Tysabri Denial?!? Being bullied into Lemtrada!

[hayleymarie]

[QUOTE=Kimba22;1493804]Hi hayleymarie,

Welcome to MSWorld. Sorry to hear of your diagnosis and being told you don't meet the criteria for Tysabri. I live in the US, but hope this information will be helpful. To start with, I'd ask him for clarification of what is considered a relapse.

Thank you for your very informative reply. I am using all the info i can for my appt tomorrow but i am really hoping once he sees me and has my records to hand. I wont have to battle it, i fear i dont have the energy!

I have dug out the Lemtrada booklet he sent me and a lot of things arent in there that people are now aware of. for exmaple, the need for annual smear tests because of the HPV risk. No note of that in the book, people are struggling to get these tests annually on the nhs so even though they are at risk they cant get the checks?

I dont know if drugs and doctor business is comission based here or something? Nobody seems to of advised its illegal or anything here i have mentioned it to? I just feel like they want me to have the cheapest treatment and kick me out of the door. I dont want to agree to the strongest treatment when i am only 6 weeks into my diagnosis. Yes its bad enough for me to require treatment (my vision is gone again in my right eye but i did run a 10K yesterday) but i dont want a treatment that has been described as 'cure me or kill me' by the head of neurolgy at my hospital.

I have made lists of things i want to discuss and the definition of disabling, what if i was a kept woman and didnt work? would none of my relapses be disabling because i dont work? He really got my back up with that but i dont want to go in with a bad attitude towards him if he is going to be responsible for my care for the forseeable future.

The critera he gave me as reason i couldnt get Tysabri seems out of date and not accurate so will see what he comes back with with that. Im assuming i dont have to decide when i see him tomorrow and will be able to have a think and of course ask yourselves on here.

[hayleymarie]

for Kimba22

Hi hayleymarie,

Welcome to MSWorld. Sorry to hear of your diagnosis and being told you don't meet the criteria for Tysabri. I live in the US, but hope this information will be helpful. To start with, I'd ask him for clarification of what is considered a relapse.

I did a huge reply this morning and its vanished! Bugger!!

Thank you for your thorough and informative reply Kimba! Much appreciated!

I have printed and screen shot and jotted everything i can find that show cracks in what he is telling me. Definition of disabling, what classes as a relapse etc. For example. What if i was a wealthy kept woman who didnt need to work? I wouldn't have a work to be too disabled to go to would i?

As for the naughty money issue, its funding re the NHS, but i have been told that there isnt a cap for MS paitents and they can prescribe whatever they want, so i dont understand the hurdles im facing. I'll make a point of bringing that up tomorrow. The head neuro said i could have Tysabri and im wondering if this guy says no tomorrow, if i can just request to see the original one and get it via him. I will 100% ask for a second opinion.

In a few years Lemtrada might be a better options but its too much too soon. I need some help but not ready to take on a medicine described by a neuro of 35 years as 'cure me or kill me'
I just cant get those words out of my head. Im an active 31 year old mum, i ran a 10K yesterday and i am not being locked away with no imune system for months on end. I want a treatment that i can still have a life and a career alongside and nobody is taking that from me without a fight.

I have recently seen that women are struggling to get the advisory annual smear tests too via our NHS which disgusts me! its not even in the paitent leaflet they sent me, the risk of HPV, the herpes train and cervical cancer just wasnt important enough to make the leaflet.

Pretty wound up and raring to go for tomorrow, but then ill probably wimp out and end up hooked on Lemtrada in a week!

[lindaincolorado]

NO wimping out Hayleymarie

Go into your appt with a good, positive attitude. Speak your truth and hopefully you won't need to ask for the head neuro . If you do need him go for it !!

We who have been following you, standing with you are HERE pulling for you.

You go girl

Best wishes and good luck !

[Kimba22]

Your very welcome, haleymarie. (Really bugs me if this guy isn't being honest with you! ) Your biggest hurdle seems to be if this guy agrees you've had 2 or more relapses. Period. Certainly sounds like it to me. That's one of the criteria for the NHS. If he doesn't agree, then find another neuro!!!

