Been taking Exjade to my detriment

[skodaguy]

Chose to try Exjade after being told I had large iron levels due to transfusions. Was offered a choice of wait and see, think about it or just start. I am taking a trial drug MANIFEST-CPI0601 as well as rux so decided to give it a go.

My mistake. This drug crashed my platelets from around 70 to 11 with obvious bleeding issues. I also got hyponatraemia which crashed to 125 ( normal 135) with all the problems that causes. That is loss of appetite fatigue ..

muscle spasms and mental impairment etc. I have had to attend my local hospital more often than I want and for the past week have not felt confident to drive. I have lost around 10lbs due to not eating but with fluid deprivation have recovered and today have been both ravenous and able to put scalloped potatos in my slow cooker enough for 4 meals.

Just an advisory that Exjade is a potentially toxic drug and maybe don't take it unless totally necessary.

Have now recovered and hope to do the Tissington Trail with a friend who is an ex-marine on Tues.

I have no axe to grind against my consultant as he was open with me though did not detail the risks.

[beetle]

I presume you have stopped the exjade or have you just reduced the dose? Desferioxamine also tanked my platelets so I can only use it twice a week instead of the recommended five times. My ferritin now seems pretty stable in the the 4-5k region which is better than the original 11k+. I can’t see it ever coming back down under 150 which is supposed to be normal!

I applaud you for entering drug trials. Do you mind if I ask where you are located in relation to the trial? I’m down in the South West and most of the trials are in the London/Oxford region which would involve a vast amount of travelling for me and that would be very challenging with my current level of fatigue. So far Prof Harrison (I see her once a year) has not felt that any trial so far has been worth me travelling so much. At the moment my blood results are relatively stable even if ‘Low’ appears after almost all of them. My liver function has improved after stopping a statin so I’m willing to accept stable at the moment.

Good luck with the Tissington trial

Best wishes, Jan

[beetle]

I’ve got trials on the brain! That should say Tissington trail!

[skodaguy in reply to beetle]

I live in north Derbyshire and go to Christie's in Manchester for trial consultations. Used to go by train but now have a lovely drive across the Peak District.

[Mazcd Partner MPNVoice]

Hi Skodaguy, glad to hear that you feel better, what an awful experience for you, enjoy the Tissington Trail, best wishes, Maz

[skodaguy]

I recently posted re my adverse effects with exjade. Like I said this was my decision and my consultant is blameless. He didn't know it could cause hyponatraemia as well as thrombocytopaenia. I am happy to say I have recovered from both though my platelets are low at 29. Looking forward to a bike trip tomorrow, maybe not advisable but I refuse to live in an cotton wool blanket. Might be rainy but skin is waterproof and I have the gear to wrap up. I love the outdoors and always have. Even at Uni I would go walking in winter and tuck a bottle of beer into a snowbank for lunch taking the top off on a convenient bit of dry wall.

Reckless maybe but what is the point of life if you don't live it.

Best day I ever had was a winters day on Kinder Scout with around 20 foot of snow. My mate Martyn and myself kept disappearing into the clints between grikes, the peat outcrops. We rarely saw each other just heard each other laughing when we sank into the snow but we made the summit eventually. The day memories are made of.

On a good note I lost 10lbs on the Exjade diet, not a bad thing but perhaps not to be recommended.

The message I want to send is never give up and try to live life on your own terms no matter how ill you may feel. If you want a steak or a bottle of wine or whisky, well if you are reading this you already know you have a fatal illness if not yet terminal so do what you want and don't feel guilty about it. Its your life despite you being married etc. Be responsible in looking after those you will leave behind but above all be yourself.

If you feel you can never again go abroad then ask yourselves, how much of this country have you seen. Do you know North Yorkshire and especially Whitby with the Magpie cafe and Fortunes smokery. Have you been to Cumbria and visited the Brittannia inn or the Drunken Duck or the Wasdale Head Inn? Have you been to Devon/Cornwall or less likely the Norfolk Suffolk region. I haven't mentioned Wales or Scotland which have exquisite areas to explore.

This country has remarkable places to visit. I haven't mentioned York ,London Edinburgh or the fenlands such as Cambridge or Ely cathedral. If you haven't explored your own country why do you need to go abroad with all the complications of insurance and a foreign health care system.

I have recieved great service from the NHS in the past few months but I remain an advocate of British tourism that is neglected by so many in a rush for cultureless sunshine beaches and abundant cheap cocktails.

Skodaguy

PS Did bike trip today but got there and couldn't get the electrics to work on my bike so to have a slow ride the old fashioned way. Still did 16 miles just not the 24 I had hoped for