Recently diagnosed..

Hello everyone.. I've just joined this forum, and at first I was surprised at the wide spectrum of people who are diagnosed with ET. From my readings I thought it's more common with people who are 65+, but here in this forum it's shocking to see people diagnosed since 17 years of age. I've just been diagnosed 3 months ago, and I'm 51. The genetic test came back with JAK2+ , and I'm so gutted. I was put straight away on Hydroxycarbamide, and I now I feel muscle and joint pains, and I'm not sure if this is normal. I wonder if anybody could share their experience of symptoms please, and if there are any natural alternatives to this horrible treatment.. Many thanks

[Nickthedevil]

Hi and welcome to the forum. I am sure you will find it a great comfort - I know I do. I also have ET, Jak2 positive. I was diagnosed 3 years ago at 57, and also started taking Hydroxy straight away, partly due to being high risk as I also have heart problems. Both ET and hydroxy appear to affect different people in different ways. I also suffer with joint and bone pain, along with fatigue and bruising, since taking hydroxy. There are alternatives, but not all are suitable for everyone, you need to talk to your haematologist at your next appointment. The best source of information on treatments and side effects is MPD Voice - I found the site invaluable when I was first diagnosed. Maz, the administrator is fantastic, and will always try to help with any questions you have by pointing you in the right direction. It is frightening when you are first diagnosed but there is support here for you which will help you come to terms with things. I hope you soon feel better.

Best wishes, Karen x

[Hidden in reply to Nickthedevil]

Hi Karen.. Many thanks for your reply. I can relate to the symptoms you just described. they only started when they increased my dose to 1gm/day for 5 days, & 500mg a day in the weekend. I'm willing to try all sort of natural remedies as I believe they should be the first port of call. I spoke to my new consultant last week, and he said there is a new treatment that's coming out soon, & it works on JAK2 and it should be better, but for the time being, I should stick with the Hydroxycarbamide. I wish you all the best too, and If I find any information, I will put it here. Thanks.x

[cannonfire]

I, also have ET JAK2+. I am 59 years. So far I'm only on an aspirin daily. I found through research that pomegranate juice is supposed to be good for lowering platelets. I can tell you that after I began taking pomegranate pills platelets went from 510 to 467. I don't know if it was the pomegranate or if it just happened. This forum is wonderful.

The people here are wonderful.

I wish you luck and stay in touch.

[Hidden in reply to cannonfire]

Hi Cannonfire.. thanks for your reply. I'm not sure why they put you on Aspirin only when you are JAK2 positive. When I was first diagnosed in Oct2015, my platelets reached 911,000 and since I started the treatment it went down to only 730,000, so they keep increasing the dose gradually until we reach an acceptable platelets count.

May be because I'm considered high risk as I had 2x TIA three years ago which were completely out of the blue. I have no health issues, fit and healthy, no blood pressure, no diabetes, nor even family history. That's why I was put straight away on Hydroxycarbamide. My next appointment is on 3rd February, and I'm planning this month to follow a strict diet, eating all the food that they claim is JAK2 inhibitor, drink 3-4 ltrs of water a day, and go back to the gym. I hope when I see my haematologist he won't need to increase my dose again. All the best and I look forward to read how everyone is doing. Thanks

[johoho in reply to Hidden]

Hi Molly, i would be interested to hear more about your diet, you mention foods that inhibit jak2?

[Hidden in reply to johoho]

Hi Johoho :). Yes, I read about some food that could be JAK2 inhibitors, especially Boysenberries, which I searched for and I don't think they are sold here in the UK. They are similar to Blackberries, so I'm going to try it on a daily basis. Also, Cinnamon drink is very good for blood thinning (I use this term loosely though), but my grandmother used to say that it's not good to have it during period as it makes it heavier. I'm still learning though, so I will write a journal this month of all the food I will introduce and see how it goes in February.

[Paul42]

Hi There,

I cant share anything about hydroxy as never been on it, I have PV and am on ruxolitinib which is the treatment you will have been told about. Its currently on trial for ET patients, what i do know is pre treatment my platelets were always around the 400-450 mark which is top end normal, they have dropped all the time since i started the treatment and have now balanced at around 250 which is mid range normal, so if this same occurs with ET patients it will prove to be good.

Other than a bout of shingles early on ive had no side effects.

With regards to ET my sister has this, and is 50 this year. Her count is around 800,000 - 900,000 and she just takes clopidogril which has a similar blood thinning effect as aspiring, she has been told doesnt need to think about hydroxy unless count goes above 1,000,000 or she reaches 60. Maybe as you say in another post they are being cautious because of your TIA's. I would ask the question at least to find out why they have considered you high risk - if they actually dont then maybe you could seek a second opinion on why you are on hydroxy.

You say you are fit and healthy so i would certainly make an appointment and ask the question.

Good luck, the early stages are always a bit confusin as you come to terms and try and understand more about what is going off.

Paul

[Hidden in reply to Paul42]

Hi Paul, Many thanks for your helpful response. I am also on Clopidogrel since I had my TIA. I did seek a 2nd opinion on private last Wednesday. He also agreed with my original Haematologist. Because of my previous TIA, they have to bring the platelets count down to normal. He agreed that if I didn't have TIA, I would have been put only on Clopidogrel, or Aspirin. I even asked what's the harm of leaving the platelets count as it is as long as it is below the 1million, and take Aspirin as well as Clopidogrel, because the main aim is to stop the platelet aggregation, he again dismissed the idea because of my un-expected TIA. I will try my new healthy eating this month and increase my gym visits, until my next visit beginning of February to see if this will make any difference. Have a good day:).

P.S. My private consultant mentioned ruxolitinib, and he said we shall wait until we get the approval because it will be good for me. It's a JAK2 inhibitor, so may be it's best to work on the mutated gene rather than suppressing the bone marrow which would affect the other blood cells it produces.

[Hidden]

Hi Molly, welcome to the club. Though as I always say it's not one we would choose to be a member of.

You will find lots of good information and support here. It is always a tough time when first diagnosed. I was diagnosed in 2012 at aged 51 like yourself. It was following a portal vein thrombosis. Blood tests revealed I had the jak 2 mutation and a bone marrow biopsy confirmed I had ET. I was gutted too. After course of anti clotting medication and I was also put on Aspirin, initially platelets lowered considerably. However later they started to rise again and I was put on Hydroxy. Although they were not at astronomic levels I was advised I was put on it because previous clot put me at higher risk. Your previous TIAs probably contributed to decision to put you on Hydroxy straightaway but you should clarify that with your doctor.

Since I was put on Hydroxy my dose has been both increased and reduced. I now only take 500mg on Mondays and Friday's and platelet levels remain stable(fingers crossed it continues) in normal range and other blood counts ok. I had lots of symptoms like headaches, extreme fatigue, itching etc early on but pretty ok now. Still get tired but the Hydroxy did help me despite my reluctance to take it. Though would still love not to have to take it. I lead a pretty normal life despite it all.

Reading your other posts it seems you are taking a sensible approach in aiming to drink plenty water, eat healthy and exercise. We have to give our bodies best chance! I hope the bone and muscle pain settles down soon. Let us know how you get on Liz xx

[Hidden in reply to Hidden]

Hi Liz.. I feel much better now reading you are on Hydroxy twice a week and your platelets count is still stable. I hope one day I get to that stage. I will keep you updated regarding the change of diet and exercise, fingers crossed :). Have a wonderful day

[chrissie1959]

Hi Molly x I had et for 8 years am 54. Now I get lot bone pain on on hydra 1000mg a day 7 days a week x keep to a healthy diet x my platelets count is 305 best it's ever been x so hopefully this be some help x welcome to this site as I found it very welcoming and helpful xx

[lynnieb]

Hi and welcome

I'm 45 and was diagnosed in the middle of last year. I was shocked as I'd never even heard of ET. My consultant decided to wait before putting me on medication though, even though my platelets are knocking on 1500. I have other health issues too.

I haven't heard of any natural remedies, though the usual drink plenty/healthy diet applies.

I do get terrible joint pain, but I have mild osteoporosis, so I don't know if it is that causing it or the ET.

It is certainly a complicated condition to understand. I used to be a staff nurse and I struggle with it!

Anyway, I wish you well and hope you feel an improvement soon.

[Hidden]

Hi Lynn.. Very true it's a complicated condition & in my view every individual reacts completely different to any illness or medication depending on many other factors. I wish you well everybody well and to find comfort & reassurance with one another. Molly

[Hidden]

Hi welcome i have ET jak 2 + im now 63 first started when i was 60 ,yes age is no barrier im afraid , hope you dont feel too bad, im finding it hard to know whether its ET causing my aches n pains or just my age i get very very tired i notice now and and bruise easily ,some headaches and feel hot for no reason ,then chills heamatologist doesnt really say much , im due back mid Feb regards Holly

[Hidden in reply to Hidden]

