I started Besremi two weeks ago. My first dose was 100 mcg. I am supposed to take my second dose today, and increase it to 150mcg. The thing is, I had a BMB this week, since my MPN specialist wanted to have a baseline, and prior to the biopsy had some blood tests at the hospital. I got some of the results today and was shocked to see my Fasting Glucose level jumped from 83 prior to starting Besremi, to 121.
I am comsidered pre-diabetic (type 2) but have never had such a high level. My MPN specialist says blood sugar levels fluctuate (My previous test was done at my regular health care lab, not the hospital) and that there's no way it can be from the Besremi since my first dose was very low, what he calls a "homeopathic" dose and that Besremi dosen't effect blood sugar levels, but It actually appears as one of the side effects on Besremi website, and also the possibility of developing Type 1 diabetese. Something I really don't want!
Also, my Triglycerides, which have always been high, have gone up from 264 (before Besremi) to 322. I'm less concerened about this, but my gut feeling tells me something's going on and I'm worried about my blood sugar levels.
Anyone here on Besremi expreienced the same? I'm scared to take my second dose today, even though my MPN specialist is reassuring me there's no problem taking it.
Thanks!
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Panda2014
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I have not had that experience on Besremi (on it for a year), but Glucose can also be volatile. Test again the next time you go and again after that. I have had a couple of measures which spiked. But if you are something before you went, which I almost always do in base I’m getting a phlebotomy, can raise your blood sugar. Try not eating for a few hours beforehand as long as you aren’t getting a phlebotomy.
Thanks for replying. I did the test after fasting for 8 hours. I will keep monitoring my blood sugar and do another test in a couple of weeks. Be well!
You could ask your MPN specialist if you could lower your next dose of Besremi and see if a change occurs. I am on Besremi, as well, and have not experienced changes in blood sugar, etc, but in other areas. I would be more concerned about triglycerides because they contribute to plaque buildup in arteries, etc. I would work on trying to lower them . I am surprised that your MPN specialist started you on 100mcg and wants to titrate up so quickly. I started at 50mcg for few months, went to 100mcg and then had side effect and now lowered to 75mcg for several months. "Go slow" is the motto! Be proactive and ask to lower the dose and see if there is a difference.
Thank you. I know triglycerides are a problem. I have high cholesterol and cannot tolerate statins, nor the new drug, Rephata, which causes me muscle pain. I have been struggling to lower my cholesterol for years. Right now, I'm focusing on treating my PV and am well aware of the dangers of high cholesterol, but don't want to experiment with more medications right now because I just started Besremi. My MPN says 100 mcg is super-low and wants me to gradually go up to 250. Like you, I'm also in favor of the "go slow" approach and am anxious about side effects. If I start getting any, I will definitly ask to lower the dose or stop the medication. I hope you're doing well on 75 mcg and have no side effects and that the drug is working for you.
Hi, you could always purchase an inexpensive glucose monitor and test strips and test your blood sugar as often as you wish. I do not use besremi but I am a type 2 diabetic and test my blood sugar often, it is very simple. You could also have your GP check your A1C. I wish my fasting sugar level was only 121, I average around 140. Good luck and best to you.
I'm pre-diabetic (type 2) and was concerened that Besremi might cause type 1 diabetes, which is much worse. I have my A1C checked regularly. Do you take medication for your diabetes? Shouldn't that help control your fasting blood sugar levels?
Hi, yes I take Metformin for diabetes, I don't know what my fasting sugar would be without it. My last A1C was 5.8 which I am happy with. I eat whatever I want and make no effort to control that, I know that is stupid. A friend MD told me that at my age (74 almost 75) that a A1C of 7 to 7.5 is acceptable. The pathology of Type 1 and Type 2 Diabetes is different, I doubt that taking Besremi would cause Type 1 diabetes but I am not a MD. That's a question for your MPN specialist or your internal medicine doctor. What does your A1C run?? Best.
