Just an update on current numbers as Bes continues. I wrote about eye concerns recently, and we shared many ideas there.
Here is HCT. It's going the right way after some increase since the switch from HU. The larger dose I took last time (~110mcg) may have helped, but it was a wallop.
I've had misc flu like etc on Bes, and it even put me in bed one day for a rare daytime outage after that 110. But I still prefer that vs the regular malaise since it does get better. Some malaise is back today, I've had some stress from business that I think has triggered it. Stress is bad we all know, and removing its source is the best fix but we also know that's easy said not always easy do.
I think the curcumin and ALCAR supps are still helping.
At the Dr's office yesterday a guy was checking out and receptionist said "you don't need to come back" The patient said "I thought I had PV". It would be nice to walk out of there not broken like that, but it's not to be.
See next replies for some more plots.
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EPguy
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These blood numbers have come up in posts. My Dr says they don't matter. But trends are good, HU takes them out of range and I quit that 3 months ago. My Dr says INF can also bring these out of range to a less extent. It's possible these could get normalized on this trend.
My creatinine went up, still in range and within my historical range. But it did make GFR look bad, see here. GFR seems to jump a lot. All CMPs are in range for the 1st time, liver numbers are in the center ranges and no obvious new liver trends from INF.
Still having a strange result in glucose. I know it is a good problem but I would like to understand it. Dr does not like discussing things that aren't broken. I have never in the past been in range without fasting (standard for glu test is not eating for 8 hours before, that's why some lab offices are crowded in mornings) These unusual results started with my Bes therapy. I used to take cinnamon supp that is supposed to help these numbers, but I quit a while ago to make room for the Curc NAC, and/or ALCAR.
I'm sure glad to see Bes is working well for someone. I up to 300mcg now and my MPN symptoms are still the worst I've had in years. Peg theraputic dose was 135, 2/3 of a full dose. I'd like to think I wouldn't need more than 350 (roughly 2/3) of the Bes full dose to be controlled, but I'm not very optimistic of this. Not like Peg was even formulated for PV to begin with. It wouldn't be so bad if it was just needing phlebotomies again, but I forgot how bad the symptoms can actually be. It's amazing such a small dose can be effective for someone with PV. I wonder how long HU stays in your system though. Any chance of a synergy going on there?
300 is a lot of Bes. It does match closer to the trials but I think is higher than most here. We've seen other members doing ok on less than 100. It is frustrating there is no way to just select the drug and dose and be done.
I can't say I feel all that well, but blood counts at least are cooperating. Are your latest counts ok?
135 is also a good sized dose for PEG based on members' posts. But if it worked for you before it seems worth considering asking Dr about reverting to PEG. We've seen other members who found the switch to Bes was a negative.
I recall reading that HU is mostly washed out by two weeks, but its effects may last much longer. No question there was synergy at least for some part of my transition, see PLT plot here. Lymph also went down, below range. The low point in March 22 is on 50mcg during the HU wash out. The year ago low point was on higher dose HU. (My provider has PLT upper limit at 369, that is way under the usual 450.)
Here is a label for the transition, I think Hunter has posted also. It goes as long as 13 weeks on HU. I quit after week 2. I'm not sure how to interpret all that:
<<When transitioning to BESREMI® from hydroxyurea, start BESREMI® at 50 mcg by subcutaneous injection every two weeks in combination with hydroxyurea.
Gradually taper off the hydroxyurea by reducing the total biweekly dose by 20-40% every two weeks during weeks 3-12.
Increase the dose of BESREMI® by 50 mcg every two weeks (up to a maximum of 500 mcg), until the hematological parameters are stabilized (hematocrit less than 45%, platelets less than 400 x 109/L, and leukocytes less than 10 x 109/L).
You said " All CMPs are in range for the 1st time." Have you had other issues with Besremi impacting your CMP?
My husband who doesn't have an MPN, but does have Afib, has had a high creatinine 1.50 or higher for almost two years. PCP didn't seem to be over concerned but when he was hospitalized for afib, the cardio team was concerned and had two other tests run:
1: Immunofixation, Serum (came back abnormal)
2: Protein (came back low)
I mention this because after doing research and speaking to his doctors abnormal creatinine levels are directly related to how kidneys are functioning. Yours is most likely related to Besremi?
He was referred to a hematologist. What? Okay, now we both have a HEM.
My CMPs were out of range on Chloride and glucose before I started Bes. Glu is supposed to be out of range since I wasn't fasting, but it's now in range since Bes. I am curious if any others have seen changes to Glu.
My albumin in center range, total protein bottomed at 6.3 when I was on Bes+ HU, now at 6.5, still in range but lower part. What was your husband's protein?
Are you and he seeing the same Hem?
Chloride plot is here. It's was about the same in 2016 before my MPN, so I guess for me that is normal. My Dr is not concerned on this one.
My husband's protein was 5.9. No, they referred him to a HEM we don't know. If he does have a blood issue, I'll ask if he can be transferred to my HEM.
