[Mostew]

So pleased treatment continues to be effective for you Hunter .Hope you find travelling OK.

Carolyn

[Vtr1000]

Hi hunter, glad to here the Besremi is working well for you. I must admit reading your posts helps with the positive outlook on the MPN position. Good luck going forward. Andrea.

[EPguy]

Great results. Can you figure quant or qualitatively on any differences over your PEG experience?

We've read here of many who get a bruise at the PEG inj site. I have not had that so far with Bes.

I just did BES shot #2, no AE's from it so far.

[hunter5582 in reply to EPguy]

So far I would say no difference between Pegasys and Besremi in terms of efficacy or adverse effects; however, it is too soon to tell for sure. I think being at a low dose, 45mcg PEG and 100mcg ROPEG may mitigate any big differences. At higher doses, I suspect there would be differences - with ROPEG easier to tolerate. Due to the ongoing lymphopenia I expect that I will stay low-dose providing I continue to have such a positive hematological response.

[EPguy in reply to hunter5582]

Assume you mean BES, vs RUX.

Makes sense not to overdo the dosing. I get the idea that it may be dosed at the max that we can tolerate, to get the allele benefit, according to my Dr. But the label addresses only the dose required for stable hem response since that was the end point addressed in trials.

[hunter5582 in reply to EPguy]

I agree with the minimum dose approach, which is what my docs support too.

[hunter5582 in reply to EPguy]

Oops. typo. Meant to say ROPEG

[Manouche in reply to hunter5582]

Your hematocrit is down and your lymphocytes are up which is a good news, although the lymph. are likely to stay low. Again, the level of IFN doesn’t always correlate with the cytological response. In other words, you could possibly up the Besremi dose without necessarily get lower lymphocytes. That’s what happened with me. I’ve got low lymphocytes (980 ), but no change over the last 10 months after swapping from 90 to 135mcg of Pegasys.

[hunter5582 in reply to Manouche]

Time will tell about the LYMPH. I will increase the dose of BES if I need to and just see what happens.

[EPguy in reply to Manouche]

Your point about dose vs effect is timely. From the various info it seems for some the Hem and Molecular Responses may not be very sensitive to the INF dose. As I've noted, my Dr wants to try for the max tolerated dose to get the best MR, but I suspect there are quickly diminishing returns as a dose goes up. But this may work both ways, as in your (Manouche's) case it's inverse, minimal bad effect on lymph with increasing dose, while possibly you will benefit in MR with higher INF doses.

[hunter5582 in reply to EPguy]

It is all a balancing act. The MPN Specialist has observed that increased doses of Pegasys caused increased leukopenia. It remains to be seen if Besremi is the same.

[EPguy in reply to hunter5582]

It seems Manouche here has Lymph unchanged with increased PEG dose. But I would expect some of us to see an effect there. As so often, no hard answers to guide us.

[Hopetohelp]

Thanks for the update. Very encouraging and of interest. Hope itching sorts itself out. Problem is it’s confusing not knowing if it’s to do with our condition or something unrelated

[hunter5582 in reply to Hopetohelp]

Figuring out what is the MPN, what is the treatments, and what is unrelated is always a challenge. Sometimes the timing is the only real clue we have.

[Elizka]

You have navigated traveling with Besremi for yourself and others. Thanks!

[Wyebird]

It’s so lovely to hear good news. Especially from such a valuable member. I do hope it continues

[FG251]

Glad it’s all going in the right direction!

Any idea if a similar Pegasys travel kit is available?

[hunter5582 in reply to FG251]

I think most everyone uses the insulin travel kits. For short trips, i just use a small insulated cooler bag like what you can use for your lunch. i will get one of the fancier ones when I need to travel for longer periods of time.

[FG251 in reply to hunter5582]

I’m driving to Belgium soon, so was thinking of buying an insulin travel kit, but as it’s only ~5 hours to my destination, where there’s a fridge, perhaps a cool bag with some freezer blocks will do the trick till I arrive?

