HU Journey

[heathermc]

Well after an initial good start to using this medication I've had a bit of a bumpy ride. I'm ok now but me and worry are never far from each other. My dose was in creased to 1000mg 2xweek 500 mg the rest. I've had a few nose bleeds. I'm finding myself losing my appetite so I'm losing weight... Then ended up in hospital as was having shortness of breath. Racing heart and pressure on the chest.. felt weak. Luckily my platelets had gone down to 942 .. so the meds working. I've never been in hospital so you can imagine the impact it's had. They where really good. Wasn't in long Dr thought it was more like a panic attack. Can't win either way. I decided to give up working part time. This is all too much for me. I'm back for a routine check up tomorrow. Part of my journey I suppose.

[Inca]

Recognise all that!!! Part of living with an M P N..

Best of Luck to you,honestly you will survive,I have,nearly 11 yrs and other folk on here many more years..

[heathermc in reply to Inca]

Thank you it's a real boost when we hear of others and their stories. Managed 5 yrs with only aspirin.. but platelets got too high. I was so active until last year retired went back to work part time but I find I'm too tired. So quit my job..need to focus on enjoying life. My health is more important and well being. Hospital appt tomorrow more blood more meds..that's life.

[Inca in reply to heathermc]

Absolutely,I work at home in my studio,sculptor,but I tire very quickly.

Hits like running into a brick wall.No expos this year ,I simply cannot do it....very frustrating but we must manage it and rest when necessary.Getting your head around it is very hard ,esp if you have always been active.This site is a great help,to know of others in the same

Position.Get to Forums if poss,difficult for me as I live inFrance,but have managed to get to two.Best to you heather mac,Sally

[conno61]

Good luck going forward heather. Enjoy retirement, I am. 👍

[katiewalsh]

Hi. I’m sorry you’re having a hard time. Many of us have also found this to be stressful and have benefited in therapy, medication, relaxation techniques, etc. Perhaps some of these might help you. Best of luck! Katie

[hunter5582]

Sometimes it is hard to know what is the med, what is the MPN, and what is something else altogether. I had to have surgery for atrial tachycardia last year, which is not related to the JAK2+ PV. One thing I learned is that anxiety/panic is a common misdiagnosis for women in particular when they in fact have an electro-physiological problem with the heart. Please be sure to follow up with a cardiologist just to be sure. Meanwhile remember that HU is not a benign substance. While it can benefit you, it can also have significant adverse effects. If you are JAK2+, you might also want to learn a bit more about the role of inflammatory cytokines in the symptoms you experience. Here is a reference to the role of inflammatory cytokines in MPNs ncbi.nlm.nih.gov/pmc/articl... . All the best to you.

[Borage]

I hope you are feeling better now, heathermc.

I have had a diagnosis for ET for over ten years now, and it is stable on hydroxy and aspirin.

I had similar distressing symptoms, especially when I had been rushing round on a busy hospital ward, with too much to do, a lot of stress, not enough to drink to prevent dehydration, and sweets or biscuits to keep going because there was no time for a meal break. When the symptoms you describe had passed I was exhausted and just needed to sleep for about 24hrs. I was given a diagnosis of angina, but it wasn’t typical, it was just very frustrating.

I retired early on health grounds and, with a less stressful life, the episodes have just about stopped.

[ksos]

Hi: Hope you're feeling better by the time you read this. I've got ET, diagnosed 2 years ago, on HU and aspirin which has been effective. Hit-the-wall fatigue is the hardest and most consistent symptom, although I've also had severe shortness of breath which was frightening when it first happened.

I've cut work down to less than half time and now focus on balancing any activity with equal amount of rest and doing everything I can to reduce stress and I'm seeing a difference - meaning I can do more without feeling so exhausted -- which is heartening. I hope you find what works well for you and you feel better soon. Also, I hope share whatever you discover - everything I've tried that's helped I learned about here. Take good care of yourself.

Kim

[ELIZBEN]

You did the right thing by going to hospital. I hope you are feeling better.

Take care

J x

[Hidden]

Hi Heathermc Believe you are local to me Just been reading your last post from a month ago Hope you are doing well x