Discouraged on Tysabri

[Smmind2]

Hi Everyone,

I am looking for an ear and some advice. I am scheduled to have my 26th Tysabri infusion tomorrow after work at 3:30. I recently had a mild relapse followed by a brain and c-spine MRI last week. The results for my MRI came in the mail today. I have a reactivated lesion at C-3 and 2 new small lesions in my cervical spine as well, my brain has remained stable over the past year.

To complicate matters even more I am 2 weeks late on my infusion because of paperwork at the infusion center and I'm covered in a Poison Ivy rash from yard work a week ago.

The last thing I want to do tomorrow is go have my infusion. With new lesions I am concerned that the risks of Tysabri are starting to outweigh the benefits for me.

Am I just being lazy--I'm a teacher and am exhausted to the max after school each day, last time I was infused I was stuck 3 times, and I'm worried about the poison ivy rash.

What would you do?

Tori

[CougarMama]

Hi Tori! I'm still relatively new to Tysabri (just had infusion #3). I've be tried Copaxone and Avonex and failed both therapies (no noticable effect on relapse rate.).

Tysabri is not guaranteed to prevent progression so the new lesions that you mentioned don't signify anything unless they effected your function. You will most
likely continue to accumulate lesions, unfortunetly. hopefully they are silent or develop more slowly then you would have accumulated them without therapy.

As for the poison ivy, annoying yes but it's not an infection, which would be more likely for me to question an infusion at this time.

As for the two week lapse, not ideal but, again, not a deal breaker.

If the drug is heing maintain your function and slow your progression I would not stop. Once the damage of MS os done it can not be healed completely and continues to accumulate.

Just my thoughts! Best of luck to you on your decision.

[LL60]

I am always a little scared to give someone advice when it comes to Tysabri. What if I encouraged someone and then they got PML???

I can relate to the end of year craziness at a school. I work in the office of a middle school and we all are so stressed, I just don't remember past years being this bad.

I had to skip an infusion due to steriod treatments last year and it seemed like that really affected me. And once they were back on schedule it seemed like it took 3 or 4 to get back to where I was before I had to stop. I go for #37 next Friday.

About the poison ivy. Poison ivy can be very serious. And it can go internally. This has happened to both myself and my daughter. Is it improving? It is drying? It is where you get your IV started? Do have another place that is free from blisters? Think you have to think about all these things before you make a decision.

My record for being stuck is 5 times. Have been lucky the last 4 months - got in on the first try. I am very aware, after all this time, which nurses are better with my tiny rolling viens. I have asked for a certain nurse before and that seems to be okay with them. From reading here I think my problem that time was too much motrin the week before due to dental pain I was dealing with. I am very careful now not to take motrin around infusion time.

Let us know how it is going.

I agree with cougarmom, some of us doing so well on Tysabri have to remember it isn't a cure, just a treatment to slow things down.

[Smmind2]

Thank you

Thank you both for your input. I decided to hold off another week. I rescheduled my Tysabri for this coming Thursday. My poison ivy rash is starting to let up, and my last day of school is Wednesday. Hopefully, by Thursday afternoon I'll be rested and not itchy.
:-)
Thanks again.

[tellnhelen]

Hi

Like others here I can not speak to your individual situation. That being said, my nurse practioners seem scary about tysabri. More and more I am inclined to agree. While my jcv antibodies are negative, I do have sxs that are listed as "side-effects" of the drug. I've done about 16 infusions. I'm looking forward to knowing more about the two new meds that are close to distribution. Until then, I'm gonna stay with zTysabri but look into dealing with the side-effect sxs I'm having.

[lindaincolorado]

Tori, you didn't say if you are jcv- or jcv+.
I just had #68 - Ty has been a great med for me. So I hang in even when advised not to and now I found out I'm jcv- so I am really good to go

I think holding off a week is a good move

Glad the itching is letting up!

[Jim the Fisherman]

I am on my 29th infusion and have not had any big flares since starting Tysabri and have 2 years with no changes in my mri.. Having said this, the clinic where I recieve my infusion has forgotten to order the medicine twice.. They have a "just in time" inventory system and don't order the tysabri until 2 days before my infusion.. Both of these delays were about 1 week and my symtoms increased both times-- numbness became much worse and legs didn't work as well.. It took 2-3 infusions to ever get back to where i was before the delayed infusion.. I really don't want to come off the tysabri, but my doctor is starting to press me-- When bg12 comes out I will probably have to go to it

[MSJimmy]

Poison Ivy could be a problem if ...

My only worry with the Poison Ivy would be if your PCM has placed you on some type of steroidal therapy like prednisone. I am certainly not a medical professional but would ask the question to my neuro since that type of treatment affects your immune system which I can only assume would NOT be a good thing while taking Tysabri. In the spirit of full disclosure, I am a newby to Tysabri and will have my first infusion very soon so if my reasoning is wrong, someone please correct me.

Jim

[palmtree]

I hope I'm wrong. I hope I'm wrong, but from the locations of your lesions it sounds like you have PPMS. And I hope I'm wrong.

I was on a downward spiral at lightning speed in the summer of 2010. First ON, then 3 new active lesions followed by 10 more. My doctor spent an entire day setting up everything so I could get Tysabri. I was never afraid of PML as much as MS progression.

I just had my first MRI since I started TY--that's 2 years. Guess what? No new lesions. NOTHING! I haven't been eating right. I get stressed out. I don't exercise. And I just go to my Tysabri every month.

I hope someone can find a DMD that will help you SOON. I heard about a new treatment that in still in clinical trials phase called "revimmune." My uncle has an auto immune disorder that was killing him and it did marvels for him. I don't understand why a drug can be approved for one disease and not another. I has already been shown to , not only stop MS progresssion, But reverse it. I want that. It's the hope that is keeping me going right now.

It sounds like the Tysabri is not working for you. Keep us posted.

[Smmind2]

Thanks everyone

My poison ivy is totally gone and I had my infusion. I was about three weeks late on my infusion and couldn't tell a difference before or after I was infused.

I am JC+....and am worried the TY isn't working. I go to my neuro on Monday to discuss the continuation of TY. I'm ready to go off, but having tried all the CRABs I don't know what other choices I have at this moment.

Before TY I was getting 2-3 new lesions in my brain every month. My brain MRI has remained stable since I've been on TY, but my cervical spine hasn't.

I'll let you know what the doc says. Thanks for your input and stories. :-)
Tori

[Smmind2]

Doc Appt.

I went to the doctor today. We decided to continue Tysabri. Although my risk of PML is high (28 infusions, JCV+), my disease is very active and for the most part Tysabri is keeping it under control.

He is sending me for a quick screening MRI every 4 months as a precaution to help catch PML early if I were to get it. We discussed the fact the screening system isn't perfect, but it's better than nothing and will give me peace of mind.