been on copaxone for over 2 months and im already thinkin about tysabri.
I know i qualify, ive had enough relapses.
Hypothetically: the only thing that bothers me is the infusion schedule.
Can you get this done after working hours? I need to go to my work, i need ham
Raymond,
This would be another case for ticking “YES” on the employment form, and disclosing to the advisor that you have MS. As I understand it, Tysabri is only once a month. The only reason I can see for work NOT letting you have one day a month at hospital, as part of your “reasonable adjustments” (even if you have to make some or all of the time up) is if you haven’t told them!
But anyway, I think you may be counting chickens here. Unless you’ve already been offered it, I’m not so sure that you’d automatically qualify for Tysabri. Two months is a bit early to know how well the Copaxone is working, and even if it wasn’t, they may well want you to try one of the interferons first (if you haven’t already), before heading straight for the “big guns” of Tysabri.
Tina
i sent the form away today, ticked yes, they’ll know everything now. I dont like it one bit but it had to be done.
i know its not been that long for the copaxone, however, i am concerned that i am not getting any better, im not getting a break from the stresses of the disease.
Symptoms are there, all day, everyday, since last relapse, which occured during the copaxone treatment.
Since the first episode in dec 2011 i have counted 4 relapses. Last MRI was last year, cant remember when.Had no “active lesions”
Im still goin to ask the neuro when i see her. My main responsibility these days is to make sure that i minimalise the damage being done - whatever the cost
Do you know about late night appointments for infusion? Like after 5?
thanks for your response tina
Hi again Raymond,
I’m not on Tysabri, or any of the DMDs, but even if you get the go-ahead for it, I don’t think your chances are great of an evening appointment on demand.
I’ve noticed lately - only from these forums - that a few people have had MRI appointments on the NHS, at rather unexpected times - e.g. evenings or weekends. I suppose it’s good that they’re making fuller use of the scanners! But so far, I don’t think I’ve ever heard of anyone being offered an out-of-hours appointment for Tysabri.
Maybe someone who’s on it will post to say different?
But I honestly don’t think it should be a problem, if you’ve decided to come clean with work anyway (Well done!) I’m not saying they will definitely give it ALL to you as leave, and I don’t believe the law says they have to, but, I’m sure they’ll find some way of working round it, if it does happen that you need a monthly hospital appointment. They’re concerned enough to employ a disability/occupational health advisor, anyway, so they can’t be all bad!
Tina
x
Hi Raymond I was on copaxone for one month when I had another bad relapse. Even though it was only a month on treatment my neuro thought it was necessary to go straight on Tysabri to try to prevent more damage like yourself. I have been on Tysabri since dec 12 and so far so good, fingers crossed. Obviously it’s your choice but I know it’s not nice having relapse after relapse and feeling like you have no “time off” so to speak. As for evening appts at my hospital the time frames are generally between around half 8 am to around 3 pm, not sure if every area is the same? Good luck with whatever you decide x
al just have to speak to them and see what they can do, thats if they decide im eligible for something else.
Its so hard to get a job in my line of work these days and thats without the MS in the equation.
Managed to land myself a pretty decent job so my priorities will be to that first.
I cant afford to be takin days off here and there when theres such a large amount of people who would bite your hand off for a job right now
Raymond,
I’m sorry to sound harsh, but your health has to be your priority now. You can’t just carry on as if MS didn’t exist, and reject treatment if it means having to take time off work.
That’s what the anti-discrimination laws are for - so you can’t be sacked for needing to visit the hospital when you’re seriously ill!
True, the law does not mean you can be off sick “forever”, and still expect to have your job held open for you. But you CAN expect to be allowed reasonable time for medical appointments.
I still think it’s a bridge to be crossed when you come to it, as Tysabri may not be on the cards for you yet. But to insist you could only have it if you wouldn’t need a day off work is going to restrict your options quite severely. Especially if work might be fine about it!
Tina
I know theres nothin i can do about it. I feel that its unfair tho. I disagree with the whole criteria thing, i think MS patients should be able to choose their DMD. There is enough information out there for people to make an educated decision.
I also feel like ive given up enough and dealt with a lot of shit so far, ive lost a lot of ground and i dont want to lose anymore.
I want more things done on my terms.
Hi Raymond,
I’ve been on Tysabri since May 2012 and the appointments are scheduled exactly every 4 weeks and at the start of treatment our group was given an appointments list for the next 2 years so we all know exactly when we need to be at hospital. At our hospital (Kingston) the infusions cannot be given by an ‘ordinary’ nurse because the drug has strict controls so a specialist nurse employed by the drug company (Biogen) comes to the hospital to do them, this is obviously during the day and I can’t imagine that they could/would be able to accomodate evening appointments for this reason. At our infusion session on Monday we were informed that Tysabri has now been approved as a first line treatment so in theory you do not have to try any of the conventional DMDs first, and if your Neuro thinks you need Tysabri they can now put you straight on it. Please make your health your priority and don’t be afraid to let your employer know this, now you have informed them of your MS they have to allow you the time off for your hospital appointments, you also have the protection of the DDA and they will be aware of that. Good luck with your treatment. xxx
thanks for your post. You are right, health should always come first.
I am stressed out the now and i dont feel that i live in a world that allows health to come first.
I feel strongly that i live in a world where money comes first and in some cases is directly proportional to wealth.
I am focusing on the bad at the moment and i know i have to break this cycle