Six Month Tysabri Results - Part Two.

Where was I?  Oh yes that’s right.

So I sat down at the kitchen bench, with my cup of almond milk coffee and opened the envelope.  Looking at the envelope now I must have opened it very cautiously and apprehensively, as the sticky flap is not torn at all.

I’m not sure if you have ever looked at a radiological report, but it has a bold comments section -  a summary of the results, which once you unfold your letter, you can’t miss (even if you are trying too). 

So are you ready?  My comment section reads, “No significant interval change since 7 June 2012”.

What does this mean?  Since starting Tysabri 6 months ago, I have not had any activity in my brain that is related to MS at all.  (Some might agree with the statement, I have not had any activity in my brain… since ditching my thesis!)  In essence right now my body is behaving as if it does not have MS.

The findings section reads, “Stable intracranial white matter lesions are again demonstrated with distribution and appearance being typical of demyelination.  There is no evidence of new enhancing or non-enhancing lesions.  There is no evidence of significant callosal or cerebral hemisphere atrophic change.  There is no evidence of PML or an intracranial mass.  There is no diffusion restriction.  The large cerebral arteries and major dural venous sinuses are patent.”

So the wonder drug Tysabri, or as my neurologist put it, the gold standard in MS treatment right now is WORKING for me!  In precisely the way my neuro predicted 6 months ago, with no new disease activity being present – at all.

Am I happy?  Hell yes.  Will I sit back and be content with these results?  Hmmm partially, maybe if after the next MRI in 6 months everything is all clear I can relax and trust Tysabri is going to continually work for me.  It is reassuring to know that many people who started taking Tysabri in its trial stage, have now been using it for 8 years to control their MS successfully – that is with no new lesions.

My neuro also predicted that I would have symptoms disappear that I may have even considered my normal way of being.  Well I know it wasn’t normal but my daily morning ritual of waking up and stretching in bed is now sans the Lhermitte’s sign.  Which was the very tingly, vibrations (a bit like very bad pins and needles) that used to vibrate down my spine and into my legs… and sometimes into my arms.  It was my daily reminder of my MS and on certain days it would predict how I would feel; if it was particularly bad, then my life was ending because my MS was getting worse.  I knew that wasn’t necessarily the case, but concerns, no matter how unfounded you are told those concerns are, can still have an impact on your life.  With a chronic disease like MS, you are hypervigilant in detecting new or worsening symptoms.  Hey, but you know what, I have rarely had the shocking Lhermitte’s sign in the last 5 months or so.

I cannot foresee any reason for me to stop Tysabri.  I do not have the JC virus and my lovely new Tysabri buddy is working for me with no unwanted effects.  One reason to stop, is if my body develops antibodies to Tysabri.  I guess you know this is occurring when your MRI shows new lesions or the cause of you having an early MRI is new symptoms.  I don’t believe this is going to happen to me.

If you are considering starting Tysabri and you are JC negative and have no history of taking immunosuppressant drugs then I would say go for it.  Tysabri may just be the drug to halt the damage your MS is doing to your body until a cure is found.  If you fall outside of this category, ie you are JC positive with a history of immunosuppressant drugs, please take a look at this link Natalizumab-associated PML Risk: June 2012 Update , seriously talk to your neurologist and consider your options (ie do your research), carefully.  Get a second and third opinion if necessary.  This article may also be worth anyone who is taking Tysabri or considering taking Tysabri perusing,  Taking Gilenya after stopping Tysabri doesn't suppress MS reactivation. 

Unfortunately Tysabri is not a cure.  When you stop taking Tysabri, your MS will reactivate most likely where you left off, but maybe worse.  So please do your research, consider your options, talk, talk, talk to people INCLUDING your neurologist and your local MS society. (Have I made my point yet?)  Any medication you are considering putting in your body should not be taken lightly... ever! 

There you go, that’s my post.  Sorry to anyone who couldn’t stand the wait.  I think my life is like a novel… it goes on and on, as do your lives. (If you have no idea what I am talking about, good.  But if you need context to that last sentence then check out the comments section on my last post!)  I like to share my MS stories in case they can help anyone who is in the same or similar situation.  Thanks for visiting and please leave your comments because I love them (and I promise I won't post about them much!)  Until next time. xx