[hunter5582 in reply to FG251]

That is exactly what i do. I have lots of the disposable ice packs that come with the shipment of Besremi.

[FG251 in reply to hunter5582]

✅🤗

[SoledadBarcelona]

Thanks for sharing. Very practical letter. A question: why did you start with so higher doses of Besremi? Everybody starts with 100mcg. Itching in the back, I think about it that it is due to Besremi. I am in the same situation. Good luck in your new job.

[hunter5582 in reply to SoledadBarcelona]

I decided to start at 100mcg rather than 67mcg because my HCT had just popped up to 45.2 right before I started. Seems like it was the right choice. The intermittent itching on the back may well be the Besremi. It is not frequent nor severe. I will likely just pop a Benadryl if it is persistent. That worked when the same thig happened with the COVID vaccine.

[SoledadBarcelona in reply to hunter5582]

But, 45.2 is good, isent it? Why 67mcg and not 50mcgr ?

[hunter5582 in reply to SoledadBarcelona]

The target for HCT for a male is 45%. For a female it is 42% or 43%. The goal is to stay at or under the target HCT, but not go too low, which would make you anemic.

The standard starting dose for Besremi is 100mcg for people not taking anything. If you are switching from HU the starting dose is 50mcg. The switch from Pegasys to Besremi was not as well researched and is not in the clinician guidelines for prescribing. Dr. Mesa recommends using a formula to determine the starting dose for people switching from Pegasys (aggregate monthly PEG dose)(.7) / 2. For someone stable on .45mcg PEG = 67mcg.

[SoledadBarcelona in reply to hunter5582]

Benadyl is an antihistaminic and I think about this iching in our back is due to pegylated. Try to drink a lot of water per day. It will be out.

[hunter5582 in reply to SoledadBarcelona]

Fortunately I do drink a lot of water. Since histatime is part of our immune response use of an immunomodulator like interferon could be triggering an issue. Note that itching is listed as a common adverse effect of Besremirxlist.com/besremi-drug.htm

I have had this sort of hitaminic reaction to other things, The simple way to sort it out is that if taking an antihistamine lakes the itching go away, then it is a histamine issue. Sometimes 2 + 2 = 4. The good news is that the itching is only occasionally present and generally is pretty mild.

[Hydranga18]

So glad everything is going well for you , 🙏🏽

[Thankfulone]

Happy to hear things are going well for you Hunter. All the best in your new job as well!

[IrishHiker]

All (mostly) great news. Hopefully that lymphopeia stays in a holding pattern and your itching has subsided.Reading your posts are ALWAYS very enlightening Hunter. You contribute so much to this group with your knowledge base and your “can do” attitude. Thanks for all you do! Good luck on traveling on your business trip. May you remain in good health and good spirits🙏🏻

[josup26]

Hunter, so glad to hear this news and you are feeling better. You provide such great information for us all. Well appreciated and have wonderful trip.

[mfh7]

Great news for you. Separately I am administering my second dose of Besremi today at my starting dose of 100 mcg. Increased itching has been my only AE so far as well and fatigue is slightly better but could be psychological gain I guess. Benadryl has helped the itching and I had some itching before Besremi so not sure it’s an AE. Time will tell regarding improvement from Besremi but so far so good for me. I follow up with my hemo next week and will be curious to see my labs. Thought I would update since I am right behind you on the Besremi journey. Please keep posting and best of luck!

[hunter5582 in reply to mfh7]

Glad to hear you are on course for the Besremi. That generalized itching is a bit hard to figure out. I get it for other reasons too. When it is bothersome in the PM I will just take a Benadryl and see how that goes. I think I will try a Claritin if it is during the day. I take the Claritin anyway when the pollen is flying about.

