I was diagnosed 2019 ET Jak2, platelets almost 1000, my haemo started me off on low low dose hydroxy to lower platelets, increasing each time I visited. Fast forward to present, I now take 1000 Mon to Fri and 500 Sat /Sun which he says will be my dosage for rest of my life to keep platelets level, I still feel nauseous/fatigued most days, is this normal, does anyone else feel this way?? I'm very grateful that my haemo is looking after me and has got me stable but the thoughts of feeling this way most days for rest of my life fills me with dread.
I would very much appreciate hearing your opinions.
Regards
Phyllis x
Written by
Simris
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That sounds like quite a heavy symptom burden; your quality of life is every bit as important as the treatment of your disease.
I understand that you’re grateful to your haematologist for ‘looking after you’ but you should have a discussion with him/her about the impact hydrea is having on the quality of your life. A good consultant should be just as concerned about your side effects, as achieving stability of your disease.
I actually take hydrea with no issues, but if I was suffering from debilitating side effects I would be asking about alternatives.
Hi Simris, I havebeen taking hydroxycarbamide and aspirin for over 5years as I have PV. During this time the hydroxycarbamide dose has been altered several time as my platelets have sometimes risen or my neutrophils have fallen. At the moment I am on the same dose as you but might have to consider taking anagrelide also as my platelets are rising again. We will have to be on medication for the rest of our lives and it is highly likely that the dose will be modified or even changed to one of the other types available if our illness progresses. Tirednessis a symptom of our illness and of hydroxycarbamide also causes mouthulcers for me occasio ly.
Hello Phyllis, I started with ET Jak2 around the same time as you. I started on Hydroxycarbamide at 500 a day, it eventually got raised to 1500 for five days and 1000 for 2 days a week. I had a few side effects the main one was fatigue. The meds weren’t having much effect on my platelets and they wanted to increase the dose again, this was about a year in. When the consultant suggested increasing I politely said NO as the fatigue was not good, bearing in mind before hydroxy I didn’t have fatigue. They then said they’d get a 2nd opinion. Lucky for me it came from Dr Adam Mead, he said to stop taking hydroxycarbamide as it had no benefit and go onto wait and watch. At the time I was very happy with this knowing my personal risk, I wasn’t offered anything else at the time as I have another condition that makes me awkward for med choices. Anyway around July ‘21 I was diagnosed with PV, still on wait and watch at this point with venesection. On August Bank Holiday I cut myself and a hospital visit later with a couple stitches I had the full appreciation of how sticky/thick my blood was/is. At my next follow up I insisted on treatment, given a couple of options subject to tests. I am now on interferon 45mcg per week, and my platelets have started to drop after 8 weeks. So please do voice your opinion about the fatigue.
It sounds like you already know that nausea and fatigue are common adverse effects from hydroxyurea. Not everyone is able to tolerate the toxicity of HU. You do have to weigh the benefits vs the adverse effects of HU or any other med used to treat MPNs, The good news is that there are other options. The PEGylated interferons are the other first-line treatment option for ET. Anagrelide and Jakafi are second-line treatment options. Your hematologist should have already reviewed all of this with you. Suggest you go back to your current doc or seek a second opinion about your treatment options from a MPN Specialist.
I was unable to tolerate HU. I have done much better on PEGyated interferon. All benefit with no adverse effects. Note that we all respond differently to each of these meds. Some people tolerate HU just fine and cannot tolerate PEG.
Morning, I agree with mhos61 about all she says. I now have to take 1500 daily alongside clopidogrel (started with aspirin but this didn't work for me). I have no side issues and lead a totally normal life.You do need a better daily lifestyle than this, could you chat to your haematologist, perhaps there could be something you could take which would take these other nasty side effects away?
Hi Phyllis,As Hunter rightly said, we all react differently to our meds. I was diagnosed ET JAK2+ in 2017 and am on the same dosage of hydroxy as you.
In the early years I suffered from frequent fatigue, disorientation, night sweats etc but as my system adapted to hydroxy most symptoms have now more or less disappeared.
One thing I did learn over the last 5 years though is not to blame everything on ET/hydroxy. It seems I also had a severe vitamin D deficiency, which was easily rectified by my GP . That massively reduced my fatigue levels very quickly, so it might be worthwhile talking to your GP about potential non-MPN factors that might be affecting you.
When I took Hydroxicarbomide even on a low dose the side affects were awful. I could not function. Fatigue headaches bone pain etc. Eventually they changed me to anagralide. Very few side affect. It has given me my life. See what is best for you
Please know that this is not medical advice - just my personal choice and experience so far.
I have found that taking ca. 1 teaspoon of tumeric, a little under 1/2 teaspoon of ginger (to activate the curcumin part of tumeric) and a little under 1/2 teaspoon of ginger took away exactly the symptoms you tell about. I mix the spices in 1/2 glass of buttermilk. I fill up the glass with water and drink that every day.
