New to the site and diagnosed with PV in February 2018

[Hollyhedge]

Hi, I am a 58 year old woman whi was fairly fit and healthy and active with walking dog and previously going to the gym, I had a few TIA's that were thought to possibly be panic attacks initially (but I was calling them stroke like symptoms!) and eventually had a stroke on 10/2/18. Stroke caused by high blood pressure due to thickness of blood. Had been feeling out of control/super stressed, for quite a few months, unable to concentrate at work and feeling out of control and of having to do everything at super fast speed, day and night sweats, severe depression (felt permanently) suicidal and generally not coping at all. Also was extremely tired, had months of bloodshot eyes and problems with cattarh and worryingly issues with eating and swallowing (thought I might have MS secretly at one point). Put it all down to getting older and possibly an extended menopause. After stroke was In hospital for 6 days and recovered very well, no (seemingly) lasting effects of stroke on left side as regained mobility and fine motor skills etc during stay in hospital. JAK2 mutation found and PV diagnosed. Venusections whilst in hosp. then on 20/2/18 prescribed 50mg daily of hydroxycarbomide. I had been feeling really well , responding to the chemo, sertraline anti-depressants, on clopidogrel and statins and adapting quite well until recently when I developed numb fingers and pins and needles and this along with pain going up my arms, waking me up at night and making me exhausted. Also occassional pain in left middle toe. Went to GP, showed side effects leaflet of hydroxycarbomide re numbness etc and he wrote for advice from my haematologist. Will be returning to GP around 27th/6/18 to check on response. Has anybody else experienced this side effect?? I had none of this before taking this drug although did experience Carpal Tunnel Syndrome during my pregnancy and for a short time at the beginning of the menopause. I am sorry if this is a side-effect as had been feeling quite good and adapting to taking 4 tablets daily up until this set-back, apart from being more clumsy and occasionally being covered in bruises. Been prescribed amytriptiline to combat numbness etc up to 3 x 10mg per day - not much relief to date but early days!

[Poppy6060]

Hi Hollyhedge you have come to the right place you will get a lot of good advice and support here on this site it sounds like you have had a tough time lately I do hope you get answers I am 57 year old lady with PV I am on Pegasys and over the last couple of years have had pins and needs at times and gout is quite common in people with PV .sounds like you have a good GP do read the advice on the MPN web side it takes time to get used to having PV there’s a lot to take in and it’s a shock at first it took me a while to get used to all the changes that were happing to me has like you had always been a busy person then wham I didn’t feel well but it can get better in time I wish you well best wishes Poppy

[Hollyhedge in reply to Poppy6060]

Hi Poppy6060.

Thanks for replying. Yes this site is very good. Have scoured it over last few months (before signing up) gleaning any information I can about PV as information is power and we all need to be in charge of our own health issues. GP is great but haematologist not approachable and very defensive when I ask questions and even made me cry in first few weeks of taking Hydroxycarbamide! I got round this by telling his secretary and getting her to ask him a question and get back to me!

Not heard of Pegasys can you tell me how it is taken. Saw a post on a breast cancer website about cancer drugs causing numbness and pins and needles in an article called carpal tunnel syndrome or peripheral nuropothy where patients agree its the cancer drugs they take and it does say this on leaflet of side effects.

[RosemaryHarper]

Hi Hollyhedge

I was diagnosed with PV in Jan 2017 and was on Hydroxycarbamide until Jan this year when I went onto Ruxulitinib. I too have pins and needles and numbness in both hands so maybe it is a symptom of the PV rather than medication. I am getting used to it nowadays it is not really a problem. Glad you have joined this forum - I find it a great comfort. Take care.

[Hollyhedge in reply to RosemaryHarper]

Hi Rosemary,

Thanks for the reply. See my post to Poppy6060 above re side effects. I will keep searching and asking questions as it is driving me mad. I do not want to have permanent nerve damage. I know it is reported that PV symptoms are tingling and numbness but I have a gut feeling that it is the drug. Why did they change you to Ruxulitinib and how do you take it and how are you finding it - sorry lots of questions - as lots to discover. Nice to communicate with you, keep as well as pos.

[RosemaryHarper in reply to Hollyhedge]

I had very bad side effects on Hydroxy - mouth ulcers, feeling like I had flu and couldn't get out of bed, black toe nails, all sorts of nasties... I have had private insurance with BUPA since I was 21 but they refused me treatment under my policy. After repeatedly asking for treatment for a year, they eventually agreed and said that they had made a mistake and that I should have been funded from the start! So they are paying for Ruxolitinib and I am taking 20mg twice a day. The Hydroxy was not controlling my bloods counts but they are now starting to slowly come down and I am feeling much better - feel as though I have got my life back... (I know a lot of people respond well to Hydroxy - I was just one of the unlucky ones who had a bad reaction to it.)

I was also taking Amytriptiline but was having very strange dreams so I am on Fluoxitine for depression (I also have a blood clot in the brain and a brain tumour so a lot to deal with) and counselling really helps as well.

Do keep in touch - it sounds as though we have a lot in common (including pain in left middle toe which I need to get checked out!)

[Hollyhedge in reply to RosemaryHarper]

Hi Rosemary.

