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)

Good news Wiz! I hope the rest of the testing goes well too! Keep us posted. RW makes some good points....;)

Tysabri # 4; Reaction #2

I had my 4th infusion today; I am premedicating with .25mg of benadryl and 2 tylenol. I had another reaction and had to receive an iv of benadryl. This time I experienced lower back spasms, extremely bad headache, cold chills, shakes, and up and down pulse and blood pressure. I was also coughing alot.
symptoms for the most part started after infusion so I had a complete one.

I am so frustrated and upset. I almost hit a car exiting the clinic parking garage. Neuro ordered bloodwork for liver (will have tomorrow)and discussed the melanoma issue with me (see dermatologist next week for mole scan). After reaction he said he wanted to talk to the drug manufacturers to see if they have any suggestions. I told him I want to continue on ty and he said, "we'll see." He did mention the possiblity of giving me an iv of benadryl prior to the infusion.

I had no problem with 1st infusion, had chest pains and tightness and shortness of breath with second and no problems with 3rd (premedicated for first time).:(

Quote:

Originally Posted by barb02 (Post 230436)

I had no problem with 1st infusion, had chest pains and tightness and shortness of breath with second and no problems with 3rd (premedicated for first time).:(

I'm so sorry you're having problems with the infusions Barb. :( I wonder if I would too, except that I normally take Claritin each day for my various allergies?

I wonder if that might help you too? If you took it a couple of days before and after? Just a thought.

I had my 10th infusion today and it went well. :) I also had fresh brain MRI's with and w/o contrast, and there were no new lesions! :) I looked at them too, and all we saw were my old familiar lesions that I've had for several years.

:Head-Spin:

Quote:

Originally Posted by Riverwild (Post 229941)

I was suspicious of inflammation of the gallbladder but I ain't a gastro doc. I brought in quite a few patients with gall bladder attacks and it ain't pretty when it's inflamed. Do you have the pain after eating fats? Also please ask your gastro doc to test for h. pylori if he hasn't already. It would suck if it was something as simple as that, after all the worrying you have been through, and it's a simple breath/saliva test depending on which one he uses.

Hi RW,

I have to have the darned stress test on Friday. :rolleyes: Then I'm assuming they'll want to do a upper GI to make sure nothings blocking in there or anything like that. I don't think the pain corresponds to eating fat. This morning after breakfast I had slight nausea. All I had was oatmeal with a little bit of sugar on it and my morning meds.

Quote:

Originally Posted by lady_express_44 (Post 230109)

"It is never normal to have high calcium levels in your blood.

Over 98% of ALL people who have a blood test that shows too much calcium will have a parathyroid problem.

... it is (also) possible for a person to take too much vitamin D so that they absorb too much calcium from their diet and hold on to too much calcium in their kidneys... and their calcium goes high."

http://www.parathyroid.com/high-calcium.htm

Cherie

Wow Cherie, thanks for that info. :eek: I take lots of Tums for my heartburn, but I recently upped my vitamin D dosage that I take with my calcium and magnesium in the morning. My calcium was only slightly high, but I wonder if that could be caused by the vit. D? I think I'm going to cut down on the D and see if that helps.

Quote:

Originally Posted by Av8rgirl (Post 230156)

Good news Wiz! I hope the rest of the testing goes well too! Keep us posted. RW makes some good points....;)

Thanks Cheryl,

After a few thousand dollars of testing to bill to the insurance company, we should get to the bottom of this. Or at least just confirm that I don't have stomach or esophagus cancer. :rolleyes: (I don't believe for a minute that I do, but it doesn't hurt to check I suppose!)

Personally, I do not agree with even taking an antihistimine prior to injection. If our bodies are fighting any drug to this degree, I think it is a sure sign it's not agreeing with us.

Allergic reactions are not something to play around with. :mad:

Cherie

interesting point

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.

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.

I think we all have our limits as to what we will put up with.

I'm still waiting for my stuff to be approved by the Tys people. I hope to start next Friday - and the closer I get to it - the more afraid I get. It was once thing when the PML was the big warning...but now there's a lot more on the list....lots to think about...

~Keri

ps/my favorite is when the list of side effects includes the actual problem you are taking the drug for - ie: sleeping pill bottle that says "may cause drowsiness" - uhhh....yeah! lol ;)

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 barb02 (Post 230436)

Barb,

I am sorry to hear that you are going through this. It has to be so frustrating for you. It sounds like your neuro is on the ball. Keep talking to him and let us know how it goes. :hug:

Quote:

Originally Posted by sheena (Post 230647)

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.

Quote:

Originally Posted by ewizabeth (Post 230562)

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?

I had another thought about the other stuff you are going through. How long have you been on antacids/proton pump inhibitors, etc? Do you have GERD? Any possibility of Barrett's Esophagus? ( I'm just throwing out suggestions here, because you have me trying to remember every darned thing I learned now! :confused: I lost a LOT during the cognitive leaking! )

I hope that after they are finished turning you inside out and examining all your bits and parts that you get a simple answer with an easy solution! :hug::hug::hug:

Maybe you need more wild blueberries!:)