RW, glad you are doing OK.

I hope that eveyone is doing well with their Tysabri.

Quitting Rebif may have been one of the best things I could have done because of the incredible amount of dizziness that I experienced. Fortunately, I delayed taking my next Rebif shot for a few hours last week which meant that I was not dizzy when I got the call about my wife's bicycle accident. If I had taken the Rebif, there would have been no way that I could get to the hospital, let alone stay the night with her in the ER.

Now I regret stopping Tysabri.

-Vic

Vic,

I'm so sorry about your wife's accident! I hope she's going to be ok! Darn medicines anyway. I wish there was a way you could be back on the Tysabri. :(

Hi Vic, Well that is frustrating...I was hoping you could tolerate the Rebif. Sorry it's not working. Is your wife okay??? That must have been scary. Please keep us posted on how she is doing.

Vic, I am sorry to hear your wife had an accident-hope she is doing ok.
I wish your ms treatment was going well :hug: Maybe what's happening in the pipeline will become avail soon and will be right for you.

Wishing you my best,
Linda (lindaincolorado :))

I found a good "article" or CME/CEU from a doc about Tysabri. It gives you insight on the thought process your neuro should go through when something happens outside of norm while on Tysabri.

It's also reassuring to actually read in print about transient antibodies for those of you just starting out.

http://www.projectsinknowledge.com/c...856&sj=1858.04

Vic, I am so sorry to hear that your better half had a bike accident. I hope all is well and that she is back on her bike soon!

I missed the telling, what happened?

I'm also glad that you were in full posession of senses when it all happened.

I wish you still had Tysabri too.

Please give your wife our regards and best wishes.

I had my infusion today. Everything went well. My mood is much better compared to three weeks ago. :)

Wiz, I'm glad you are feeling much better mood wise!! :)

So what number was this one, Wiz???:D

I'm planning on getting #24 on schedule set before I missed it for the appendix, so only a month late.


Are we back together yet?

Uh oh, I thought this was #25 (but I was afraid to say so.) :D I might be just a bit ahead of you now RW! :eek: I hope you'll be feeling recovered enough to have your next one soon! :hug:


Doh!!!! :icon_mrgreen: :Noooo:

Laughing here!

It IS # 24!!! I went back and checked before I posted that post just to make sure!

It's not a race, it's how we feel! I am so glad that it helped and that you are feeling better!

I can't tell if I am feeling effects of not having it yet. Too much other garbage going on, but I am sleeping 11-12 hours a day and dragging butt when I am up. No provigil since the op, so my body will be reset to minimal dose again! It'll save me $$ for a few months! :p

I have bad news tonight, and in a very down mood.

I did test positive for NABs for Tysabri, so no more for me.

I had more lesions after a year on Avonex. No new lesions after a year on Rebif, but I was always itchy and tired, so the switch to Ty.

Now Ty is out. My neuro wants to put me on Copaxone. My DH is really struggling with all of this and thinks my neuro is an idiot. He doesn't like him and was quite frustrated that once again I am changing meds.

There is another neuro in town, and I could try to switch to him, but I don't think my DH thinks that is a good idea. He's afraid if I switch because of his comments today, and then I don't care for the new neuro, then I'll blame him. My DH has thought I should have been on C all along, but says it could just be his bias against the neuro.

I'm sad and frustrated. Tired also from spending a weekend on planes going from Idaho to San Antonio quickly for meetings. All in all, not a good combo. I think I'll just head to bed and deal with it all tomorrow!

Hi 4boysmom,

I am so so sorry to hear about the antibodies. :(

Is it possible that you might have transient antibodies, wait 3 months and test again? Or is the neuro convinced the new lesions you have are because the Ty. isn't working? Again, that just really sucks. :mad:

More important, what do you actually think about your neuro? Are you personally happy with your care? If you are then I would stay. But if you are not happy or ambivalent you can always try consulting with the second neuro. If you don't like the second neuro then go back to the first one if need be-- you do not have to tell the first one that you are "trying out" someone else. I would just go to your current neuro's office and just say you want copies of all your medical records, just for your own files. Then you can bring those along with you to a new doctor.

