My doctor has taken me off Besremi for a month. Keeping a close eye on my liver enzymes. I know many have said that their liver enzymes went up but then came back down with time and also that their doc’s were willing to let the enzymes get 10X the normal range before coming off Besremi.
They are going to do a liver ultrasound to rule out anything else. I had to have a phlebotomy a couple of weeks ago.
I’m disappointed for obvious reasons. They have also taken me off Nattokinase and don’t want me to take milk thistle. I don’t think they REALLY think that will hurt my liver but are grasping at whatever is not western medicine.
I am doing what they ask for now. I have a wonderful MPN specialist and team and they are always so nice and put up with me and my supplements but after the ultrasound I probably will start taking the milk thistle for sure. I’m also going to see my homeopath. I know so many poo poo this but she has helped me so much in the past.
I’d love to have some thoughts, input, suggestions and hugs!
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Barbiebreath
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Not what us Bes patients want to happen, sorry to hear of the hold up.
But your livers are about 2x max. The label is ok up to 3x, has Dr noted a specific concern?
How are your CBCs other than high HCT?
Is the plan to restart Bes after 1 month? So happens once/month is the normal dosing after the 1st year of treatment, so your hold is not way long.
Problem with halting both the supplements and the IFN at the same time is muddling the cause. If Dr is watching your liver values, it makes sense to restart only one, restart Bes and then restart supps if livers are ok for a while on Bes.
I'm taking NAC, like the supps you're on it's supposed to help liver. So far my CMPs are ok, but if they went too high I'd consider one of: reduced dose or holding the NAC for a while. I also try extra hard to avoid pain relievers to stay kind to the liver, this came up recently as I suffered from a botched flu shot. But I know this is not always possible.
They haven’t stated any specific concerns but act very concerned! My CBC has a few highs and lows but everything is a point or 2 away from normal. Even my HCT was only 44.9. That’s not awful. After the phlebotomy back down to 41. I was happy to be on medicine that has the potential to actually help. I do hate the never ending rollercoaster ride of this disease. The ups and downs of bloodwork, everyone’s different symptoms and relief of symptoms (or not), doctors that have different approaches and guidelines and everything out of our control. I guess I’m just having a moment. As always, thank you for your response.
The red flag is biliruben elevation. You don't have that. So you're ok up to 5X normal or 150-200 for ALT-AST, you're not even close.
There is another item here I didn't see before: gamma-glutamyltransferase (GGT) I don't get this on my CMP and yours doesn't show here. But to reassure Dr maybe you should get it and confirm it's less than the 2.5x here.
If your biliruben and GGT of the Bes label are both ok and AST-ALT stay under 5X there is no reason to stop the Bes, since Dr has not provided another reason.
You should discuss this label with them. But if you miss only one month for time to get the USound it seems not irreversible as I noted. But unless the USound or GGT show troubles Bes related you have a case to insist on resuming.
I had both USound and MRI on the liver, there is a weirdness in it (a short circuited pipe) but not a worry they said, and nothing to do with the IFN.
I does seem dose reduction is not your fix since you need it for your CBCs, but there's no reason to consider it anyway based on the Bes label.
I hate to do this [J.K.], but I have just have to go ahead and agree with EPguy, and once I get over the pain of that, I may be able to offer a perhaps illustrative example for comparison...
But before I get to that, I think it's necessary to mention that there is another 'liver' enzyme that they don't seem to be following, which my MPN specialist manually added to the LFT [liver function test[s]] they wrote as my standing orders [along with my every-2-weeks CBC]- called LDH [lactate dehydrogenase].
I put it in quotes as a 'liver' enzyme because while it's most frequently associated with the liver, almost any tissue damage can elevate its level.
Now for my comparison: I work in a correctional facility, and as such, the incarcerated individuals [I/I's]** live and work in very close quarters/proximity with each other and the correctional officers [CO's], which makes TB [particularly pulmonary [lung] Tuberculosis infections] a really important concern.
As a direct result, everyone here, including me, the I/I's, and the CO's gets tested annually, and anyone who tests positive, which almost always indicates a latent rather than active infection, gets put on an approximately 9-month-long course of treatment with the anti-TB drug isoniazid [INH], which is not a very friendly medication to take.
It's potentially [often realized] hepatotoxic [damaging to the liver] so we have to monitor them all with monthly LFT tests and physical exams to rule out adverse effects from the treatment.
