These are two words that I’d actually pay money to have removed from my vocabulary. They come into my head and out of my mouth so naturally and without forethought. And they annoy the daylights out of me. Why? Because they are directly tied into my anxiety issues and those issues drive me insane (pun intended).
Many persons with M.S. face anxiety issues. Sometimes the anxiety comes as a result of physiological symptoms, or sometimes it’s a side effect of medications, and sometimes it’s likely to just manifest itself from all the stress, insecurity, and instability of life with a non-curable and debilitating disease. Heck, I’d be surprised if folks with M.S.didn’thave anxiety issues. Some don’t like to talk about it; especially if they are afraid to be seen as weak or having ‘mental health’ issues on top of all their ‘normal’ M.S. issues. But it’s real folks. Oh so real.
So what does anundercooked, cone headed, redheaded galwith anxiety issues do? She signs herself up for a quasi-controversial M.S. treatment that comes with the fear of an un-curable and sometimes fatal brain infection. And then she proceeds to feel anxious about it 24/7.(She never did claim to be highly intelligent, did she)?
I’m not sure how those of you with anxiety issues deal with them, but I talk about them (or write about them). I research and investigate and I try to reprogram my mind with positive self-talk to challenge all of the fearful, worrisome thoughts that just creep right in. And the hubby is programmed as well; constantly cutting me off when I get into “What if?” mode. I haven’t voiced many of my “What if?” worries about PML out loud to the hubby though. But I can’t get them out of my head. Here’s why.
PML or Progressive Multifocal Leucoencephalopathy is a serious viral infection of the brain. “Encephalo” means brain, and “pathy” means disease. Encephalopathy is a disease of the brain. “Leuco-” means white. Leucoencephalopathy is a disease of the white matter of the brain. It’s most often seen in HIV patients, organ transplant patients, and in folks who have suffered serious bouts with cancer that deplete the immune system.
It also has been seen in three patients on Tysabri. Two died, one lived on afterwards without a cure in sight.
Anxieties are irrationalities. I get that. I also have researched and read all about the ‘odds’ of getting PML from Tysabri. In fact, if one more person tells me that my chances of getting hit by a bus are better than getting PML, I may just walk out in front of a moving Greyhound. I truly do understand. But, when you suffer from anxiety, it’s not that easy to just ignore the threat. Anxiety = irrationality.
But there is hope in sight. I now have been able to at least identify the ‘why’ behind my fears.
If the docs were to tell me to check my face each morning to look for green spots with red circles around them and if spots appeared I should be alarmed about PML, well, that would be easy to manage. Especially if I knew that if caught early there was something that could be done about PML, but it doesn’t seem to work that way. Nothing is easy, particularly being able to discern between symptoms of PML and symptoms of M.S. The symptoms of PML can be mirror images of symptoms of an M.S. relapse. My neurologist told me this right up front and as part of the Touch Protocol system I’ve promised to alert her to any kind of changes in my symptoms immediately.
People with M.S. already face the constant battle of determining if symptoms they are feeling are M.S. related or related to something else. Is this the flu or is it M.S.? Am I just tired today or is it M.S.? Did my hand just fall asleep like a normal person’s or is it M.S.?Now I find myself taking it further, asking if what I’m experiencing is M.S. or a symptom of PML. I get an abnormal pain in my arm, PML crosses my mind. My right eye went a little wacky the other night and all I could worry about was PML. I also consider that what I’m feeling may be a side effect of Tysabri instead. And as much as I’m in “What if?” mode about PML, my biggest “What if?” worry is that I’ll have to come off of Tysabri because of side effects or an allergy.
If you have M.S., you know firsthand the litany of possible symptoms from the disease. Caregivers, too. If you’re not familiar with symptoms, take a walk through the “Symptoms” category here in the Sunshine and you’ll become intimately familiar with what we face. Now compare what you know about M.S. to these symptoms:all of which are diverse, since they are related to the location and amount of damage in the brain, and evolve over the course of several days to several weeks. The most prominent symptoms are clumsiness; progressive weakness; and visual, speech, and sometimes, personality changes. These are symptoms of PML.
Then there are the side effects of Tysabri that can take days or months to actually manifest themselves:
•Urinary tract infection
•Sore throat and runny or blocked up nose
•Itchy rash (hives)
•Feeling sick (nausea)
•Being sick (vomiting)
So with each ache or pain, each clumsy toe-pick through the front door, each feeling of fatigue or weakness, each headache or moment of dizziness, each time I experience cog-fog and mix up a word or two, each time my eyes act a little wacky, (all of which I’ve been living with for awhile now) I have to wonder,Is it the M.S.? Is it PML? Is it a side effect of Tysabri? I really don’t know the true answer so all I can do is reassure myself with self-talk designed to reinforce what I already know.
I’ve been screened and scanned left and right. Apparently the “JC Virus” – the cause of PML didn’t show up in my blood work, or I never would have been allowed to go on Tysabri. Between 80-85% of people worldwide are exposed to this virus, but only a very small percentage ever see it turn into PML. While the virus didn’t show up in my blood work, it could be in my kidneys and there really isn’t a way to screen to see if I’m among the 80-85%. Even if I have the virus, it doesn’t mean I’ll automatically get PML. People usually need to be highly immune compromised for PML to develop. In fact, the three individuals who got PML when on Tysabri (on its earlier days in the market) had highly compromised immune systems and/or were on another DMD that reduced their immune capabilities at the same time as riding the Ty-Train.
