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).:(

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:

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.

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.

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
 

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:

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:

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.

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!:)

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

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! :)

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.

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:

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
 

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~:(

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:

"I am already a statistic:eek:" I do not think you are a horrid person. But I also plan to listen to my doctor rather than pay any attention to advice from individuals who perhaps do not have any experience with tysabri. I am not taking this drug blindly. I am aware of the possible problems and continuously weigh the pros and cons. I may have to quit taking it. Based on the research I have done, it is not that unusual for individuals to experience some side effects or reactions particularly in the first 6 months. Or it may be a sign that I have developed antibodies to the med. I have also had experienced an allergic reaction to interferons and had too many IPIR's while on copaxone. I would rather have a reaction in the doctor's office then at home alone. That being said, I would obviously rather have no problems at all. If I have to stop taking tysabri I am out of options other than the possiblity of getting into a study where I may be taking a placebo.

I don't know anything about tysarbi but just want to say to everyone that I pray it works for all of you. Jim isn't allowed to try it due to his lowered immune system, so we stay on beta. But any study and treatment that can halt ms is worth the try if you can do it and I thank you all. What you do today will help our future ms'rs.

As of this morning, I have a theory of why my fatigue has increased on Tysabri. It can lower the blood pressure. Also, I got an elliptical machine before the holidays and use it once or twice a week for heart health.

Well, I was having a nuclear stress test for my heart function this morning. I went in without eating, but had taken my meds with water, including the blood pressure meds.

My BP was so low at the beginning of the test, (90/70) they had a hard time getting a reading. At the peak of my heart rate, it was up to 98/70. :eek:

In the past, I've needed to cut down on meds because of sleepiness. This could be a part of my current fatigue? At least I hope so. I need to call the PCP and tell him what happened and ask about cutting down.

So if you take Ty, and you're on BP meds, this is something you might want to keep an eye on.

If this is true, and the meds are adjusted, then I might really feel a lot better. :) I hope they don't find anything wrong with the heart (or anywhere else) and I can cut down on the meds that make me extra tired.

Wiz, remember when my mom had that blackout? They think she took an over the counter cold med with her bp med. This combo lowered her bp down so low that she blacked out. That's the best guess they can give. I think your right to call your pcp about this. My mom drove over 45 minutes to my sisters when she was supposed to be going to work and doesn't remember anything from that day. Scary.

Good advice Wiz!

I hope this helps with your fatigue!

My BP was always low ( 100/75 +-), and there's times when they re-check it because they think someone as big as I am should be stroking out and they are shocked when it's so low!

I know I'm just being a worrisome Mommy, but, don't forget to demand your Liver Tests.

I'm happy to hear Yours is A-OK, Wiz..:hug:
I hope all the other tests turn out well for you, too.

I wish you all well and hope Tysabri is your magic potion.

Keri

Who says it's full? TOUCH or the center? If TOUCH/MSActiveSource says it's full, then call the Center...it's not MSActiveSource's call to tell YOU they are full. That's like them telling you the hospital is full.

I have no idea what you have been told by whom, but their job is to give you a list and to assist you with the paperwork to get registered for the program if you are having problems.

What does "full" mean? They have every chair filled with a patient every hour of the day that they are open? It would be worth a visit to this Infusion Center to talk to the people there and explain your situation. That is what I would do...

I've been involved with this program since its inception, actually prior to its inception. Let me know if you need anything....

Hi Wiz

I, too, am one with low BP (same as yours 90/68 is normal for me) and always have problems with IVSM infusions. And I don't take any BP meds...that's just normal for me!

I hope all turns out ok with your tests. :hug:

Thanks RW and AV8
 

Keri, Hang in there. I am hoping that tysabri does help you. I know that I am walking somewhat better and feel more energy since being on tysabri.

I also wanted to tell you that I had my first and only flare/exacerbration last March and did not start feeling better for several months. IVSM did not help me either. I was dx last April. I started to feel better afterabout 3 months but it was gradual. I still have residual effects from that flare.

I have to drive about 50 miles to receive my tysabri treatments, but I do feel that it is worth it. Now I am going to have to find drivers since they will not give me the tysabri anymore without a driver due to benadryl ivs I am receiving. It will be a hassle, but I will figure it out.

