I had my 5th shot last week. It was at 100mcg, next will be at 150. I had a very bad day yesterday. It felt like an Omicron infection (runny nose, headache, slight sore throat, misc discomforts) along with a big dose of the usual malaise. But I wear a good fitting N95 always on my rare outings and INF has a common side effect of flu-like and it may well be the INF effect. On Bes seems a pattern of my largest effects are exactly a week later. If days like yesterday get common I'm not sure about 150 mcg, or INF in general.
My Dr very much suggests I try Rux to get symptom relief. His patients very often get great relief quickly on it. I've seen similar from members here. Very tempting since nothing I take or do so far seems to matter. But I want to find out first whether I'm a candidate for the best INF benefits, as we know INF gives the deepest potential marrow fixes. I've always tended to suffer now for better future later, maybe INF is to be more of that for me.
I started today Acetyl L-Carnitine upon hearing good results from some members. It is added to Curcumin. I'll keep on trying safe supps till I find one that makes a misery difference.
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CBC:
Bes is working very well on bloods, hence my desire to tough it out. I've been off HU for some time now.
Image here shows some items. Individual white bloods are low but in range, while WBC is slightly low at 3.7. My Dr is not concerned.
Baso is at the bottom of the scale. I think low is ok, any others seeing low values here on INF?
HCT is 44.1, getting near 45, one reason we agreed to try 150 Bes next.
The blood numbers with "Volume" ie MCV etc are often out of range high, Dr is not concerned. He said at least for MCV INF keeps it high, if less so than HU.
PLT and GLU:See Reply below for next image
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EPguy
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Here are my PLT and glucose. The recent low point in PLT was with 50 Bes and 500 HU combo. PLT is working well on Bes only.
I include glucose here bec it's been strange, it in a good way, but I don't know why.
I'm seeking anyone else who has seen changes in Glu on INF. I also was on NAC for some but not the last one.
I have no recent history of blood sugar troubles, (since I quit junk food snacking 25 years ago) but also never saw normal Glu without fasting. It's supposed to be high if you eat a hi carb breakfast and get the test shortly after. I did fast for the 1st one in range but none after. (all after the fasting test are on Bes) Anyone else see change in Glu on INF?
EPGuy have you ever had the opportunity to try Pegasys? I've tried both and Pegasys was a breeze to tolerate as compared to Besremi. Pegasys is still available, through this company: pharmaand.com/
I've only been on HU prior. In general Bes is supposed to be easier than PEG, and some members here do tolerate it better. But your experience is definitely relevant. I recall your post on this too.
No idea if it matters, but do you know your main and any non-driver mutations?
If I have just one bad day per 2 weeks I'm maybe ok with that. And the flu like is supposed to improve with time. I'm better today. And it goes to monthly dosing after the 1st year. But if it does not improve, I agree it could be worth considering.
I'm having way less problems with Besremi than I did with Pegasys. I stuck with Peg for 2.5 years hoping for less side effects, but it never happened. So far on Besremi I'm doing well. The only "flu-like" symptoms I've had was covid for the last two weeks. Almost completely better now. Of course, we're all different, so anything is worth a try.
Yeah we had that conversation about Bes vs Peg side effects the other day. I'm contemplating following the same route as Monarch myself, but am holding out in hopes that things turn around. I have terrible throat pain, dehydration, and my glucose levels are concerning me as well. I read in the Besremi papers to speak to your doc if you have extreme thirst or high glucose. I'm not sure what is considered "too high" though. I have no idea how it's affecting your glucose the opposite way, but more power to you brother. Looks like Bes is definitely working out in your favor. Attaching my counts.
There is actually edit option, but it's hidden in the "More" option menu. I use it generously. You can also delete and replace images.
Is your CMPs for Glucose with fasting? It's normal to have high Glu if not fasting. That's what is strange on mine, it used to be high as expected but no longer. Agree it's a good thing, but medical stuff anything that changes suddenly is interesting bad or not. I was not aware that Bes (INF in general?) can add Glu.
Your liver #'s are high. but the worst was before Bes should have started working. Was that on PEG? Was it that way long before also? If so it suggests a fast but limited benefit to Bes in your liver values. I'm low-med in these so far.
I'm not getting any of the other bad effects you note on Bes. Yesterday was good, today it's just the usual malaise, set to "medium". We're doing a very rare social outing today, I always hope to feel decent if we go out.
Is your Bes dose being decided by the HCT? As expected your WBCs are low. Maybe you're best on a lower Bes dose? (if you will need phlbs anyway and HCT no different than PEG was) Could be worth discussing with Dr.
