I'm confused

[Kizzy03]

I was sure my stiff arms and thighs/ like having the flu was a symptom of my having ET!? But the Nurse when I phoned to speak to at the hospital said she thought not!? Does anyone else feel like that? Worse in the morning or if I get up at night

[Linda1950]

Hi I have ET with the Jak 2 mutation and do get achy bones and muscles, not every day but they pop up at strange times, not always sure where it's coming from either, joints, muscles, bone. As I'm 65 I'm also not sure whether this is just ageing and some arthritis. As discussed at the MPN forum it's difficult for patients to know if what they are experiencing is caused by the complaint or something else. I take the view that I can live with what I have now and don't want yet more tests and to possibly have to take more drugs. Of course it depends on how much you are suffering and if you can live with it.

A friend who has been suffering from very achy joints has just had every blood test that can be done, not cheap, by her GP to be told it's purely menopausal, she's 59, she is going to try HRT. You could go down that test route via your GP just to eliminate any other issues and to give you peace of mind. Hope this helps.

[mol56]

I think achy bones is a symptom of our MPN'S, but even after 10 years I find it is difficult to work out what are E.T. symptoms and what is just general wear and tear on our bodies due to ageing. I actually had this discussion with my consultant yesterday at my yearly check up (usually I have a telephone consultation every 2-3 months).

[Kizzy03 in reply to mol56]

Thank you for getting back I was Dancer all my life and I know about joints and muscles but I've never felt this in my bones!! Maybe also just menopause (I'm 53 now) or maybe just rheumatics!!? Too on top of the ET!!

[swess in reply to Kizzy03]

Hi Kizzy03

Menopause does have quite a list of symptoms. Do read it up... x

[Hidden]

How long have your arms and thighs been achy and stiff? It might be worth asking your doctor to check this out. It's easy to blame all symptoms on pre-existing medical conditions but it is entirely possible to have other conditions or problems.

[Polly-PV]

Hi Kizzy, I do empathise with your achy limbs-it really can be very debilitating. I am currently undergoing blood tests to try & establish the cause of the 'bone' ache in my legs & joint pain. My legs can get so bad I struggle climbing the stairs to bed at night - it's as if somebody has their hands wrapped around my bones and is wringing them out! That's about as near a description I can get!!! This coupled with fatigue means my quality of life is pretty rubbish at the minute.

My haem seems to think it's not my PV or my meds but potentially an autoimmune problem hence a million phials of blood taken on Mon this week. I'll let you know the result. All I can say is rest does it for me & staying hydrated-in the short term that is. So, is getting yourself tested for other possibilities an option for you too? Much love, Poll x

[Kizzy03 in reply to Polly-PV]

Thank you so much for your reply I'll see my new doctor next week and see how i get on. I do miss the other GP i had!! She was so good and phoned me all the time and was a great communicator making me feel I wasn't wasting her time!! You se up until recently I was never at a doctor and don't really know who my G P was!!? Someone told me I could move practice with et for continuity of care because I have something rare!! But I'm not sure ? Thank you again for you help. Love Kiz x

[Irishmod]

I have ET + CALR positive and have the same complaint aches/painful muscles and joints told my consultant in September and did load of additional tests and repeated them again last week but all bloods ok including the platelets I asked if he thought it was the Hydrea he does not think so but to eliminate this I have stopped taking the Hydrea 2000ml per day for this week and go back to see him on Monday for another blood test and maybe change to another meditation and see if it improves (I think I'm a bit better but now starting to feel a bit of a fool and think its all in my head) I will see how Monday goes and if I start a new drug. will let you know if things improve if I start a new drug

[Kizzy03 in reply to Irishmod]

Thank you for your reply. I'm not sure what CALR is and others have things like JAKS 2 positive. I've got ET but have only got a small pamphlet for info since being diagnosed a few weeks ago!! Only been told to take Aspirin and go back in another 3 months!! So I've phoned the GP surgery to go and find more info going next week.i have to say I've found out more on here thanks to you guys.

[Polly-PV in reply to Kizzy03]

This is the place to come Kizz, if you need info, have a question or just need a bit of a rant! There's always love & support here amongst our very special community. Because we are just that....very special!! Stay well, much love Poll x

[Kizzy03 in reply to Polly-PV]

Thanks Polly you always say the right thing at the right time!! I feel more support on here than anything. I think because I look ok my partner and others think everything is fine !! I'm just taking an Asprin and all is well!! It's good to know there are others who understand. Kiz X

[Polly-PV in reply to Irishmod]

I'd be really interested to know the alternative he suggests Irishmod and your subsequent experience of the new drug whatever it is. All I know is I didn't ache like this before Hydroxy nor was so tired!! Much love Poll x

[swess in reply to Irishmod]

Hi Irishmod

I am also calr+, diagnosed at the age of 45, female. How old were u when discovered calr+? You mentioned started new drug, how is it now? xx swess

[Irishmod in reply to swess]

Hi.