I always say that I’m the healthiest sick person around. I haven’t had a cold or the flu for eons. Other than the fact that my immune system keeps attacking my brain, I don’t have an immunity problem per se. I’ve had 23 vials of blood drawn from my body in the last 7 months. I’ve been screened for Lupus and Lyme disease. I’d guess if I had HIV or another serious immune system related disease, it would have reared its head through all of that testing. I passed the series of Touch protocol questions.
The FDA, which only rarely allows a drug back onto the market after deaths, allowed Tysabri to come back for public consumption quickly after the reasons for the deaths were identified. Approximately 26,000 patients are currently on the drug and not one of them has developed PML in the two years it’s been available to the public again. Biogen anticipates some 100,000 patients will be benefitting from Tysabri within the next few years.In clinical trials, Tysabri approximately halved the progression of the disabling effects of MS and also decreased the number of MS attacks by about two-thirds. Now that’s a reward that most definitely outweighs the hit-by-a-bus risk.
I truly believe the odds are in my favor.
I truly believe the odds are in my favor.
I truly believe the odds are in my favor.
I truly believe the odds are in my favor.
(Sorry, just reprogramming my mind a little for an automatic response the next time the “What if’s?” arrive).
Want to learn more about Tysabri? Participate in the upcoming Biogen-sponsored teleconference on July 17th:
In just 2 years, TYSABRI has made a difference in the lives of patients with relapsing forms of MS. As of late March 2008, approximately 26,000 patients were using TYSABRI globally, which is certainly a cause for celebration. This great news supports the high hopes many patients have for TYSABRI.
Join Biogen as they commemorate 2 years of patient confidence with a teleconference on July 17th, at 8 PM EST. To participate, call 1-866-644-8540 at least 10 minutes before the start of the teleconference. When asked for a code, please say “Peer to Peer Teleconference.” During the call, you will be able to hear an open dialogue from patients living with MS, learn about the rising numbers of TYSABRI users, and listen to some of their stories. Visit www.TYSABRI.com to get more info on events, watch video clips of patient stories, and register to stay informed. We encourage you to join the MS Community in celebrating 2 years of hope with TYSABRI.
TYSABRI is a prescription medicine approved for patients with relapsing forms of MS to slow the worsening of disability that is common in patients with MS and to decrease the number of flare-ups (relapses). Because TYSABRI increases the risk of progressive multifocal leukoencephalopathy (PML), TYSABRI is generally recommended for patients who have had an inadequate response to, or are unable to tolerate, alternate MS therapies. TYSABRI does not cure MS and has not been studied longer than two years or in patients with chronic progressive MS.
Important Safety Information
TYSABRI increases your chance of getting a rare brain infection that usually causes death or severe disability. This infection is called progressive multifocal leukoencephalopathy (PML). PML usually happens in people with weakened immune systems. No one can predict who will get PML. Your chances may be higher if you are also being treated with medicines that weaken your immune system, including other MS treatments. If you use TYSABRI alone to treat your MS, it is not known if your chance of getting PML will be lower. Nor is it known if the length of time on treatment with TYSABRI increases your chance of getting PML. There is no known treatment, prevention, or cure for PML. If you take TYSABRI, it is important to call your doctor right away if you have any new or worsening medical problems (such as a new or sudden change in your thinking, eyesight, balance, or strength or other problems) that have lasted over several days. Tell all of your doctors that you are getting treatment with TYSABRI.
Because of the chance for PML, TYSABRI is generally recommended for patients that have not been helped enough by, or cannot tolerate other treatments for MS. TYSABRI is available only through the TOUCH™ Prescribing Program, which is a restricted distribution program. Only prescribers, patients, and infusion centers enrolled in the TOUCH Prescribing Program can prescribe, receive, and infuse TYSABRI. Before you take TYSABRI, you and your doctor must enroll in the TOUCH Prescribing Program and agree to the program requirements. Plan to see your doctor 3 months after the first infusion, 6 months after the first infusion, and at least as frequently as 6 months thereafter. TYSABRI does not cure MS and has not been studied longer than two years or in patients with chronic progressive MS. TYSABRI is not approved for use in patients under age 18.
You should not receive TYSABRI if you have PML or are allergic to TYSABRI or any of its ingredients.
TYSABRI is not recommended if you have a medical condition that can weaken your immune system, such as HIV infection or AIDS, leukemia or lymphoma, organ transplant, or others, or if you are taking medicines that weaken your immune system. Talk with your doctor about all of the medicines you take or have taken. TYSABRI may increase your chance of getting an unusual or serious infection. You should not take TYSABRI if you are pregnant, trying to become pregnant, or nursing.
TYSABRI may cause liver damage. Symptoms of liver damage can include yellowing of the skin and eyes (jaundice), unusual darkening of the urine, nausea, feeling tired or weak, or vomiting. Blood tests can be done to check for liver damage. Call your doctor right away if you experience any symptoms of liver damage.
Other serious side effects with TYSABRI include allergic reactions (e.g., hives, itching, trouble breathing, chest pain, dizziness, wheezing, chills, rash, nausea, flushing of skin, low blood pressure), including serious allergic reactions (e.g., anaphylaxis) and infections. Serious allergic reactions usually happen within 2 hours of the start of the infusion, but can happen any time after receiving TYSABRI. Tell your doctor or nurse right away if you have any symptom of an allergic reaction. You may need treatment if you are having an allergic reaction. TYSABRI may increase your chance of getting an unusual or serious infection, because it can affect your immune system.
Common side effects include headache, urinary tract infection, lung infection, pain in your arms and legs, vaginitis, stomach area pain, feeling tired, joint pain, depression, diarrhea, and rash. Tell your doctor about any side effect that bothers you or does not go away.
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