Your HCT was high at the start also, I assume on PEG. Hunter and I discussed balancing INF with other treatments when they get approved. In particular I plan to ask my Dr about a low dose of Rusfertide if/when it's available. This should fix the weak spot we see in INF on HCT without use of phleb. Maybe lower HCT will help malaise too.
It took years to figure it out, but my HCT WAS finally controlled with Peg. It is not anymore with Bes. Shortly before I switched between the 2 I had missed a dose of Peg and that threw things off, but I'm attaching a snapshot in time from when Peg was working. I guess I do see some high glucose during this time frame as well. And yes, Peg was a bit harder on my liver for some reason. I was not aware of the fasting thing for glucose and I'll try and be mindful of that on future tests. I had not seen a warning about glucose with Peg, but if you search you can find some hits on that. I think it's more clearly stated with Bes, you can see it on the main page of besremi.com/.
Oh malaise, yes I've had that too. It hits me early afternoon where I feel like I've been drugged. I take a 20 min nap and it goes away, but still quite annoying. That has started since Bes as well. Hopefully Rusfertide gets approved. I'm interested in that too.
Your numbers were clearly better on PEG. In a plot it would likely look quite compelling.
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You can see in searches that fasting is standard for glucose test. Likely your Dr did not request since your are not looking for diabetes. Your numbers are not surprising for no-fast, and it depends on what/when you ate before the test.
<<Fasting Blood Sugar Test
This measures your blood sugar after an overnight fast (not eating). A fasting blood sugar level of 99 mg/dL or lower is normal>>
If you want an important diabetes value, it's the A1C, which measures your blood sugar over a longer period and needs no fasting.
<<,The A1C test measures your average blood sugar level over the past 2 or 3 months>>
I expect if we check out the diabetes section of healthunlocked these numbers will be well discussed like we do for PLT etc.
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I've posted elsewhere that PEG and Bes use different INF formulas, INF alpha 2(a) vs 2(b), besides their different peg methods. The Bes peg method should be only better, but it could be some MPNs including you respond better to 2(a) INF type. I have wanted to know why PEssentia choose 2(b), which is also in PegIntron.
Interesting your malaise started with Bes. Worse bloods might have something to it.
Agree on the drugged feeling, and my whole body is lit up with what feels like inflammation (a known MPN problem) . I get it regularly no matter what I take or do, pre Dx, HU, INF. But there are good days. Naps help mostly to just check out for a while, but don't fix it. It might also be related to long covid.
As the first drug taken for my PV, I administered 5 doses of Besremi at 50mcg, 75, 100,150 and then back to 75mcg. Last dose was April 3. Blood counts improved rather quickly, most significant ones to normal ranges. Then the side effects hit. First a sever outbreak of psoriasis, which I never before experienced. It is still present by has slowly dissipated a bit since. Then the big one hit, a sever and continuing to worsen case of systemic non-pitting edema (only pitting edema is helped by diuretics, they don't touch non-pitting edema). I tried a diuretic with zero results. Everything is currently swelled to point of incapacitation (e.g., no walking or exercising), no appetite, 24/7 upset stomach and needle like sharp pain in feet due to pressure on nerves. As point of reference, my normal body weight is 123 lbs. It is now 147 lbs, which means my extra interstitial fluid is now 24 lbs...almost 20% of my body weight! Best advice I can give is to titrate Besremi very, very slowly with low dose. Ignore PharmaEssentia recommendations and don't just consider blood counts. Use very low dose and continue for at least a couple of months to see if you manifest any adverse effects. Everyone is unique, although edema is a relatively common side effect of the drug. Best of luck going forward.
Oh my, so sorry to hear that about your side effects pepper, and I thought I was having it rough. I probably would have discontinued until those serious side effects had completely subsided before trying again, but that's just my 2 cents. As you probably read above in this post, Pegasys is another Interferon option. If your insurance will pay for it, it might be worth trying if Besremi doesn't work out. Hopefully your body will tolerate one or the other.
yep. I discontinued immediately after the initial side effect of psoriasis outbreak and before the edema started. In retrospect, I should have discontinued for at least a couple of months after my first 3 doses showed a reasonable improved blood count response. So my advice is take it very slow to find the right dose for yourself. I have no intention to chance taking Besremi again until hopefully all side effects have passed. You can always take more, but cannot undo past doses.
Interesting on the psoriasis. I've had a mild occasional case that started ~4 years ago. It was not so mild at that time, but since just a bit back side of knees. I've been watching extra closely since starting Bes. So far nothing unusual and the OTC cortisone still works.
