It appears that your MSWorld session has not been initiated or has expired. To renew your session, please click here, then click 'Logout' on the right hand side and log back in again.

Go Back   MSWorld Forums > MSWorld Message Boards > Medications & Treatments > Tysabri
Register FAQ Calendar Guidelines Mark Forums Read Login

Tysabri For discussion regarding Tysabri.

Reply
 
Thread Tools Display Modes
  #1  
Old 02-20-2011, 01:43 PM
okhoney okhoney is offline
Registered Member
 

Join Date: Dec 2009
Location: oklahoma
Posts: 32
Seems like my immune system doesn't work - any advice?

I'm going in Tues for a one year on Ty MRI.

I am thankful that Ty has essentially eliminated my MS symptoms but I have hit the wall in regards to the constant fever and repeated infections of the last 6 months. I am worn down and not the happy person I usually am.

I will be asking my Neuro if there is anything that we can do to get my system to 're-boot'. When I went in Dec he didn't seem to pay much attention to my repeated infections. My plan is to be much more assertive this time and make sure that I have his full attention.

I have done all the CRABs and only changed to Ty with reluctance. The newer drugs feel like they need a little more time before I consider them and all seem to have that same 'more prone to infection' side effect.

So do you guys have any suggestions (besides the anti-depressant that I'm going to ask for for the first time ever) as to what to do next?

I always appreciate the wealth of knowledge and support you guys provide!
Reply With Quote
  #2  
Old 02-20-2011, 05:19 PM
Redwings Redwings is offline
.
 

Join Date: Mar 2009
Location: California, USA
Posts: 2,449
The old adage applies to a lot of things: you can't eat your cake and have it, too. You can't suppress the immune system and still have it fully functioning, too. You can't be on Tysabri and reboot your immune system, too. You can't have it both ways.

The state of medical technology is such that tinkering with the immune system (immunomodulation) only works so well. And apparently modulation didn't work well enough to control your MS progression. After that, the choice is suppression (to some degree), with the inherent risk of infection. The higher the payback, the riskier the investment.

Everything is a trade-off, and sometimes none of the choices are good. For you, the choice has been MS symptoms or infections. You can stay on Tysabri and continually treat infections, you can switch to Gilenya and see if your infection rate is better, you can go back on one of the CRABs or even LDN, or you can stop the immune meds and let your system go back to where it wants to be, accepting whatever it does. Only you can choose which is the least of the evils [I]for you[/I]. And you have to make that choice [I]before[/I] you have something to be assertive with your doctor [I]about[/I].

Antidepressants can be very helpful, but sometimes they aren't enough. Antidepressants can help with mood, but they can't teach someone coping strategies or how to deal with unproductive thinking or behaviors. So you might also consider asking for a referral to a mental health professional, who [I]can[/I] help you with those things.
Reply With Quote
  #3  
Old 02-22-2011, 10:37 AM
LL60 LL60 is offline
Registered Member
 

Join Date: Jun 2009
Location: US
Posts: 568
okhoney -

I don't know what I can offer as way of advice. How about a hug? And lots of love.

When you have an infection you just don't have the energy to fight. At a time when sometimes you have to. I think writing down just what you want to talk to your doctor about is always a good idea. And ask him if your many recent infections concern him, and if not why not. Maybe the answer you got was right - you just have to do certain trade offs. I think it is your right to be assertive with your doctor. There is a huge difference between being assertive and demanding. Assiertive ways mean your needs are getting met. You are paying him after all to take care of you.

Talk therapy can work. I went almost 5 years before I would even talk about my MS. The last year when I finally opened up was so helpful. I no longer go and am no longer on meds. Tysabri is the only thing I am on. A big enough gun I feel. But I would suggest trying to find a good therapist before you go on meds. They all have their side effects too.

Good luck. Hope the infections stay away.
Reply With Quote
  #4  
Old 02-28-2011, 01:52 PM
dcancellarich dcancellarich is offline
Registered Member
 

Join Date: Feb 2011
Posts: 34
I feel like I have been fighting with one cold after another. I get about 2 weeks free and then another 2 weeks sicks. I have also had about 6 UTI's in the last 8 months. I am going to see my neuro on Wed, I guess I will see what he says. I am basically on Tysabri bc there are no side effects, maybe I should rethink that.
Reply With Quote
  #5  
Old 02-28-2011, 04:57 PM
okhoney okhoney is offline
Registered Member
 

Join Date: Dec 2009
Location: oklahoma
Posts: 32
Quote:
Originally Posted by dcancellarich View Post
I feel like I have been fighting with one cold after another. I get about 2 weeks free and then another 2 weeks sicks. I have also had about 6 UTI's in the last 8 months. I am going to see my neuro on Wed, I guess I will see what he says. I am basically on Tysabri bc there are no side effects, maybe I should rethink that.
Almost no one seems to have this problem. I've had maybe 3 responses over a couple of threads asking if anyone else experienced this.

Since my post I came down with pink eye and was diagnosed with a double ear infection today. My Neuro told me (after a great MRI) that he wants me to hang on a couple more months and then everyone will stop being sick and maybe I will too. My infections have all been upper respiratory related so I'm hoping he's right. I'm not sure if you can pick up UTI's thru everyday contact like the germs mu 2 kids bring home from school.

I won't pass on any well meaning advice like 'wash your hands' because I'm pretty sure you are doing all the obvious things to avoid sickness. All I can say is that you are not alone (or crazy) if that helps at all. Please let me know how it goes.
Reply With Quote
  #6  
Old 02-28-2011, 06:23 PM
dcancellarich dcancellarich is offline
Registered Member
 

Join Date: Feb 2011
Posts: 34
Thank you for the words of encouragement. I will definitely be talking to my dr. on Wed about it. I've never been this sick and this is the first complete year I've been on Tysabri. I know that MS can weaken the kidneys and there is another person who gets the infusion that I have met that has had alot of UTI's. I've had all upper resp. infections also and ear infections. I've been on the z-pack 3 times since Nov. It is so annoying, I don't have time to be this sick, I have a 19 month old. Luckily he has stayed pretty healthy through it all. Best of luck to you and thanks again.
Reply With Quote
  #7  
Old 03-09-2011, 07:53 AM
booklady booklady is offline
Registered Member
 

Join Date: Jan 2008
Location: NY
Posts: 29
It comes with the territory being on Tysabri according to my doctor. It is a matter of choice as someone else mentioned, the infections or the MS getting worse.
Reply With Quote
  #8  
Old 03-10-2011, 04:52 PM
Remy91 Remy91 is offline
Registered Member
 

Join Date: Sep 2009
Location: Texas
Posts: 7
reduced time between infusions

I was on Tysabri every month. Starting around infusion #14 through #18 I got a UTI every month. So I switched to getting Tysabri every 8 weeks. I haven't had any progression of MS and things are fine. And I have stopped getting infections!
Reply With Quote
  #9  
Old 03-13-2011, 02:00 PM
lindaincolorado lindaincolorado is offline
Registered Member
 

Join Date: Dec 2006
Location: Colorado
Posts: 610
I can only share my experience...
When I started Ty 4 1/2 years ago my son, a bio-chemist told me to take vitamins/supplements to keep my immune system up. I said but, it's my immune system that is attacking me. He explained there are different components to the immune system and that he would like me to take the vitamins/supplements.

Last year I had a cold my grandkids started with and passed on. This past Dec I had a virus my husband brought home-it lasted long for me, about 2 weeks. This is it and I attribute it to my son's advice

My best wishes to those of you fighting UTIs, viruses etc...
__________________
Linda
Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off

Forum Jump


All times are GMT -6. The time now is 05:56 AM.