Will get final results from BMB in a week. JAK 2 mutation and slightly elevated platelets. During the interim , the MPN specialist prescribed hydroxy. After taking about a week, am very nauseous, loss of appetite and overall general malaise. I realize this is the drug of choice for suspected Et or pre fibrotic MF however the maintenance drug makes me sicker than the disease.
Does anyone have tips on how to take this drug and minimize the side effects or a better choice of drugs to take? Read there was a new drug Bromedestat coming out but can’t find any info on side effects or if it has been approved.
New to all of this , but from what I have read the maintenance and side effects are worse than the cancer and is not a cure. Can someone please clarify what drug would be beneficial for maintenance but not make you feel sicker than the cancer .
Thanking all of you in advance.
Best to all JAB6 from Fl. US
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Thank you Cat 5 ! Still don’t understand why we should take meds that make us nauseous and are not a cure with some nasty side effects. I question if platelets around mid 500s are worth the side effects. However I am over 65 and previously smoked.
hi, since diagnosis 8 yrs ago ( I’m now 56,) I have always had high platelets 1400+/- and Jak2. The symptoms I had at time of diagnosis all went away very quickly when I ( Drs didn’t think I had a problem according to their useless blood tests and poor understanding of them) corrected my Vit B12 and other vitamin deficiencies.
When my platelets went above 1500 my haem wanted me to take HU. After lots of self research and seeing an MPN specialist to double check, it seems high platelets have little to do with risk of clots etc, so I declined the HU.
On another note, on 2 separate occasions I had 2 blood tests taken within 1 hr in the hospital to check platelet. Both times the results had a massive difference of 300 +/-. So just how accurate are these blood tests anyway ?? Mostly of course people just have 1 test at a time and every decision is made on that.
My haem liked to use scaremongering tactics . His knowledge of ET ( and vitamins) was almost 0. Needless to say he is no longer my haematologist and I do not take HU. If I had any symptoms related to ET I might consider something but I’m fit and well and ET doesn’t impact my life in any way. To take a drug with so many side affects just to bring down platelets numbers, that in real life aren’t that important, is very poor medicine indeed.
Pubmed is a great resource for looking at the studies if you want more information. Very easy to use. I think you need to do your own research and come to a solution that you are comfortable with, weighing up all the pros and cons. Don’t feel pressured into doing any until you are 100% sure it’s the right thing for you.
I've been on hydroxy for several years with no reaction, but many people have little tolerance for it. Let your doctor know that you are not tolerating it well and would like to look into other options.
I have taken it with and without food and that doesn't seem to make a difference for me. I used to take it in the morning and found that I was uncommonly tired by afternoon, so I switched it to the evening. My doctor says that there is no difference in when you take it.
While hydroxyurea is one of the drugs of choice for ET, it is not the only one. Pegasys is also considered a viable treatment option. Anagrelide and Jakafi are also potential treatment choices. While some people can tolerate hydroxyurea and benefit from it, not everyone can. I am one of those who cannot tolerate it. i experienced toxicity even at very low doses. I have done much better on the interferons (Pegasys/Besremi). They are more effective and much easier to tolerate for me. Note that we are all different in how we respond to these meds. We are also different in what helps with adverse effects. The only thing that worked for me was to discontinue the HU. Others can advise on what may have worked for them.
You are correct that there are other drugs in development. Bomedemstat and Besremi are both in clinical trials for ET. The preliminary data is promising. Here is some information on Bomedemstat mpn-hub.com/medical-informa... There is more information avaiable if you want to pursue it.
Is your PLT stable? As you might see in older posts, up to 600 is considered ok by many experts. My Dr gets concerned somewhere between 600-700. This is a decision for you and your Dr, but if you were stable before starting HU and decide 500ish is ok, maybe no need for cyto treatment at all right now.
Thank you EPGuy for responding. Yes platelets have never been over 539 that I am aware of, however was a smoker and over 65. I called MPN specialist yesterday and reported symptoms. Nurse said to discontinue until I get BMB results and genetic testing on 23 June. I will then know what I have with my JAK2 mutation. Could hopefully be ET but could be pre MF. The anxiety of not knowing has been difficult . Especially since a non MPN specialist diagnosed MF before I changed to a MPN specialist.