I was 51 when diagnosed with ET then about 2 years ago they confirmed i was calr+ (not know about 4 years ago) I started on Agrilide (cant spell it correctly) in January instead of Hydrea and now after 7 months finally feeling the benefits platelets now 250 first time in years to be in the normal range I had a lot of aches and pains especially in my joints when taking the hydrea and this has disappeared I'm really glad to have got rid of this. When I started the new drug I had a few side effects got a bad skin rash which disappeared after 3 months had and still have but not as severe a fast heart beat initially was very difficult to not feel it was scary but this has improved but if you do a lot of exercise your heart will be racing and you can hear it at night when trying to get to sleep again this is improving. My ankles swell up every day but I think this is finally starting to improve as well. I'm glad I have stuck with the new tablets as I'm finally beginning to feel the benefits to be honest I considered stopping them but my husband kept telling me to give them time another side effect was really bad headaches and again this has got better so finally getting the benefits and the pains and aches are all gone caused by the Hydrea.

Down side the new tablets are expensive I have to pay 144 euro a month for them (do not qualify for free drugs in Ireland)

Hope this reply helps if you have any further questions please just ask

[swess in reply to Irishmod]

Hi Irishmod

Thanks for your reply. Glad to hear that you are coping well with the medication. Yes I suppose good medicine does not come cheap..

Looks like u r benefiting from Hydrea. How often do you take? Daily? Best wishes to your health.. x swess

[Irishmod in reply to swess]

Hi, I take Anagrelide tablets I take 4 tablets every day its a high does was taking 5 a day but reduced the last time I was at the hospital.

The hydrea did not agree with me it caused pains and aches in my joints hence the change to Anagrelide.

When I was on the Hydrea I was taking 2000mg a day (4 tablets a day)

[Inca]

Poll ,I agree with you,I ache so much recently,I actually become tearful with frustration.Been fit all my life until P V and Hydrea arrived,Drs and consultants really cannot say if it is Meds or maladie! I am struggling with hiking sticks to walk my dogs !!!Feel like 90 yr old,thank goodness for this site to connect with others similar,I don't look ill of course....that is another matter.Keep as well as poss .have a peacefulXmas.xxSally

[mol56]

I find I am more tired if my platelets are high or if my other blood cells are low.

I would rather carry on taking Hydroxycarbamide (now for 10 years) than risk a stroke /major blood clot.

I was experiencing extreme fatigue which was the reason I went to my G.P. in the first place and was then diagnose with E.T.

I do feel better for taking Hydroxycarbamide. I think I must one of the lucky ones as I seem to tolerate it quite well. I asked my consultant how long I would be able to take this drug and she was very positive, she has had patients who have been on this drug for 20 - 30 years.

[Irishmod]

Went back to the consultant today after a week off the Hydrea my bloods were still good but I felt a week was too short to say I felt a difference to the muscle/joint aches and pains he decided to keep me off the Hydrea for another 3 weeks so go back on 11th January to see how I'm getting on and repeat the blood tests and then decide on the next course of action. I will keep you update

Happy Christmas to everyone and a healthy New Year

[Kizzy03 in reply to Irishmod]

I'm glad to hear your bloods were good. Hopefully you will feel the difference by January. I'm not familiar with all the drugs as I'm only on Aspirin!! I'm sure I'll soon learn!! Have a lovely Christmas to you all. Kiz x

[Hidden]

Hi Kiz, hey I look great too, but yeah I have ET! diagnosed by a random blood test. No symptoms of ET at all. I am on aspirin 100mg too, I feel great and no one would ever know what was going on! I have CALR gene mutation, JAX2 negative. I haven't noticed any feelings of stiffness in my arms or thighs. I have been told blood clots are the main concern with this disease. Hence to many platelets! Aspirin prevents these platelets sticking together. Happy New year to you Lyn

[Kizzy03 in reply to Hidden]

Thank you Lyn I'm sure I'll find out more as I go along but lovely to have everyone on here . Kiz

[Hidden]

I personally don't have any symptoms of ET that I know off. My GP told me if I  did it would be a blood clot, and that would be serious. Hopefully the aspirin will keep them away!! Lyn