Anyhow, don't forget. All is not lost. There will be some pills on the horizon soon. :hug: :hug: :hug:

I don't know how I feel, and that is part of the problem. The concerns my DH has with the neuro are legitimate. The neuro told us both 3 weeks ago, that if the antibody test came back positive that it may be transient ones, and we'd look at that possibility when the results came back.

Then when we went to the appt yesterday, he said flat out that since I'd been on Ty for almost a year, that it wouldn't be transient, that only happens in the first 3-6 months. He always has to be told my drug history, he can't remember and it is faster for me to tell him that for him to go back through his notes. Maybe most neuros don't remember you from visit to visit, or that you are on one of his special drugs, Ty!

His nurse is awesome! I would really miss her because she does remember you and keep up with what is going on. The neuro is involved in a study for another drug, and maybe now his focus is changed.

Some of the problem is that my DH thinks MS can be wrapped up in a neat little box, always handled in a certain way. He thinks it is terrible that every year I get MRI results, and my meds change! He knows someone at work that has been on C for 5-6 years, has had a few flairs, is more disabled than me, and seems happy with his med. But of course this guy hasn't had an MRI in 8 years!

I told him, he could have 50 lesions, and he could have no more lesions. He wanted the neuro to tell him that if I was on this drug it was keeping me walking, it was keeping me from getting "that" lesion, or "this" one. I tried to explain to him that the drugs and the disease doesn't work that way, it is always a "crap" shoot. (Having played craps, I understand that term now!)

It just made for a bad night that I didn't need. Now I have a UTI this morning to deal with, feel like poop, am looking at going from a once a month infusion to daily shots. I know more is out there, and it will take time. I'm just not patient this morning.

I'll go do my 3 mile walking DVD and hopefully perk up. I still have work to go to, and so life goes on!

4boysmom,

I'm so sorry about the test results. :( I can relate to people not understanding about MS being complicated. I'm lucky that my DH finally does understand but only after talking to him a lot about the disease and treatment for the past six years. Other people expect me to be like "so and so" who is doing just fine on Avonex and in a physical job, etc...

Copaxone is a great medicine. I was on it for 18 months and had good MRI's etc... It has a very long track record for safety and has impressive research data showing it works.

I hope it will work fine and you'll be able to get on with life without all of this "medicine stuff" as I think of it. I went through lots while on interferons and it just seems like the starting and stopping of meds takes so much out of us.

I am just so sorry to hear this, Bren.

I am sitting here puzzling over this, trying to figure out all the angles, as I am sure you are also.

Only you can make the decision as to whether to try to continue for a few more months. You have to go through all the evidence- the MRI, the way you FEEL, whether your symptoms are returning, whether you have any adverse reactions when you have your infusions, etc.

You also have to decide whether you trust that your neuro is looking out for you and has your best interests at heart.

It's true that the antibodies may be transient, even now, but you have to add it all up and decide.

I also did Copaxone before Tysabri. It didn't work for me but that does not mean it won't for you. There are other drugs in the works now too.

I understand about your husband's concerns. I had to finally tell my fiance that I had done my homework and that I was going to do what I thought was the very best for me, and that even that was no guarantee that at some point I would prevent disability, since in essence, even with treatment, so far, people with MS progress. He didn't want to hear it, but hear it he did.

It's a lot easier now, because he partners with me to keep me healthy rather than fighting me when he doesn't understand. My neuro and I explain everything to him in easy to understand terms and keep answering his questions until he is satisfied.

Take some time and just think it all over. You'll find an answer in your heart and your mind and in the end, it is your decision as to where you go from here. :hug:

Let us know how you are. WE care and we are here for you if you need to talk.

I feel my neuro did a good job of explaining why he had treated the disease the way he has, but my DH can be stubborn! And once he's made up his mind that a person doesn't know what he's talking about, there is no changing that opinion.

He did take all of the C material with him today. I told him he was responsible for getting a shot rotation figured out, and understanding totally this drug. He says he knows that I have done my due diligence, but my sense is that he doesn't believe that totally. My sense is he thinks I've just followed what my neuro has suggested.

I don't know if any of you remember that I have had reaction to my Ty infusions. The first one went fine, then #2-8 I would get the chills, a headache, feel crappy from 5 minutes after the infusion stopped until about 30-40 minutes later. I'd go home and rest, and be fine the next day. My last 2 infusions were perfect! I had the infusion, felt fine afterward, even went to dinner and ballgames after feeling great!

