Living With MS

Discussing all aspects of Multiple Sclerosis, various treatments, including accurate information regarding Tysabri.

Monday, May 31, 2010

My Tysabri Diary.....,

Happy Memorial Day to everyone! Let us take this day to not only enjoy our families and friends but to also remember those [soldiers] who had placed their lives in danger---fallen heroes that paid the ultimate price of giving their lives..., no words could ever express how much we all appreciate our veterans.

On a different note, I responded to a post on the Health Talk blog from a woman/sister of a MS patient who recently passed away from PML..., below is her post and my reply to it--enjoy, remember, and love the ones you hold dear to your heart while you still can...,


Love, Lauren :)

Here is the post from this sister to which I responded:

56. Mar 18 2010
9:33 pm
Hi all. I apologize for taking so long to get back to you - I’ve needed some time…talking Tysabri and PML is so painful. Tonight is good for me because I have been able to research more and get in touch with my feelings about everything that happened to Jenni. She was diagnosed with MS 6 years ago and it was very aggressive. I know she tried several different MS drugs (forgive me for not knowing names and more details) and they were not controlling the lesions and exacerbations for the first 3 1/2 years. After much research, education and prayer she decided to take Tysabri. She had excellent quality of life and was lesion free for 2 1/2 years! She was registered with the TOUCH program and in frequent contact with her doctors. In November she started experiencing symptoms (numbness, vision and hearing problems on the left side; forgetting what she just said, difficulty finding the word to say, she would also say that she just didn’t feel like herself…it was like someone else was in her body) If I understand correctly, she contacted her neuro every day in november trying to get an MRI b/c she knew something wasn’t right. The office wouldn’t return her calls and her neuro kept putting her off and telling her it wasn’t time for her MRI. Jenni complained about all her aches/pains frequently so I’m thinking the neuro might have blown her off a bit. Finally, she sat herself in their office until they scheduled an MRI for her. She got her results at the end of January and sure enough they found many “suspicious lesions”. They didn’t look like typical MS lesions and didn’t look like typical PML lesions so they ordered the lumbar puncture to look for the JC Virus….those results took over a week to get. By now, her symptoms had gotten increasingly worse (almost within a week’s time). She was still very numb on the left, speech was very childlike - few words per statement - some speech was unclear - she would not be able to find the right word - she felt “dumb” and knew her mind wasn’t working right but couldn’t control it - she had difficulty understanding what we were explaining to her. As soon as they finished the lumbar puncture they talked about starting her on steroid doses while they wait for results. They gave her one dose and said if her symptoms didn’t improve by the 2nd dose they would admit her. After no improvement from the first steroid dose they went ahead and admitted her. While in the hospital, her vitals remained stable but her disposition became quite irritable. She was a smoker (which is discouraged in hospitals) so this made her irritable. Basically all her symptoms remained the same or slightly worse. After about a week or so they discharged her since they were just keeping her for monitoring while they waited for the JC Virus results and she was so irritable. A few days later they got the call that she tested negative and had PML. They started plasma pheresis the next morning and remained in the hospital for 2 weeks while receiving all the doses. She was discharged the day after her last treatment. She was still just as symptomatic but there was nothing else they could do but wait to see how her body responded to. We all sat back and waited for those “good weeks” I kept hearing about and then suspected IRIS to come where they would then give her several steroid treatments. Anyway, a few days after being home she started becoming very confused, discouraged, irrational upset and was experiencing a lot of pain in her head. They re-admitted her and within a few days she deteriorated severely: limited eating, dragging left foot, stopped talking by Friday night. Saturday afternoon I received a call that the doctors felt she might not make it through the night. We rushed down and she had been experiencing twitches and was now posturing. She was bruised from all the posturing. She was not talking, but could visually lock onto you and track you around the room. By Sunday night she was no longer posturing b/c the morphine and Valium were controlling her pain and she would no longer look and track you….she would just stare straight ahead almost blankly. That night they admitted her into a wonderful in-patient hospice facility. The admitting doctor noticed her pupils weren’t dilating properly and suspected her brain had started swelling. Monday she was having trouble swallowing and was very rattly. They gave her meds to clear her up. That afternoon was probably the last time I witnessed her being able to show some sign of being aware of what was going on around her. After that I am not sure what she was aware of b/c she showed no signs. Her eyes remained slightly closed from this point on, her breathing fluctuated and by wednesday afternoon she passed. It was devastating and all happened so quickly. I am not sure how I feel about Tysabri at this point. I am grateful for the 2 1/2 years of time it gave her. But am so upset that it did not give her the time she needed in the end to get her affairs in order and properly prepare and say goodbye to her 3 young daughters and husband. It was truly horrific and a terrible way to die. I thank all of you for your words of support and kindness and if there is ANYTHING I can do to help you in your decision/journey with Tysabri I would be more than happy to. Our family did consent for an autopsy so I am anxiously awaiting those results to hopefully get more information. One of the most frustrating things throughout this experience was the lack of information out there both on the internet and from her very own doctors. I can’t tell you how many times I heard “we don’t know….we’ll just have to wait and see….we just have to hope and think positive…” If there is anything I can do to prevent any of you from having to go through that I will. Just ask any questions you may have and I will do my best at answering them. Take care… Posted by Tawnya