Hi Holly.. I can assure you that all these symptoms have nothing to do with age. I am a strong believer that diet has a great impact on how our bodies cope with pain or illnesses. May be change of diet, & plenty of water would help. I drink on average 3-4 litres of water a day, and I noticed the pain is less when I drink that much. Good luck with your appointment in Feb, mine is on 3rd

[Hidden in reply to Hidden]

Hi thank you Molly, you could be right im just cynical at times , im not keen on plain water. thats one of my problems i drink alot fluids but not plain water , i tried sipping during day ,but not enough ! my appoilment is on 17 th regards Holly. x

[Mazcd Partner MPNVoice]

Hi Molly, welcome to our forum, as you can see it is a very welcoming forum. If you would like any printed information on ET, Hydroxycarbamide etc then please email me at [e-mail] and I can post leaflets to you. If there is anything I can help with please let me know. Kind regards, Maz

[Hidden in reply to Mazcd]

Hello Maz, I'm so glad I found this forum, I felt so lost and lonely since my diagnosis 3 months ago, and it was a revelation to find how many people are affected by this rare illness.thanks a lot for your help. I'll email you this week and will put my details in.

[Strawb5]

It's just over 2 years since I was diagnosed with ET jak2+ and I'm now 68. Although I have the fatigue, bruising, aching bones etc to varying degrees on different days the thing that annoys me the most is having to slow down! I go swimming and to Aqua Fit every week because I find it less tiring than walking. I take Hydroxy 1000 every day plus aspirin. My platelet count is now down to 365 which is good.I only recently found this site and it has helped me accept and understand things I was struggling with. Thanks to you all and A Happy New Year to all of us!

[Hidden in reply to Strawb5]

Hello StrawB. I'm glad your platelets count went down to normal reading. My haematologist also increased my dose 3 weeks ago to 1gram a day 5 days a week, then 500mg in the weekend. I hope this dose will do the trick. Happy New Year to you too

[Hidden]

Does it make a difference to us in way we feel , if our plateletts were lower, ? in that its the high platelet count that causes all the symptoms ,by around 430 in afternoon i feel shattered i must say 😞

[Hidden in reply to Hidden]

I'm not sure really, but when I was diagnosed with ET in sept2015, they noticed there was a trend of rising platelets count since 2011,& no one noticed despite having 2x TIA's. During this time, I was OK, the only time I felt good when i was going to the gym, I even had a personal trainer for a year and I felt great. Only when I stopped that I felt tired all the time. May be gym is the solution to keep our energy level high.

[Hidden]

Yes mine were on rise from 2012, i cant do much excerise because last 20 years i have had chronic back and neck pain gentle short walks is about it . .x

[Karol_Rua]

Hi Molly,

I was 27 when first diagnosed with ET; the JAK2 mutation wasn't even known about. I am now 41. When I was 31, I developed a clot in my hepatic vein due to ET. My liver failed and I had an emergency liver transplant. I have aches and pains and various other complications due to my treatment post-transplant. While I sympathise with you on your recent diagnosis and your shock, please be more patient with the treatment. I hate HU, hate the fear of taking something so toxic that I might get a cancer. I MIGHT NOT though...

The aches and pains aren't permanent - they come and go (for me).

I was given the option of HU 4 years ago but was too afraid to begin this treatment so put it off for a while. I now have a second inoperable clot. I would take the aches and pains with HU in exchange for the fear associated with a clot which my consultants are just monitoring (as there is nothing else to do).

My advice to you is to be thankful every day that HU will manage your platelet count and prevent a thrombotic episode. Life is hard, but you're alive. I hope this mail doesn't seem uncaring - it's not meant to be; but it is meant to demonstrate that you're possibly being a little too premature in your assessment of HU. Give it a chance at least.

K

[Hidden]

Hello Karol.. You are such a brave woman, and thank you so much for taking the time writing about your experience. I think I was so worried because all I read about HU was scary & don't sound assuring. I may need to start reading on how to manage the condition, rather than reading about the side effects. After all I should feel lucky it was discovered before it did any permenant damage to my internal organs. Thanks again, and thanks everyone who replied and gave me more understanding of this condition.xx

[Karol_Rua in reply to Hidden]

Thanks Molly, brave I'm not!

But you're right to focus on how to manage the condition and the effects of HU rather than trying to find an alternative just yet.

We're all in this together - I only joined this forum very recently and it's been terrific bouncing ideas and issues off others. Please don't hesitate to keep asking questions; I'm a veteran after 14 years

Best wishes, Karol

[Hidden in reply to Karol_Rua]

Thanks Karol.