Well, saw local oncologist today. He said I have been in hematological remission for almost 2 years. He said his reaction usually would be to reduce, but last time I was at MDA Dr Marasova said she wouldn’t recommend any lower than 150-175. I am on 175mcg every 2 weeks. He said he would like to see if I am in molecular remission but test is expensive and hard for him to get covered. He basically said he wants MDA to do it. He said if my JAK is zero I maybe able to stop everything which scares me! For now we are not rocking the boat. Staying the course waiting to see what MDA says in 6 mos. It was all good news today. I think before I would ever stop I would want to inch down. I just thought it was interesting that is even a possibility. Years ago before Dr V retired he said it was possible. Besremi has saved my life! So grateful for modern medicine and thanks to everyone on this site! Everyone is so supportive! Will have another hurdle in April, a MRI of my brain will likely reach out for any good vibes before I do it!
Today’s visit 😊 Besremi: Well, saw local... - MPN Voice
Today’s visit 😊 Besremi
Glad to hear that Besremi is working so well for you. I would agree with your decision to continue on it for now; however, at some point you could consider a dose frequency reduction. Reduction to 1x/month is indicated for people who are in CHR for 1 year. besremihcp.com/dosing/?utm_...
I am a bit perplexed at your local hematologist reluctance to order the JAK2 quantitative analysis. While prices may very, the test is available for as little as $358.75. I have never had a problem getting the test authorized in the 7 times it has been done. I usually go through LabCorp.
Cost from Johsn Hopkins $358.75 pathology.jhu.edu/test-dire...
Cost from Jason health $688.00 findlabtest.com/lab-test/ge...
Wishing you all the best.
To be honest I have no idea why he didn’t order it. I think I am his only pt on Besremi and he just wants to see what MDA says. I agree with the reduction. August will make 1 year of control at this dose. So I see the reduction coming then for sure if not sooner, but will see, He wants me doing a cbc every 2mos.
good luck to you snd msy god bless you
WOW ! This is such wonderful news. Thank you for sharing and keeping us posted. It’s great to hear such positive news! Well done!
That's fantastic news. So happy for you!
This is excellent news!!! I'm with you -- Besremi has made a huge difference for me. I'm so happy it's working so well for you!!!
Great to read your good news.
Dr Jean-Jacques Kiladjian’s presentation ‘Long term outcomes of interferon in MPNs’ is relevant and worth a watch if you haven’t already seen it? Thanks to Paul123456 for having posted the link recently; the talks were very helpful and informative.
I’ve had a few MRIs and find them daunting too (keep my eyes closed once in the tube!) but it does mean the medics have a really clear view. Last time I tried to treat it as a golden opportunity to do absolutely nothing for half an hour (altho’ with some weird loud knocking noises going on!). The team were good about telling me whether each scanning section would be short or a bit longer which helped a lot.
I just lay really still in the MRI and just tears fall down my face. I wish I could look at it as just a time to relax, but it unfortunately reminds me that I have to deal with this for the rest of my life. I keep telling myself one day I will not be nervous and I will be ok doing all of these tests! It just hasn’t happened yet! However, I am hoping if they make me do this one coming up that after that I am going to tell them next one will be in 3-5 years pending symptoms! I have already had like 5 in not quite 3 years! They are just daunting, like you said. But putting my big girls pants on this year! Learning to be soooo grateful for this life and my family and all the daily blessings I have. Thank you for the encouragement!
That's so sad! I was quite rattled by the first one I had in the past few years and had a tear or two in the changing room afterwards. So much depends on how supportive the MRI team are and whether they talk to you or just get on with it. Hope it all goes well in April and that they're super supportive.
What is the reason for your MRI . Is it related to the MPN diagnosis?
Not sure if you meant to ask KLCTJC or me? My most recent MRI followed a prolonged atypical migraine aura / TIA. That led to PV diagnosis because the MRI showed I'd later had a, fortunately tiny, cerebral infarct (stroke).
Another thread 'Migraine aura and aspirin v clopidogrel' has more details.