If [when] they develop elevated liver enzymes, as long as they are asymptomatic [no abdominal pain, jaundice [which is where the bilirubin EPguy ,mentioned comes in], or other acute illness, our threshold for action is 3X's the upper limits of normal, so as long as they stay below that and remain asymptomatic, they stay on the medication.
If they do have to go off the INH, their LFT's invariably return to baseline over a relatively short time frame.
So here is where the comparison enters- this is treatment for a latent infection, which is asymptomatic, non-contagious [as long as it is dormant], and which can be present for decades without ever causing disease; as long as immune function remains reasonably intact.
Compare that with taking [any] interferon for treatment of an MPN [it doesn't really matter which flavor], wherein there are often daily symptoms, an increased risk of arterial or venous thrombosis, risk of progress to MF or AML, and even without those it is [at least technically] a type of cancer [as evidenced by uncontrolled cellular reproduction] so by nature it is always going to be a progressive process, often proceeding in an unpredictable manner.
In short [as if all that text above could ever conceivably be considered short], if 3x's normal LFT elevations are acceptable in treating a latent form of an indolent disease like TB, it has to be at least as tolerable for treating your [and my] PV.
**We're not allowed to call them inmates, convicts or any other terms, except in my case- patients 😇.
BTW, my LDH has been mildly elevated at each draw I've had since starting Besremi in July, and the MPN MD hasn't been at all concerned about it.
On the other hand, we don't know you entire medical history in detail, so there is possibly some reason therein that they are being so cautious- which leads me back to the same thing I always recommend- Ask your medical team why they're so concerned, and if they don't seem to be aware of the information EPguy posted, educate them.
Your life and health are well worth the effort.
Finally, a BIG [virtual] hug- imagine your ribs creaking just a bit- I'm a bit over 6' 1" tall, run about 240# , and I'm an enthusiastic hugger!
I can't find any specific quote in there that is informative. But it is approved and directed to treating already diseased liver so that confuses the liver message.
there is info on reducing ALT via PEG. That is a key goal for treating liver with Hepatitis, PEG's approved purpose, where patients start with high livers. Note Hep treatment usually used a 2nd drug in combo so things are even more muddled. (past tense is bec Hep now has better treatments)
My take is we can know that liver readings can go high on either type IFN, but only Bes provides exact numbers for guidance. A good thought is to discuss with Dr to consider the same Bes liver numbers with PEG. I would do so.
For what it's worth, I have to totally agree with what EPguy has said, and if you take a look at my example re: TB treatment posted above, you can see that this isn't some whacko fringy guesstimate at what's OK, but instead follows some long-established treatment protocols invovling other potentially hepatotoxic medications.
My most recent CMP also showed elevated liver enzymes. ALT=124, AST=87.0, Alk Phos=167. This is all still in the mild range and not uncommonon with Besremi and the other IFNs. So far, my care team has not recommended any changes. Continuing on Besremi at 150mcg as well as the various supplements I take. I see the MPN Specialist on 12/15. We will see what we see after that appointment.
My plan is just to be kind to my liver and not do anything else to unduly challenge it. I may do a consult with my Integrative Medicine doc to see if she has any suggestions.
The next time I see my team, after the sonogram results, I’m going to ask to let’s please stay the course on the Besremi. Im only taking 100mcgs every 2 weeks. I thought things were going pretty good. I don’t know how to be any kinder to my liver. I don’t drink. I never take Tylenol. I could lose some weight but I’m not a huge person. I avoid as much medication as I can. Maybe they are just covering the bases to make sure I don’t have something REALLY wrong with my liver and will be fine to resume treatment . Thank you for your input Hunter. 👍
At this point I just expect the liver enzymes to go up and down while on Besremi. It just goes with the turf. Providing they do not go too high, then I will just go with the flow. There is no such thing as a drug that has no potential negative impact. We are making some fundamental changes in how our body functions with these treatments. The point is for the benefits to outweigh the risks/adverse effects. Some choices in life are like this. I find it best to simply accept this and carry on, saying the Serenity Prayer every day.
As I have stated, I totally agree with EPguy and your posts on this topic.
I also have to say that what BB just said about "just covering the bases to make sure I don’t have something REALLY wrong with my liver" is not only a pretty good guess, it's actually a valid point that bears repeating and maybe embellishing.
