I had urticaria after my 3rd Ty infusion and now cant have it again.
I'm devastated as ive had ms for 20 years and Ty was already working. Not only did I have no relapses (usually 4/5 a year), the crawling sensation in my hands and feet disappeared. I feel so lame complaining about it as people suffer much worse but to me. it was the first time i had felt "normal" in 20 years.
Now ive lost the sight in my left eye again - incredible pain in the socket and i just feel so low, even cursed as apparently only 1 in 100 is allergic.
Im also allergic to inteferon and copaxone does nothing to help.
NICE in the UK are still deciding if to pay for it and I dont mind admitting that I feel absolutely desparate. They wont even give me LDN as the UK have decided that it only helps thru anecdotal evidence - ie the scans keep getting worse.
After 20 years dealing with this monster I feel completely vulnerable and terrified.
Ive read in the US the you can still keep taking Ty with Benadryl before if you get hives. I has no breathing prolems or swollen lips but im still kicked off the drug.
They are putting me on Avonex despite my previous allergy and hoping that if Gilenya is approved I will fit the Criteria.
I wouldnt mind so much but I've worked and still work paying my NHS taxes.
Doesnt mean a thing in the UK. If you get pregnant at 14, you get lots of benefit money, a house and any meds you need.
If you work all your life and have a vile disease like MS it counts for nothing. You're at the mercy of the National Institution for Clinical Excellence and their whims.
At least in the US if you pay for you're healthcare as I do you can claim and get the right meds for you.
The UK NHS is seriousy messed up in my opinion.
I'm so sick of this rollercoaster. I waited 6 month for NICE to put me on Tysabri and then to be allergis with no other option it just feels like its all for nothing.
Sorry to vent but I'm in a very sad place right now and dont know where I can find the strength to pick myself up yet again. How many disappointments over 20 years can you deal with? My lovely husband and my kids are the only reason to keep fighting
I'm devastated as ive had ms for 20 years and Ty was already working. Not only did I have no relapses (usually 4/5 a year), the crawling sensation in my hands and feet disappeared. I feel so lame complaining about it as people suffer much worse but to me. it was the first time i had felt "normal" in 20 years.
Now ive lost the sight in my left eye again - incredible pain in the socket and i just feel so low, even cursed as apparently only 1 in 100 is allergic.
Im also allergic to inteferon and copaxone does nothing to help.
NICE in the UK are still deciding if to pay for it and I dont mind admitting that I feel absolutely desparate. They wont even give me LDN as the UK have decided that it only helps thru anecdotal evidence - ie the scans keep getting worse.
After 20 years dealing with this monster I feel completely vulnerable and terrified.
Ive read in the US the you can still keep taking Ty with Benadryl before if you get hives. I has no breathing prolems or swollen lips but im still kicked off the drug.
They are putting me on Avonex despite my previous allergy and hoping that if Gilenya is approved I will fit the Criteria.
I wouldnt mind so much but I've worked and still work paying my NHS taxes.
Doesnt mean a thing in the UK. If you get pregnant at 14, you get lots of benefit money, a house and any meds you need.
If you work all your life and have a vile disease like MS it counts for nothing. You're at the mercy of the National Institution for Clinical Excellence and their whims.
At least in the US if you pay for you're healthcare as I do you can claim and get the right meds for you.
The UK NHS is seriousy messed up in my opinion.
I'm so sick of this rollercoaster. I waited 6 month for NICE to put me on Tysabri and then to be allergis with no other option it just feels like its all for nothing.
Sorry to vent but I'm in a very sad place right now and dont know where I can find the strength to pick myself up yet again. How many disappointments over 20 years can you deal with? My lovely husband and my kids are the only reason to keep fighting
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