I was able to calm the fears of most patients on Tysabri therapy who reviewed the post, and here was my reply:

Dear Tawnya:

Please accept my condolences for the loss of your sister, I am so very sorry to hear that she passed away.

I read your post and I discussed this with a neurologist friend of mine who has patients on Tysabri. He practices out of one of the largest MS clinics in Atlanta, Georgia, and is quite familiar with Tysabri, the trials, etc. I will paraphrase below most of his comments to me regarding Jenni who recently passed away from PML -- ***please keep in mind that you did not know which medications Jenni was previously on or for how long, but you did state that she previously was on medications, so for all we know she could have previously been on Azathioprine/Imuran, Methotrexate, Novantrone, CellCept, etc., all of which remain in the body for a long time even though previously discontinued by the patient prior to starting Tysabri, and they can severely suppress the immune system, so she could have already been immune compromised.***

Here is what my neurologist friend told me: "I don't know where the ladies doc [Jenni's doc] sent the test[the CSF/lumbar puncture spinal fluid to test for the presence of JC virus], but it likely was not NIH. When a suspected PML case comes up they are supposed to notify BIIB and send samples to NIH. [this is laboratory where the specific sensitive test was developed by Eugene Majors and is JC virus sensitive], not all laboratories use this specific test. It can take a bit of time for the confirmatory test. I hear up to a week.There may be a small number of PML patients initially misdiagnosed as MS, but I have real doubts it would take many months to further manifest symptoms. I think what actually happens is PML develops and it is confused with a MS flare up. I am still am inclined to believe that the family is a bit confused about the information. We see that all the time at our clinic."

He further gave me the following information which I looked up:


Rapid diagnosis of PML is critical due to the aggressive nature of this potentially lethal condition, but symptoms of PML are often mistakenly assumed to be exacerbations of MS,” Dr. Clifford said. “At present, new neurological disease should be considered PML,” he said. Symptoms of PML include neurobehavioral changes, motor symptoms, changes in language, and new visual symptoms; seizures can also occur.

PML is caused by the JC virus detected in the CSF. However, a negative CSF PCR for JC virus assay does not rule out PML, Dr. Clifford said. The sensitivity of the assay depends on the test used and the disease setting.

“The viral titers are so low that many commercial or local PCR assays are too insensitive to detect the virus. Expanding the availability of reliable and ultrasensitive assays like the one available through Eugene Majors' laboratory at the NIH is necessary to detect the virus routinely in this condition,” he commented."

My neurologist friend went on to say: "My guess is that the original test performed checking the CSF for the JC virus was not sensitive enough to detect it, combined with the fact that her neurologist initially "blew off" her reporting the symptoms early on, plus his failure to act promptly. A definite malpractice case for sure, and a disaster just waiting to happen.

If the sister has her story straight, there is a damned good case for malpractice as there would have been at least two and maybe three more infusions during the time she was concerned.

As you know ANY neurological changes should be reported at an infusion check. How she was unable to see a doctor is beyond me.

Many things known and unknown can trigger PML, I think it is now fairly clear that vigilant Docs are required. It is unbelievable she could not get in for two months and if they continued Tysabri during that time they were killing her. Biogen should be notified of her early warning and lack of attention."

I then went on to say: So in essence, it was her doctor's failure to: 1) act promptly which caused the delay in obtaining the MRI; 2) immediately discontinue Tysabri therapy; and 3) have her CFS tested for the JC virus at Eugene Majors' lab at the NIH.

Because those of us on Tysabri all know the risk of developing PML (even though it is still a very small risk), both our doctors and us have the responsibility to stay aware and vigilant of any possible signs which could lead to developing PML.

I have had 47 Tysabri infusions so far, and have been on this treatment for more than three years..., my MS is now stable and I have not had one single relapse since October 2006.

Again XXX, my sincerest condolences for your loss.



  • At 8:24 PM, Blogger MsScarlet said…

    Hi Lauren, It has been a long time since we talked. I'm MsScarlet aka Cathy from MsRefugees. I've been on Tysabri for almost four years. It has been the best thing I've ever done. I haven't had any problems, side effects. I still go where I want to go. Just thought I would say hello. There are not a lot of us out there who have bee on Tysabri for four years!


Post a Comment

<< Home