NeuroTalk Support Groups - Tysabri Information & Check In

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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!

Quote:

Originally Posted by drwheeler (Post 484780)

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

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

Quote:

Originally Posted by 4boysmom (Post 484720)

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?

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!:)