No improvement yet. It's now been 21 days since stopping Besremi and each day the edema keeps getting worse in spite of thinking there is no way it could possible get any worse. It's as if a chain reaction has been set in motion. Hopefully no permanent damage to kidney, liver, capillaries, lymphatic system, etc. Going to try to get recommendations to see appropriate specialists within my HMO that hopefully may give me some peace of mind regarding possibility of such damage. Only positive news so far is an ultra sound that confirmed no blood clots. I note that PharmaEssentia makes no attempt to disclose what the longer term outcomes were for patients that had to drop out of the trials due to negative reactions to the drug.
Getting worse seems like it could be an emergency soon enough. As Pte82 says, you should get more care ASAP.
Agree on the lack of detailed follow up. It must be somewhere in their data. There may be more info for PEG, as it's been in use longer for Hep C. I've not found it yet however.
Appreciate your concern. Now been a month since last Besremi dose and edema continues to worsen, which I didn’t think possible. Doc put me on oral steroids to try to mitigate inflammation but does not appear to be absorbed via gut. So if this continues much longer will have to spend indefinite time in hospital to receive steroids injected directly into veins. Not convinced any of this will work and hoping body will heal itself given time. In meantime living a very restricted, exhausted and miserable life. Just keeping a stiff upper lip attitude in hopes for better days.
That is a severe reaction. I checked the site below with a good clear list of reactions, and Edema was experienced by 16% (8) of 51, surprisingly common. But yours is a grade 4 (top) for sure, and I think you should report to FDA and PEssentia.
You're a bit ahead of me on the Bes duration, so I will look for any trouble soon, and maybe compromise on the titration at 125, and maybe even stay at 100.
I see PEG can associate with angioedema, which seems to be similar. But no easy read list like I see for Bes.
I suggest all of us on Bes check out this site. Here is another:
It includes asthenia, malaise, and fatigue at 47%. This is a rare inclusion of malaise in a list. But I've had that since before my Dx, so I wonder whether some of these are mixed with MPN symptoms. (clearly not yours)
Another is Pruritis, we all know about that one, and in fact I've had minor increase in mild and occasional since starting Bes.
My bloods have not improved in the absolute sense, since it was ok on HU, I don't know if that will make any diff.
I think you're right that malaise is an MPN symptom. Sometimes I forget when various symptoms started, but I'm pretty sure I had that one before Inf treatment. I had positional vertigo and wooziness as well.
Since switching from Peg to Bes I've had a resurgence of MPN symptoms including phantom smells, neuropathy, pruitis, and a few others that I definitely had before Inf. It's hard to connect the dots at times even after 4 years since dx. All I know is I haven't had MPN symptoms this severe since I was untreated. At times wonder if the drug isn't actually exacerbating the symptoms. I had a theory that the MPN symptoms are a biproduct of something involving in the immune response, so the Inf is indirectly causing those symptoms.
I'd still like to work on some sort of unofficial/official MPN symptom list based on feedback from others, but it's a tough time right now with other stuff I have going on.
I can say I'm not all fresh yet on Bes, but I wasn't on HU either.
INF is both anti and pro inflammatory. Which and when is not well understood.
I see in your prior post that your blood counts are clearly changed for worse under Bes. If so the good part of that bad thing is having a possible reference or cause of the trouble.
Making simple averages of some of your pre-post PEG/Bes values:
Pre-HCT=45.5, Post-HCT=43.3
Pre-PLT=177.4, Post-PLT= 208.7
Pre-ALT = 70.9, Post ALT =89.2
So all is worse on Bes. What was your PEG dose?
I see the Bes dose is up to 250, high by comparison to members here, and no obvious diff in your counts from increasing it.
I still wonder about that difference in INF molecule PEG vs Bes.
Is the phlb giving any relief?
I agree we need a data nerd to make spreadsheets, it would be precious. I don't even know how to use excel. But I am good at qualitative thoughts with data.
Peg effective dose was 135. I've seen a titration formula for switching from Peg to Bes, but I think it's just a rule of thumb on where to start. I have not seen a calculation like 135ug of Peg = XXXug of Bes. I'm guessing it does not exist due to the way these drugs seem to affect everyone differently. As for relief from phlebs, it does not really help with the neuropathy. I'm pretty sure that's a different mechanism like the inflammation I mentioned. I think it does help with blood pressure to a degree and with the wooziness, which I've had a lot of today. I can't wait for my next phleb tomorrow. I'm homozygous JAK2, which my understanding is the more persistent JAK2 variation (harder to control counts).
