ET JAK2 Positive

[Afya23]

Hello I am new here. Recently Diagnosed with ET JAK2 after months persistent headaches which were treated for migraines , unexplained fatigue rendered me incapable of functioning. Among other symptoms. I am 36 years and a young mother . I have been on Aspirin and because my symptoms are not improving and have left me basically incapacitated my team are planning to start me on Interferon Alpha . I am kindly asking how’s the treatment and the side effects?? Does it worsen the fatigue or make it better ?? Thanks

[Mortysdad]

Hello Alfya,I was very fatigued before my diagnosis last year of ET and Jak2. Once on interferon, my fatigue and itching has gotten much better. Don't sleep as well, but I think it's a great trade off. Best of luck to you. Are your platelets high?

[Afya23 in reply to Mortysdad]

Hello Mortysdad, thanks for your response. It’s reassuring to know . Yes my platelets are still very high . I just want to have my life back . Just have a quality life which I don’t have at the moment. Thanks .

[KyleeR]

Hey Alfya23 - I am 39 yr old mother of 4, so I totally appreciate the fatigue that comes with running after small children.

Just a couple of things I have picked up from this group that I had wish I had known when I was first diagnosed

- have you had a BMB? this would help confirm your ET Jak2 diagnosis

- how often are you having bloods?

- how high are your platelets?

- are you seeing an MPN specialist

I am currently only taking aspirin, but will be looking at interferon as my next point of treatment

[Afya23 in reply to KyleeR]

Hello KyleeR ,

Thanks for taking your time to respond.

I have had bloods after 8 weeks thou this time I am going back for review after 3 weeks . My levels are ranging between 800-900 Mind you they have been Even higher for the last few years and nobody picked it up.

I haven’t had a BMB thou I had raised the issue in my last appointment but the Dr fobbed me off and said I don’t need further testing to confirm. Only had the genetic mutation test.

For seeing MNP Specialist, I have not met any . I was only given the MacMillan Pack with a card so presumably I need to contact them myself which I am planning to .

I work long hours/ shift work and have been unable to the last few weeks as feel my fatigue is worsening especially at the end of the day . It’s sometimes worse I feel sometimes like I am losing my ability to use my hands. My job is physical. The feeling of numbness / headaches doesn’t help too. I hope this injection will help.

I am honestly frustrated at the moment. My last appointment was so rushed and felt like I wasn’t listened to.

Do I request this BMB? Could there be more to this symptoms I am having ??

Thanks once again

[patriciapugliese in reply to Afya23]

I had pretty much the same symptoms diagnosed Nov 2021 jak2 positive. My platelets where over 900 pretty consistently until I was prescribed Hydroxyurea 1 in the am and 1 in pm for a total of 1000 mg and I take 1 aspirin a day. My platelets the last 6 months have been in the 400's. I see an MPN specialist at Penn Med every 3 months now. I was going every two weeks in the beginning.

[Afya23 in reply to patriciapugliese]

Hey Patriciapugliese

Thanks for sharing . it’s great to hear other people’s experiences. I hope once I start treatment I can have my life back . The decline in my energy levels is worrisome.

[Hopetohelp]

I am on Pegasys and once it kicked in, which can take a while so need to be patient, I definitely feel less tired. Started low at dose of 45mcg to allow body to get used to it and now on 65mcg. Hardly have any side effects. Drink lots of water as I didn’t drink enough initially and felt like I had a slight hangover the next day. Don’t get that now. Good luck and ask any questions you like. We are all here to help

[Afya23 in reply to Hopetohelp]

Hey Hopetohelp

Thanks for your response and advice. I am keeping up with drinking lots of water. I always do . I have always been very physically active thou nowadays I am struggling so hoping this injections will help. Did you have BMB?? Should ni insist on having one ? Thanks once again

[Hopetohelp in reply to Afya23]

no I haven’t had a bmp. I was offered one but said I didn’t want it. Don’t fancy going through that but that’s just me. Instead I am pushing for the allele burden blood test which I believe acts as a marker to measure whether things getting better or worse. Easier said than done on nhs but I am pretty sure I will get there in the end. A lot of people haven’t had a bmb having read posts on here before but then many have so I think that is a personal decision.

[hunter5582]

Hello and welcome to the forum. Glad you found your way here.

I was about the same age as you are when i was diagnosed with ET. That was 30 years ago. Treatment options have improved greatly in that time. We are very fortunate to have more than one option now.

My ET progressed to PV about 9 years ago. I have tried several treatment options, aspirin-only, hydroxyurea, venesections, and Pegasys/Besremi (the PEGylated Interferons). I have found the interferons to be the most effective and easiest to tolerate treatment option.

Note that we are all different in how we respond to the treatment options. There is no way to know in advance how anyone will respond. Trying is the only way to know. You will likely be starting at a low dose. Most of us start at 45mcg/week or biweekly. Some find this dose to be enough to provide the benefit they need. Here is a bit of information you may find useful.

nssg.oxford-haematology.org...

mdpi.com/2072-6694/12/7/1954

All the best moving forward.

[Afya23 in reply to hunter5582]

Hey Hunter5582

Thanks. Your message is encouraging and informative. I am trying to be positive. And also trying to read more about the condition. Thanks once again

[Softy125]

Perhaps this is aggravated by stress and it is necessary to lower the level of cortisol. I started drinking green tea morning and afternoon and got great results.

[Afya23 in reply to Softy125]

Hi Softy 125

I am definitely stressed out and trying to digest everything. I will try the green tea though. Thanks

[Wyebird]

welcome, I love peg.

For the first few months you might experience side affects that a flu like and feel sick for a few days after each dose.

Prepare simple meals in advance of taking your jab. I used to take my jabs early evening, leaving until before bed didn’t give me enough time for side affects to be past their worst.

After each dose your side affects will diminish but for me it took months. Fir me The side affects are far better to suffer than Hydroxicarbomide.

I still use an ice pack on my tummy before the injection. It really is nothing and I’m extremely squimish.

Good luck.

[Afya23 in reply to Wyebird]

Hey Wyebird,

Thanks for sharing. I will try the ice pack too . I am very Squamish too. Glad I found this forum. Each day I am learning. Thanks once again

[Exeter21 in reply to Afya23]

ice pack works great can’t feel it. Do not rub area after injecting & pull needle straight out once injected helped prevent irritation around injection site 👍

[Afya23 in reply to Exeter21]

Hi Exeter 21

Thanks for the information. Noted

[Richinspirit]

Hello Afia23 - first of all about your diagnosis, don't be frightened. My husband was first diagnosed 15 years ago, after it had been missed by successive GPs for several years. Since that time, the treatment has come on leaps and bounds - it is still a relatively new disease and each year, there are more and more discoveries about what it is and how it can be treated. When my husband was first diagnosed, his platelet count was in the mid 900's. It is now in the mid 300's, we are so so happy with how we feels and the way his illness is managed. As for the fatigue - husband is so and walks for 7 miles every day, he sails, and generally acts like a two-year old ..... and he is always the last to leave the dance floor. Hold on in there - things will improve. Good luck

[Afya23 in reply to Richinspirit]

Hello Richinspirit

Thanks for such a reassuring message and best wishes . It’s much appreciated. Good to hear more positive experiences from people. To be honest, I have cried myself a river since . I don’t think I have ever been scared in life especially when I was handed over the macmillan pack .. I thought this is it I am dying and leaving my child behind! I am glad I found this forum as its very informative .I am hopeful this treatment will improve my energy levels.