Return to Ty

[okhoney]

In November after approximately 24 infusions, I decided that I couldn't stand anymore ear infections (12 in 2 years on Ty). Switched back to Copaxone and saw an ENT. He said there was nothing wrong with my ears/sinus' but gave me the 'call and we'll get you in the same day' number for next to time.

At the beginning of last week I started having trouble with double vision so I called my MS specialist and was told they couldn't get me in till the end of May but I could see his PA in 2 weeks. I asked if they were sure that was the soonest because I have 2 kids and my job was to drive them around and I wasn't sure that it was altogether safe at this point. "yes, this is the best that we can do." was their answer. Later as I was trying to fall asleep, I decided that was not good enough since they could use steroids or something to stop the attack on my brain before permanent damage occurred and time WAS a factor! Called them back the next
day and asked again and was given the same answer and then asked if I could leave a message for the PA. That seemed to get the receptionist attention. Within a few minutesI had an appointment, not with the PA but with the Neuropthamologist himself ( who I could hear explaining in the background that I wouldn't be able to make it in till after 9 because of having to drop my kids off at school).

To bring this long story to a close, I saw him and got sent for an MRI. Lit up like a Xmas tree are words you don't really want to hear about your brain. Started on 3 days of IV steroids. The receptionist glibly commented to me as I left, "Wow, aren't you glad we got you in sooner? You're brain could have melted by the 9th!"

Will restart Ty as soon as the paperwork clears and keep waiting for BG 12 to make it out.

[lindaincolorado]

okhoney, sorry you had such an ordeal getting seen by the Dr and then the receptionist (who I think is the problem) had the gall to make that VERY INAPPROPRIATE comment

I hope all goes well with Tysabri and that you do well! Please keep us posted

[Cate Power]

okhoney, was it IRIS (immunoresconstitution inflamamtory syndrome)?

I excerpted the following from an October 2011 presentation at the 5th Joint Triennial Congress of the European and Americas Committees for Treatment and Research in Multiple Sclerosis (ECTRIMS/ACTRIMS) on the RESTORE (Randomized Treatment Interruption of Natalizumab) study, a study designed to evaluate the effect of a 24-week interruption of Ty treatment. Note, a double-blind study, some continued to receive Ty:

***

"Of patients who continued to receive natalizumab, none met the criteria for return of MRI disease activity compared with 44% of the patients receiving placebo, 7% of patients receiving interferon-beta-1a, 40% of patients receiving methylprednisolone, and 53% of patients receiving glatiramir acetate. Perhaps not surprisingly, those with high disease activity before starting natalizumab were more likely to have it return after interruption.

[The] first return of MRI-defined disease activity occurred at around 12 weeks, "and around weeks 16 to 20, we really see the up-tick in patients who were going to have return of disease activity, and then it flattened out somewhat after week 20," Dr. Fox noted.***

Reached for comment, David M. Clifford, MD, from the Department of Neurology, Washington University School of Medicine, St. Louis, Missouri, who was not involved in the study, said he is not surprised that interrupting natalizumab led to relapse.

"This is exactly what was expected. It has been my view that treatment interruption was not rational, and indeed might well put patients at risk for disease progression with no real expectation on my part that it would reduce risk of PML," Dr. Clifford told Medscape Medical News.***

The study was small, with only 175 patients, but it certainly suggested significant risks of discontinuing Ty without a well planned alternative. In this study, the best alternative seems to have been Rebif. However, the report also noted that, "Those patients receiving interferon also tended to have lower disease activity before natalizumab therapy." Curiously, a couple of patients who continued to receive Ty reported relapses, proof of placebo affect.

Another report addressed a 24-year-old woman Dx'd w/ MS at age 12. She had good results with Ty and developed PML 3 mos. AFTER discontinuing.

***
"In October 2010 the treatment was interrupted after 44 doses due to her high risk of developing PML In fact she had all risk factors: duration of treatment, previous use of IS and JCV antibodies seropositivity.***

[Report continues with descriptions of symptoms, MRI results, and other findings "compatible with PML and initial IRIS" and extensive IV steroid treatents that resolved the PML.]

"Conclusions: We report this case to emphasize the importance of close clinical and neuroradiological follow up after natalizumab discontinuation since an indolent PML could develop during the phase of immunoreconstitution."

FYI, indolent: slow to develop or heal; averse to activity, effort, or movement.