Would like to go on a type of interferon but not sure if side effects would be worse than hydroxy. I think whatever they diagnosis me with, the interferon would keep progression down. Thanks again for the response
You've gotten some great advice here already so not much to add. I was started on HU when my platelets shot up to 1,400 and I had some bleeding at the gums (never had previously) - my MPN specialist had been hesitant to put me on any medicine as I was <60 and in general overall good health (even with platelets at 900) and we were on the aspirin and monitor approach. The unexpected jump and the bleeding had him recommend starting on HU. I did and it started to work - bringing platelets down to their lowest levels in years (600s) but I was not able to tolerate it - felt horrible; extreme rash; nail discoloration - so we stopped and moved to Peg (which I had been pushing for the more I had studied it). Have been on Peg for about a year (after stabilizing dosage - stopping for 2 months due to liver sensitivity - etc.) - now on 90mcg every 2 weeks and dealing with very few if any side effects (almost always experience extreme fatigue day 2 after injection but not much more)
The change in medicines also had my MPN specialist want to do complete gene testing (to see if I had any other non-driver mutations) and allele burden testing - he says the research is still not 100% there but sensitivity to HU could point to other issues he wanted to check. Glad he did as given a number of factors (including a very high allele burden) we could be dealing more with pre-MF than just ET...either way glad to be on interferons as for now they are the only treatment which might hold out hope to arrest if not roll back disease progression (unlike HU).
It sounds like you are on the right path in contacting the MPN specialist and stopping HU until more information. The good news is that there are additional treatment options today and work being done on others all the time.
I've been om HU, IFN and now Rux. All worked well for me. IFN is a great choice, both IFN and Rux can be disease modifying for many.
Unfortunately for me, I've suffered the known risk of very rare but permanent autoimmune condition from IFN. (boosted by a flu vax) I've posted about it. So it's a good idea to track this carefully while taking it.
On the pre-MF, this is a relatively new category that even the top docs can be uncertain about in some cases. Hoping your MPN doc can add some certainty.
After much reading on this site, it makes me curious about how many are diagnosed ET that becomes MF. Since ET has a low percentage rate of turning into MF, wondering if these people were wrongly diagnosed with ET instead of pre MF. My point being, I think you are correct about finding the right MPN specialist that correctly diagnoses your MPN.
I'm so sorry to hear you aren't tolerating the HU. My husband has been on it since September, with no problems. He takes his in the morning with his breakfast. Wishing you well.
I don't know your entire health situation and if there are other health conditions your dealing with but platelets under 600 are usually considered not worrisome. I'm really surprised you were put on HU right away versus being told to take aspirin while your waiting for BMB results.
I have PV/JAK2 (age 62) and have been on aspirin and phlebotomy every 3-4 months since diagnose which was 20 years ago. I'm considered low risk and this regimen has worked wonderfully for me as an individual especially since Pegasy's did not agree with me at all. Was on HU for a few months and felt okay but did not like the idea of putting that drug in me especially because it can cause skin cancers and I live half the year in a sunny location. None of these current drugs are cures but they can lower your numbers thus lowering risk for thrombotic events. For your info my platelets have hovered around 1000 for all these years and currently take 2 low dose aspirin a day since turning 60.
Remember to advocate for what is best for your situation. You are your own best doctor! My Mayo MPN specialist said to me this morning on a teleconference that he is learning so much from my situation that he is going to apply what he is learning from me to help guide other PV patients. We are all so different with how PV/ET effects each one of us coupled with overall health and severity of the disease. Listen to your doctor's suggestions but also listen to yourself. HU appears to not be your friend. Wish you the best on your journey......this disease is manageable and is not a death sentence. Kerry
Hi, I am some of those symptoms when I started on HU in summer 21 however all.passed after a month or so. I take the Hydroxy at 10pm with a small snack (rice cake/slice ot toast with a skim of butter) and cup of herbal tea and then am.asleep if any nausea. It takes time for the body to adapt. However, the pills worked and am now down to 3 a week and platelet number high normal. Best ,Val
Hi. Sorry to hear you are getting side effects. I started on Hydroxy 6 months ago, initially on one a day , platelets came down quite quickly to start with then stalled. Ever since the the dose has been increased now 1000 5 days a week and 500 the other days i have felt pretty awful, upset stomach, bone pain and no energy. I have an appointment on Monday to discuss moving to Interferon as i really cannot carry on feeling this way but all these drugs have a down side. One thing i would say is that you body does get used to this drug after a few weeks, depending on the dosage.
Thank you Arnold! Sorry you are feeling poorly too. I thing I am going to ask for an interferon. At least it offers some preventative measures to possibly slow down the disease progression. HU does not offer protection so why tolerate it is my question?
We shouldn't have to. My Haematologist told me at my initial meeting that Interferon had awful side effects, but they can't be any worse that what i have been experiencing with Hydroxy, i don't live anymore, i exist. I think cost is probably a factor in not wanting to prescribe it.
