I've posted before about the challenges associated with HU and my own efforts to keep my sensitive digestive tract happy over the last 2 plus years. Unfortunately, this past week was a bit challenging with every possible bad digestive tract issue presenting itself. I'm on the mend but have to accept that my days with this drug are coming to an end.
I have read here about interferons Pegasys and Besremi and the studies on Jakafi and Rusfertide. I have time to figure this out but would appreciate any input or links to the most current research before I see my hematologist in a month. I've printed out a lot of info that has been posted here. Anyone's input on the current state of these other drugs and their own experience would be greatly appreciated. Thanks for whatever anyone can add.
On a positive note, it is Spring, and we've been kayaking thru the saltmarsh here at the jersey shore. Life is good. Saltmarsh
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It does sound like it is time to move on the the next stage in your treatment for PV. We are fortunate to have two FDA-approved medications in the USA to treat PV. Besremi and Jakafi can both be very effective in managing PV. Rusfertide looks very promising but is still in clinical trials.
We are each different in how we respond to the treatment options. I was not able to tolerate Hu the last time I took it and it was ineffective. Phlebotomy-induced iron deficiency had worse adverse effects than the PV. Ultimately, I opted for the interferons. I started on Pegasys then switched to Besremi. The IFNs have been more effective and easier to tolerate than any other option I have used. My allele burden reduced from 38% to 9% at low doses in just 18 months. My quality of life is better now than it was before I started the IFNs. My only regret is that i waited as long as I did to start on the IFNs.
You will hear from other that they have tolerated and benefited from one option more than the others. There is no way to predict how any f us will respond. It is a matter of trial and error.
Wishing you all the best in the next stage of your journey.
I started on Pegasys before Besremi was FDA approved. I did fine on the PEG, but wanted to go with the med that is FDA-approved for PV. In addition, I went with the theory that due to the monopegylated formulation used by Besremi, it could be easier to tolerate at higher doses. In truth, I have not experienced any difference between Pegasys and Besremi at low doses.
Elevation in LFTs is not uncommon with the IFNs. It is not considered significant until LFTs = 5x/Upper Limit of Normal. For a while my LFTs were 3x/ULN. I cut back on alcohol, though I do not drink much. That made no difference. My Integrative Medicine doc suggested trying Milk Thistle extract. That seems to have brought my LFTs back to normal.
I understand the not being able to tolerate HU. I experienced toxicity even at very low doses. It took about 3 months after stopping it for the side effects to fade. It just goes to show how we re all different. Some people seem to do OK on HU for many years. Some ae not able to tolerate the IFNs. I believe it is genetically based. Perhaps we will someday reach the point where personalized care will be possible for MPNs based on the genetic profile.
I am one whose liver enzymes rose up right about the time the Besremi was getting my bad blood counts under control. The doc took me off the drug, so I'm in no man's land right now. Hunter, I have whole milk thistle seeds that I grind for one of my dogs. Do you know where I can look to find what quantity I might need? I'd love to take it right from the seed instead of taking more pills.
I do not know how to translate from the extract form to the seeds. My doctor recommended 500mg of Silymarin (Milk Thistle Extract) manufactured by Pure Encapsulations. It is not available other than through a prescription service as far as I know. I get it from FullScripts. us.fullscript.com/u/catalog...
There are other formations that are available. Quality control is always an issue when purchasing supplements since they are not well regulated. The evidence for using Milk Thistle to treat hepatotoxicity is mixed. This was one of the times where it did not appear that it was something likely to cause harm that might actually help. Fortunately, it seems to be working for me.
I would encourage anyone considering complementary health interventions to seek expert guidance from a medical professional who is knowledgeable about complementary health. Anything that is biologically active enough to help you can also hurt you, and interact with things.
If you're living on the Jersey Shore, you should see one of the MPN specialists at UPenn in Philadelphia (Penn Center for Myeloproliferative Neoplasms).
I moved from hu to Jakafi because hu cdnt control my itching. Jakafi has been great, though it did cause anemia. It was cheap w private insurance, but has been very expensive on Medicare.
When you have the chance, you might want to switch your Medicare plan. Jakafi, Pegasys, and Besremi all cost the same $100/month on my Medicare Part D plan. Coverage on Medicare Part D plans vary quite widely.
It can be very tricky reading though how the different formularies and copays work. I have a Medicare Part D plan managed by Cigna that is sponsored by my former employer, Fairfax County. The plan is structured with a max co-pay of $100/month for any one drug and a $2,000/yar annual cap for out-of-pocket. This is a much better plan than what is found in many Medicare Part D plans. medicareinteractive.org/get....
You mat want to check with Incyte Cares to see if they can be of any assistance. I am not sure of what they can offer, but it is worth checking it out incytecares.com/oncology-he...
Thanks for the links Hunter. I also am in search of a new Part D plan. The one I am on is a United Healthcare (UHC) plan through AARP. A year or two ago they moved hydroxyurea from a tier 2 to a tier 3 drug so that my portion went from $18 every 3 months to about $120. This is a Walgreens only plan. I now buy it out of pocket at Walmart for about half of the Walgreens price.