My A1C is usually around 6. Type 2 Diabetes runs in my family and though I'm not considered diabetic, but pre-diabetic, some doctors will argue there's really no such thing. Right now, I don't want to begin medication and when I'm careful with my diet, I am able to lower my A1c. I think it's fine that you're eating whatever you want. Why not enjoy yourself? It's too depressing when life becomes ALL about maintanance.
My glucose tended high on HU and in range on both Bes and Rux. I never fasted.
Regarding your Dr's comment: " there's no way it can be from the Besremi since my first dose was very low, (100) what he calls a "homeopathic" dose"
100 is not low for many pts. IFN can have various desired and undesired effects at widely different doses for different pts. I was on a steady 140 while I should be been on less than 100. Members here range from well under 100 to 500, IFN is unusual in its variability this way.
Your high Glu and Tri counts may be from IFN or something else but the dose you're getting by itself should not preclude an effect from it.
it’s literally a black box warning. I would be very careful as this particular adverse reaction to IFN/besremi is irreversible unlike many of the others. Also high cholesterol and triglycerides as that too is a known adverse reaction, though not as urgent and is reversible.
I would be questioning how much of a specialist your mpn specialist really is at this point. It’s infuriating having what they allegedly said as it is literally in the medication warnings.
With that said both can be transitory and dependent on many things. It’s possible it will only raise it for a bit as your body adjusts. I highly advise you to either get a glucose testing kit and test yourself or have your GP do a few tests a few weeks apart.
I would do at least 12 hour fasts to get a true idea. If you continue to see fasting glucose that high, if it were me I would stop IFN. Unless you’re risks and symptoms outweigh getting type 1 diabetes. But as always under Dr direction and supervision, even if that’s means finding a new one.
Also high triglycerides and cholesterol are important risk factors for PV as they can contribute to clots forming. You need to get that under control as soon as possible.
IFN medicine is well known to add autoimmune (A-I) risk. But I've not seen type 1 diabetes listed as a known irreversible IFN medicine adverse reaction? I see articles like this one:
"INTERFERON ALPHA: THE KEY TRIGGER OF TYPE 1 DIABETES"
But these reports I believe refer to innate pathological IFN-1. There are trials for Sjogrens A-I that are directed to reducing innate IFN-1 levels as I've posted on.
It is logical that adding more IFN to these inflamed conditions could make trouble, that happened to me to the extreme. But the known irreversible effects of top concern have been (autoimmune with a bias to Sjogrens).
Beyond A-I one member suffered severe kidney damage on Bes but I'm not aware of any suffering diabetes -1. Have you found reports of IFN medicine leading to permanent type 1 diabetes?
I have not found reports about IFN leading to permanent type 1 diabetes but other than googling it, wouldn't know where to look. The article you refered me to does not discuss whether the type 1 diabetes triggered by IFN was reversable, or did I miss something?
As far as I know, Besremi is IF alpha 2b, while the IFN discussed in the study is IFNa
I'm assuming they work differently? If so, do you think one can assume that Besremi might not cause all or some of the autoimune responses (among them diabetes type1) that the IFN in the study you sent me caused? Or is this just wishful thinking?
When I discussed my concern about my sugar levels with my MPN, he checked with the representative of the drug company, here in Israel, where I live, and she told him that in trials done with about 300 people taking Besremi, diabetes type 1 has never been reported, nor has it been reported in hundreds of other patients on the medication. (in my opinion, a few hundred people are not enough...) She said it is listed as one of the warnings on Besremi, because it was described as a RARE reaction to the older IFN's and that regulation forces Bes to include the warning because it's the same family of medications.
Does this put me at ease? No. I'm always bit suspicious, if not paranoid, about drug companies.
It identified the actual difference, but I was not able to find any implications. The pegylation details seem more significant. One older formulation, Intron, used 2b as does Bes.
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I admit to just sampling the long report. It suggests some equivalence to the A-I angle and implicitly type 1 diab is not normally reversible.