If you are on or are contemplating starting a medication that can alter the function of or cause damage to an important organ system- in the case of IFN's- it's most often liver and kidneys, but it can really affect any organ system, and you and your treatment team aren't 100% certain that you don't already have damage or some form of compromise or disease process affecting those organs, you should either get a workup of the organ- for liver and kidney, an U/S and some LFT/RFT labs [preferably] before you start the treatment, or at the very least- get them immediately if your labs change or you develop symptoms that might be attributable to the organ[s].
So either way, Barbiebreath, I think your team is doing the right thing, and if they don't find anything untoward there, going back on Besremi should be a slam dunk.
My AST and ALT were raised after being on PEG… think it was 3x. And EPguy helped w the BESREMI research that said that it was ok for up to 3x I think. Anyway… I retook more blood tests and it came down to 1.5x. I suspect it came down due to the timing of the blood tests the first time was one day after a Peg injection while the next test was 5 days away.
Sending hugs! My AST went up slightly on Besremi but returned to normal, then up slightly again and then down. I was just recently taken off Besremi too but for low platelets. I am getting a bone marrow biopsy to see what is going on. You are not alone. Best of luck to you and more hugs!
I do understand how you feel re. Conventional medicine. I never thought I would need to rely on it...
Hope you have a very good homeopath . They are hard to find. Some are ok but we need an exceptional one . When mine stopped practicing I eventually gave up looking and now see an Ayervedic practioner who I trust
Think homeopathy has a bad name as people don't understand how it works .
I have a GREAT one. She is a no nonsense physical therapist that is passionate about science AND homeopathy. I have nothing against seeing hippie-type practitioners of alternative healthcare but she is quite the opposite of that. Compassionate but not warm and fuzzy at all! 😂
She has helped me with anxiety. I was having panic attacks when I was diagnosed with PV and also alopecia. I documented the journey with my hair. I had been to 5 different doctors to help with this. I was told- it’s not your thyroid you are just getting older and hair thins. I had bald spots. So ZERO help from western med. I tried any and everything anyone suggested. She was confident she could help and she did . It was AMAZING!
I was also on an alopecia support group and I could not get one person to take this seriously and was accused of doctoring photos and even trying to scam people. So I got off the group. I didn’t really belong anymore anyway. My hair was back!!!
Of course there is always the placebo effect but I don’t even care! If homeopathy triggers something in my mind to heal- I’m onboard! Thank you for your supportive post.
Once my hair was back she told me to stop taking everything. On Besremi my hair is dryer and I lose a few more strands in the shower but it’s still good.
The anxiety/panic attack protocol was different. We tackled one thing at a time. That was first. Again, it worked so well that I might have gotten a little too happy. Once the symptoms were relieved for awhile she told me to stop.
My ALT and AST got to 163 and 94 and my LDH shot up to 506 which led my MPN specialist to worry about liver damage. We stopped the Peg for 6 weeks to see if liver would calm down. The levels began to drop and we restarted the Peg at half the dose. We have spent most of 2022 trying to get the does/timing right. The dose which will bring my platelets down toward normal ranges and keep the rest of the blood work readings in normal range while not effecting too negatively my liver. At last reading (3 weeks ago) everything was in range (including liver readings) except platelets which were still about 550 - but as my personal target is <650 I am fine with that with everything else good.
Hopefully your month off will help and over time our bodies will hopefully be able to continue to support our desire to stay on IFNs.
Thank you for sharing. I am going to bring these experiences to my MPN specialist’s attention. Hopefully she will allow me to continue with the treatment.
Sorry to hear your news. Yes, the last thing we want is to stop Besremi.
Different reason but same directive from my HEM: No Besremi shot this week until I have a full cardio workup. I'm hoping the Afib I experienced was a result of stress, caffeine, racing around the house taking care of my husband after his surgery. Not all the other scary things Besremi lists as possible problems. I did notice I was out of breath the day I had afib when I was climbing stairs, even though I had did a Pelelton bike ride earlier.
My liver enzymes were slightly elevated as well. I began taking NAC again (as EPguy mentions in this chat) and had skipped even the occasionally drink.
No. I have never been much of a drinker. It seems like when you are forbidden to do something the more events and opportunities pop up that make you kind of want to! 😃 Lol… but I haven’t had any alcohol.
I hope that all you’re extra running around and biking was the reason for your afib and not the Besremi. Let us know what they say!
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