Understanding the different complex plans, negative impact of Pharmacy Benefit Managers, and the often byzantine authorization process for medications is quite difficult at times. Moving HU from Tier 2 to 3 makes no sense at all. It is an old cheap drug. You can buy 60 tabs for $25.00 total with GoodRX.
Good luck in finding a new plan. Even though I have to struggle with authorizations at times on my plan, I have ultimately prevailed in each case, including for Besremi. A lot hinges on understanding the Plan Rules and how to navigate the process.
I used GoodRX to find the Walmart price which was the cheapest at the time. They just nearly doubled the price. Thanks for reminding me about GoodRx. I'll go back there again and see if anyone else has a better price. I need 180 capsules for 90 days.
Thanks,, Hunter...as always so knowledgeable and willingness to share your experiences. I could not tolerate HU, and am reluctant to try most anything due to the awful experiences I had. In truth, it's taken almost a year for my body to recover. I will address an issue that started for me with the use of Hu even at low doses, that may be sensitive to discuss, but feel is necessary to address, especially for women; Vaginal atrophy. I haven't come across any posts regarding this problem, but I know it to be real and something that is a real issue. HU started a whole upset to my system from an extreme case of yeast overgrowth to eventually vaginal atrophy. While the other side effects subsided with time, this has remained an ongoing problem, one I didn't experience prior to HU usage. Now it could be just a coincidence given my age too, 69, this year, however,I do know that a discussion is usually addressed with oncologists and their patients about this happening when starting chemotherapy, which HU is considered. Unfortunately, many Dr's. don't address this issue, in fact, I just recently had this conversation with my oncologist and asked why?
I am pleased that HU works for so many and was disappointed it didn't work well for me, but I would agree, that some of us just can't tolerate medications well due to our genetic makeup. I also see an Integrated Health Dr. and know it's important to listen to your bodies and your health care team to have a plan.
Sorry to hear about the impact that HU had in your case. I expect that vaginal atrophy would be considered a very rare HU adverse effect. There was one other person on the forum who reported the same thing a while back. Males can experience hypogonadism as a HU adverse effect. This is usually, but not always, reversible. Sometimes it is hard to say what is the result of e medication adverse effect and what is unrelated. Timing is often the only clue.
Thank you for being willing to address a sensitive issue. These issues need to be discussed. Many may feel that they are the only one since it is so rarely discussed.
We can only hope that the understanding of who will respond to the different treatment options will emerge over time. The is no way to predict who will respond well to HU and who will not. The same is true for the interferons and other treatment options. It is still a matter of trial and error.
You are absolutely right about how important it is to listen to our bodies. It is also important for us to speak up when if feels like something is not right and for our providers to listen to our bodies too. Collaborative care is optimal care.
You may respond quite well to one of the other treatment options. The interferons and JAK-inhibitors work in a different way. Your response could be totally different than your prior experience. My response certainly was very different. Having reservations about restarting cytoreduction is understandable. Moving cautiously is likely the best approach. You may want to consider starting at a very low dose of another option then gradually titrate up to give your body a chance to see if it can be tolerated.
Hi I came off HU as my gastric tract couldn’t tolerate it . Made me so ill burning constant upset stomach felt aching & lost weight & hair started to shed after only 6 weeks. Took myself off it & after a battle re next drugs I managed to get prescribed for Peg Interferon. I asked to go on it as I was fit & healthy before the HU. ET Jak2 positive. Discovered after sport injury blood tests I requested.
Interferon is brilliant once you get doseage correct. A year of experimenting I have had . Weekly dose made me have migraines . Now monthly & brilliant.
I read up on this drug & made up my own mind it would be worth the try & now I feel human again . Took 6 months off HU for stomach to calm etc .
Now back to normal & sailing walking & enjoying food again . Julia UK .
I was taking hydroxyurea for the first few years after my diagnosis. I had a lot of side effects, maybe the worst being fairly rapidly deteriorating arthritis which became bad enough that walking and sitting were increasingly difficult, my skin healing very slowly after even minor injuries, poor appetite and weight loss. Then I switched to pegasys interferon. The first few months were a bit unpleasant - like constantly having the flu with aches and pains all over. But gradually it got better. My blood results improved so I didn't have to go for phlebotomies. Over the following year the side effects of the hydroxyurea mostly resolved. Now, several years later, I walk and sit normally / comfortably most days, just a little trouble if I overdo it. I have put some weight back on and eating isn't always a pleasure as it once was, but sometimes it is and usually it is at least not too off putting. My skin and nails have only partially recovered - still thin and fragile and slow to recover from injuries, but better than they were. Tests indicate the interferon is suppressing the abnormal cells quite effectively, giving me hope that the disease will not progress as it might have. In the meantime, my life is much better. I am very glad I switched. If you try interferon, give it some time before you decide whether to continue with it - at least 6 months, based on my experience, and don't be put off by the initial reaction. A few months of discomfort might be followed by years of relative ease. Not perfect. I still feel a bit achy some days. I'm still tired most of the time and tire very easily. But overall, much improved from the worst times.
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