I am on hydroxyurea 2000mg a day I have been as well as expected but the last year I feel like I am deteriating. I couldn't continue to work so took early retirement due to covid I have been unable to see my haemotoligist only bloods and phone consultation with nurse. I did ring to see if I could get bloods done early but still waiting on a reply not there until July. Some days I can't get out of bed so tired and bones aching. I don't know what to do as as I said I have coped really well is this how I'm going to feel all the time it's really getting me down
Jeanette Mclaughlin
Age 63
Written by
JeniMac
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Yes I feel the same on HU. Have only been on it for 7 months and I'm wiped out...constantly tired, covered in bruises, aching constantly.....and I'm 41 so still a good 20 plus years of working to go....
Sorry to hear you are feeling poorly. It is hard to tell whether that you report is from the ET directly or from the hydroxycarbamide since wither can case fatigue. As we age, our response to medications can change and our MPNs can progress. You will need to follow up with a MPN Specialist to determine what is gong on. Since you are experiencing a change in disease status that make this an emergent situation rather than routine care.
Sorry to hear that your docs are not the best. Many docs, including many hematologists, do not have the expertise needed to provide optimal care for MPNs. That is why it is so important to see a MPN Specialist. Just in case you do n0t already have one on your case, here is a list. mpnforum.com/list-hem./
The good news is that there are things that can help if you receive the right care. I hope that is what you receive ASAP.
There is no mpn specialists in my area I'm going to ring my doctor and see if I can sort something out my next Bloods are due 5th July. I really feel like I have aged in the last few months. I did speak to my haemotoligist nurse and she said she would speak to my haemotoligist that was 5 weeks ago and no reply do you know how to change hospitals as I feel I'm not and have not had the support over the years it's been bloods tablets no offer of anything else I had bone marrow checked in 2000 nothing since x
I live in the States and with my insurance I just choose a different doctor and go. Based on the lack of responsiveness you describe, is sounds like a change in providers is a good is a good idea. Others from the UK can likely advise you better. I do know that others have said that they were able to change the hospital in which their care was based. Many have arranged for consultation with a MPN Specialist as well, it does mean you have to travel, but it is worth is. This is precisely what I do as the closest MPN Specialist is 2 hours away. I have a local doc who handles the ongoing care who is a terrific doctors, but not a MPN Specialist. The MPN Specialist consults about my care plan, the other doc delivers the services. This works great.
Please do be sure the advocate for the care you need and deserve. It is the only way you will receive the quality of care you deserve.
You might be on the wrong dosage now. 2000mg a day seems high. I would highly recommend seeing a MPN specialist and seeing if you can't go on Pegasys or another drug. I was diagnosed with PV at age 45 and am now 60. My MPN specialist recommended no drugs because I was considered low risk so I did aspirin daily and Phlebotomies for 15 years. I turned 60 last Nov. and did not want to go on HU because of skin cancer risk which I'm prone to. I've been on a roller-coaster ride for the last 3 months trying to get the dosage right on the Pegasys injections. I've had no reaction to Pegasys except for high liver enzymes or ALT. I was on the lowest dose of 45mcg. My doctor cut that amount in half and my liver is finally happy and whites/platelets/HCT's numbers are going down. Its critical to advocate for your health and have a doctor who will listen to your concerns. Hang in there and get another doctor or specialist. Kerry
Hello Jenni sorry you are having a rough time and suffer such fatigue, not easy or pleasant. You really need current bloods done to see how your platelet counts are along with backup counts for all else as so often any of our treatments whilst helping our "problem" can knock other elements of our blood that don't need reducing and can effect us - such as ferritin (element of iron) levels, that can then be treated and you can feel much easier. The effect on us is severe but the cause can be very simple and easily rectified or assisted. A good consultant would be doing this so as mentioned above if your current haem is not MPN specialised, do look at a transfer to one who is. If your haem is MPN specialised tho and you find them good normally, two routes to get help now either the departments specialist nurse to call and chat through how you are or if the department doesn't have that, call the secretary to your consultant and explain what's happening (if you havent been given context details of either call the hospital general number and ask for that person) Do know it's often not the treatment itself that is the problem but it's effect on our whole blood counts that can or it's time for a tweak of HU doseage (I was treated with HU for 14 years) as that is often how HU is used for quite a few patients with dosage constantly being upped and downed to balance helping lower platelets with keeping other blood counts "ok". I had to change to Peg a couple of years ago after HU stopped working for me (doesn't happen to most on it) and my fatigue on Peg is far worse than anything of my HU years so handy to know that can be the case for some on interferon. ET itself does cause fatigue too. SO your most essential right now is good review with consultant of all going on with you currently and a full blood count test as soon as poss. All the best Jeni and you will feel easier in due course once reviewed and got bit more help. Keep us posted.
Sorry to hear you are feeling poorly. Your story sounds similar to mine. I was diagnosed with ET jak 2 in 2008 at age 52 and started taking hydroxyurea. My dosage was adjusted many times over the years. In 2016, my hematologist said I had progressed to PV and put me on jakafi. My platelets were going up but my hemoglobin was going down and by 2017, I had developed anemia, By 2018, I could barely hold my head up and was spending a lot of time in bed. That’s when I found this site. I was advised to seek an MPN specialist, which I did. She did another BMB, and lots of bloodwork, and said I did not progress to PV but to MF intermediate one. She actually put me back on hydroxyurea and gave me EpO injections weekly, for 4 1/2 months. She also put me on another medication called Fedratinib. I hope you get to the bottom of this and figure out why are you continue to feel so poorly. I’m sorry you don’t have an MPNspecialist near you. I feel like you need to insist on another biopsy to see what is going on. I asked my original hematologist for one and he kept saying I didn’t need one. Evidently, he was wrong.
I wondered about the dosage of Hydrea as well. I have ET jak positive for over a year and I’m taking only 500 Mg every three days! Platelets dropped to below 400 and staying steady so far. Go in for a blood test in a couple of weeks so we’ll see if they’re still down. But yes I do have the tiredness all the time and have gotten some body aches. I’m still learning to prioritize . It’s hard as I’ve always been very active. (78 yrs old). Good luck with everything but don’t be afraid of asking questions of the doctors. And keep asking! And I have even shown them articles about my questions, Can’t ignore what is written by MPN specialist.
When I was feeling really wonked out at a mere 1000mg/day dosage I stopped the medication until I felt better than went back on it at 500mg where I did not get any side effects. But I was two days away from having my blood checked and at the last check, my count was on the low end of normal, and I have no other risk factors. So I felt the risk of cutting back on the medication worth it. And I have only been on HU since January, which may make a difference as well.
However, not knowing any of the other risk factors that you are dealing with and the difficulty you have in getting a response from the doctors, it may be a really lousy idea to cut back.
Hi, I felt like that for months. I too posted that I feel I’m deteriorating. My breathlessness was so bad I had to have paramedics. That led to a doctors phone consultation- blood tests -
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