I wish to start this post apologising if what I am about to say upsets anyone. I have been having monthly infusions of Tysabri which is apparently the most effective drug for addressing the inflammatory side of MS. Apart from brain scans, and showing no significant new lesions, the treatment appears to be doing its stuff. The day I have the treatment and for three days after, I sleep, am listless, no appetite, no interest in anything…completely zobbed. I am not sure why it does this to me. Some of you that have the treatment may have no significant issues after having it. What the treatment does is suppress the immune system for it to protect the meilin sheath. Now, what I personally have had after the treatment, each month is either a urinary or respitory infection. In two years I have had pneumonia three times, and twelve UTI. I have been hospitalised nine times! I checked my diary and it added up to almost five months of infections. So. Someone help me out here. If I stop the treatment, I do not leave myself open to infections and therefore can get on and plan my time. However, if I Do stop, at what rate will the disease create more physical problems? I am, at the time of writing this, already set on stopping the treatment. Tell me I am wrong, if you can help me justify staying on it. I am sick of being sick all the time. Whoever responds, be fair. None of us find it an easy thing to talk about. Somebody…please…Tom Gascoigne (Gaz)
Hi Gaz,
Sorry to hear you’ve been having such a rough time.
I didn’t think they gave tysabri for PPMS but regardless, nobody can even hazard a guess at how quick disability messes with you, that’s why they call it a snowflake disease, we all have our own version!
I took tecfidera for a year after chasing it and I don’t think it made any difference to me as my mobility continued to worsen even when I was taking the tec.
Good luck with what you decide to do
Sonia x
Hi Gaz.
Can’t really answer your query directly but will share my thoughts. I was on Tec even though I’m now dxd as PPMS. At first dxd with RRMS almost two years ago, but my swift progression made me and Neuro agree otherwise.
Last week we both again agreed, as I still had mobility deterioration, it was time to come off Tec for a while. See what happens, have another mri in three months and see her again. Then she said maybe Gilenya would be an option to try. So, even though there isn’t meant to be anything for ppms, she (and I) are of the opinion, “we don’t know that it isn’t helping”. Would I be much worse if I hadn’t been on a drug? I will take whatever’s on offer for a chance. However, I haven’t had the other health issues you’ve had. I’m not sure what I’d do. Hope you can come to a decision that you’re happy enough with. Good luck.
Hello Gaz.
I don’t know anything about tysabri. I don’t have any sort of modifying drugs. But as you know we’re all different so if you feel the need to come off it, it’s probably worth trying. I’m a long way down the PPMS road and it’s been a case of adapting. Apart from the obvious symptoms life isn’t too bad. I can still enjoy myself and get out and about via wheelchair and scooter. We don’t know what the future holds but I intend to make the best of it.
Best wishes, Steve
Hi Gaz
Sorry I have no wise words for you, but I wish you all the very best whatever your decision is.
PAM x
Gaz my body reacts adversely to new medication and I have just stopped yet another drug diagnosed to make my life more bearable but in fact making my life awful. The different drugs I have tried seems endless. My body melts down and my quality of life is compromised so I quit happier with the status quo rather than what appears to be an elusive dream.
Good luck with your decision
Don
Hi everyone. Thank you one and all for your comments. It shows that we all speak the same language on this devastating topic. Apart from my wife, you are all the first I am telling that I am stopping the treatment. It’s my birthday tomorrow, so I shall not be focusing on this whilst out celebrating. But the day after, I will contact all the necessary people to inform them I am opting out. Then, only time will tell what happens to this diseased body I have the misfortune to inhabit. I shall keep you posted of anything that’s really worthy to comment on as things materialise. Regards to one and all…time to play the blues. Gaz
Happy birthday Gaz, I hope you’re having a lovely day
Sonia x
Happy birthday Gaz, hope today has been good for you.
Pam x
Sorry that you have had such a terrible time with Tysabri, Gaz. What did your team say when you started to get all these infections? I thought that having numerous opportunistic infections was rare but a big warning sign with Tysabri because it indicated significant problems with your White Blood Cell count?
I’ve been on Tysabri for some time now and stay on it even though I am JCV+ - but I think that if I was experiencing similar side effects I would be off pretty sharpish myself. I was at my GP the other day (about something not MS related) and we were talking about how every drug that you take should involve a reasoned cost-benefit analysis. I definitely think that is a good attitude to have.
The UTIs might not be just the tysabri… I’ve had a similar amount of UTIs in the last couple of years, no pneumonia but a kidney infection and septicemia, and I don’t have Tysabri, I think it’s just something that some of us have! However I’ve been having infections for donkeys years so I suppose if you didn’t have them pre Tysabri then it’s a different matter?
Hope you had a good birthday, let us all know how you get on, take care,
Nina x
Just to make it clear, the “cost” my GP was talking about wasn’t cash it was the possible downsides of any drug (ie it’s chances of working and the likelihood of any detrimental side effects) which have to be weighed up against its benefits to you. A treatment for a minor niggle isn’t worth a high risk of significant disability whereas a person but a person facing a more serious outcome without treatment might be prepared to take that risk for the likely outcome of a dangerous treatment.
Once again, thank you for your continued input on this subject, I really value the points that are made and the time you have spent responding. In response to Nina, bless you, I have never been ill prior to the MS. As of yesterday, now 61 years old, I never lost a day off work for any illness, just the occasional surgery. It must be a secondary cause of having the treatment;all of my logic tells me this. Second thing, my birthday. Not such a happy one I’m afraid, would you believe it that I had an allergic reaction to an antibiotic causing rash and lumps head to toes. What’s going on, what’s happening to me? If I had a script writer, I would sack him. We had plans for shellfish platters on the quayside, wine, music and and… all I had was some cheese on toast and a glass of water. It’s wrong, really wrong. But, hey ho, let’s pick up and start again. One thing I can be sure of is that my days are never boring, something always happens. Peace and prosperity to you all. Gaz
[quote=“gazzamazda5”] We had plans for shellfish platters on the quayside, wine, music and and… all I had was some cheese on toast and a glass of water. It’s wrong, really wrong. But, hey ho, let’s pick up and start again. One thing I can be sure of is that my days are never boring, something always happens. Peace and prosperity to you all. Gaz
[/quote] That wouldn’t be Riley Fish Shack up in Tynemouth would it? I saw that place reviewed and I so want to go up there! So sorry your birthday didn’t turn out how you wanted but there will always be fish and cheese on toast is pretty good too if done right.
Sorry your birthday wasn’t so good Gaz. Such a pain in the rear this wretched disease! I think all my infections are MS related, I’ve had it since I was 14 and I’m 65 now! The early years weren’t too bad for me, now sadly it’s pretty S…tty!
Hope you can have a second birthday,like the queen,and enjoy your shellfish !
Take care of yourself,
Nina x