Will I ever feel well again

[Scouby]

I have essential thrombocytosis, jak2 positive, I am taking hydrea 500mg 3 times per day and 75mg asprin daily, platelets count 650 on last test, struggling with constantly tired,dizziness if I do too much, out of work a year and wondering how others cope

[hunter5582]

It certainly can get better if you find the right course of treatment. You are on a higher dose of HU and with PLT still at 650 it is no wonder that you are still symptomatic. The challenge will be to figure out what is due to the ET and what is due to the HU. Fatigue is the most common MPN symptom. Dizziness can also come as a result of the ET. To make things more complex, fatigue and dizziness are common HU adverse effects. Sometimes the only clue to sorting this out is when the symptoms began.

I have been managing a MPN (ET that progressed to PV) for over 30 years. I never had fatigue as a symptom until the therapeutic phlebotomies made me so iron deficient that the adverse effects (fatigue and more) became worse than the MPN symptoms. Shifting to the interferons (Pegasys/Besremi) resulted in a significant improvement in my quality of life. I feel better now than I did before I started on this treatment.

Suggest you consult with a MPN specialist about you situation. You may need a different treatment plan that will better manage your symptoms. Here is a list. mpnforum.com/list-hem./

Wishing you all the best.

[Scouby in reply to hunter5582]

Thank you for advise and information, will speak with my consultant again

[Mostew]

What’s your diet like ? I’m sure you have seen many recommend anti inflammatory food.

Be gentle with yourself , try to look at what is going well in life , even if it’s only tiny things.

Qi gong can be helpful . Have a look at Mimi kuo Deemer on u tube . Gets energy moving …

MPN specialist could discuss alternatives to Hydroxicarbamide

Do hope you find a way to start feeling less dizzy etc

[Plate in reply to Mostew]

I have added Vitamins B12 and B1, senior multivitamin, and folic acid daily. They have helped me. I am on the same regimen as you and I was very tired in the beginning. I slowly became more active. Do things in moderation and diet is an excellent way to help yourself. I hope you feel better soon!

[LT55]

I have ET, no meds however. I do find that regular exercise helps the fatigue. Even a brisk 15 walk can do wonders. Of course, when I am tired the last thing I want to do is exercise, but when I push myself to do it, I nearly always feel better.

Best of luck to you.

[Scouby in reply to LT55]

I loved walking and swimming but now I limit both as end up going to bed after as whole body exhausted, thanks for advise

[Otterfield in reply to LT55]

I agree. After my SCT I got out walking again as early as possible. It always helps me with fatigue.

[Mirror368]

Taking three 500 mg is a heavy dose. I would talk to your hematologist about a change of medication. Next seems to be Anagrelide or Pegasys.

Best wishes, Eileen

[EPguy]

Your fatigue experience resembles chronic fatigue syndrome (CFS). With this exercise has tight limits, and going past that is not helpful.

When I was on Besremi I had the experience like LT55 here. Activity was relieving and staying still made me more tired. But then I got an autoimmune condition from the IFN and a vaccine. (see my posts) Now I have some sort of CFS and have needed to limit exertion.

CFS is not necessarily permanent, and as others say here, you should discuss with your Dr the various other options, PEG in particular. 3x500 HU is a high dose and could be the source of your CFS, esp if you were ok before starting that therapy.

Like you I used to be very active, like a 20 something guy before my Dx of PV.

Lately I have been exercising up to my limit and it seems to be improving, but I'm careful not to go past the limit to avoid being trashed the next day.

[YBSx]

Hello

I certainly relate to how you feel. I’m ET jak2 positive and take Hydroxycarbamide. I have now been out of work 3 months due to fatigue, muscle cramps and a fuzzy head, after lots of reading I approach my GP (after being given the go ahead from the haematologist) to discuss the uses of an antidepressant to tackle the fatigue. I am currently taking a low dose of Amitriptyline and now plan to return to work as I feel so much better. The Amitriptyline took 4 weeks to improve my fatigue and it is early days but feel optimistic.

I also drink lots of water, have a low carb diet and take regular walks ( which I have to really push myself to do ) which also helps.

This route is not for everyone but I was so desperate I would of agreed to almost anything.

I hope things work out for you as I totally understand what you are going through. I have learnt that you have to be assertive and demand to be treated for your symptoms.

Good luck I know it’s not easy Yvonne

[Scouby in reply to YBSx]

Good to hear from someone with similar symptoms, my family are great but I think even they are sick of me feeling so tired most of the time,I do feel better after a walk and make myself do some everyday ,loved my job as a health care assistant but I am just not able for it anymore ( demanding physically) I will chat with my gp about meds to see if this helps Thanks for your reply it was really helpful

[Plate in reply to Scouby]

I am on Wellbutrin SR 200 mg daily. It is an antidepressant with no side effects. It really helps with fatigue and feeling more positive! Just a thought.

[Amethist]

The problem is , once you have a diagnosis like ET, every symptom you get tends to be put down to it. But it might not be the case. I originally went to see gp for a mix of symptoms, dizziness and fatigue included. I was thinking menopause. She did a full blood test, which as well as showing very high platelets around 1400, also showed I was deficient in vit D and very low in B12. My B12 was 5 pts above the lowest range so not bad enough for the gp to act, other than referral to haematologist for platelets . I sorted out my B12 and vit d deficiency and within a month- no kidding- all the symptoms I went to see gp for had vanished, all the headaches, dizziness, extreme tiredness, to name just a few. I was so happy as I had thought I would have to give up work, driving etc

So just wanted to suggest you cover all potential causes. If you haven’t had your vits checked, do so and always get a copy of your blood test results, and learn how to understand them yourself. Also get thyroid levels checked. As with this group there are other groups on health unlocked for B12/ thyroid who can help you understand test results if needed.