I'm actually pretty concerned. I'm reading all the tests he had done while in the hospital to piece together why one result lead to another test. In addition to his high creatinine.:
SPEP TOTAL PROTEIN (abnormal)
IMMUNOFIXATION SERUM (abnormal)
PROTEIN ELECTROPHORESIS,SERUM
A faint possible abnormal monoclonal protein is present in the gamma region, quantified at 0.1 g/dl. A reflex IFE will be ordered for determination of clonal status and should be correlated.
IgG lambda.
An abnormal monoclonal protein is identified and characterized as IgG lambda.
The cardiologist said the HEM referral was to rule out multiple myeloma or monoclonal gammopathy of undetermined significance (MGUS).
I guess his heart tissue is thick which is unrelated to his AFIB.
Here is my creatinine. It was 1.11-0.97 in 2013-2016, before this plot started, so seems no large change so far. But if the current up trend continues it will get my attention. It did quite affect the visual on the GFR but still in range for now.
There is also a BUN/Creatinie ratio in one of my early CMPs. (BUN = Urea nitrogen I believe) It's been same ~12 since 2013, in range. I think they check this when kidney is suspected. It's easy to calculate if they didn't show it. How is your husband's ratio?
I did one of the home strip urine tests yesterday, all normal. I think this at least shows any obvious problems. I bought the test when I had Covid.
I think liver issues are more common with INF based on how often it comes up, but kidney is a factor too.
I've also doubled my BP meds to match the Rx, 25 of losartan. My avg has been ok but I think keeping it below 120/80 more of the time is best for all these issues.
I feel like 300 is a lot of Bes too and it looks like I'm going to need even more. I don't get my counts again till next week, but I'd say based on my symptoms they are still elevated. The main reason I switched to Bes was I heard it's supposed to be less harsh than Peg, but I don't know if that will be the case if I'm having to take a full syringe to get results. Hopefully it doesn't come to that though.
If it turns out you have better counts and symptoms on PEG using a similar relative dose for each, it does seem worth discussing whether to return to PEG. We are learning here that each is different and Bes may not be best for all of us.
I am carefully watching for any sign Bes is not working for me. So far it is, but I think we need a year to really know. I would consider PEG if Bes proves troublesome even as it is "supposed" to be milder.
Interesting that you've had an apparent correlation of counts/symptoms. Other than at my Dx, I've not had that, malaise much the time any way I cut it. So you have extra incentive to get the counts right.
I just did my Bes dose yesterday, I reduced it some to help me enjoy my vacation next week. I had an almost instant reduction of malaise after the dose, like a drug addict. But later it's a mix. The light sensitivity from last time has not recurred so far.
I have often wondered if the HCT/RBC count directly causes pain and other symptoms, but I speculate it's a coincidence. I think the counts do tell me whether my MPN active, but I think there's more going on under the hood of the disease resulting in the actual symptoms (i.e. inflammation, etc.)
As Hunter has posted often, inflammation is our top enemy. I don't feel different vs blood count variations, except at Dx when it was way off. But I also have not been out of range so far since the HU started working, so my experience may not apply for all of us.
But I do feel on fire when things are bad, the inflammation is clear and I think the "more going on" you note is a top issue. I will get a good test of Bes + supplements next week when I go away on vacation and I hope can relax and enjoy my "cures."
I did 125 mcg on April 7 hoping that it would knock down my HCT as it did with the first doses of Besremi. A week later, I had a 4 day streak of migraines which I've written about so I took my latest dose to 110. But my HCT has continued to climb. It is at 43.5. My HEM left a nice note in my chart last night upon seeing the CBC:
You are above your goal of Hct 42%, so I recommend phelbotomy. Please call in next week to arrange. I will also let (his nurse) know. Also, we have a visit next week so we can discuss the Ropeg dosing too.
I was really hoping to skip ever getting another phlebotomy. It is still low, but I feel so much better having some iron in my body. Of course, my PLT will jump up with a phlebotomy.
I see your early good HCTs with Bes. Is it possible you were seeing some late effects of the prior phlb? As Jon1972 asked above, my HCT might still be reacting to the HU from a while ago. I hope we see your trend resume its down progress.
I've got my malaise back today, so the supps are not a 100% fix so far. Some anticipation for our driving trip next week. Last year, on HU, I had one really bad evening during our trip but otherwise it was ok.
Hi EPguy. Good observation! I started Besremi on January 28th, but had a PB on January 21. On March 4th I was thrilled when my HCT was 38, and chalked that up to Besremi. When in all actuality, it was probably the PB. It has continued to climb. Thanks for the genius thought. I'll bring that up with my HEM on Wed.
The Malaise....are you working out? I feel so much better when I workout in the morning. I do notice a big change in my energy level all day.
1st nite of trip was ok just a bit of dizzy spinning at bed time. We,ll be hi altitude next days, I think all will be ok
I've done a moderate to intense exercise,strength and stairs etc for 20 years. So far still at it. But nothing I take or do has any short term effect on it. .I think the supps have helped and Bes will eventually.
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It's amazing such a small dose can be effective for someone with PV. I wonder how long HU stays in your system though. Any chance of a synergy going on there?
Switch from Besremi to Ruxolitinib