Some items of interest on A-I:
"A frequently reported rheumatologic complication of IFNα therapy is SLE.....most of these cases resolve or improve after discontinuation of IFNα therapy" It's the other side of "most" that is our concern. Notably these are likely from the pre-PEG era. In this case non-pegged IFN has an advantage; upon discontinuing it the IFN is quickly cleared. With PEG types it will linger for weeks or months, this was my fate. But lower peak doses with pegged is a good thing.
In reality Sjogrens is the evil A-I of most interest based on the PEG label (I've posted on) and reports here. But Sjo esp c 2005 was invisible.
I agree with you 300pts is not enough to catch various rare awful events, we're doing the "phase 4" study here and finding they do happen.
I would agree these worst cases are RARE as your Dr says, but the new formulations have in some ways increased the risk when they do happen as noted above. So your caution is rational, while IFN does have its very beneficial side.
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In sum your observation and caution on diabetes is an angle that IFN pts should be watching carefully for.
Thank you for all this information! Do you know for a fact that there have been severe or rare adverse reactions in the phase 4 trial? Where can I find information about this? Also, why do the new formulations increase the risk of rare reactions? Or did I not Understand what you wrote.
"Phase IV generally refers to post-market studies, which companies undertake after a drug is approved and at the pharmacy. ... Phase IV includes informal doctor and patient reports studies, which sometimes reveal unanticipated side effects. Such “surprises” aren’t uncommon in brand-new drugs because so many more people take them once out on the market versus the small number of patients in clinical trials."
The adverse events we're discussing don't actually fit the category of "surprise" in the text above since it is on the label. If there is a surprise it's that we're really seeing these happen. We are doing the informal sort of phase 4 on this forum. We can hope/assume the drug cos and others are paying attention to our experience and others they are aware of thru medical meetings etc, but there are no published formal ph 4 studies so far. I don't know if my Dr has reported my wreck.
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For your questions: We do know absolutely there have been severe adverse reactions reported in this thread and others on the forum. My experience is an authentic, clear and extreme example of this rare result. The severe kidney injury was posted on the forum. Also the warnings on the IFN labels are from rare but real incidents with IFN in some form.
The new formulations actually are safer in general and should decrease this risk. This is because the pegylation allows less frequent dosing and holds IFN levels in the body more constant. The early IFNs required daily or many per week doses so it was like a short "sugar high". These higher peak levels increased the risk of adverse reactions. There are other injected drugs that also use pegylation these days for the same reason.
The problem arises when a rare adverse reaction is clearly happening. Then the long lasting action becomes a liability, there is no way to quickly flush the IFN out. So when it is indicated to Stop the IFN, the old formulas were out of the body quickly while the peg ones persist longer. This was my experience (instant severe reaction) and might be why mine was irreversible. But there is no way to know if this was in fact the case.
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Despite these rare stories, IFN is excellent therapy for most who use it, and I did very well with it till I didn't.
I have been following your story on the forum and cannot tell you how sorry I am for what happened to you. You mention a botched vaccine, which you believe was the trigger. Do you think it was the combination of the vaccine? (I don't remember if it was the Covid vaccine or flu?) and the Besremi? Not that anybody can really know, but if you had not done the vaccine, could this have been prevented? I'm curious, because I wonder, as you probably do too, if there was one particular "villan" here, or the combination of a few?
I'm asking because I myself, and I think there were a couple of other people on the forum who also had this experience, am wondering if the Covid Vax were the trigger for my PV. Again, doctors claim there's no connection and cannot be, but since PV is an aquired mutation, it makes sense (to me) that it triggered SOMETHING. I had no immediated reaction to the Covid vax, felt ok, did the booster two or three weeks later and then the third shot (AND LAST ONE FOR ME!) a few months later, but didn't feel like myself for quite a long time, after getting the shots. Can't really explain it. Aches and pains in my bones and muscles, tingling and numbness in my feet and fingers, on and off, and just feeling down and unwell, till finally, about a year after getting the vax, was diagnosed with PV.
