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Julie  Stachowiak, Ph.D.

PML Symptoms

By January 18, 2011

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Balance problems? Fatigue? Weakness? These symptoms probably sound all too familiar to anyone living with multiple sclerosis (MS), as these are just a couple of the many MS symptoms that we live with. However, they are also some of the symptoms of PML - progressive multifocal leukoencephalopathy - the dangerous brain infection that is associated with use of Tysabri.

As I mentioned in my previous blog, Is Tysabri-Related PML Underdiagnosed? the similarities of the symptoms of PML could lead people with MS and their doctors to mistakenly believe that they are having an MS relapse, rather than recognizing the symptoms of PML. This could result in delayed diagnosis of PML, a disease where a quick diagnosis and treatment could significantly limit brain damage.

While many of the symptoms of MS and PML are similar, there are also important differences. The symptoms of PML tend to be more rapid in onset and more severe. There are also a couple, like seizures, that are far more prevalent in PML than in MS (although they do happen in MS, too - Seizures as a Symptom of Multiple Sclerosis).

I've put together an article with more detail about the symptoms of PML and how they differ from the symptoms of MS. If you take Tysabri, you might want to print this out and keep it handy, as well as share it with loved ones, who may recognize our symptoms before we do. However, I'll repeat my bottom line - if you are on Tysabri and feel like you might be having a relapse, or feel any strange or more severe symptoms, contact your doctor. Request that he or she run tests (mainly a lumbar puncture to look for JC virus) to rule out PML.

Read the full article: Symptoms of PML (Progressive Multifocal Leukoencephalopathy)

Comments
January 18, 2011 at 5:42 pm
(1) tuk says:

While your theory likely has some probability, I believe you miss the target. Sure, PML can be diagnosed tardy due to the similarities with MS relapse symptoms, but the untold story is that many believe PML to on occasions be misdiagnosed as MS in patients that never had MS. There is a strong belief amongst many that negligent doctors have unfortunately and sloppily mistaken PML as MS due to the similarities in symptoms and MRIs.

January 19, 2011 at 7:10 pm
(2) *karendianne. says:

I thank you for this EXCELLENT article. It pulls together all the important facts we need to know.

January 19, 2011 at 7:45 pm
(3) Gothic Gourd Girl says:

I say, just don’t take Tysabri. I know of someone dying right now of PML. Why take that risk??? They took it off the market for a reason, you know. I know the doctors who fast-tracked it on the market.

If you think you have no other treatment options, get yourself into a clinic and get treated with angioplasty. MUCH safter than Tysabri….trust me….or NOT and do the research….

Don’t become a statistic…Tysabri…stay away!!!

January 29, 2011 at 4:30 pm
(4) krh0505 says:

Tysabri has (so far) stopped the progression of my MS, while previous treatments did nothing for me. I had 1 1/2 years of constant relapses. I’ve had 15 Tysabri infusions and haven’t had much concern about getting PML. I haven’t felt this good in a long time, and my last MRI’s in 11/10 showed no new disease activity. BUT, with the recent information on additional label warnings the FDA is requiring I’m feeling a bit concerned. I intend to talk with my MS doc at my next appointment (6/11) about taking a “drug holiday” after 24 infusions. I’m participating in a clinical trial and was tested for the JC virus (blood test, not LP), I’m fortunate it was negative. Not sure what to do, but have confidence in my doctor and feel we’ll make a good decision as a team after weighing the pros and cons of Tysabri. The FDA statement said the benefits of Tysabri still outweigh the risks. I use an infusion center that is well aware of the risks, follows the TOUCH program requirements and has very compassionate, observant RN’s. I feel like I absolutely have the right team in place to manage the use of Tysabri with me. On second thought, I may have just rambled enough to decide against the drug holiday!
My best to all of you that are living with MS, stay positive and don’t let it win!

June 25, 2011 at 7:32 pm
(5) LadyMaxine says:

I just got word that my dear friend has the JC virus from taking
the Tysabri infusions. She has had MS for years and now she is dying. She had brain surgery 6/25/11 for a biopsy. Her immune system is shutting down. Please do not take this medication!!!