All the best

[Meatloaf9 in reply to hunter5582]

Well done fellow Mountaineer. Sounds like you are progressing with the Besremi just as you expected. Hoping it continues for many moons to come. Best always. I plan to push my mpn specialist next time I see him to try Besremi. My new local hematologist who has only been out of training for 3 years told me that Besremi was only for those who fail HU. We are not likely to get along for very long.

[hunter5582 in reply to Meatloaf9]

Sigh. That is Jakafi that is for those who fail on HU. Hopefully the new hematologist has an ego that permits education about MPNs. Otherwise that doc will need to be replaced.

All the best.

Go Mountaineers!

[Bobadog]

Hi Hunter,That’s great news.I was wondering how the Besremi was going for you.

Many thanks for the update.

I realise I need a cool bag to transport the Peg ,but do you know if the same rule applies with Peg and X Ray machines at the airport?

Good news about your new job and I hope all goes well for you.

All the very best,

Bobbie

[hunter5582]

I did not even know about the recommendation for no X-ray machine and Besremi until I happened on the travel letter packet from PharmaEssentia. I did not see it anywhere else, including is the standard patient handouts. I am assuming that if there is an issue with Besremi, it would apply to Pegasys too. it may just be that they really do not know and are just being cautious. I am expecting calls from both PharmaEssentia and Biologics. I will be sure to ask about why no X-ray.

[Bluetop]

Glad you have more poaitive news.

[Poppy6060]

Hi good news for you hope it continues to work well and thank you for the good information Poppy

[Pat032018]

Hi Hunter, Glad to hear good news on your side. I had my third Besremi injection today. I had CBC test prior to today's injection. The most significant result of the CBC is the reduction of platelets from 1100 to 800 after 2 injections (first 100 mcg and then 150 mcg); and the WBC from 19.7 to 9.6 (big change) that took it to the normal range; the hematocrit went from 42.2 to 40.8 (but the lower limit of the normal range is 41.0). The prescription is to increase the dose by 50 mcg every 2 weeks until 500 mcg is reached - maybe I would talk to the hematologist to keep it low at 150 or 200 mcg (for a length of time). Side effects are insignificant - maybe itching that is manageable anyway. God Bless.

[Pat032018 in reply to Pat032018]

I only have phlebotomy every 6 months since my diagnosis 4 years ago and daily aspirin; and no other treatment.

[hunter5582 in reply to Pat032018]

That is a very good response. Glad to hear that you are responding so well to Besremi.

FYI - while the reference range for HCT can vary by lab, this is pretty typical

"Generally, a normal range is considered to be: For men, 38.3 to 48.6 percent. For women, 35.5 to 44.9 percent."

mayoclinic.org/tests-proced...

PV treatment target for males is HCT<45%, for females HCT<42% or 43%. It sounds like you are where you should be. Hopefully the platelets will continue to come down to whatever target you have set.

It is great to hear another success with Besremi. Please stay in touch and let us know how you get on.

[Pat032018 in reply to hunter5582]

Hi Hunter, Thanks for all that you share with us.

Just before my fourth injection of Besremi yesterday, I went for blood test. The results came out today where HCT was 39.4, WBC was 11.3 (slightly higher from previous); but most importantly, it somewhat concerns me that my HGB keeps going down and it is at 11.4 (down from 13.5 before Besremi (and descended to 12.3 after the first dose, then 11.8 after the second). Should we expect further decrease in HGB as I follow a 50 mcg increase each injection (until 500 mcg is reached). My ferritin is slightly higher to 10 right now (up from 8 or 9 previously).

I plan on increasing my intake of iron rich foods now that I am on Besremi.

My concern is that a lower than normal HGB means anemia. However, I do no know the symptoms of anemia as I am still active. Example, I am able to play 2 hours of pickleball 3 times a week.

I would appreciate your thoughts; in addition to asking my hematologist about a decreasing trend in HGB and is now below normal.

Regards and God Bless!