Agree 100% with everything lindaincolorado said - so please stay strong and don't wimp out. This is YOUR body, not his! Sounds like you've been doing your research (huge red flag if that bothers him) so please don't let him intimidate you if he's still not in agreement Tysabri is an option! He might still try to convince you Lemtrada is a better option for you, but that's entirely different than saying you don't qualify because you haven't had two disabling relapses.

Good luck!

[hayleymarie]

Result!!! Kimba & Linda & CO!

[QUOTE=Kimba22;1493829]Your very welcome, haleymarie. (Really bugs me if this guy isn't being honest with you! ) Your biggest hurdle seems to be if this guy agrees you've had 2 or more relapses. Period. Certainly sounds like it to me. That's one of the criteria for the NHS. If he doesn't agree, then find another neuro!!!

Just got back! he was lovely!! he APPOLOGISED for ringing me and catching me off guard and asking my history without seeing my results so we wiped the slate clean and started from scratch. He agreed Lemtrada is very potent and scary and not for me just yet.
So Tysabri for me and i start in 4-5 weeks!

Thank you so much for getting me through it!

[ru4cats]

Congratulations! Woo hoo! The most important thing I've learned since entering the realm of MS is you must be your own self-advocate! It is a scary diagnosis, but I'm glad you fought for what you believe is in your best interest. This forum has lots of people to help, and I'm glad everyone was there for you. I sincerely hope you have the success with Tysabri that so many others have had. I am stable, and at my age, that's about all I could ask for.

[lindaincolorado]

YAY!!!
Hayleymarie, I am so happy for you
I hope Tysabri is a great med for you!

[palmtree]

What a struggle! The result: VICTORY!!!

I am breathing a sigh of relief for you because it means you can stop this thing in its tracks and continue working.

When I was diagnosed, Tysabri was not a first line treatment. We had to prove the interferons weren't effective. I would have chosen it in a second but had to get a very extreme flair to be accepted. A flair that could have been avoided.

In the meantime, however the vote on Brexit goes, I hope it is in your favor.

[hayleymarie]

FAO Linda & Kimba x

YAY!!!
Hayleymarie, I am so happy for you
I hope Tysabri is a great med for you!

My chap has just called with a start date!!

3 weeks today!!!

So pleased! Although - my bloods proved that 3 months on iron tablets arent working so i have to go and see him. Anyone know what they will do if i cant seem to take on Iron tablets?

[lindaincolorado]

Hi Hayleymarie,
Do you eat red meat ? I think you get iron from meat ?? I only eat grass fed beef - I love animals, tried being a vegetarian (I'm not ) so I do not eat much meat and my iron level has dropped. I'm going to try to eat more meat and see if my iron level improves ??

AAANND... 3 weeks till Tysabri. I'm thinking really good thoughts for you

[Kimba22]

Just got back! he was lovely!! he APPOLOGISED for ringing me and catching me off guard and asking my history without seeing my results so we wiped the slate clean and started from scratch. He agreed Lemtrada is very potent and scary and not for me just yet.
So Tysabri for me and i start in 4-5 weeks!

Thank you so much for getting me through it!

Yay!!! Glad your appointment went well after all! Had hoped it was just a misunderstanding on his part, so glad he apologized, too!

My chap has just called with a start date!!

3 weeks today!!!

So pleased! Although - my bloods proved that 3 months on iron tablets arent working so i have to go and see him. Anyone know what they will do if i cant seem to take on Iron tablets?

You can try adding vitamin C. Vitamin C binds to iron, which allows better absorption of iron in the large intestine. It's important to remember the two must taken together to get any benefit from the vitamin C. If you can't raise your iron levels orally, then iron shots or infusions can be prescribed.

Don't know how common it is, but Tysabri dropped my iron levels. Finally got them back up into an acceptable range after I added vitamin C (I take 500 mg) to my 2 daily doses of iron.

Good luck with your iron levels and Tysabri!