I just completed a round of consultations with my Integrative Medicine doc, gastroenterologist, and endocrinologist. The good news is that the one venesection dropped my HCT back down from 45.4% to 41.8%. I should be good for another year if the pattern stays the same.
I have been discussing options to manage the prediabetes in the context of PV. My Integrative Medicine doc recommended trying Berberine, which can be effective and is generally easier to tolerate than metformin. I started on that and will see how it goes. She also ordered an Abdominal Ultrasound due to the recent increase in LFTs. It was just a precaution since we know that the Besremi has this side effect. It turns out that it was a good call. There were some findings.
IMPRESSION:
1. Fatty liver and 3.4 cm hypoechoic solid lesion in the liver versus focal fatty infiltration. Recommend further evaluation with pre and postcontrast enhanced liver protocol MRI.
2. Cholelithiasis and possible additional gallstone along the junction of the cystic duct and common bile duct. Recommend further evaluation with MRCP.
The fatty liver was not a surprise as I do need to lose about 20 pounds. The lesion on the liver is larger than what has been seen before that was thought to be a hemangioma. The gallstones was a surprise as I seemed to be asymptomatic. It seems the elevation in LFTs may be more complex than just the Besremi.
We are not going to make any further decision until the MRI/MRCP diagnostic imaging is done. It is a good thing I am used to going down the tube and that it does not bother me. Based on what the imaging shows, we will come up with a plan that makes sense. Losing weight is definitely part of the plan.
So on to another medical adventure! One just has to love these medical learning opportunities. I think I will need to work harder on my treatment goal to be "The World's Most Boring Patient."
Wishing all of you success on your journeys and medical adventures.
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hunter5582
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Certainly is another opportunity to learn something! My wife's liver has a 'lesion' which was picked up on MRI last year, she's just had another MRI but we haven't seen the professor yet. Last year they reckoned it may be growing blood cells! But she's blown up with ascites now, so many more blood tests at this time . Fingers crossed for you all.
Also your positivity which I am sure comes from the joint efforts of all those involved in your care and the feeling that you have so much input .. it makes all the difference . L
good luck Hunter. Losing weight is difficult but now I seem to be doing so without trying! I have been pre diabetic and went to a series of classes to help awareness- it did work. But I swear on Michael Moseley - a doctor now decd but dedicated to helping people lose weight.
Thanks for your latest update. I'm sorry but you have failed in your quest to be 'The World's Most Boring Patient'....... Better luck with your quest to loosing the stubborn few pounds. And best wishes for a clear path following your MRI/MRCP results.
I've discovered the occasion to watch weight since starting Rux. Having been on the other side, I'm happy to have this over wasting away.
I keep a lid on the new lbs by eating the same stuff, just less of it. My thought is this is best way to keep it up long term. My hubby has been getting used to my new desire for less where just recently I needed to stuff it in. One example - we used to have three mini chocolates evenings, now it's two. My goal has been long term ~10% reduction in intake. It seems to be working so far.
Hoping your 20lbs might help those LFTs and the other stuff.
We must follow the path. There is no turning back. Did you blood test show you anything about liver? LITs = Liver Function Test is the meaning, identificado it?
The elevation in LFTs was the reason we did the abdominal ultrasound to look for a reason beyond the Besremi. It seems we found a reason. I should know more in a few weeks.
Sorry the “boring patient” Name has temporarily gone and wishing you quick resolve of matters found. You have a wonderful team looking after you, wish it was so in N.E. of England. Best wishes! Please update us when more results are known. Fran
I definitely would love to join the “boring” patient club too. Guess we can both continue to try to be as boring as possible! Wishing you the best of luck down the tube, will likely have to take my own in a month unless I can convince my neurologist to wait another year! I am a peloton junky! You should check it out. I have the bike and I now am an owner of the beautiful tread plus. But they have all kinds of work outs at all levels. And they have an app. On vacation I will pull up work outs on my ipad and do them. It is a wonderful community. Just a thought since they have pretty much any work out you can imagine! We are likely going to invest in their rower too. Will warn you it is addicting! Especially when you find instructors you like!🙂. Will be praying for good MRI results. And has anyone mentioned GLP1s to you? Wonder if that is an option to help loose weight. Everyone else is doing it!🤣
GLPs are on the list of possible treatments. There is more experience with metformin in the context of PV however. I am not in a hurry to make a decision. I want the results of the imaging first and then will review the options with my care team.
I really need to get to the gym more. It helped the last time I pushed to lose weight.
More gym time is a great idea. For myself I've found that home gym equipment gets used much more frequently. I've experienced amazing results in less than 30 minutes/day, 5X/week. Some turn their noses up at the Bowflex or TotalGym, but they are amazing at burning calories and building muscle if used consistently.