The neuro said that indicated to him that I had developed the antibodies a couple of months ago, and that was why my SE went away! The drug was doing nothing for/to me. That makes sense, doesn't it?

My DH will soften. He says I shouldn't switch neuros on his account, that if I like him, that is fine. I think I was just hurt that it was a blow for me to have these antibodies, and instead of getting consolation from him, it ended up in an argument about how idiotic my neuro is!

Don't get me wrong. He is a very good, loving man that does his best to meet my needs and take care of me. I think he is just extremely frustrated that I have a disease he can't fix! He actually will be better now that he is giving injections again. I think it makes the disease more real for him. He kind of lost that while I was on Ty.

Hi all, I'm getting my 9th infusion right now! The nurse infused over 45 minutes. Now he is following with saline. Isn't it supposed to be 1 hour? I think sometimes he shortens the time. Could this explain why some infusions make me feel sicker than others? When I had a month of antibiotics they had to slow the infusion to 1 hour instead of 30 minutes which made me feel WAY better. I'm feeling pretty nauseous and cruddy right now. I've had so many annoying problems with this clinic!! :mad:

All I can tell you is that the procedure is to infuse over one hour at my place. The whole thing takes about three hours start to finish from the time I walk in until the time I walk out, and they follow every step religiously. It sounds like your infusion center is in a rush to get the chair for someone else.

You need to speak up and let them know.

I'd let your neuro know too. Perhaps he/she can intervene on your behalf?

It would really suck if you had a reaction and got taken off it because of a nurse not following the protocol!

I agree with RW. In that case I would insist that they slow the infusion down and also give you plenty of saline for a good flush. It always takes an hour for the Tysabri with mine because the nurse sets it up automatically.

RW, yes I think they are in a rush to move me through so someone else can have the chair. That really irks me. I used to go at 2 pm (which is the last appointment time). The past two times I have gone at 8 am and noon. Today the Tysabri was definitely infused over 45 minutes. Maybe the last one was too. I could have sworn it was 1 hour when I used to go at 2 pm (no one waiting to go after me since I was the last round). Regardless, I emailed my doctor asking that she write in my file that it has to be infused over 1 hour. Then I guess I get 30 mins. of saline after. And then wait 30 more mins.

This clinic can be so unpleasant. Everytime I go in there all the nurse does is whine and complain about how overworked he is. They instituted a new policy where they put a wrist band on you with your name and the drug you are to receive. He was crabbing about that today too. Seems like a good idea to me to insure the right person gets the right drug. Unfortunately, I have no alternatives that I can afford. Since my infusion is in the doctor's office they charge me a $25 co-pay to do the infusion. If I went to a regular infusion center I would have to cough up 20% of the cost and that is too much.

Anyhow, I'm feeling a bit flu-like with headache and nausea. I think I'm going to go take a nap even though it's almost 6 pm! I'm just hoping I feel better tomorrow. :)

I heard back from the nurse -- they said it can be infused over 1 hour the next time -- the way it should be!!!!

natalie

Hope you are feeeling better. I always have mine infused at least 1 hour and then the saline and wait at least another 30 min. I am generally there between 2 1/2 and 3 hours. do they draw blood from u before each infusion?

I also have been getting sleepy after the infusion but after that I feel good.

Be well
laurie f

Thanks laurasari. I talked to my neuro and I may even have the infusion slowed down to 90 minutes. 45 minutes has been leaving me feeling really awful for days. They follow the infusion with saline and I wait. They don't draw blood before each infusion -- just every 3 months for the JC virus test and liver test.

As this thread is reaching the limit of number of posts allowed before it begins to strain the server, would someone please start a new Tysabri Check in Thread and then I will link that here and close this one. We will leave this stickied for reference.

thanks :)

We have posted abou tit. They are waiting until they hit the 1000, then Pm'ing me.

I thought I'd check in and help get us to 1000!

Okay, I got my copaxone yesterday, and I'm not thrilled! It has more solution by far than Avonex or Rebif, so even if the needle is smaller, you poking in a bunch more stuff! I'll live, I guess.

I'm waiting to start because of this situation. I've had many UTIs over the course of my married life. I found out I was allergic to Sulfas early on in the process. Then macrobid just didn't work because it would come right back after the course of med.

