I have been having phlebotomies every few weeks. It varies depending on my HCT level. I am taking a very low dose of HU; 500mg 4 time a week. I had been up to 1500 mg daily and I just could not tolerate it. HU alone was not getting my HCT below 45 and seems to have very little influence on my WBC’s which continue to run high. My platelets are leveling off in the 600’s. On the 1500 mg of HU they did get down to the 500’s, but I was much more concerned with my HCT, particularly after having a cardiac blockage of 2 arteries.
I am hoping to switch to Besremi, soon. My Dr. is working on the non-formulary paperwork, now. The company I work for was just sold to Baker Tilly and my insurance is changing, so I guess that may delay starting the Besremi for a bit.
One thing I am finding is that I am having fatigue. It’s like someone flips a switch by about 7 pm and I HAVE to go to bed immediately. I am sluggish during the day and am yawning and sighing often. I figure this may be due to an iron deficiency due to the phlebotomies. Is it indicated to take an iron supplement? If so, will that adversely affect my HCT?
Thank you all so much for being here!!!
All My Best,
Kim
Written by
Wewo01
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It sounds like you have a good plan in place to switch to Besremi when/if you can. I have found the IFNs tobe far easier to tolerate that HU or phlebotomies. If you do run into too big a problem with Besremi, then Pegasys is another option. Hopefully you will get the FDA approved IFN approved by your insurance. You may find, as I did, that it will take more than your doc writing an appeal.
Regarding the iron deficiency and fatigue - that would be a big yes to it being an issue. It is one of the main adverse effects that caused me to go on Pegasys whilst waiting for Besremi to get approved. There is no questions that my energy levels improved as my iron levels improved. Do also be aware that fatigue is a common HU adverse effect.
Besremi has a monopegyltated formulation that is thought to be superior to Pegasys in a couple of ways. It is thought to be easier to tolerate. It remains to be seen if it is more effective. Part of the reason for the switch is that I may at some point need a higher dose and would prefer the more tolerable IFN. Besremi is also FDA approved, where Pegasys has to be used off-label. The most up-to-date research on the use of pegylated interferon to treat PV has been done with Besremi. I expect Pegasys will remain in use and be effective for many people with ET/PV, but i prefer to make the switch.
this has been a topic of conversation on the forum before. here is one of those threads.
I took iron suppliments due to low ferratin - disaster - HCT shot up. took some time to return to 'normal' levels.I always prefer venisections to HU - there are no side effects.
re your question: Is it indicated to take an iron supplement?: my understanding is that is a no-no as the increased iron will generate more red cells and your Hct will go up. Best wishes and hope the fatigue lessens soon.
Iron supplements are usually contraindicated for people with PV. Unless you overshoot the mark on phlebotomies and end up anemic. Then you might temporarily go on iron supplements. That I'd what happened to me. The iron supplements were so unpleasant that I discontinued after 2 weeks. Decided to just let my body recover fthrough diet.
The goal of therapeutic phlebotomy is to induce iron deficieny without anemia. For many this is preferable to cytoreductive meds and the potential side effects. Unfortunately, chronic iron deficiency also has side effects. The iron deficiency adverse effects got bad enough that I decided to try Pegasys. Recently switched to Besremi. The IFNs have been way better than phlebotomies. More effective and I feel better. Not everyone is as fortunate.
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