[hunter5582 in reply to Pat032018]

I would not be too concerned about the HGB at this point. The normal reference range for HGB at my lab is 11.20 - 17.50. Other labs show different values. "The healthy range for hemoglobin is: For men, 13.2 to 16.6 grams per deciliter. For women, 11.6 to 15 grams per deciliter"mayoclinic.org/tests-proced...

What really matters most is how you are feeling. I would suggest following HGB and all of your other numbers carefully as you are in the dose titration stage. I would also suggest reviewing you dosing strategy with your MPN Specialist. There are different approaches. Are you going to use the lowest dose needed to achieve hematologic remission or the highest dose you can possibly tolerate? Bear in mind that not everyone can tolerate 500mg and there is debate about whether the intrinsic risk of seeking a maximum dose is worth the intrinsic risks. We have been discussing this issue on another thread. healthunlocked.com/mpnvoice...

Since you are on the forth dose, am thinking that you likely are switching from having been using venesection to control HCT. This does induce iron deficiency, which is its purpose. Ferritin is a very fuzzy measure of your iron levels per my hematologist. You actually have to look at a variety of different lab values to accurately assess iron. It can take longer than a year to replenish depleted iron stores through diet alone. That is the approach I have taken. it is working for me.

My main thought would be to think through which treatment approach you want to use in setting your Besremi dose. I am at 100mcg and it is controlling my numbers well enough to consider me to be in hematologic remission. The Besremi is putting my into lymphopenia and my neutrophils are hovering around the low side of the reference range. I am also having some minor transient rashes and generic itching. My MPn Specialist does not want to raise the dose at this point, nor do I. This is based on how I have set my goals and what I am willing to risk/tolerate.

Do please stay in touch and let us know how you are doing.

[Pat032018 in reply to hunter5582]

Thanks Hunter for the response. I appreciate the detailed information you provided.

I just got an email response from my hematologist to keep my dose as is at 200 mcg for some weeks as I complained about the downward trend in HGB.

He also suggested to take iron pill every other day/week (sorry I for got the interval) for my low iron. I told him that I will consume food rich in iron, as I like them anyway, instead of taking iron pill.

I am not feeling well today because of colds (hopefully not Omicron); no fever. I also think that Besremi could induce a flu-like symptoms, which was something I complained to PharmaEssentia, even though these are manageable even without common over-the-counter treatment. So hopefully I feel better in the next couple of days.

I appreciate the link/discussions about dosing Besremi and will read through all of them.

Thanks again.

[hunter5582 in reply to Pat032018]

That sounds like a good plan. Given what you are describing, 200 mcg may be a good dose for you. At least for now. I also agree about using food rather than iron pills. Iron pills stop me up like a cork. Most unpleasant. Iron rich foods take longer but are far easier to tolerate. And taste better. I like clams, osysters, octopus, lean red meats, etc.

Hope the cold sx xlear up. And is not Omicron. i had Omicron. it is not nearly as much fun as it sounds like.

Do chime in on the other thread. All views and experiences inform us all.

[Pat032018 in reply to hunter5582]

I tested Covid negative from the home kit sent to us free by the government. Thank God.

I am deliberately consuming iron-rich foods, and there are many of them; and also minimize iron absorption reducing substance - including cofee and tea.

From reading my CBC and ferritin/iron test results, all are pointing to low iron as the source of blood/bone marrow parameters that are out of range.

In the meantime, I will try to live normally as usual. I am finding playing pickleball at least 3 time a week as something relaxing and healthy. It is a good activity that is easy to learn and people of all age ranges play this game - just sharing something that I thought would be beneficial to all.

By the way, my itching/pruritus have been absent for more than a week now.

Thanks again.

[hunter5582 in reply to Pat032018]

That is good news. Sounds like you have a good plan as well.

[Mustang50]

Brilliant news! Glad your doing well.

[Buggerbear]

What wonderful news and so glad that the Besremi is working so well! Safe travels on your upcoming trip!!