Btw, my platelets still very high ( I refused HU) but it does not impact my life one bit.

Good luck.

[Tomaj]

Hello Scouby,

I have Essential Thrombocythaemia. I am on 500g of Hydroxy, Monday to Friday and 1MG at weekends. I am taking 75mg of Aspirin daily. I am also taking 2.5 mg of Ramopril for blood pressure. I have tiredness problems, but I find that exercise helps. I walk 2-3 times per week and I have gone for my first run in five years, the first one since I got ET.

I stopped running because I was hospitalised with gangrenous feet and lost a toe. I used to run all the time before I was diagnosed with ET, but I had to stop due to the pain. When the pain went, I found that I had the psychological block for running again but I intend to get back into the saddle once again.

I feel better already and I intend to go for my second run tonight. I am hoping that once I get back to my pre diagnosis weight that the blood pressure will go and I can get off the Ramopril.

[IsabelleHo]

Hello Scouby

Sorry to hear about your symptoms. I also have ET, Jak2 positive. I take 2 x 75mg asprin daily and my latest platelets count is around 620 k. I noticed that as soon as my platelets go over 600-650, I’m constantly tired, I have trouble eating, constant headaches, I have brain fog, bone pain… the works.

The first thing I did was exercice again: whether I feel like it or not, I do an hour of crossfit a day, 7 days a week. The intensity depends on my energy level that morning, and sometimes, I just do a lot of stretching and forget the cardio. As counterintuitive as it may sound, exercice does get your energy levels up after a few days, even if it’s just walking slowly around the block a few times every day.

I also started looking very closely at my diet and changing a few things according to what I read on Traditional Chinese Medecine – I’m not taking any supplements, all my vitamin levels are fine. Since I rarely drink alcohol or eat sweets, what works for me is : no cold foods or drinks, very few raw fruits/veggies – all lightly cooked, even when I have a carrot salad -, a lot of root vegetables, red meat once in a while, very occasional cow dairy (I switched to goat and sheep) and a minimum of 2 liters of water a day. When I stick to it, my energy level is almost normal and I don’t have to take naps. Thankfully, I’m a freelancer, so I can manage my work hours accordingly and my clients are very very understanding.

Talk to your specialist, read up online and try things. It’s a lot of trial and error with nutrition and exercise as we’re all different but the results are worth it. Hang in there!

[Arnoldthecat]

Hi. Like you i have ET Jak2 and has been asking myself the same question for months. I have just started on Interferon, side effects have not been as bad as the Hydroxy but energy levels are still very low and it is very frustrating i agree. But like most people have said drinking plenty and getting some exercise does help. I used to do a lot of walking also which i really miss. As for work, i took early retirement because there is no way i could hold down a job. Hope things improve for you.

[Scouby in reply to Arnoldthecat]

See a lot of people are on interferon, maybe this is something I can ask consultant about,I'm on hydrea just over a year and recently it was increased from 1000 to 1500 so will see on next bloods if platelets are down first,thank you for sharing

[saltmarsh]

Sorry to hear about your problems. I've had pv for 3.5 years, age 76 and fairly active. I was on 1500mg HU briefly but my body couldn't deal with that dosage. Reduced to 1000mg/day and then reduced further to alternating days of 500 and 1000.

I too have had problems with dizziness. I addressed this by not taking any medication til lunch and making sure I had consumed about 40 ounces of water by then. It seems to have helped. My afternoons are usually cut short by fatigue so I get my exercise in the morning.

1500mg of HU does seem like a high dose and if you can't get relief through lifestyle changes, you probably need to speak to your doctor. It is definitely not pleasant to be living with the problems you mentioned but based on my own experience and that of other forum members, there is definitely hope. Wishing you the best during trying times.

[Scouby in reply to saltmarsh]

Thank you for advise

[Doxy46]

I am 77 and have had ET for 14 years. I am JAK2 positive, but at a low percent. The fatigue has gotten worse in the last 4 or so years as has the dizziness. Some of the dizziness may be due to sinus problems caused by allergies. I also snore so I may have sleep apnea, which would cause fatigue. I will know after I do a sleep test. It is so hard to tell where the symptoms come from.

[Island-Lady]

I am so very sorry that you are experiencing this. I have ET Jak2 positive. I was on hydroxy for 2 1/2 years, but even taking it once every third day, 500 mg, I still got extremely tired and nauseous so it was difficult to eat. My platelets got down in the 500 s and at that point I took a month off of all medication and then switched to a low-dose of pegasys. I started pegasys at 0.25 and worked my way up to 0.45.

the main thought I have for you is that perhaps you could discuss lowering the amount of hydroxy that you take and seeing if you feel better on a much smaller dose and if you are able to have your platelets continue to drop.

it is definitely also worth it to look into pegasys, which can lower your allele burden. It can take a while to figure it out and it is definitely worth the effort and time to find out what works for you so that you can again enjoy feeling like yourself and you have more energy. I definitely experienced feeling like myself after getting off of hydroxy but of course we are each different.

I truly wish you the very best and hopefully you feel more like yourself soon!!!!