You are getting closer to the most boring patient goal as least as far as MPN goes. It may be now that passage of time is adding new twists. My gall bladder failing was a sneaky surprise 10 years ago, well before MPN. Started as a suspicion stone then in a matter of days escalated to serious pain and gastro infection that required its removal. Seven days in hospital. So please do keep an eye on what is happening to yours.
Thank you for another learning moment. You have been very helpful increasing my awareness of all things MPN. I sincerely appreciate the helping hand.
thanks for the update Hunter. Always learning through you.
I’ve consulted with a couple of IM clinicians but their lack of familiarity with MPN patients is a limiting factor. Do you know if your IM is able to consult across state lines(I’m in CA) assuming they are not an MD and don’t have the state licensing issues. And if so, do you think he/she would be willing to do a virtual consult? Much thx
My IM provider is a MD. A very smart one. She has licenses in several states (VA,WV) but I doubt CA. She does virtual consults in states where she has a license.
While she is not an expert in MPNs per se, she is very knowledgeable about how the body works as in integrated system. She immediately recognized the importance of the systemic inflammation caused by the JAK2 mutation. Dealing with inflammatory diseases is a part of her medical practice. Finding a good IM doc is a very helpful addition to a MPN care team. Integrative Oncology is gaining wider recognition, particularly in the MPN space. Not sure where you are in CA, but I would look to some of the cancer treatment centers. Some have an Integrative Oncology branch these days,.
Thanks. I've tried that in Los Angeles but not getting very far. The couple i've spoken to are more generic re oncology with no specific recs re: PV. would you be willing to ask your IM if she has a colleague in CA she recommends OR another colleague outside CA who is not an MD that i could do a virtual visit. if you cant or it's inappropriate, no worries.
Not the worst summary overall. Do they think any of the conditions are made worse by the PV or medication? Probably harder to know, but I suspect you'll have a reasonable opinion. For what it's worth I spent a year being much more careful about the sugars I was eating and my cholesterol ended up the best in 10 years. Interesting the relationship if there was one.
I feel your pain. Every new year one of my resolutions is “No new diagnosis”. Haven’t met that goal the last 3 years. I hope the liver/gallbladder pan out be to he nothing serious. As for the pre-diabetes, losing weight, exercise, monitoring carbs can turn that around. I think I you mentioned previously that you have a CGM - they are the best tool to manage your blood sugar.
Sorry to hear that there are additional health developments and you are defiantly not "World's Most Boring Patient". Just suggestion to keep your weight down, focus more on lots of salad intake before your main meal, as starter. It works miracles. Since you live in USA as to bread there, one have to be very careful as it is not same what we have in Europe. Perhaps you can make your won bred so you know it is done without additional nasty stuff in it, providing you get some healthy flour, substitute is also good as to almond flour. Wishing you well.
Many thanks for sharing. Losing weight is an uphill task but am sure you’ll soon be on a winning streak and shed those extra pounds.Your posts are always most informative.
I’ve just noticed a flat black lesion on my cheek near the hairline and GP has referred me to local hospital for medical photography in dermatology dept. Apparently it’s supposed to be as accurate an initial diagnosis as face to face appointment. Has anyone undergone this?
I am not sure which device they are using. I am participating in a cutaneous neurofibroma research study using a very fancy medical 3-D imaging device that is currently used for skin cancers. It is quite interesting and will hopefully be a tool that can be used in the this setting. You can see what the device looks like in this picture.
Hi Hunter, I very rarely post. However couldn't go by without wishing you all the best. I hope your latest issues can be quickly and easily resolved. Thank you so much for all your balanced and informative contributions to this site. They've meant so much to me.
You are not boring Hunter but you are certainly funny! About your fatty liver start taking milk thistle it is very effective from my own experience!! I took two bottles and that was it. Now my experience from my new doctor from whom I had many hopes, waiting for my biopsy, I saw him twice and the only thing he could tell me is that my disease is incurable!!! As if I told him otherwise. I said I know that but in case I have progressed, there are medicines aren't they? No answer both times!!! So I am quite frustrated and have no idea where this will lead.
I have been on milk thistle extract for a while now due to the elevation in LFTs caused by Besremi. It was 3X/ULN but dropped to near normal with the milk thistle extract. Recently the LFTs have crept back up to 2X/ULN. That is why the doc had me do the ultrasound. For now we have increased my milk thistle dose from 500mg to 750mg. I am waiting for the results of the MRI/MRCP before making any other decisions. We will see what happens next.
I hope the new doc situation sorts itself out. It seems a bit off putting to focus on "incurable" rather the focusing on "manageable." You are correct that we now have the option to target preventing progression as a treatment goal. While there are no guarantees, we can improve our odds of progression-free survival.
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Still off Besremi
Eight months: Besremi Update 