I finally went to a urologist, that gave me a standing prescription of Cipro, knew I knew when I had a UTI, and so on. Of course as long as the prescription was current, never got a UTI! That was 15-20 years ago.

Cipro has always knocked out a UTI, in just a day or two. Well, I started feeling like I was getting a UTI, so I went to the local clinic and got an rx for Cipro. I took it religiously, but still didn't feel like I was getting better. It would be cloudy, and burn, and I was just tired all the time. It was an extremely painful bout, but the cloudy urine and pain in the morning stayed. I finished the 7 day course, and on the 8th day, knew I was still in trouble.

Went back to the clinic, and sure enough still infection in my urine. The doc cultured it this time, and I'm waiting to hear about that tonight. He gave me Levaquin, and told me it seemed my body was just fighting with itself.

Now I'm worried! What if the NABs from the Ty has so messed up my body that antibiotics just don't work? 3 days of Levaquin, a large dose, and I woke up again this morning with a little pain. Not cloudy, but fought with pangs of frequency and the burning. Anyone else have this kind of trouble?

tysabri amd anemia
 

I used Avonex for 10 years and have been on Tysabri for 16 months. I developed some retinal infarcts 2 weeks ago and had blood tests which show I am anemic. I have been stable and have had no adverse effects until now. My neurologist stopped the Tysabri until we can determine the cause for the anemia.
Today was the first day I have had any symptoms...wiped out all day and my wife says I look pale. As if MS doesn't cause enough fatigue:)
Has anyone else had any similar stories?

Ron

Glad to hear you got the Copaxone! I don't have any experience with any of the other injectables, but the Copaxone does have an intimidating amount of stuff in the syringe! I liked the needle a lot more than the others I have seen! :hug:

I think the NABs are against the Tysabri, but this would be a question for your doctor.

I know that when I had the surgery last month, my neurologist wasn't concerned with the Ty causing any problems, but he stopped # 24 to allow me to heal and get off the meds I was on, but my infusion was supposed to be only a few days after I was operated on, and I was still in the hospital at the time, so I agreed with that decision fully.

I was on some heavy duty antibiotics due to the rupture of the appendix and having so many problems with those that I didn't want to add anything else to the mix!

I have never had a UTI. I thought maybe I was getting one from being catheterized while in the hospital, but the doc said "Impossible with the antibiotics that you are on." It turned out to just be irritation from the cath itself.

I know a lot of others have had problems with UTIs. Hopefully someone will chime in with their experience!

Hi Ron! :)
Welcome to Neurotalk and more specifically to the Tysabri thread!
23 infusions here with # 24 next week.

I haven't had any problems with anemia, but being a female I take a multivite with extra iron anyway, along with a pretty healthy diet and lots of cast iron cooking!

Did the doc check your B12 levels? That could be a factor.

I am sure if there is someone who is on Tysabri who has had experience with this, they will pop up and give you their input!

Hi Ron,

Welcome to Neurotalk! I hope you stay around with us on the Tysabri thread. I just had infusion #9.

I too have had a problem with anemia which I am assuming is from the Tysabri. It is extremely mild and fluctuates between normal and abnormal. After being on Tysabri for several months I started getting slightly below normal numbers on RBC, Hemoglobin, Hematocrit. My internist checked my iron and B-12. Iron stores were very low but still ferritin was in normal range. B-12 was normal by US standards and low by European standards. I started taking B-12 supplements daily and that has helped tremendously with my energy. I noticed that recently Tysabri added a new statement in their drug insert which notes that the drug can lower hemoglobin levels. I thought that was interesting since when I first began the drug it wasn't in the insert.

I will tell you that my neuro did not think this mild anemia was Tysabri related but I am convinced it is because prior to that my levels were always normal and showed no anemia.

Hope this helps!

Hi 4BoysMom,

If I start having problems with UTI's I take acidophilus or eat yogurt with live and active cultures. That seems to keep them at bay for lots of people it seems. Maybe that would help you too? Keep us posted.

Also, good luck with the Copaxone! I hope it works well for you!