Thanks for answering all my questions. I will keep you informed of my journey. You do have a lot of challenges currently but good you now get Ruxolitinib and that you are feeling better on this - long may it last and work to control your symptoms!! I will definitely keep in touch as we are now bonding through our left middle toes!! Best wishes - lovely to communicate with you. xx

[jane13]

It is sad how poor the diagnosis of mpns is: I had a not dissimilar experience which I think may have shortened my life and I still feel angry about it. I am so sorry to hear about yr depression and hope that you are feeling more bouncy - it sounds like it - perhaps keep taking the amytriptiline as i understand one side effect is that it helps cheer u up!

[Hollyhedge]

Thank you Jane 13.

I do feel quite lucky that the original doctor I saw re TIA's had a father who had a massive stroke so she sent me to the hospital that day and it was that hospital visit that diagnosed my blood and said I had PV, unfortunately I had a stroke in the meantime and ended up in another hospital. I could have been going back and forth to doctors with all my ailments but I am sure they would not have put them all together to get the diagnosis. It was having the TIA's that was the red flag that the hospital missed initially! I still feel fortunate as it could have been worse. I am sorry to hear of your experience though - very upsetting. Yes my brother is on amytriptiline for depression and told me that - only down side is it also caused constipation!!! Back to us all drinking plenty of water and keeping hydrated. Keep as well as you can and thank you again.

[Aime]

Hi, you can see you are not alone. I’m a 60 year old female with PV, diagnosed 2012. I sometimes compare it to being on a merry go round that occasionally stops when you get a symptom relieved and then carries on again. I’m not on meds yet so can’t help you with an answer to your question but sending you a load of E hugs to remind you, you are not on your own and the lovely strangers on this forum will soon become your friends.

The MPN Voice website is worth a visit as you can trust the information on it and Maz, our editor, and her team keep a strict eye on both this forum and website to make sure we are getting good and trustworthy advice. In the meantime eat healthy (but have treats - you deserve them), drink plenty of fluids, sleep well and above all if you need an answer re your condition, insist you get it from your medics. I have become a much stronger person, who will now politely insist on an answer to a worry because then that worry can be deleted.

I’m having trouble at the moment with numbness in toe and tingling in my arm but this is down to osteoarthritis, compressed nerve and tendon inflammation I think. Keep in touch, you know you are not alone and you will always get help here.

Kindest regards Aime xx😺

[Hollyhedge in reply to Aime]

Hi Aime, thanks you for responding. Yes this and MPN voice is a very good source of support (I have scoured it!). I can see that I am definitely not on my own as lots of people sharing their experiences which is very informative and helping me to evaluate what I feel is happening to me and what could be causing my current peripheral neuropathy. I am feeling stronger so will insist, politely that I get answers to my questions. I will keep in touch and best wishes to you and yours. Keep as well as you can. xx

[lizzziep]

Hi Hollyhedge, the amitryptilene takes a while to kick in. I have ET and take it for nerve damage and tingling etc. It starts to work after a couple of weeks or so. Hope you're feeling better soon.

Lizzie x

[Hollyhedge in reply to lizzziep]

Hi Lizziep, thanks for that inf. doc told me to take as and when needed so expected it to work when I needed it!

Cat xx

[JackLina]

Taking clopidogrel for a number of years and for 4 weeks took hydroxycarbamide. Became gradually more disabled as a result. Pains in joints as well as breathlessness, severe depression and feeling suicidal. Pins and needles and numbness to right hand and fingers go white or blue, or both regularly. Alway have the pins and needles. Lost the use of my hands by week four and still have severe pain in my thumbs and at the base of them. Cannot use them properly a lot of the time, even now, weeks later it is very gradually becoming slightly easier. Very severe nerve pain. Still have the pins and needles and numbness however. Hope this helps.

Starting Pegasys tomorrow. Wish me luck!!!

[Hollyhedge in reply to JackLina]

Hi PenelopeMK,

Thank you sooooo much for this, I have a gut feeling its hydrocycarbomide and will pursue this vigarously to get the right medication for me. Best wishes with Pegasys xx - keep me updated with your progress x

Did NHS prescribe this for you and how is it to be taken?

[JackLina in reply to Hollyhedge]

I had to really fight for it. Took my husband in the end. Got fed up of being told that it couldn't be the hydroxy and must be something else. It was the inability to walk for more than 15 minutes instead of an hour + and the really strong suicidal feelings.

Even when I had researched the benefits of Pegasys for my specific situation, he still spoke to me as though I was a half-wit. He actually siad, 'I have hundreds of patients on hydroxy with no problem. I'm not going to get you back on it though am I?' To him I'm just a statistic rather than an individual who cannot tolerate many, many drugs.

I couldn't manage statins or aspirin.... Good luck to you. let me know how it goes for you. Incidentally, I am ET and JAK2 and had many TIAs and one minor stroke, so high risk according to them...but not me!

[Hollyhedge]

Thank you again - I feel a lot stronger emotionally atm so I am ready for a fight.

Its a case of he who shouts the loudest with the NHS I think.

Like you I had a few TIAs and a minor stroke but have recovered well from these. Don't worry if you don't hear from me as might be going to my caravan for around 10 days x

[JackLina]

Enjoy.

Speak again soon.

I'm away from July 26th. so it may a little longer.

Stay determined! It's not always you and most likely it's usually THEM!

[Hollyhedge]

I will try.

Spk soon.

Enjoy also.

I will and very true, its definately THEM!!

Bedt wishes, over and out x