NeuroTalk Support Groups - Tysabri Information & Check In

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- - Tysabri Information & Check In (https://www.neurotalk.org/multiple-sclerosis/37891-tysabri-information-check.html)

Quote:

Originally Posted by RedPenguins (Post 230633)

Interesting point, Cherie - but then I think - lots of drugs have side effects - and sometimes the benefit of the med is worth the side effect. Sometimes it isn't. It's an individual choice.

Also - interesting choice of words - about our bodies fighting the drug - right now, my body is fighting itself....or that is the current belief - MS is an auto-immune disease. My body is already at war...and is not even agreeing with itself! How can I expect it to agree with anything? :)

Most drugs have side effects. For instance, anti-depressants cause dry mouth in some people or affect sex drive. Some people need iron supplements - but side effect is constipation, etc. There's a slew of examples, but I can't think of any at moment... :confused: darn holes in brain!

Anyhow....a drug/medication is a chemical we are putting into our bodies.... that in itself isn't natural. Some people react and have side effects, some don't. But either way - the med is doing something to our systems.

A drug allergy is not a "side-effect", it is an adverse event.

The first recommended course of action, in the event of an allergic reaction, is to AVOID the allergen.

If the allergic reaction is not serious, and exposure is absolutely necessary, then we can work on de-sensitizing ourselves by being exposed to minute amounts of the allergen to work our way up to a therapeutic level/tolerable response. This is the standard approach to managing allergic reaction, at least as I've been taught.

I have never heard it recommended that we just immediately mask any/all allergic responses by pre-medicating everyone with antihistimines, not for any other drug, ever. I feel this approach defies logic.

I hope it does not prove to have a snowball effect, leading to other health problems in the longer run.

JMHO.

Cherie

Quote:

Originally Posted by RedPenguins (Post 230633)

Most drugs have side effects. For instance, anti-depressants cause dry mouth in some people or affect sex drive. Some people need iron supplements - but side effect is constipation, etc. There's a slew of examples, but I can't think of any at moment... :confused: darn holes in brain!

Anyhow....a drug/medication is a chemical we are putting into our bodies.... that in itself isn't natural. Some people react and have side effects, some don't. But either way - the med is doing something to our systems.

The interferon treatments give many people flu-like symptoms....that's the body reacting to it. Neurontin makes some people gain weight. etc. Chemotherapy does all sorts of bad stuff to people - but it's a major weapon in the fight against cancer.

It's a personal choice - to weigh out costs and benefits, I guess.

Keri,

You make a very good point. The interferons, and even Copaxone give us side effects. I used to think the same about Tysabri as Cherie, that we shouldn't need an antihistamine to be able to take it. But when I was on interferon treatments (both A & R) I needed massive amounts of naproxen, then anti-depressants, etc...

And with Copaxone, my sleep quality suffered, not to mention the site reactions and skin dents. Dang these meds anyway. :mad:

I feel more tired on Tysabri, but my physical strength has improved, and my bladder issues have all but disappeared. And, no new lesions! :)

Quote:

Originally Posted by Riverwild (Post 230676)

Yay Wiz!!! :Dancing-Chilli::partytime2:

No new lesions is such a GOOD thing! I will never forget how excited I was when I got my results back and there were no new lesions! I was starting to look like a constellation! Anything still enhancing w/contrast?

Absolutely NO enhancing lesions AT ALL! :) My Mom suffered with GERD for years, so it might be that.

I suspect the Baclofen as well, could it be relaxing the esophagus sphincter too much, allowing acid reflux to occur? BTW, I'm currently slowly weaning myself off of it, going down about 5 mg each week. I hope that helps it too.

Went for blood work this morning to check on liver. Now I just received a call from my neuro's office that I have to go back tomorrow for additional bloodwork to check for antibodies. I guess it takes 3 weeks to get the results. The nurse also said that they will be slowing down the tysabri infusion. She did not seem to be sure based on the doctor's notes if I will receive a benadryl iv each time or continue with the oral med.

Quote:

Originally Posted by barb02 (Post 230952)

They should have slowed the infusion after the first time.:confused:

I am sorry you are going through this, you must be feeling like a pincushion! Try not to stress (easier said than done, I know!) How are you feeling otherwise?