Since then, I have become wary of vaccinations in general, and I've never been against them in the past. In fact, I don't even get my flu shots anymore, and I will never, ever have a Covid vax again. Call me paranoid, but so many people were affected, long term, after the covid shots, and we don't really know enough about them because the world was in such a panic and Covid was deadly. Who knew?
My wreck very likely was a sequence of events. I believe had any of them been different the outcome would have been less severe.
A covid vax followed by a flu vax 1 week later, You've seen my discussions of timing. Vaxes should be at least 2 weeks apart, although the US CDC has this to say: "If you prefer to receive each vaccine at a separate visit, there is no minimum waiting period between vaccines."
Covid shot went fine, just normal downer the next day or so. The flu vax a week later went bad right away. I got a Dx of brachial neuritis directly from it. Meantime I continued the Bes. One day I felt unusually fatigued. I considered whether I should take my next dose, and fatefully did.
More broadly either of a vax or IFN can lead to Sjo, as can other things.
Your description of "tingling and numbness in my feet and fingers" indicates a neuro reaction. These are a top hazard indication, as many adverse vax reactions are neuro. Autoimmunes are known to be triggered by various traumas, and Sjo esp is tightly wound within neuro complications. MPN is less known to be so instantly affected; I don't think it's the same hair trigger that A-I's have.
Do you have blood counts from the time of or before the last covid vax and your PV Dx? Many MPN pts see a trend over years before the Dx, mine was at least 7 years.
I remain nominally a "provaxer" but I can't get them anymore. There are nasal covid vaxes underway that may be safer and more effective.
Sorry for the late reply. To answer your question about blood counts before last covid vax and my PV diagnosis: Yes, I do have the results, and YES, it seems like things started going wrong AFTER my covid vax, though I can't say if it was after the first, second, or third. I had slightly elevated WBC for years, but everything else was within normal range. I know it's easy to blame the Covid vax for my PV, but I feel there's a connection. Maybe the Covid vax triggered something that would have happened anyway - or not. Maybe it has nothing to do with it.
After all you've been through, you remain pro-vax...I understand why, but nevertheless, think you're brave.
Thank you for being so responsive.
I hope you are doing OK, and that you're somehow managing the Sjo, which sounds like such a nasty thing to live with. And again, am so sorry for what happened to you.
That is a suspicious correlation with blood counts and vaccine. But likely unknowable. Age ~60 is also a common one for MPN to become active. Covid infection is suspected to be a source for increased A-I incidence recent years, maybe some MPNs are set off by the infection. Someone may do a study. Anything where the infection can be a factor its vaccine can also rarely be one too.
While I would like to get future vaccines, some of my Drs say no.
Unfortunately I'm not ok, that's why I patrol the forum for members at possible risk on IFN. I'm looking fwd to 6 drugs in or near ph 3 that should be helpful.
Yeah it appears to be another AI related side effect. I cant remember where I read its irreversible however. I may be confusing it with something else but im almost positive that is what ive read.
Luckily kidney associated damage is usually reversible when its IFN induced and caught early from a few case studies ive read. Though I suspect there is still some loss of function.
"New or worsening autoimmune problems: BESREMi may cause autoimmune problems (a condition where the body’s immune cells attack other cells or organs in the body), including thyroid problems, increased blood sugar (hyperglycemia), and type I diabetes. In some people who already have an autoimmune problem, it may get worse during your treatment with BESREMi. Tell your healthcare provider if you have tiredness, are urinating often, or if you are very thirsty."
That last para you provide is my life post IFN, see my post "Last Dose".
The 1st report in your links c2018 has "and recently emerged as a major cytokine that triggers Type 1 Diabetes."
So this "discovery" member panda2014 has posted here is on to something.
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In the 2nd report "The onset of interferon-associated T1D (type 1 diab) required longer periods of IFN treatment than interferon-associated T2D" This is not good re MPN since IFNs historical use was temporary while it is "long term for most MPN pts.
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The 3rd report has highlights:
•Upregulation of IFNα is associated with several autoimmune disorders.
• IFNα recently emerged as a key cytokine triggering T1D both in rodents and in humans.
•...