I am Hu felt the same nausea and no appetite but because I was under a gastroenterologist consultant due to a blood clot to the liver he prescribed me metrcloprimide but didn't work then got put domperidone and I have never looked back nausea gone and appetite back to normalStay safe
If your body rejects it don’t suffer in silence. I foolishly put up with it for 8 weeks worst thing I have ever endured headaches exhaustion aching limbs weight loss due to diahorea. Never been so ill. I was not given any other advice just take tablet for life 🙈. I read this brilliant forum page & realised my body was not ever going to cope with Hydroxy. My platelets were not high no symptoms the Hydroxy gave me the symptoms. However others cope with this drug.
I took myself off it after ringing my Haemotology nurse to inform my Dr. I then contacted MPN expert for advice. I was on nothing for 5 months then Interferon which gives me no side effects whatsoever on a low dose. I have ET Jak2. Discovered after sports injury . Because over 60 they insisted on medication , but you have choices . Julia . UK
Thank you Julia! So glad you switched and have things under control. This is the very best and informed group I have found. Everyone is so very helpful.
Hi Julia, May I ask what low dose of Pegasys are you using? I cannot seem to tolerate HU daily. Right now I am only taking it 3 days a week to see if this works without daily headaches. I am 79 with ET JAK2.
Eileen I am on 45 a month . I started on 45 a week but had headaches . Professor Harrison moved me to monthly & fine on that. I inject mornings as night time didn’t work for me . No reaction if morning injection.
On Hydroxy I was on 500 daily 5 days a week most horrendous experience I have ever had . I was so ill I was convinced it was the ET however fortunately by stopping it I realised it was the medication my body reacted to. I am healthy again since Interferon with regards to no side effects & feeling fit. Hoping I stay that way . Julia 👌
Since your platelets are only in the 500s I would suggest you might possibly start on Hydroxyurea 3 days a week. Remember it is necessary to drink minimum 64 ounces fluids daily to rid the toxicity of HU. My hematologist said to take half hour before or after a meal. Also, it seems necessary to take a low dose aspirin daily.
Hi Eileen, I drink at least a half gallon of water a day and did take 500 HU after meal. Maybe every other day would work but thinking maybe the interferon would add a layer of protection so the disease will not progress.
Hi Jab6, I started HU at the end of March this year. What you are are experiencing is normal. I had horrible nightmares, leg cramping, no appetite and was so tired. I am just now (June) starting to feel really good! I just had to ride it out. I started taking B12, B1, and Collagen powder. I feel that they have helped with the fatigue, dry skin, and appetite loss. I also supplement a protein drink like Ensure twice a day and ginger tea. I take the HU just before bed with lots of water and then brush my teeth. I hope these tips help.
I was on hydroxyurea for over two years. I insisted on starting with a very low dose because I only weigh 110 pounds and react strongly to medications. I did well on one pill every other day, and when I was having more nausea and fatigue after a year I moved to every third day. I probably did well for the first year and a half or so, but I do wish I would have changed sooner than I did because after a while, I did start to feel extremely nauseous and tired all the time. I was able to switch to Pegasys, which I also started on a low-dose. I inject myself once every two weeks, and even though it took many many months, my platelets have come down, and I feel so so much better.
When speaking with your specialist, it does matter which drug you choose but also your dosage. Sometimes if we are having strong reactions to a medication, if we lower the dosage, we are better able to tolerate it.
Those are just my experiences, and I wish you the very very best! you have found a wonderful place to get information
Thank you excellent advice! I think you are also getting the benefit of progression prevention with the Pegasy from all the great advice I am getting on this site.
Hi Jab6 - I have the same diagnosis & treatment - been on Hydroxy 500mg once daily, 2 at weekends.I found the treatment made me nauseous to begin with & was prescribed anti nausea meds & Omeprazole for my gut. I think Magnesium helps with fatuque too.Much better with those added, but I don't need anti- sickness meds now. Discuss with your haematoligist for further options.I am very stable on this regime.Lots of luck.XX
So sorry you are having a difficult time working out the best route for you. Not everyone has side effects. I started with platelets at 850+ and even after a nightmare episode of sepsis (unrelated to my ET with JAK2) last year when I was not having hydroxycarbamide administered for 8 weeks whilst in intensive care), I got back on the HC and things are getting back to normal’ ish!
So my advice is not to over think this. I have never had any side effects. Some do, and I can imagine it’s no fun but try to keep optimistic and positive. ET is a condition you can live with.
While on Hydroxy, I took decongestants for bone pain and Gravol with ginger, for Nausea. When my Hemaglobin began to tank my MPN doctor put me on Eprex injections as well.
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