January 30, 2011 at 12:35 pm
(6) Doug Crawford says:

Tysabri has been wonderful for me. I have been on Tysabri for over 4 yrs and I have improved from bed ridden to wheelchair to walker then cane and now can walk without the cane for about a mile at a time. I have over three years of stable MRIs.
My quality of life without Tysabri was not good at all.
For me we looked at the risks and chose Tysabri
.
There is a test blood test for the JC virus and December of 2010 I tested NEGATIVE for the virus so you can test for the virus.

Drug holidays do not really work some patients have an exacerbation within six months. Testing has found that a patient who has been on Tysabri for two years or more retains the drug in their system longer up to two months and can adjust there treatment from every four weeks to five or six weeks.
Like the comment above I trust my Doctor and believe the benefits outweigh the risk.

March 8, 2011 at 8:29 pm
(7) IndianaStacey says:

I participated in the JCL antibody study in February. My doc called me today to say that I tested POSITIVE for the JCL virus. I have been on Tysabri over 4 years. I recently added Vitamin D3. My quality of life is wonderful. I walk rather than use my scooter. For the first time in about 20 years (diagnoses 26 years ago) I don’t have foot drop. I am going to review this information with my doctor and make a decision about the treatment. It is hard for me to just quit something that has worked so well for me. At the same time, I am scared of the new information. I’ve tried the other therapies…except the oral drug. If anyone has taken the oral drug, please give me information as to your success or side effects.

November 2, 2011 at 3:47 pm
(8) Brooks says:

My brother told me today that he tested positive for PML. Does this mean that he has it or just prone to it. He has JRA and took Embril for that which gave him MS and now has PML from the infusions. What next??

February 22, 2012 at 3:44 pm
(9) Jen says:

Ive been taking Tysabri for two years now..unfortunately JC virus test was positive. my neuro asked me what I wanted to do and I explained to him that Tysabi is working for me and I wanted to keep with it regardless of the risk because I’ve seen what ms is capable of and if risking my life with this drug that is keeping me relapse free then so be it. This disease is awful for many.. I used to think it wasn’t that bad but after a series of relapses changed my mind. Iam now learning to walk for the third time in 3 years. I believe in assisted suicide for this disease. I didn’t used on think it wasn’t that big of deal but my experience and that of other ms patients I have met let me know death is a better road to take than the path ms will eventually take me on. So for now my therapy is Tysabri and prayer. As long as God is watching out for me and my treatments are working I will continue on Tysabri.

March 2, 2012 at 12:39 am
(10) Ozzy says:

I agree with Jen 100% my life with ms hasn’t been easy. N death would b the best brake I could get having ms is terrible I am also on Tysabri only had 3 infusions n I say if I get pml so b it . I will just refuse any treatment for it. The quicker I’m gone the less stress me or my family will have In the future

March 22, 2012 at 4:59 am
(11) A White says:

I have MS. Today my doctor told me I have the JC virus. I can’t sleep right now which is why I am posting this comment. I have been on Tysabri for 15 months and am having major problems speaking clearly. I was told myMS lesions were in the speech areas of my brain, so I went along wth this. I also have had the worse probleims with balance that can be imagined, it is so bad, that one day I was going to the toilet slid off and fell in the tub. I laughed when my daughter came in to see if I needed help! My doctor told me today she would put me on a 3 month holiday from Tysabri. I am very scared and depressed. I don’t know what to expect. I am scared, how long? Tell Ozzy to have the doctor give the blood test for JC virus.

April 18, 2012 at 9:08 pm
(12) Susan says:

My husband has been on Tysabri for 3 years and also tests positive for the virus. We have decided to continue for now on the drug.
In the last week he has developed a sharp pain in the right side temple area of his head intermittently. I have looked it up and doesn’t seem to be a common side effect….any thoughts?

Susan

April 29, 2012 at 7:25 pm
(13) David says:

I was diagnosed with MS about 12 years ago, and have been on Tysabri for 4 years. I recently tested positive to the JC virus. I’m told by my neuro that about half the population tests positive for JC, but most do not go on to get PML. Those that do have a 30% chance of dying or severe disability, he says. Tysabri has been wonderful for me, with no new lesions on MRI’s for last 3 years. Neuro says Gilenya tablets ~ 60% effective in reducing relapse frequency and severity, Tysabri about 70% -90%. I’ve decided to stay on Tysabri, mainly because I had an active MS disease path before it, so a drug holiday or the reduced effectivenessof Gilenya would expose me to what I see as a greater risk of signifcant relapse than getting PML. Incredibly personal decison dependent on individual diagnosis and expert advice, don’t see how anyone can say blanket Yes or No. If you believe in god, pray for me and my family.

July 2, 2012 at 5:17 pm
(14) K in FL says:

I was diagnosed with MS in 2006. I went without any treatment other than special diets, exercise, etc. for two years and while these were good for my body overall, I continued to have mild-to-moderate relapses concurrent with new disease activity in the brain. When I finally fell down a flight of stairs after momentarily losing feeling in one of my feet, I decided to start drug therapy. I was on Tysabri from 2008 to early 2012. I want to tell everyone who doubts the efficacy of this drug that it put me in TOTAL REMISSION for those entire four years. And yes, I am JC virus positive. I only went off the drug recently after new data was released that suggested a much higher risk of developing PML AFTER 4 years and in JC virus positive patients. Now I’m on Copaxone until the FDA approves the new oral therapy BG-12. I have to inject myself daily, it is very painful and it doesn’t work as well. But my real reason in posting this is to clarify a couple of things for other posters and for people with MS: Tysabri does NOT “give” you the JC virus. The JC virus is everywhere, and is extremely common. Tysabri and other immune suppressants reduce your immune system such that it reduces your body’s immune response and thus your MS activity, but by the same token your chance of developing opportunistic infections also increases. And because the JC virus is so pervasive, anyone can get it at any time. If you are already carrying the JC virus or acquire it while you’re on Tysabri, you have a greater risk of developing PML.Tysabri is not the only drug to carry a risk of PML, by the way. It has just received a lot of media attention. Second, no drug (such as Embrel) can “cause” MS. The cause of MS isn’t known, but it is thought to be activated by any number of genetic, environmental, physiological or chemical factors. Anyway, Tysabri stopped my disease progression and symptoms for 4 years. During that time I was able to work, exercise and feel like I felt BEFORE I had my first MS attack–e.g. perfectly normal and healthy. I feel like it bought me 4 years of fantastic quality of life, and I am anxiously awaiting the approval of BG-12, which has an excellent safety profile and will likely become “the” MS therapy of the next 5-10 years. To all those who have MS or who love someone with MS, don’t give up. Don’t allow fear to keep you from good therapies and new advancements. Exercise, surround yourself with positive influences, work at something meaningful to you and be your own advocate.

September 24, 2012 at 6:16 pm
(15) Believe in it says:

I have been on tysabri for over 5 years. I recently tested positive for the JC virus. The chance of developing PML is less than 1 %. To me taking this medication: the benefits greatly outweigh the risks. I am able to walk and have not had another relapse since I started the Tysabri. Compared to having one every 3 months with disease activity on the MRI’s.

Good Luck to those dealing with testing positive with the JC virus.

October 12, 2012 at 7:28 pm
(16) Donna says:

My sister in-law has had MS for 14 years. She started taking tysabri when nothing else would work. She was on it for 31/2 years. She tested positive for the JC virus. Three months ago she lost all feeling on her left side. She tested positive for PML and spent 7 weeks in the hospital. They did several blood washes to get the tysabri out of her system and loaded her up on steroids. She started to get some feeling back and was sent home to do physical therapy, but she still cant walk, take a bath on her own or even sit up without help. She is now back in the hospital and was told the PML has grown 3X the size it was. The only hope she has is for her immune system to kick in and fight this virus. I dont say all this to persuade people one way or the other. I say this so you know the possible outcomes. When you go over 24 months of treatments and test positive for the JC virus the chance of getting PML jumps to 11%. My sweet Lisa is a fighter and we are all praying with everything we have!

April 1, 2013 at 5:58 pm
(17) Heather says:

My dad just had the blood test to see if he had the JC virus, and it was positive…so now his neurologist won’t let him take tysabri because she said it will cause PML and he would die!! We, as a family are not sure of the course to take now, but I guess the doc said there are other options for treatment!!! My dad is so depressed and doesn’t really care about his life anymore, he is only 60 and has 8 grandchildren that want him around as well as his wife and 3 kids!!! He can’t walk on his own, has to use a walker and that is scary….I am his oldest daughter and need some advice/ help…thank you!!!

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