Update 8.8.6 - Follow-up on Imaging Findings.

[hunter5582]

I met with the gastroenterology NP about the findings from the MRI/MRCP. Fortunately, the findings are just something we need to to monitor and do not require any major changes.

Liver steatosis (fatty liver) - Plan is to lose weight. Target 20 pounds. Lose it slowly, about 1 pound per week. Keep the weight off. If this does not work, then by the end of the year the GLP1s will be FDA approved for liver steatosis too. We will reevaluate at that point in time.

Prediabetes - same plan as liver steatosis. Will stay on the Berberine. WIll get another continuous glucose monitor in a few months to see if there is any measurable difference.

Pancreatic lesion - Thinks it is more likely to be a. Intraductal Papillary Mucinous Neoplasm (IPMN) than an incident of pancreatitis. Lipase/amylase was WNL. Will occasionally recheck that even though pancreatitis is unlikely to be an issue. Will do a follow-up MRI/MRCP in one year.

Gallstones - No intervention needed since I am asymptomatic. Recommend sticking with a Mediterranean Diet, which I do anyway (mostly). The NP was familiar with Lysimacha Herb, the Traditional Chinese Medicine herbal remedy that was recommended to me by a friend who used it successfully. She has had other patients who saw a TCM doctor who used this to deal with gallstones. There is no downside to using it so I will add it to my morning tea. We will see if it does any good.

In other news - The cost of Besremi has dropped by $2,000/month on my insurance plan . Besremi is now down to $14,391.02/2-doses (month). I have already reached my annual copay maximum, so I have $0.00 copay for the rest of the year. Glad to see the cost moving the the right direction.

All the best to all of you.

[Ovidess]

My single 500 mcd/ml dose is still $8994.38. Do different insurers get quoted different rates?! My statement does list "other payments: $1798.88 paid by manufacturer discount program" however.

[hunter5582 in reply to Ovidess]

Yes. In the USA, each insurance plan negotiates a different rate.

It is even more complicated than it appears on the surface. Pharmacy Benefit Managers also use rebates (that the patient never sees), clawbacks, and spread pricing in determining how the formulary will work and what the patient will be charged. Some plans will not count the manufacturer discount program payments toward the annual out-of-pocket cap if they are used to pay the patient's copay.

[Mostew]

We are fortunate in UK to still have NHS . despite the pressure it's under ..

[EPguy]

That is good news including the pancreas. No urgency to think about it now.

Gall stones are a sort of thing TCM is really good at. I think my TCM is allowing me to stay vertical based on a test at half dose, which was not enough.

[Cassandra61]

This all sounds like good news if very time consuming to stay on top of. Stay well and hopefully enjoy some spring sunshine.

[Purplechoclover]

This is good news with no urgency at this time and keeping an eye on things. Im having another MRI on the 14th on my liver and bile ducts then got to wait to see whats going on and whats going on with blood clot. I was told i had gall stones last time in may after last mri and will look into that herb you have thanks for the tip. Stay well and have a good day

[Gaithersburg]

Thanks for the update Hunter which I think is good news. It does seem as we age that we have more and more to deal with in our lives, on the medical side, which isn't always mpn related and it can become quite the juggling act. I am not sure if we have access to CTM over in England but will have a look. Great news about the copay too - I remember that well when we lived in the US. Best wishes to you and the family.

[Bluetop]

Glad you have got positive feedback and you have a plan!

[azaelea]

Glad to hear your news and we know you always keep on top of all things medical which are happening. Best wishes for Spring and the following Summer.

[KLCTJC]

This sounds like great news!!! So glad to hear it

[Charliemills]

Hello Hunter. On reading this post I was really interested to see that you use Berberine. I myself am Jak2 pos, taking Interferon and doing really well on it, but have recently discovered i have pre diabetes. Not been offered meds for it yet, but would prefer through diet and weight loss to hopefully reverse rather than develop further. I have researched Berberine, and with my other issues, high blood pressure, high cholesterol it seems a good thing to take, but it says no if you are on blood thinners, I am on clopidogrel, do you have any information on this. You are always very knowledgeable and understanding, so any input would be appreciated. You are a credit to the MPN family, so happy to be part of it. Jan.

[hunter5582 in reply to Charliemills]

I checked with ePocrates, which shows no interaction between Berberine and clopidogrel. According to Chat GPT, Berberine could theoretically reduce clopidogrel effectiveness due to Berberine inhibiting CYP2C19, which is needed to convert clopidogrel into its active form. Note that there is limited evidence regarding this interaction. If you wish to consider using Berberine while taking clopidogrel, I would suggest consulting with a medical professional who is familiar with the use of Berberine. I consult with an Integrative medicine doctor for this kind of question since many doctors are unfamiliar with complimentary health interventions. My own theory is that anything that is biologically active enough to help you can also hurt you and interact with things.

Like all our decisions, there needs to be a risk/benefit assessment regarding the use of Berberine. There might be a drug interaction; however, untreated prediabetes co-occurring with an MPN + hypertension + high cholesterol carries significant cardiovascular risks. You will need to work with your care team to make the best decision.

[Charliemills in reply to hunter5582]

Thank you so much for your quick response and very informative message. I will check with the medical team in the next few days and see what they say, but with the other issues I am hoping they will be positive. Thank you again Hunter for your help. Jan

[Wewo01]

sounds like a pretty good update, Hunter! 😉

[Mieshie]

Good news all around. Congratulations! Appreciate being able to learn from your MPN journey.

[Roxanne22]

Just to add another note of gratitude Hunter, for your sound counsel on this forum; and so pleased to hear your on the whole encouraging results, good luck with your targeted health plans to get you back on track.