The conversion from HU to ROPEG is what was well researched. The conversion from PEG to ROPEG was not as well researched.
Dr. Mesa has provided a conversion formula for PEG to ROPEG.
Formula
(Monthly dose Pegasys) x .7 ÷ 2 = starting dose of Besremi
135mcg X 4 = 540. 540 x .7 = 378. 378 ÷ 2 = 189mcg Besremi every 2 weeks.
The bottom line is that with dosing intervals between the 50mcg marks, we are just estimating the dose. At lower doses, even the 50mcg intervals are not all that precise. Hopefully future devices provided by Pharma Essentia will be more precise at lower doing levels. Hopefully this will be sooner rather than later as many of us will apparently never be using the higher doses.
Hunter has posted well on the PEG to Bes switch. But we're all in a real time clinical experiment right here on the Voice.
135 PEG is reasonably high, so it does suggest you were tolerating it well. I can relate to wooziness, it's part of the malaise package.
I think Bes has helped reduce my BP on average.
Interesting that you have info on Homozy status. Was result this specifically ordered by your Dr? Or is it buried in the normal BMB or blood allele results? I have looked on mine.
I recently posted on this subject, see below. I believe UPD and Homozy are equivalent, but it is confusing. As I've seen elsewhere, Homozy associates with higher alleles but also better INF allele response. I think the really steep drops we see are many homozy. Higher alleles are I think bec each mutation is X 2, both of the pair are mutated vs hetrozygous that has only one of the pair mutated. ET does not get Homozy status, consistent with the usually lower alleles.
"UPD relates to higher AB baseline and better INF AB response. UPD is not found in ET. If your AB is very high, UPD is more likely and we do see members with great AB reductions for example from 80% baselines."
I discussed this report with my Dr and he said it's not possible to have a germline (from parents) mutation that shows up later. Homozy and heterozy are supposed to be germline. It seems there is exactly that, called acquired UPD. All very strange.
pepper, my wife had your level of fluid retention and had a paracentesis to remove 8.4 liters of fluid. Your level of fluid retention prevents the intestines from absorbing diuretics. You risk fluid buildup around your heart. In my opinion, you have a serious medical condition needing your Doctor's attention .
Hi EPguy,I am sorry about the side effects of Besremi. Have you considered a low volume phlebotomy (200-300mL?) to keep the HCT in check, while still taking Besremi at the lowest possible dose?
I had been on 100ug Besremi for 2 months until my WBC, and neutrophils decreased below normal. Side effects had increased significantly (weakness, headaches, and borderline depression). I took a short break and then started injecting 60ug every 2 weeks. I tolerate this dose much better. About 3 months ago my HCT had reached 45 and we decided to go for a phlebotomy. I asked for 300mL only (to avoid severe iron deficiency) and my HCT has been stable and around 42. I am feeling quite good on the low dose of Besremi and don't feel the brain fog that I had when getting regular phlebotomies with larger volume blood draws (500mL). There is a publication in PubMed that evaluates phlebotomy in combination with Besremi. pubmed.ncbi.nlm.nih.gov/334...
To my body Besremi is a very effective drug. Side effects are an issue, and I hope to rather dose down than up. Time will tell. My goal is to stay on Besremi longer term and this means injecting a low dose. I would not be surprised if over time no phlebotomies will be required even on a low dose.
Note, I am still taking a high daily dose of NAC+Glycine, 2 times 3.5grams each, dissolved in water (first thing in the morning and before bedtime). Also I am taking NMN lozengers 1-2grams per day. FInally, the single factor that helps most with managing the drug side effects and disease symptoms is working out vigorously every day. Swimming and tennis.
Please note, this is my personal journey, and my experience may not be transferrable to other patients. Wishing you all well on your journey.
I have actually had that exact thought on the phlb. I've seen that report but never paid it mind till it's now clearly relevant. I can discuss with my Dr. Thanks for the link.
The depression is a real issue for INF, so good your dose adjusting took care of that.
I never had nor needed plb before as HU worked well. My HCT is still below 45, but not by much (44.1) I think long term Rusfertide will be a good combo for HCT balance on Bes. as Hunter and I discussed.
I am having serious doubts about the increase to 150mcg. Some members' experience on Bes vs PEG are further info for the maelstrom.
How much NAC is in each pill? I am no longer taking it, I'm testing Curcumin + AL Carnitine with Dr approval based on members' reports.
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