Hi again,

April 27, 2009 at 10:34 pm

I too tried Oral Pred, low then mod dose, as a second line treatment. Initially had the reccommended ivig treatments, stabilised and kidded myself i was improving just to get the tick so i could be discharged from hospital (in hind sight progress prob wasnt there but i was trying to be positive etc)My symptoms would increase within 10 days of finishing the loading 5 days of ivig so we tried o pred in combination with ivig (hoping the ivig would hold me while the pred started to work. Again i just deteriorated (was on 60 mgs daily) as well as twice weekly IVIG so after approx 4 mths of basically swimming in IVIG and popping pred we tried a triple combination on pulse steriods, immuno suppressant and ivig. From then on the progress began! There are many things to be considered with all forms/combinations of treatments and through full and open discussions with your neuro you should feel happy and safe in deciding your treatment options. Unfortunately the only way to know if you will respond to a sort of treatment is to try it. Some medical conditions may restrict the forms of treatment for you, but i would definately show caution on hitting the top shelf stuff (ie Rituxan) first off. (It is usually pretty difficult to get prescribed as well)
Other treatments may provide all the treatment you need without the added potential higher risk of side effects etc. My immunosuppressant is cytotoxic, and it was a huge mind bender for me to actually take it. At the end of the day though I was a quad and my autonomic system was being affected I had nothing to lose.
I can totally agree with you wanting to get on treatment that shows progress for you. My neuro said to me while i was on the ivig and o pred treatment – “If you see deterioration over a consecutive 3 day period – I want to see you!’ Of course if i had done something mad like fatigued myself one day the i had to but a bad day down to that. However for me it ws like if today i could clean my teeth, and dress myself and then tomorrow had trouble lifting arms to mouth to clean teeth etc, and then next day couldnt do up buttons, I was back in for assessment etc.
Hope this helps.
My understanding though of what to expect to see if pred was for me was a stabilisation and then very gradual increase in strength and ability etc with at least stabilisation and SOME CONTINUAL improvement in a 4 – 6 wk period. If no improvement then i would doubt your chances of pred working for you.
All the best

HI again

November 5, 2007 at 5:08 am

Sorry Skytim,
forgot to mention re some of your questions, as far as the conduction blocks i am sure someone here will set you straight, my understanding though is that a block indicates there is inflammation also hence the need for some form of prednisone.
In a nutshell my emgs and conductions tests showed blocks and prolonged f waves etc indicating, demylenation adn inflammation.
I have also had sensory symptoms, more severly of late during my last relapse, i wasnt that aware of extent of loss of sensation as is gradual and once hands lose sensation you cant regulary or accurately check yourself (unless use the pinprick test etc ) Had burning and tingling in hands and feet at times and a few days prior to my worst i lost full sensation for full length of arms and legs. couldnt feel pin ***** or hot or cold etc up to thighs and alsmost shoulders.
As you ask about response time to ivig, usually on day 2 am a bit worse, day 3 no worse and day 4 showing slight increase in strengh and all upwards from then, saying that the last relaspe wsnt typical, the whole five day course just held me with no improvement really then after that, and while changing off o pred onto pulse methly pred i went on huge dive into full paralysis so started back up on anther 5 day course ivig and then twice weekly ivig of whcih i have reamined on along with starting the pulse methylpred and immunosuppressant. all good so far!!!!
hope this helps. look forward to hearing of similar success for your wife.
I know you will read this as my own experience.

Hi again

July 12, 2006 at 3:52 pm

Dear Dan-

I can’t believe I had to rejoin the forum. Nice to see you are still posting – I lived through Ben’s story and I know your journaling of it has helped other parents.

Ethan is now 16.5 years old. He’ll be a senior in high school and already has a good idea about where he wants to go to college (I won’t say where because I don’t want to jinx him).

We’re going to Israel at the end of this month – our last visit there as a family in 2000 ended with Ethan deteriorating on the trip home and winding up at Children’s Hospital of Philadelphia with GBS. We’re only hoping for no crisis this time around (although the political situation is disturbing enough).

All the best,