•Targeting IFNα represents a potential therapeutic strategy in the early stages of T1D.
Once again ca 2018 IFN is newly found to trigger T1D. And the connection to A-Is is there. Targeting IFNa is one current strategy for some A-I's and maybe is going to be for T1D also. In all these cases adding more IFN to the fire seems unwise.
With a date of 2018 this report is likely based on at least some use of modern pegged IFN.
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The FDA label has "new onset type 1 diabetes," I've not noticed this before. It would seem this should be moved to the black box as you reasonably recalled it was already.
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As above this risk seems very real, and with the persistence of Pegged IFN, stopping ASAP is particularly important if T1D is presenting.
Wow! Thank you so much for all the research you've done on this. I must say, this makes me even more nervous. I didn't understand what you meant in the last sentence of your reply. If TID is presenting, of course I would stop Besremi immediately, but how does one know if T1D is presenting and wouldn't it be already too late to stop once it has presented, if indeed T1D is irreversable? I mean, if T1D has a sudden onset, the damage is done, isn't it?
Type 1 diabetes is a non functional insulin producing pancreas. So it’s likely IFN treatment has the potential to damage the pancreas through autoimmune pathways.
Again I want to stress this won’t happen for most people. It’s a very rare side effect. However if your levels continue to rise it could be a sign. It’s something to be checked but I wouldn’t immediately jump to conclusions for your case. Again speak with your Dr and bring it up again.
I will be doing another blood test to check my sugar levels in about a week, and as I said in my other reply to you, if it's high, I will stop taking Besremi! I do not want to risk getting type 1 diabetes, and am hoping that the two shots of Besremi I already had, will not cause ireversable damage. Yes, I have a lot of risk factors and symptoms, but would rather deal with them than taking the risk of getting type 1 diabetes.
As for my MPN. He's actually considered one of the best and I really like him. He's very responsive and did not dismiss my concerens alltogether. I think the problem is that Besremi is relatively new and maybe there's not enough data about it, unlike the Peg.
Yes, I know I need to get my Cholesterol+triglycerides under control, but have not been able to tolerate statins or even Raphata (the bi monthly injections) because I develop muscle pain and I already have enough of that with the PV and iron deficiancy. This is why I decided to start Besremi in the first place, because of my other risk factors, and because Besremi might help slow down or eliminate the progression of PV.
I will be doing another blood test to check my sugar levels in about a week, and as I said in my other reply to you, if it's high, I will stop taking Besremi! I do not want to risk getting type 1 diabetes, and am hoping that the two shots of Besremi I already had, will not cause ireversable damage. Yes, I have a lot of risk factors and symptoms, but would rather deal with them than taking the risk of getting type 1 diabetes.
As for my MPN. He's actually considered one of the best and I really like him. He's very responsive and did not dismiss my concerens alltogether. I think the problem is that Besremi is relatively new and maybe there's not enough data about it, unlike the Peg.
Yes, I know I need to get my Cholesterol+triglycerides under control, but have not been able to tolerate statins or even Raphata (the bi monthly injections) because I develop muscle pain and I already have enough of that with the PV and iron deficiancy. This is why I decided to start Besremi in the first place, because of my other risk factors, and because Besremi might help slow down or eliminate the progression of PV.
"New or worsening autoimmune problems: BESREMi may cause autoimmune problems (a condition where the body’s immune cells attack other cells or organs in the body), including thyroid problems, increased blood sugar (hyperglycemia), and type I diabetes. In some people who already have an autoimmune problem, it may get worse during your treatment with BESREMi. Tell your healthcare provider if you have tiredness, are urinating often, or if you are very thirsty."
I wouldn't just stop with one more high number. Like I said its important to talk to your Dr about this but I would be on alert. I am very side effect adverse myself, but the risks can still be outweighed by the benefit of besremi. And this can very much be transitory and temporary. I just wanted to bring it up because its something to be aware of.
Also I have been given besremi but am waiting to see my specialist soon before I start dosing because of all the listed side effects I want to consult and start a low dose of 50mcg. But will see what he says.
