I recently got a 4th VAF update. 7% Jak 2 allele from 14% at Dx. The plot here shows the progress as it relates to my therapies. As seen here it continues downward, although at a slowing rate. Nice to see.
I had a virtual visit with Dr Jason Gotlib. He says the most recent reduction is likely lingering effects of the IFN since Rux also cuts it but usually does not act that fast. But I suspect there is not much VAF data like this plot for switching IFN to Rux.
My take is the reduction was slowing even if the IFN had continued. This is typical in other IFN plots we've seen. Likewise the reductions tend to look less dramatic when starting at lower values.
If this was a lingering IFN effect the high dose I was getting (140 with only ~75 needed for CHR) did not reduce VAF any more than a lower dose would have. The rate was slowing even at 140.
The next reading should more clearly show any Rux benefit.
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One note from Dr Gotlib is that a rechallenge with IFN is not advised or me. I agree, my Sjogren's takes any excuse to get worse. He has one pt who also got Sjogren's likely from IFN, but they must have stopped in time as it remained mild and no vax trigger in that case. He has many pts on Bes, main adverse issues are the familiar liver counts, with only that one having autoimmune danger.
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This looks like good news on your response to RUX. We are very fortunate to have more options now. The IFNs and JAK inhibitors are a significant step forward in treating MPNs. We now have more and better options than we did in the past. More options are in development that will improve our options. Hopefully everyone will be able to access these improved options as they become available.
You’ve been off therapy for almost 3 months. It explains the slowing rate of the JAK2 response. Besides, the molecular response is rarely linear or regular over the years. So your molecular response to the various treatments is very encouraging.
My counts held up for those 3 months, except the under range lymph almost instantly recovered after the quit.
At month 6 you can see VAF decline was already slowing while on IFN. The curve is surprisingly consistent independent of the therapy changes. But maybe it would have steepened again on all IFN. Without steepening I will not see the magic <2% range.
As I noted these declines are usually reported from much higher starts and tgus look more satisfying there.
I am so happy for you! I am so glad it is working out. So far I don’t think Besremi has made my MS worse.🤷♀️ Still hoping it works for both, but you know I am an odd duck!!! So glad Rux is working for you and I hope all your old stuff gets better. I don’t think I ever told you I think the Covid booster did something to me. I can’t prove it but my counts were good before that then never the same then they found MS. And I support vaccines. I just think because I had Covid I had a reaction. Hopefully this statement doesn’t upset anyone. Everyone should make their own decisions. This is my opinion nothing to prove it and it only applies to me. You are still in my prayers
I recall you've gone with the IFN-a,(Bes) rather than IFN-b (ie Plegridy) for the MS/MPN. How are your MPN counts on Bes?
So far my counts have responded well to all 3 meds I've tried (HU, IFN, Rux). On IFN and Rux the numbers appear almost like I don't have MPN. Look fwd to more VAF results on Rux.
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On the vax, I'm with you as a (former) full pro-vaxer. I now consider it grey area with a trade off I feel the flu vax, which was my autoimmune trigger, to be not worth the risk trade off. It's not that effective even in a good year and the adverse risk is yearly. I used to get it every year.
At the opposite end is measles and the like, very effective and done only once or rarely. No brainer to get these, I include Shingles too, esp on Rux I'm very happy I got it.
Covid vax seems to me more favorable than flu vax on the risk/benefit scale. But if I get another it will be Pfizer as this is a lower dose than Moderna.
They have an unusually definitive conclusion in this one case: "The time between vaccination and onset of symptoms favors this association, (MS to Vax) supported by the lab and imaging findings which confirmed the diagnosis. "
I've got similar for my Sjogren's and my preceding brachial neuritis is a known association.
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Some autoimmune therapies are directed to reducing IFN-a levels, good reason I am not a candidate for any more IFN.
My counts have been pretty good. HCT and wbcs are normal. Platelets are 700🥲. But I have had some female issues and we ended up doing a mini phlebotomy in May, my hCT was at 45.0. In hindsight wish we would have just increased the Besremi or rechecked it in 1-2 weeks as it could have went down after that my female issues started. But this can buy me some more time to get the dose right since I shouldn’t need a phlebotomy hopefully ever again. I am on 175mcg. I still see me needing to be 200-250mcg. But my last HCT was 40, wbcs 5.6. Just didn’t want to go up further just yet because my platelets are super reactive to bleeding! So between the phlebotomy and the female issue we felt they may still be up. As in January I was at 1.7 million so huge progress just need a little more tweaking I am guessing. I go to MD Anderson in August and likely if not changed will go to 200 or 225mcg. So far no side effects, surprisingly I feel better on it. It did kill my thyroid, probably Hashimoto’s but I was never hyper. But as my friend said, “there is a pill for that”! So taking thyroid medicine. In my case we are hoping it works for both. Blood seems to be responding and probably would be faster but my oncologist is terrified of side effects so taking it slow. And Dr V left but he reassured me it may take a year. Has really been 4 mos of real dosing. I imagine when I see the new doc will get better direction on how to proceed. But feeling good! Glad to hear they had an alternative for you and you are doing well!! Super great news. Hoping I get to where you on with Besremi. I think I will I just trying to be patient. And feeling good, so focused on that. Thank you for asking
I am just never taking another Covid shot. Just by my choice. Kind of figure it isn’t necessary anyways since technically interferon can treat some viruses. 😆 But I know I can’t prove it but I know my body. Not saying it caused it but it did something to me.
It’s so nice to see this post. I’ve been thinking about you and wondering how you’re doing. It’s good to see that the Rux is serving you well, and I hope it continues to keep your VAF and other counts under control. I’m betting it does. Take care, and thanks for the update!
Thanks for the thoughts. I went thru a 2nd nasty stretch. I'm now able to think again and leave the house without fear. Hoping these don't become a habit.
You're right that at least if VAF doesn't start rising it's a good result. Dr Gotlib indicated if it does go down on Rux it will be slower than with IFN. Most VAF/time data is for higher starting VAF, so this will be interesting to see.
I booked a virtual visit with Dr. Dr Gotlib next month after readying in this post that he had many patients on Besremi. I have seen him prior for second opinion, but not in over 3 years. I thought it would be good to better understand what symptoms I should be on the look out for regarding adverse issues with Besremi. My local HEM (was Gotlib's fellow) has only two patients on Besremi of which I'm one. Thanks for sharing that info. You never know what will help someone.
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Besremi and Rux Combined