Interesting to read your previous posts - we were diagnosed at the same time (altho' different ages). I had also 'luckily' been put on aspirin in the past (problems in pregnancies and then when I had the 'event' last year), we both have high Hb with v low ferritin. I’ve struggled with the latter as medics can assume I won’t have symptoms of iron deficiency as my HB is high but I can be v tired and have low exercise stamina when the ferritin bottoms out.
a couple of things to factor in, I heard Dr Silver say that even if bloods and AB imply remission some patients can still show MPN in a BMB.
I don’t know that much about Marasova at MDA , if she is DrV replacement she is perhaps up there. I would probably follow advice from her or another MPN expert as opposed to the local
I have seen her twice. She inherited me after I started Besremi and I started doing well pretty immediately after starting. I think it took less than 6mos for me to achieve optimal labs on Besremi. So, she didn’t really have to do much. I am going back in 6mos and going to talk to her about what he said. Will be watching my cbc every 2mos in the mean time. I even talked to local doc about reducing to every 3 week injection to start. I just don’t want to rush reduction. I want to reduce as slow as I increased the medication. And then see what happens. The other issue is the MS. With the Besremi seeming to work for it, not sure what to do moving forward if they say to stop completely. But I think this is classic for medicine. All trial and error and god made us all different. So, it is an exciting time and will just see what happens moving forward.
this is quite encouraging news. Congratulations! Besremi has shown very positive results for you. Thank you very much for sharing. It boosts confidence and hope for those of us still on the journey. Stay safe!
I am SO HAPPY FOR YOU! You are right about all you said. Better slowly lower. My MPN specialist in Austria is very down to earth. She told me, (I also read it) that when Besremi is taken for 5-6 years, many patients go into remission (Remission with no Besremi) for 2-3 years. I am not sure if you are in true remission if you are still taking the Besremi.
I stopped the treatment last June due to terrible side effects after having stopped/started several times with 50mcg. After a 10-month break, I'll be restarting at the end of March. I know the stuff works. I'm trying to get my body to the point that I can tolerate it.
👍😀
Congratulations! I didn't know it was possible to be in remission from a blood cancer.
This is such great news, my friend. Congratulations, and keep going!
Hi there - This is fantastic news thank you for sharing - having started my BES journey only last Nov, it's so encouraging to see some exciting news on our forum shared by many who are able to tolerate the drug - I have been ok at my v small dose of 50mcg per fortnight so tomorrow I will increase slightly to 70. All of the cells are coming down nicely esp platelets which are now under 600 (and had been as high as 1000-1500 generally) and my HCT been at a steady reduced level of .41 and my whites are now c. 12m, were 15-16m - so far so good. Thanks KLCTJC and I hope that you get the answers you seek, but meanwhile you are right to be cautious. Take care, Sarah xx
Great news and happy for your result.
Hi,
Thank you so much for sharing. So happy for you 😊 I think this gives us all hope. I'm due to start Besremi next month and feeling a little anxious. I feeling more hopeful now, so sincerely thank you for sharing.
I understand your anxiety about, what next. Please continue to share your journey. I'm looking forward to hearing all about it.
Lynd xx
starting Besremi is what lead me to this site. Everyone was so helpful and reassuring. This site and Besremi saved me! It gave me hope. I am so glad my post gave that to you!! Good luck! Hoping for same results I have been so fortunate to have!
You may on the path of the red line from this small study a from while ago I've posted on. There is probably no such thing as zero, but there is "undetectable" to the limit of the test, lately I think it's about 0.01%.
I had a brain MRI as we looked for what turned out to be Sjogrens. It wasn't that different from the other MRIs I've done, except the head bracket was unique.
Wishing you continued good things!
Thanks for sending this. Hopefully I am at the red line. Only time will tell!
I have just had so many brain MRIs and they never get easier. They still suck! But praying this one is ok then will tell them I need a break for at least 3 years or longer unless needed.
I was able to put my patient who has sjogrens and psoriasis on sotyktu. So far she is happy. Not exactly sure how the sjogrens is going because it is still early, but will see! Very safe drug! Super happy with it especially for my scalp psoriasis folks. Have you had any improvement on Rux with your sjogrens? Seems like Jaks should help. They are popping up everywhere and for everything! I know Rux is a little different but seems like it is still possible for improvement.