I know in the first several months that I was dx all I wanted to do was sleep and cry. I had trouble making decisions, did not want to go out, or do anything. Gradually that has all improved. I hope that you see improvements too.:hug:

Keri

These are the kinds of situations that I brought up at the recent RiskMAP review of the TOUCH program. This is exactly what is NOT supposed to be happening anymore...I am furious for YOU...

I am going to copy your post and forward it to Biogen. To the person who is in charge of this program. You are NOT an isolated case.

You bet you should call the hospital. They cannot possibly be full. Call the infusion center, they also cannot possibly be full. The TOUCH people are not helping you, they are getting in YOUR way.

This is a system that is supposed to run smoothly and in your case it is obviously NOT...they - all of the - are adding stress to YOU and that is not what needs to be happening. The comment from your docs office was totally uncalled for. He's busy and sees a lot of patients? Geez, she needs a little course in how to talk to patients.

I am so sorry for what you have gone through. It is totally unnecessary.

The washout period as defined by Biogen/Elan is 2 weeks, not a month. Sounds like your neuro is being overly cautious, but maybe that's because he has so many patients.

Take care Keri and keep us posted. :hug:

I just received the results of my bloodwork for liver in the mail (only took 2 days -- had test on Thursday) and everything was within normal ranges. Yay! Now I have to be patient and wait for the results from the antibodies test.

Thanks for jumping in here Cheryl! Your help is appreciated yet again!:hug:

I had hoped that MSActivesource had ironed out the wrinkles since I started. I remember what I went through with them when I first started, and after three weeks they hadn't done a damned thing. The garbage about the paperwork that was sitting right in front of them, their little cheerful welcome call when I made the girl cry, the "oh yeah, didn't anyone call you yet about that?" etc.

This whole program doesn't seem to have improved. Too many people are getting the run around. Incorrect information gets passed out as fact. No investigation is done on coverage and co-pay. Faxes are lost. Med doesn't come. There's a different answer every time a new person signs up.

I am willing to do whatever I have to, to get this crap straightened out. If phone calls, letters or standing out front with a sign will work, please give me some input.

I'm putting together a timeline on what I have been through, between no information being available, different person every time I call, etc. My side of the ballgame is on top of everything. Infusion center faxes the stuff in front of me, Dr. signs and faxes in front of me, I get a copy with the time of the fax right on it, yet Biogen says again...we didn't get the fax...my pharmacist at the hospital keeps an extra vial on hand now because they can't get their thumb out of their backside long enough to fax the specialty pharmacy on time!!

It's gone on too long! :mad:

Keri,

I am sorry you are dealing with the incompetence of all parties involved.
You shouldn't have to go through this. I wish it could be as simple for you as possible. I was under the impression that things had improved. I know when I started, I had to do some major screaming to get things rolling, but that was a year ago! I'd forgotten what it was like to get the people at MSActivesource going. Your post reminded me and it makes me very angry that this is still happening.:hug:

Barb!

I am so glad that your liver is looking lovely!:) This means a celebratory glass of your favorite beverage is in order!

Please let us know how the antibody test turns out! :hug:

RW --

You and I both KNOW who we need to talk to at Biogen. I think it's time we did some politiking...I am game if you are...

Plus the fact that I am headed to DC in May for some political stuff to do with MS and I am sure Biogen is going to be there....shall we?

They are already know me by sight. ;)

I'll call when I am done with this #$%^&*( Lexsquawk printer download that is supposed to already have a driver. I am 2 1/2 hours and 84% into the download on my wonderfast dialup....grrrr!

Ya give me heart woman! When more than one voice joins in to correct injustice and all that...I'm in.

Thanks so much
 

Hang in there Keri. You are NOT alone. RW and I do know people and this is just absurd what you are going through. I am going to make a couple of phone calls first thing Monday morning...and at least one or two emails to some of the top people at Biogen...this is totally NOT acceptable.

As RW, and some others know, I spent a lot of time putting together a very vocal presentation for the FDA last June that Biogen was less than happy to hear...about how their wonderful streamlined program did not work...I did get their attention. But obviously they have not followed thru with a lot of their promises to patients.

Well...I am the squeaky wheel, right RW???!!! LOL!

Psssst!

Keri?

If you go back to post # 2, you will understand that there are people who have BEEN through this whole thing from the very beginning to where we are now. You are not alone and there are people who can help. Hang in there, ok?:hug: