Went to see my wonderful local hematologist on Feb 05. What a great doc!. He listens and explains things in the way the patient prefers. He never dumbs things down and is very respectful of the patient's decision making.
HCT is up to 45.4. It is time for a venesection, which I scheduled for next week. The local hemo-doc agreed that I should not consider increasing the Besremi. NEUT is down to 0.98 and the LFTs are still elevated. AST=88, ALT=106, AlkPhos=124. LYMPH is low but OK at 0.83. PLT is great at 215.
The odd thing is that my LFTs are a bit higher this month than in December despite having celebrated a Dry January. I guess that means I should drink more bourbon! 😀 Well maybe not, but it is interesting that the numbers went up.
We reviewed my recent labs showing me in the prediabetes stage. He had an A1c done and it came in at a 6.0. Over the last couple of years the A1c has been 5.9-5.5-5.7-5.9 Glucose has consistently been in the 108-123 range. The 6.0 is the highest it has been. While not terrible numbers, it is more solidly in the prediabetes range. He agreed that it was reasonable to consider treating the prediabetes with metformin, but there was no urgency in making the decision. He preferred to get the opinion from the endocrinologist, who I will see in a month. He recommended that I purchase a Stelo, which is an OTC continuous glucose monitor. That will provide more data on which to base the decision. I definitely prefer making my decisions based on data. Gotta love that data!
We are going to stick with monitoring CBC/CMP every 8 weeks unless I start on metformin. We will temporarily increase labs if I start on the new medication. The local hemo-doc is fine doing increased labs at his office to keep all the data centralized. I appreciate his willingness to provide the best care to his patients.
So, on the whole it is good news. I am feeling fine and able to do whatever I want to do. I feel better now than I did 10 years ago. We are fortunate that our treatment options have improved. There are more treatment options coming on-line that will further improve our options.
Wishing all of you all the best.
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hunter5582
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sounds like a decent visit. Curious on whether you’re still taking the milk thistle to help with the liver or not. Keep on going man glad to hear you’re feeling well, after all that is what matters most.
I am still taking the Milk Thistle Extract. I am going to reach out to my Integrative Med doc to see if she thinks an increased dose would be indicated.
Hunter, so glad you have a doctor who, not only "listens" to you, but respects your decisions. Most don't like to be contradicted. If you don't mind me asking, what dosage do you take of Milk Thistle?
HCT was creeping up on 45mcg of PEG. I would have had to increase dose but switched to Besremi at that point. The issue is the same, as my iron levels resoptr to normal the erythropoiesis picks up. I cannot raise the IFN any higher, so go for the venesection. When rusfertide gets approved, i will consider a combination therapy. We will see what happens.
Is it possible the IFN/Rux combo could help? It seems more members are reporting using this therapy. Even if so getting insurance for that could be a pain.
Glad to hear you're feeling well and that the visit was ok overall. Gotta love data driven medical decisions! Here's hoping the appointment with the endocrinologist goes well. Hugs from NYC.
It’s great to hear that you are feeling well and that you have such a great and collaborative care team, that is so important. Thank you for your detailed updates, they are always so informative!
I am curious - do you think the pre diabetes is a result of the PV and/or treatment for PV? Can it also be an auto immune response? Wishing you the best and good results with the endocrinologist as well as your integrative medicine specialist!
The prediabetes has been off and on since 2011, long before starting on the interferons. It is just getting more consistent now. Theoretically it could be related to the Besremi but I doubt it. Theoretically it could be related to the JAK2-driven inflammation, which does seem plausible but there is no way to be sure how much that contributes to insulin resistance. Aging and 25 extra pounds likely contribute to insulin resistance as well.
Glad the team is open and supportive; it definitely helps with mental and physical aspects.
I hope the venesection does the trick on the HCT again - my own has (at last!) recently dropped after multiple venesections (resulting tiredness hasn’t helped my attempts to chip away at my own extra pounds though). Hopefully Interferon has contributed too but time will tell now.
Very glad you’re still feeling well - a significant win! Hope the Stelo clarifies an effective plan for the pre diabetes.
Not many 'healthy' folk can say they feel better than 10 years ago....It's impossible ,sometimes, to make sense of results. (Re.dry January!!!) As we know . Little bit of what you fancy does no harm ..
I do not permit any doctors to stay on my team unless they meet my criteria for inclusion. It is worth traveling further to ensure I have the team i want to have,
Happy that you are feeling well Hunter Very Best Wishes, you with your own health issues, really help others, lift others too x You said update you re:my high BP and hopefully my inputs help others too. I have started on Amlodipine for high BP, but was really surprised at my bloodworks, since reducing PEG to 90mg monthly. Platelets and other relevant results in the range. But liver enzymes, kidney and thyroid still troubled, dont take any meds for these just try natural things. I did not have these issues until started PEG but haematology do not associate this with the ET, only look at the haem side and divert me to GP with other things. But yep aging contributes too. Good news, I was prescribed 1 injection yesterday, already had 1 for tomorrow, so next prescription due end of March time, will let you all know if its still available then, hopefuly interferon will be in big supply again soon Have Good Weekend MPN buddies Stay Positive
Hope the amlodipine works for you. I took a different calcium channel blocker for an arrythmia. I never tolerated beta blockers for hypertension. I did much better on losartan, an angiotensin receptor blocker. Keeping my erythrocytosis under control made a big difference in BP too.
It may be worth consulting with an integrative or Functional Medicine doc. They take a more systemic view of these issues and can be a bg help managing things. My IM doc prescribed a Milk thistle Extract to help protect the liver from Besremi adverse effects. It definitely helps.
Glad you're feeling ok . How long have you been taking Besremi hunter and can you drink alcohol whilst taking it .
Could it contribute to speeding up the diabetes do you think .
I have a family history of diabetes and heart disease. My consultant wants me to start taking 125 Besremi every 4 weeks . Im currently taking 90 peg every 2 weeks and it's controlling my blood counts . I must admit I'm nervous about changing to Besremi
Hi, I do drink a small glass of wine at dinner and am on Besremi. I have not seen any ill effects, though moderation is key . Try not to be too nervous about switching to Besremi. You could ask to start st 75mcg or 100? I am doing much better on it than when I only did phlebotomies. I do an injection of 100mcg every 2 wks. I also have CBC and CMP panels done every 2 weeks as well. My MPN specialist really stays on top on things! Good luck!
My consultant wants me to take 125 Besremi every 4 weeks . My bloods have been stable for about 4 months now . I'm really hoping I don't get to many side effects.
I have been taking Besremi since February 2022. I started on Pegasys in May 2021 then switched. It is best to limit alcohol consumption when on Besremi to limit adverse effects on the liver. Moderation is a good thing. We need to be kind to our liver.
It is theoretically possible that the Besremi may contribute to the prediabetes status; however, this condition existed long before starting on the interferons. It would likely help to drop 25 pounds but that has remained elusive.
I would not worry about switching to Besremi. I found no difference in these two forms of interferon. You may find a need to titrate the dose when you make the switch but that is not a big deal. Just increase the frequency of CBCs/CMPs until you get the numbers where you want them.
Thanks, I wish you the same. What about urea, acid urico and acid folic? No too much but worry about. Maybe, can it for Besremi? Looking for information
Morning Hunter it is a joy reading many of your posts as much because of the conversations you are able to have with the medics looking after you and how much simply being listened to can effect the outcome even if that is just peace of mind . The ability to have any influence also lifts the spirits .
I do wonder how often increased abdominal fat which in my case feels like it co exists with this condition and treatment contributes to diabetes. I know people who were found to have this condition during investigations for type 2 diabetes so is it chicken and egg or does undiagnosedMPN create so many other issues . L
I do carry most of the flab on the belly. Will keep working to eliminate it. While there is no causal relationship I know of, there is a common theme of inflammation between MPNs and T2D. Systemic inflammation is not our friend.
good news overall as you noted. Very happy your dedication and hard work with/ without bourbon is well worth the effort. :). Thank you for sharing the update and appreciate comments that have helped many of us. Take care!
Sounds like you are doing well! I would 100% be on board with more bourbon!🤣. Sometimes diet will affect LFTs too. Do you eat a lot of red meat? Or if you ate a lot of high calorie meals that sometimes can do it. Do you exercise? If you don’t if you start could help too. I exercise 6 days a week, and has helped my cholesterol which can also help liver health. And when was your last shot and when did you have labs? My neurologist said INF makes you liver “sweat”. So I will only do labs like a few days before my shot not right after it. I have labs this week, what I call the full meal deal! Hoping for good results!❤️
I do not eat a lot of red meat but do eat some. I often eat venison when I consume red meat. I stick with a Mediterranean style Diet mostly. I do exercise but not as much as I should. Will be working to correct that in the coming year.
Thank you for the well wishes! I feel great! So hoping that carries over and shows up n the labs. I have heard you mention before you have some pounds to loose and pre diabetes. Any thoughts a GLP 1? Everyone else is doing it!🤣. Just makes me wonder. They just seem to be popping up everywhere! I have so many patients on them. I can’t keep up with the names they are cranking them out so fast. Seems safe and very effective. Obviously not appropriate for all but was a thought. Metformin is an oldie but a goodie, but sometimes has additional liver issues which is the extreme. In fact just double checked myself and looks like they removed some older side effects they used to list. Saw the 100th commercial for these and thought of you! Cost to me would be the biggest hurdle, but who knows seems like you can just go online and get this stuff these days! Wishing you the BEST! Will keep you posted on my stuff on Wednesday! Go Chiefs! Quarterback is from East Texas, gotta support! (No offense to Eagle fans🤣)
We did discuss GLPs. The MPN Specialist and local hemo-doc are both mare familiar/comfortable with metformin. There is some history of use of metformin with MPNs. Not much in the data about GLPs with MPNs. We will see what the endocrinologist recommends. I will be putting the glucose monitor on today so will have more data by the time I see the endo-doc. I also scheduled an appointment with the Integrative Medicine doc. WIll have a decision by early March on next steps.
Looking forward to the Superbowl. Agree - Go Chiefs!
Sounds like wonderful news. I also have the greatest Hematologist/oncologist. Very patient with me and always answers my questions. My platelets are now below 300 and have been for several months. Still taking Hydroxy and no side effects.
Hunter - thanks for the update. So good to hear that you are feeling well which, at least for me, is the most important metric. Interesting on the pre-diabetes. I too had been flirting with official pre-diabetes for years (prior to diagnosis) - glucose wasn't always elevated - about every other reading - and the A1C has been in the high 5's. I actually tried to go on metformin (both for the potential weight loss and cell rejuvenation benefits) but my GP pushed back and said let's try to get my weight into a better state and see what happens..so that's the struggle we've been on and it seems to have worked as the most recent glucose readings have been on the lower end of normal (so good) - we'll see if it continues....
We will see what happens with intervening in the prediabetes. I did not know that Dexcom had come out with an OTC continuous glucose monitor. My local hemo-doc told me. He noted that some people lose weight when they start paying more attention to what the foods they eat do to their blood sugar. I like the idea of going to the endocrinologist with more data. that will allow for making a more informed treatment decision.
Feeling good is the most important metric in my goal structure. I make that priority clear to my treatment team at every appointment. Every agenda leads off with my Treatment Goals,
Treatment goals:
1. Extend quality of life.
a. Protection of cognitive function is the single highest priority.
b. Protecting vision, hearing, other senses, and mobility/physical abilities second priority.
2. Extend length of life (only when QOL is intact)
a. Philosophically – better to get less tx benefit and preserve QOL with any tx.
b. My medical POAs have specific instructions regarding my care and when to d/c all tx.
Wonderful news that you feel so well, Hunter. Shame about the A1C going up. My husband and I trialed the continuous glucose monitor for 2 weeks and found it really interesting. My levels were more smooth whereas my husband’s were more erratic, high and low. Neither of us are prediabetic but it was advised to try them to understand the glucose side of trying to lose weight. Best wishes.
So happy to hear you have such a good team. I too have a good team - cardiologist, GP, Hematologist, endocrinologist and rheumatologist. I’m on Wegovy and have lost 70lbs. Most importantly my metabolic labs have completely turned around and cholesterol, triglycerides, A1c, glucose etc. AST ALT are all in range. HCT- 46 and PLT 370 to 400, so would like to see lower. I had open heart surgery 9 years ago was diagnosed with RA 5 years ago and ET 3 yrs ago. Now I too feel 10 years younger and I am 78 going to the gym three days a week. I think weight loss has given me a new life and I read many struggling with that issue. Good luck and once again as I’ve said in the past thanks Hunter for being so generous with information about our misfortune, however, at the same time turning it around for us where we can see that one can feel 10 years younger.
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