I have been doing this for ca. 2 months now and feel clearer in the head and seldom have the tiredness I was experiencing before.
However this is a natural remedy, and a personal choice. I told my hematologist about it and she did not have an opinion about it at all.
It may be possible to buy capsules for this.
I have not gone back to the stressful life I was leading before and I tend to see my disease as a message to make some changes in my life that I would have benefited from doing before.
I'm on 1000mg every day. My platelet count is now too low, same with WBC. I have extreme fatigue and rarely able to eat breakfast. I also had extreme anemia for which I got an iron infusion. That didn't really make me feel much better. I have 2 1/2 weeks to go before my next blood test to see where I stand. I can rarely get through the day without a nap. I'm thinking I should change medications, anyone who can help Phyllis and I, we would be grateful.
I have PV with the JAK2 mutation. My B12 and D3 vitamin levels dropped to very low levels, so I got shots for a month and then my iron was down to 11 so I got an infusion 2 weeks ago. Now I'm waiting for another blood test on the 24th to see if all of this has stabilized.
You could use the time before your next appointment to prepare some questions in relation to why your blood counts are low. Maybe ask their opinion on reducing the hydrea if things haven’t stabilised.
I hope everything goes well for you at your next appointment .
I am sorry to hear that HU is causing problems. I had a similar reaction when my HU was increased to 1,000 a day. Fortunately I didn't really need that high a dose so my situation is fine now at 1,000 twice a week and 500 for the remainder.
A couple of things I would ask the doctor - can you try 3 days at 500 and see what happens, can you move one of the 500 to midweek or both for that matter so that you have more energy during working hours? I noticed that the fatigue I felt at 1,000/day was strongest midafternoon, so I started taking the pills at night rather than the morning so I would be asleep when the fatigue seemed at the strongest. My doctor saw no need for HU to be taken at a specific time of the day.
I would also look to diet and see if there is any thing that could help there. For myself, I have found that more fruit and nuts and less meat, cheese, and starch has resulted in better energy levels through the day.
Hi Siris, it’s not good to have that amount of fatigue to live with and to feel it’s going on forever. As Hunter has said talk to an MPN specialist, I feel very few Doctors would agree that there is a definitive dose that will remain for the rest of your life, outside factors and the body change and your reactions to drugs will change. Your Doctor is obviously a good communicator however he may not be right with regard to ET (My ET was Diagnosed in Autumn 2019 and Hydroxy has been OK for me) at 71 I don’t know how much of the fatigue I sometimes get is ET or Hydroxy or just Age - but if I was feeling like you I would want someone to take it on board and set up some different tactics with different drugs. Maybe some more tests to get to the bottom of the problem. Sorry to go on and on but please don’t settle for ‘The rest of your life’ diagnosis you deserve more.
As you see in the posts, HU doses are not set permanently. I started with 1000+PLT and was put on 1000/day. After a few months I was miserable and asked to reduce it. I now do ok on ~500/day. But the fatigue etc as you see in the replies here is also part of MPN. I can also get tingling fingers if I need more dosing. But I've currently also restarted taking NAC supplement and it seems to solve the tingling without adding more HU.
Are your other blood numbers ok? What is a safe platelet number has been discussed here and varies among Drs with who is being asked. If your Dr is keeping you at the lower numbers of normal, you might ask your Dr about letting it go to the higher ranges of normal.
This PLT chart for me I've shared on the Voice elsewhere shows this idea. With PLT at the low point here I was miserable, now at the higher normal ranges it's not as bad for me.
I echo the thought to ask your doctors if there might be other causes for fatigue. In my case, I have a thyroid issue as well and occasionally my thyroid hormone needs adjusting.
Hi Simris , I was diagnosed with ET at age 50 I was put on aspirin only and blood checks every 6 months , i didn't feel any different apart from fatigue and sometimes headaches, fast forward age 60 got covid ! Experiencing lots of effects got another BMB in July 2021 result was my ET progressed to MF now on Hydroxycarbamide and to be honest I am still suffering with side effects I would say a bit more since taking Hydroxycarbamide 500mg 5 days . Now my haematologist wants to try me on ruxoilitinb ! I go back 22nd March to talk about switch so fingers crossed this will take away some if not all effects 🙄🤞
Hi Simris - ask your haematologist to prescribe meds to counteract the symptoms resulting from taking Hydroxy - there may be something he can do to reduce them at least & make things more tolerable. Good luck.....
Thank you for your reply Annula, I have appointment end Feb, tho just see CNS on last few apts, she just lets me have latest platelet count and oversees any problems really, will definitely chat with her to see if we can sort out this horrible fatigue.
I have pv diagnosed in January 2022. My platelets count over 1000, so put me on 500mg once a day. The 2nd blood test show count was down to 560. But now, my red cells and white are still high, so doubled dosage next blood test end of month. I always get headaches and nausea for a couple of hours but does pass. Someday s my legs feel like lead weights.
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