I will be doing another blood test to check my sugar levels in about a week, and as I said in my other reply to you, if it's high, I will stop taking Besremi! I do not want to risk getting type 1 diabetes, and am hoping that the two shots of Besremi I already had, will not cause ireversable damage. Yes, I have a lot of risk factors and symptoms, but would rather deal with them than taking the risk of getting type 1 diabetes.
As for my MPN. He's actually considered one of the best and I really like him. He's very responsive and did not dismiss my concerens alltogether. I think the problem is that Besremi is relatively new and maybe there's not enough data about it, unlike the Peg.
Yes, I know I need to get my Cholesterol+triglycerides under control, but have not been able to tolerate statins or even Raphata (the bi monthly injections) because I develop muscle pain and I already have enough of that with the PV and iron deficiancy. This is why I decided to start Besremi in the first place, because of my other risk factors, and because Besremi might help slow down or eliminate the progression of PV.
I know that I have many risk factors, cholesterol, triglycerides and pre-diabetes type 2. I haven't been able to tolerate ANY kind of medication for cholesterol and I've tried them all, including the expensive injections. All cause me muscle pain, which I already have plenty of with the PV and iron decifiancy.
As for my MPN: He did not dismiss my concerns. He did check with the drug company representative (see my reply to EPguy) and I don't know how reassured I am with the informaiton she gave him, since te data refers to only 300 patients who were under trial with Besremi.
Anyhow, I will have another blood test in a week and if sugar is high, will stop taking the Besremi.
Is a glu test the best way to check for T1D? Or A1c or something else? Glu is point in time, A1c is months, and there is a middle one that catches several weeks state for sugar. I know little about it. As above I agree a few hundred trial pts may not catch the events we're actually seeing here.
I don't know. I've been monitored for diabetes for many years, both with Glu tests and A1c, but this is for type 2 not type 1. I would assume onset of type 1 is more dramatic? I have a friend who was recently diagnosed with T1D. She has Fibro which is an AI condition. She had been unwell for a while, thirsty, tired, and had lost weight and other symptoms I cannot remember. Her sugar was sky rocket high but she didn't know it because she had not done any blood tests. When she did, she was rushed to the hospital. Who knows how long she actually had T1D or if anything could have been done to prevent it had she caught it early. I don't think it's possible. My concern is that once TID is detected, or even in its early stages, that would mean the body already went crazy and is unable to produce insuline, so how can this be reveresed? If it could be reversed, there would be a cure for type 1 diabetes.
Anyhow, I'm driving myself insane here with fear. Knowledge is important, and I'm glad I'm being extra careful, but I guess I'll just have to do another blood test next week (I took my second shot of Bes on Thursday) and if my glucose is still high, I will stop Besremi immediately, in hope that if something was going on, I caught it early enough to reverse it.
That aspect should be reassuring and a good reason to remain sane with minimal fear.
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But the separate unrelated T1D risk with IFN is worth attention.
Type 1 is heavily affected by genetics so family history matters. There is also an environmental element, and this is where IFN comes in.
It's clear we don't want to "catch" it. It's a lifetime autoimmune disease wherein the active pancreas parts get destroyed by the immune system:
"Type 1 diabetes is a chronic (life-long) autoimmune (A-I) ...Pancreatic islets are clusters of cells in the pancreas that make insulin. Your immune system attacks these cells in Type 1 diabetes"
This reference describes a clear set of symptoms to look for and there is a specific antibody test. A good GP Dr should have precise advice on what to look for.
So T1D fits right in the black box for IFN, being an A-I disease, and being irreversible.
From all this, for anyone with a family history of T1D, monitoring symptoms and getting certain tests as advised by Dr seems wise while taking IFN.
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Your friend with Fibro, has she been evaluated for Sjogrens? Fibro is often a default Dx that gets applied to Sjo pts.
Thanks again, for your informative reply. i don't know if my friend who has Fibro was ever evaluated for Sjo. I don't think so but I'll mention it to her.
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