posted
as most know i was dx with ms in 2005 and on feb 12th 2007 they gave me a new drug called tysabri through an iv for an hour and it is suppose to be taken that way each month...that was my only dose because they won't let me do it anymore...
i was wondering if anyone knows if that drug could be the reason i was put in the hosp. 2 weeks later with an attack on my body that has caused me to be bedridden since feb 23rd....(POTS)
i have read where some drugs for ms which i think are mostly immunosuppressants can trigger lyme further.... if i have lyme and not ms then the meds. for ms can make the lyme worse....?
the neuros are claiming that no way the medicine caused the horrible attack i had 2 weeks after the injection... and now i wonder if it did.
any input on why there could be a possible link with ms med. and lyme(making it worse)
sorry if this is confusing just not sure how to ask it......... thanks for any advice hugs>>lisa
Posts: 40 | From ky | Registered: Apr 2007
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
WARNING TYSABRI� increases the risk of progressive multifocal leukoencephalopathy (PML), an opportunistic viral infection of the brain that usually leads to death or severe disability. Although the cases of PML were limited to patients with recent or concomitant exposure to immunomodulators or immunosuppressants {{if you have lyme}}, there were too few cases to rule out the possibility that PML may occur with TYSABRI� monotherapy.
Because of the risk of PML, TYSABRI� is available only through a special restricted distribution program called the TOUCH� Prescribing Program. Under the TOUCH� Prescribing Program, only prescribers, infusion centers, and pharmacies associated with infusion centers registered with the program are able to prescribe, distribute, or infuse the product.
In addition, TYSABRI� must be administered only to patients who are enrolled in and meet all the conditions of the TOUCH� Prescribing Program (see WARNINGS, Progressive Multifocal Leukoencephalopathy; and WARNINGS, Prescribing, Distribution, and Administration Program for TYSABRI).
Healthcare professionals should monitor patients on TYSABRI for any new sign or symptom that may be suggestive of PML. TYSABRI� dosing should be withheld immediately at the first sign or symptom suggestive of PML.
For diagnosis, an evaluation that includes a gadolinium-enhanced magnetic resonance imaging (MRI) scan of the brain and, when indicated, cerebrospinal fluid analysis for JC viral DNA are recommended (see CONTRAINDICATIONS and WARNINGS, Progressive Multifocal Leukoencephalopathy).
Yes it messed with your immune system.Because if you have lyme it downregulates our immune system
The JC virus (JCV) is a type of human polyomavirus (formerly known as papovavirus) and is genetically similar to BK virus and SV40. It was discovered in 1971 and named after the two initials of a patient with progressive multifocal leukoencephalopathy (PML). The virus causes PML and other diseases only in cases of immunodeficiency, as in AIDS, or immunosuppression, as in organ transplant patients. Read virus is very common in the general population Get a LLmd and get on abx's if its lyme you will have a herxiemer reaction.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
Tysabri is one scary drug. I have no specific information, yet how could one possibly rule it out.
Hope you are feeling better!
Posts: 554 | From Naples, Italy | Registered: Jun 2006
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
PML is a brain infection. It has been linked to Tysabri. But Tysabri shows such potential for treating MS, that they decided to continue testing it while keeping a registry of everybody taking it.
I remember hearing a news story about it last year. MS patients were begging the FDA to allow it on the market with a warning because it had given them their lives back.
I would check with the doctors to make sure that the symptoms you had were not symptoms of PML.
This is a new drug, and it is still in research. It is very possible there are side effects they don't yet know about. It is also possible that because you have Lyme you reacted differently to the treatment. Or the POTS may have been building up in your system from the Lyme and you just finally crashed.
There are a lot of ifs. Because it's such a new drug, I doubt you will get an answer.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
treepatrol, what great information.... they did drill me for awhile about the pml and the risk... but when the neuro told me my mri of the brain and spine is much worse he kinda scared me and i thought i better get on something....
when i was put in the hosp . my neuro and the injection center all abandoned me.. my family and the doctor called to get me transfered to them to see if maybe i had a severe reaction to the tysabri and they said to stay where i was at that it wasn't the tysabri..... i couldn't walk anymore and i had severe tachycardia (160bpm)...
then after awhile they some how convinced me it wasn't the med...
i am only feeling better because i have a powerchair and can get out more... but i can't walk 10 feet without my heart going extremely high and i will faint.
thank you so much for the replies
lisa
Posts: 40 | From ky | Registered: Apr 2007
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lisa
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