#MSBlog: If you are natalizumab, or Tysabri, and are worried about PML this post if for you!
Epub: Lindå H, von Heijne A.Presymptomatic diagnosis with MRI and adequate treatment ameliorate the outcome after natalizumab-associated progressive multifocal leukoencephalopathy. Front Neurol. 2013;4:11. doi: 10.3389/fneur.2013.00011.
Background: Natalizumab is a monoclonal antibody that prevents inflammatory cells from binding to brain endothelial cells and passing into the brain parenchyma. Natalizumab is a highly effective treatment for relapsing-remitting multiple sclerosis (MS). Progressive multifocal leukoencephalopathy (PML) is an opportunistic brain JC virus infection that has been shown to be associated with natalizumab treatment.
Epub: Lindå H, von Heijne A.Presymptomatic diagnosis with MRI and adequate treatment ameliorate the outcome after natalizumab-associated progressive multifocal leukoencephalopathy. Front Neurol. 2013;4:11. doi: 10.3389/fneur.2013.00011.
Background: Natalizumab is a monoclonal antibody that prevents inflammatory cells from binding to brain endothelial cells and passing into the brain parenchyma. Natalizumab is a highly effective treatment for relapsing-remitting multiple sclerosis (MS). Progressive multifocal leukoencephalopathy (PML) is an opportunistic brain JC virus infection that has been shown to be associated with natalizumab treatment.
Case report: This is a report of PML in an MSers after 44 monthly infusions of natalizumab. With the aid of a routine Magnetic resonance imaging (MRI) scan, PML was detected before any unambiguous clinical manifestations had emerged. PML was then treated with plasma exchange to accelerate removal of natalizumab. Mirtazapine and mefloquine was promptly added and approximately 1 month after plasma exchange, when an immune-reconstitution-inflammatory-syndrome appeared, steroid treatment was initiated. Steroid treatment was then continued until no virus could be detected in the cerebrospinal fluid. The outcome was favorable.
Conclusion: This case clearly illustrates the importance of an early, presymptomatic, detection of PML, and an adequate treatment. The authors’ also propose that surveillance with MRI scans, every 3 months after 24 months of treatment, should be performed in JC virus antibody positive natalizumab-treated MSers in order to detect PML in an early phase.
“This case report illustrates that early detection and treatment of PML can result in a good prognosis for MSers on natalizumab. However, the recommendation that 3 monthly MRIs is the way to do this is premature. This strategy will need to be studied formerly in a prospective study to see if it works and is cost-effective. In the NHS, and other resource-restricted healthcare systems, MRIs are expensive and as a result restricted. Simply scanning someone every 3 months, without data to support this practice, is not feasible. At the moment we scan JCV-serpositive MSers on natalizumab annually and JCV-seronegative MSers every 2 years. Why? We do this to re-baseline them in case they develop a complication on natalizumab. A new baseline scan provides you with something to compare a new scan in the future with. Why do we do this? When MSers start natalizumab their scans usually change; i.e. some lesions regress or even disappear. In addition there is some pseudoatrophy; this refers to the phenomenon of the brain shrinking when inflammation resolves. All these factors change the way the scans look and this makes it difficult for a neuroradiologist to report new or atypical lesions that could be due PML.”
“This case report illustrates that early detection and treatment of PML can result in a good prognosis for MSers on natalizumab. However, the recommendation that 3 monthly MRIs is the way to do this is premature. This strategy will need to be studied formerly in a prospective study to see if it works and is cost-effective. In the NHS, and other resource-restricted healthcare systems, MRIs are expensive and as a result restricted. Simply scanning someone every 3 months, without data to support this practice, is not feasible. At the moment we scan JCV-serpositive MSers on natalizumab annually and JCV-seronegative MSers every 2 years. Why? We do this to re-baseline them in case they develop a complication on natalizumab. A new baseline scan provides you with something to compare a new scan in the future with. Why do we do this? When MSers start natalizumab their scans usually change; i.e. some lesions regress or even disappear. In addition there is some pseudoatrophy; this refers to the phenomenon of the brain shrinking when inflammation resolves. All these factors change the way the scans look and this makes it difficult for a neuroradiologist to report new or atypical lesions that could be due PML.”
“The question of whether or not we should scan JCV-positive MSers on natalizumab more frequently than annually, is an important one. if you are on natalizumab could you please answer this survey below to see what is happening to you and to see how practice varies across the world? If you know other MSers on natalizumab can you please forward them the link to this post. For this survey to be meaningful we need at least 50 respondents from your country.”
Since last month 6 more people with Tysabri-induced PML have died. Total PML cases as of Feb 5th, 331, dead 76. Yet, not enough casualties to call Tysabri off for JCV-positive patients.If anyone dares to talk about the risk/benefit ratio of Tysabri I challenge him to stand in a room with 76 corpses.
I am sure you could find another 76 corpses who have died from ms complications. and another 76 who wish they were corpses. To be honest you ruin this site for me.
Do you prefer the term "non-responders"?. Truth is what it is, has no flavour. The Tysabri death toll could decrease sharply if doctors ceased prescribing it to JCV-positive patients. Yet, greediness prevails under the veil of "informed consent".
When JCV positive patients decide to use Tysabri they have good reasons for it.Who are you to decide for them
Then why are doctors for? To advise, or just explain drug side effects?
Thay can advise but the final decision has to be the patient's. I believe most neuros DO advise JCV+ patients to switch or stop Tysabri. Some patients want to continue despite that and they should have the choice. I know of at least one person who refused the JCV test, being so certain about not stopping
After 12 years living with MS I had 22 infusions of Tysabri before stopping after i had my venous issues corrected with great success.This was against the advise of my neurologist who said stopping the drug could lead to some serious adverse effects (i was not told this when i started the infusions)I had no adverse effects after stopping. This surprised my neurologist.The Tysabri had no beneficial effect on my disability in nearly two years but just short of two weeks after my CCSVI treatment, i had gone from an EDSS score of 6.5 to an EDSS score of 2.I no longer fear MS and will never again take these dangerous medications.
My wife's firts treatment was rebif, but it made her worse and her neurology decided to stop rebif, which was very good thing. Next treatment offer was tysabri, which we thought couple of days, and we chose not to take it. So wife's "treatment" was basically very healthy diet, some supplements (expecially D) and exercise. Winter 2009/2010 her symptoms (fatique, weakness in right side, and mental issues, brain fog, low moods). Next treatment was angioplasty in summer 2010. She really got optimal result and her symptoms have been gone since that. Im very happy that she is not on tysabri, fear of PML and other issues is just too big.
how can angioplasty 'mend' the scarred nerve tissue for these symptoms to be so much much improved I dont understand – how can this ccsvi treatment possibly help spinal lesions? not possible. I am sorry I truely believe if this was a cure my neurologist and my nurse would be doing everything in their power to get me and other patients on it. There would be indisputable evidence for it – if it was true. I know the current drugs arent ideal but what in life ever is, we still dont have a cure for the commen cold. I have fear of PML, I have fear of MS and I have fear I will get run over by a bus.
As MR-scanners are getting more common, we recently got one in my small communty of 75 000 people, I cannot see the harm of letting JC-pos. have a scan more frequently. I for one would feel much more safe. I'm not JC-pos but I have a lot of friends who are. Why not make it a part of the treatment protocol and let the drug company pay for the extra scan. So then you could have a scan every 6 months. Furthermore I imagine that less and less people that are JC-pos will start treatment with Tysabri as there will be more options and then I'm not thinking of angioplasty.//Swedish Sara