One thing that makes MRI experience less nasty is good earplugs. The ones they give me are no good. I use "Flents quiet time ear Plug" NRR 33 (the highest noise rating I know of) when installed right it works well.
With all those MRIs is your Dr concerned by some indicator about MS progression?
My Derm was not impressed with sotyktu. He said the other options are usually equal or better. Having other options is wonderful, we have some for MPNs, none for Sjo. But I'm pleased you say it has worked well in your practice.
Is your pt's Sjo moderate to severe?
I can't say whether Rux is helping since I would need to stop to find out. Anyway the Sjo is so widely variable for me, I just exited a rare three week span of feeling ok, (only the third such since my Last Dose) now back to normal not-ok. I'm guessing the Jak1 target does some good since it's shared with other Rheum drugs. Jak2 is unique to MPNs, while the other three are seen in rheum uses.
I was rejected from the Sotyktu trial, and three others, bec of the Rux, and the MPN. If I take it I'd be inhibiting 3 of the 4, Jaks1,2, and 4. (TYK2 would have been called Jak4 if they made the connection earlier) I may opt for HU someday if it opens access to the new Sjo drugs we hope are coming, even as Rux is working well. Or a miracle and my VAF goes really low and I can stop, that would be a first though. There are three Sjo trial drugs that don't target Jaks so maybe I could stay on Rux.
I guess I need a Jak2 + 4 inhibitor. But I know of no such thing.
I will have to look into those ear plugs. I don’t think he is concerned about progression, I think it is just to see what is going on up there! I haven’t emailed my neurologist next to see if we could wait another year or if I have to do another one this year.
And I agree with your Derm too. Better drugs out there for psoriasis, but if patients have multiple autoimmune conditions sometimes you can use drugs to treat both conditions. But biologics and Jaks are faster and work a little better than sotyktu. And this really just has to do with drug mechanism. I for see them starting to do drug trials on people who are on more than one of these types of agents. But they still seem to be avoiding people on more than one of these agents. Like Rux and sotyktu together. I hate to hear you aren’t feeling well most of the time. That just stinks. Hopefully you will be eligible to try something in addition the Rux in the future.
And thanks again for sending the information.
I understand now "sometimes you can use drugs to treat both conditions", the pt with Sjo is a great example. Another example is Sjo pts with Generalized Myasthenia Gravis have access to another agent in Sjo trials, Vyvgart. And your case if the MS were more prominent, hypothetical access to IFN-B.
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sotyktu is considered a Jak inhibitor, but this suggests it's milder:
" In testing, the drug didn’t demonstrate any JAK-like acute effects on liver dysfunction, anemia, abnormal blood platelet count or cholesterol level"
This suggests it may not be too risky with Rux.
" TYK2, also colloquially known as JAK4, is part of the JAK family"
fiercepharma.com/pharma/bri...
Some trivia on the name:
"TYK2 was the first member of the JAK family that was described (the other members are JAK1, JAK2, and JAK3)....The mammalian JAK family has four members: JAK1, JAK2, JAK3 and tyrosine kinase 2 (TYK2)."
en.wikipedia.org/wiki/Tyros...
My understanding is if they had discovered it later it would have been placed in the Jak nomenclature.
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My state of down is all too common in Sjo, so I still watch for members here at risk.
I still hate that you feel so bad. I agree, that I don’t see an issue with you trying sotyktu with rux. I feel like no one is using multiple of these meds together. Like two different biologic drugs that do two different things, they only use this stuff as mono therapy. I see that changing in the future, but haven’t seen much of it at this point. My guess they think the risk of infection maybe too great, but I still see it coming in the future. Who knows, but the future of medicine and the changes are bright. Excited to see what comes out in the future. Wishing you a great week! Looking like spring here in Texas, everything is covered in pollen! Like green soup around here, but loving the sunshine!!!
For now Sotyk2 would cost me ~75k per year since it would be off label, even if a Dr would Rx it. Could be worth depleting retirement savings if the Sjo could let up.
It's in phase 3 for Sjo based only on good results with ph 2 for SLE.
Combos are seen in MPNs too, esp Rux+ IFN and quite likely Rusfertide +IFN for some pts in the near future.
Besremi to the Rescue 🤞🏼
Some good news...
Confused