Hi 4boysmom,

Try not to worry. I bet your immune system is slightly compromised from the Tysabri still (it takes 3 months to be out of your body). Remember the Cipro worked 15 years ago for your UTI. But now you are on an immunosuppresant drug so the Cipro just may not work as well or at all. You could also have a different kind of bacteria with the UTI this time around. These are reasons why you may be having a hard time kicking this infection. I know how you feel -- I got worried when it took me 2 rounds of antibiotics to kick this respiratory infection I had last month. I thought it would never go away but it eventually did. Yours will too.

By the way, I used to get UTI's all the time and it was so annoying. I don't know how you feel about Chinese herbs/acupuncture but there is a formula my acupuncturist gave me that worked really well to clear up the UTI's. It was like a miracle! I now have several bottles of this in my cupboard just in case! It is called "Coptis Purge Fire" by the company Health Concerns. You can buy it here -- maybe you'll find it cheaper somewhere else. Take 3 pills 3 times a day.

http://www.gaines.com/store/HealthC/HCNCF090info.html

Interesting Article About PML Recovery
 

Some encouraging news regarding PML:

http://www.mscare.org/cmsc/Informs-A...St.-Lukes.html

Natalie,
Do you do the Chinese stuff year round, or only when you think you're getting sick?

I was just on Cipro in 2007 (I would have been on Rebif or Avonex at that time) and it worked fine.

I've done 5 days of Levaquin, and still don't feel great. I have a call in to see what cultured, but haven't heard back yet. I don't know if the Levaquin is making me just ache all over, or if it is part of the UTI or whatever is going on. I'm just ready to feel better.

On the Copaxone front, I did the first injection last night and it went all right. I have been so down since getting off of Ty, and just grouchy about the whole C thing, that I figured I'd just get the first one done and maybe I'd perk back up.

It did seem to help a little to get that first one done. It didn't hurt at all, the needle is so small. But after the needle was pulled out, then it started to burn a little, and my leg started spazzing a little. It all was over in under 5 minutes. I guess I can live with that.

Now I just need to try the autoinjector, because my DH is going to Dallas for a week in April and I'm going to have to give the injections myself. I did a few of the A and R ones way back, but I have a mental block with it now that I'm just going to have to get over!

Thanks for your concern everyone. I always know it is safe to come here and tell everyone my sorrows!

Interesting Presentation by Biogen focusing on Tysabri
 

Lots of good data on Tysabri effectiveness and PML potentially being a rare, manageable side effect

http://idea.sec.gov/Archives/edgar/d...3dfdefa14a.htm

Hi 4boysmom, I only take the Chinese herbs when I feel a UTI coming on. Think of them like antibiotics. I usually take for 7-10 days. Good luck with the Copaxone!

Interesting comment by Al Sandrock (Neuroogy Head) at Biogen Idec's R&D day yesterday. Said that he believed that 4/4 of the PML patients treated properly were alive. Also more detail info on Tysabri in the Re-accelerating Tysabri PDF on this page

http://investor.biogenidec.com/phoen...ventID=2141013

Chris

possible blood test for PML by end of year
 

this was posted yesterday. Biogen is hoping they will have a blood test by the end of the year for PML. Interesting.

http://www.forbes.com/feeds/afx/2009...fx6214393.html

Ahhhhhh...

# 24 down!!:D

No problems, no concerns (except for the FOUR misses before the nurse hit the vein on her last try before I called in a phlebotomist!)

Saw my neuro afterwards and he asked me if I was ready for a drug holiday yet!!!:eek::eek::eek:

I was all confused and said...um...NO? (this is the guy who said he isn't in favor of drug holidays) :confused:

He started laughing and said he didn't think I would want one :rolleyes:

I told him the one I missed was the only holiday I was planning to take!!

We talked about the Biogen reports and he told me that he was informed that the patient who died (49 y.o F, methotrexate prior to Tysabri with last Metho TX 4 months before infusion) and her family had refused all further treatment after she was diagnosed with PML.

He stressed the importance of being vigilant about any changes in thought process, affect, vision, etc and that he wanted a call even if we thought it was "nothing"
Since the old man was there with me he told HIM that he could call too since I seem to have a problem admitting it when something is wrong with me...(LMAO! That was a shot at me for the appendix!)

In short, it was a VERY good day!

I did let him know that I had noted increased stiffness and fatigue, but could not put it down specifically to missing the last infusion since everything else was whacked out at the same time! :cool:

Hope everyone's doing well!:)