Please let us know how it goes.:hug:

Quote:

Originally Posted by sheena (Post 230647)

Does anyone have a list of infusion centers registered and authorized under TOUCH. I have been cert, by touch but am getting booked too far out at the only infusion center I can find. Google is no help. Thanks Sheena:hug:

Quote:

Originally Posted by Riverwild (Post 230674)

Sheena,

MSActiveSource should give you a list of infusion centers in your area. If the first person you talk to doesn't help you, ask for the supervisor. This is what they get the big bucks for! Call them and hound them.

I wish I knew more that would help. My neurologist set up the whole thing for me, the med. center/ hospital has an infusion center and he set up the whole TOUCH training for them and had me in there within a month. This is at a rural 25 bed hospital! We have an oncology infusion center, a dialysis unit, MRI, CT, PT, ED, surgical unit, audiology,cardiology, the works! I would have had to travel a long way instead of the 25 miles I have to travel now.

RW is absolutely correct, Sheena...MSActiveSource is tasked by Biogen to maintain and set YOU up with a list of TOUCH certified infusion centers.

As she said, if the person who answers the phone does not accommodate you with a list of centers in your area, ask for a supervisor. It is to their advantage, financially, to make sure you are set up with an infusion center as soon as possible.

They work for YOU...;)

infusion centers

The TOUCH people have totally not been all that helpful to me, to be honest. I feel like I get a run-around every time I call. :(

Anyhow, they are booking me at a center that is NOT close to my house at all....And I live in a major metropolitan area...and that's the best they can do for me - is to send me far away...which is frustrating b/c there is a TOUCH-approved center within 2 miles of where I live - but it's "Full".

What does that mean - "full"?? It isn't making me happy that I will have to travel 30-45 minutes for this when there is one within 2 miles of my house.

~Keri

Quote:

Originally Posted by lady_express_44 (Post 230730)

A drug allergy is not a "side-effect", it is an adverse event.

The first recommended course of action, in the event of an allergic reaction, is to AVOID the allergen. .......

Cherie I totally agree with you on this. Has no-one heard of anaphylaxis (as in cardiac arrest) from drug reactions?

All I can say is listen to your body. It's best to take heed now while adverse symptoms are not severe, rather than have them build up to a full blown anaphylactic reaction.

Please don't become a statistic barb. Please listen to what your body and your doctor have to say.

I'm sorry that what I'm saying is probably not what you want to hear, but some-one has to be the big bad wolf and tell it like it is.

I'm not a horrid person barb. I'm saying this because I care!

Thanks all, I'm calling MSActiveSource, let's see if I gat the same run around as red. ~Sheena~:(

Quote:

Originally Posted by RedPenguins (Post 231272)

Hi Keri!

Is it possible that the infusion center you want really is full? Most infusion centers are used for oncology and other infusion services and they may be truly scheduled out. In the case of Tysabri, you have to have it every 28 days, so they must be able to book you a spot on a regular basis.

Other TOUCH infusion centers are one chair in a neurologist's office. They may only be able to service their own patients.

In my case, I go to a 4 chair oncology infusion center, 25 miles away. It was one of the first to be certified in my state, because my neuro insisted that they service his patients. I've gone there for steroid infusions, I know Crohn's patients use it, oncology patients use it, and other patients who need infusion services. The other two that were certified were 100 and 175 miles away from me and they were based in the neurologist's office. If the neuro wasn't MY neuro, I couldn't get into either of them. More have been certified since then, but they are few and far between here in Maine.

If you feel you are getting the run around from MSActiveSource, ask for a supervisor. They work for you and they get paid a LOT of money to provide services, but they cannot pull a rabbit out of their hat if there isn't an infusion center available that has openings and can provide the schedule needed. The infusion centers aren't run by MSActiveSource, they only certify them and provide training for TOUCH.

Your neurologist may also be able to help. Ask if they are planning to add infusion to their services. Tell them what is happening and see if they can help find a solution. Contact your local hospital and talk to them about your problem. Ask if they are willing to provide services, or expand so you can receive service there.

Please let us know how it turns out. There may be more help available if the above doesn't work for you.

MSActiveSource was very nice and put me with a sup. w/o me asking, but I'm still stuck. All of the centers (going out 50 miles) are booking later then the date I have. So, I guess I'll just stay where I am. Thanks for all your help.~Sheena~:winky: