My HCT had been creeping up over time as my iron levels improved. 12/19 HCT=47.9% and HGB=15.5. Since it was now consistently above target for PV, time to do something. Unfortunately, the liver enzymes were close to 3x/upper limit of normal ALT=157, AST=94.0, ALP=211. We were all in agreement that raising the Besremi dose was not the best choice at that point in time. Concurred that it was time for a venesection - the first in several years.
I had hoped to try a mini-phlebotomy, which the care team supported. Unfortunately, none of the local phlebotomy providers would do it. I opted for a full 500ml venesection. It was fine and not a problem. As usual, no short term reaction to it at all.
Just got my results back from the CBC and CMP (see below). After 3 more doses of 150mcg Besremi and the venesection. I am back to target. 01/20/23 HCT = 43.7% HGB=14.2.
In more good news, the liver enzymes are back where they belong. ALT=49, AST=39.0, ALP=108. I have been being kind to my liver (AKA less ETOH) and on advice of my Integrative Medicine doc, I started on a supplement of Milk Thistle to supplement liver function.
I have been having a occasional mild dyspnea/tachypnea. The MPN Specialist does not think it is PV related. Wrong pattern of breathlessness. More likely to be arrhythmia related if it is anything at all. In follow-up with cardiology, I am now on a two-week heart monitor. Will also be doing a Stress test, Echocardiogram, and CT Calcium Cardiology scan. Interesting to have a new symptom when the tachycardia incidents have really slowed down. We will doubtless get it all sorted. I am actually more curious than worried about it.
I go in next week for MRI of brain, follow up on the tumor that was resected. I am 2.5 years out from the surgery and still no sign of recurrence. Hoping for more good news next week.
On the whole I am feeling great. WIth iron levels higher, my energy is better and no more issues with concentration. Using the interferons to treat the PV was definitely the right choice for me. Much better than relying on venesections alone. I count my blessings to have a great care team to help manage the various medical issues and to have good insurance so that I can afford to pay for my care. It is also a huge blessing to have found this forum where we can all feel supported and understood.
Wishing all of you all success on your MPN journey.
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hunter5582
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So complicated, hunter! Meanwhile, the last time I had a blood test my platelets were back well within range. My next test is on 14 February, so I'll wait until then but I think I only have MDS, and not ET. Hope you continue to keep improving.
Hunter, I'm very interested in your details on Besremi and blood counts. Thanks for the update! I had my first phlebotomy last week, and have the second, and the first Besremi injection, tomorrow. Can you share the form of milk thistle you use, mg, etc? I have been giving ground milk thistle to my big dog, always prone to itching and food sensitivities, and prone to cancer now that he's reached old age, for many a year . The little dog gets a tiny bit too. Now it is my turn. I've tasted it and it is bitter. Perhaps I'd prefer it brewed as tea? I'm guessing you take capsules?
My Integrative Medicine doc prescribed 2 caps Silymarin 250mg qd. (Milk Thistle extract made by Pure Encapsulations). While waiting for it to come I bought a similar formulation locally at the same dose. This specific supplement is available from an online pharmacy. It does require a doctor's order. Note you can get something similar at local supplement provider. us.fullscript.com/catalog?_...
We will see if it make a long term difference. I do encourage anyone considering complementary health intervention to consult with a medical professional like an Integrative of Functional Medicine doctor.
Wishing you success as you enter into the journey with Besremi.
this all sounds like a really good news. Regarding the heart irregularities have you had a thorough check of your thyroid. I am also on Besremi, and it can affect the thyroid (for those with thyroid problems). Put a thyroid problem could also develop. I’m pretty sure that a thyroid problem can also develop.
I like the fact that you wrote that you are not worried, but very interested. This is also my train of thought. The more I know the more I am empowered and more interested than worried there seems to always be some solution as long as we know how to research and exchange ideas.
I am curious to know how your heart check ups will go. 😁
Thanks for the input. Yes to having my thyroid checked. Due to a history of intermittent hypercalcemia and a family history of hypothyroid I do an endocrinology consult annually. Fortunately, the thyroid is fine.
The mild occasional dyspnea/tachypnea is an oddity. I can push the exercise hard and be fine. Just occasionally get the odd episode after mild exertion. They have always stopped after about 5 minutes. The pattern is like the tachycardia incidents. Maybe just a variation on them. We will sort it out.
when my heart was acting up, I felt out of breath too. This may also be related to the kidney being overburdened at that particular time. Kidney-Heart-Lung is a health triangle and they depend on each other.
Checking thyroid for a true diagnosis must be done twice in the space of 5-6 weeks in order to catch the Hashimoto , for example. With this hypothyroid form, the situation swings between hypo and hyperthyroid. My hypothyroid was first diagnosed at age 24 in Montreal. Then I got checked annually wherever I lived: London, Cologne, Vienna (several doctors). It was at 36 that I got diagnosed while having dinner. I happened to be sitting next to a thyroid specialist. A week later I was in her office, blood test and the diagnosis was right! TSH is not enough. One must also do T3 T4 and TPO and the other two antibody tests. Only then there is certainty.
I cleaned my kidneys from august to November 2022. I drank 3 ounces of direct gepresstes cranberry juice every morning, with 1 tsp Apple cider Vinegar, 2tbsp fresh squeezed lemon juice, 1/2 tbsp honey and Sencha tea poured over those, before breakfast. That got my organs cleans and running! 😄
so pleased for you , I admire your positive attitude and it helps me try to be more positive and look for the good things rather than concentrate on the not so good
Hunter - that is great news and wishing continued good news with the brain scan! Interesting on the Milk Thistle. I too had liver enzymes that went out of whack on peg (so much so that we had to stop for a while) - they seem to be back on track after my last two readings and as we (hopefully) have finally hit on a Peg dose which controls my platelets and WBCs without damaging my liver....during this process, my MPN specialist actually encouraged me to try milk thistle - he said he had seen it help other patients (he was quick to state that he could not attribute any CMP reading improvement to the milk thistle alone (as opposed to being kind to your liver in general) but in his view it couldn't hurt. Have my first reading post starting next month so excited to see if it has helped.
Thanks for sharing and congratulations on the improvements. I am in the same road, e erything related to PV is perfect (18 months on Besremi) BUT my antibodies and TSH is getting higher and higher. Stopping the drug for a month. Scan for my liver and more to know how Besremi toxicity is working. My integrative doctor recommend me herbal tea such as green nettle, no too much a week, cat tail tras, etc and Epson bathing, sauna and more thing because I have to take actions to protect the kidneys and liver.
what an encouraging read, Hunter! Congratulations to you for working through another bump in the MPN road. Thank you for sharing and helping countless others like me understand how to handle treatment challenges. Bless you.
You have been an inspiration to so many Hunter and it’s great to hear that you have reached such a good balance with all your health difficulties. Good
It’s helpful to read of your good news on Besremi and absorb your positive attitude surrounding your upcoming tests. Best to be careful and safe on the cardiac side. Wishing you good test results!
I’m coming in late with my congrats and thanks. I echo everything said in the above comments.
You were the one who suggested strongly that I find a specialist when I was first diagnosed. That was the best suggestion and Dr Kuykendall at Moffitt is excellent.
Thanks for such a detailed response, and I'm glad to hear that things are going pretty well for you. In return, here's a bit about how things have been going for me since I started Jakafi back in August. At 20 mg/day, blood counts normalized, but I soon became anemic, with hemoglobin down to 10. The Jakafi dose was gradually reduced to 10 mg/day, which seems to have stabilized things; I'm now seeing platelets in the 300s and HCT in the 30s, with hemoglobin up to about 12. The new year started out with "minimal impact" prostate surgery, which went pretty well, though the outcome was something like "the operation was a success but the patient died". I'm still here but was in the ICU for two days earlier this week. What was most likely a reaction to the anesthetic brought me to the ER, where they found that my serum sodium was dangerously low; thus two days in intensive care while this was corrected. I'm back home and all seems to be well now. I'm hoping for a good year!
Sorry to hear about the rough go with the prostate surgery. Prostate surgery can be a rough go. Hope you achieve a full recovery soon. Unfortunately, anemia can happen with Jakafi. Glad to hear the Jakafi dose titration seems to be working. managing MPNs is always a balancing act.
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