Humble reminder

[lmacalus]

Humble reminder that this while doing great things IS NOT A CURE!!!
I DO feel a MILLION times better but for the past 2 days have had a couple of old altered sensation symptoms "flare up" in my arms & legs, not enough to hurt, but enough to slow me down, be VERY annoying & put me back on a pulse steroid for a couple of days. Not a big deal, but a bit of a BUMMER to have to step on the brake some. I will say tho, when directed by my nero to keep taking the med it is MUCH easier to swallow a pill than to suffer through a shot so I am still 100% compliant & awaiting the 3 month benchmark

Figured this was the place to be BRUTALLY HONEST
Love & Peace to all,
Laura

[Smilingface]

I agree. Doing great things but not a cure. I have reached the one year benchmark in the PPMS trial. I am stronger and my progression has slowed.

I feel that this drug is setting the clock back for me in my disease process.
Not a cure but most definitely a great thing!

[bill3901]

I just started the process of this drug. I remain optimistic, but I'm not sure anything would help at this point.
I would love to hear from someone with PPMS who is on this drug. Did it help?

I was holding a lot if hope for Ampyra and that was a bust.

Im 41 and have been diagnosed since 1997.

Thanks

[CureOrBust]

... put me back on a pulse steroid for a couple of days.

Are there any specific restrictions with this and steroids? They are from my understanding both immune system suppressants.

[lmacalus]

Actually, steriods used as a pulse to contain a flare seems to be fine as that what was used in the trials and by my MD as well. For me it took a single gram of solumedrol which worked completely in 24 hrs. Not bad.
My no-profession understanding is that while they both seem to supress the system they do it via different mechnasims. G redistributes the lymphocyes in the body while steroids will supress the overall system.
I am stating month in two days so in the past nearly 8 months I've needed that 1 dose & that is it... WOW!!!!

[lmacalus]

Still doing really well, am cleaning my own home (killjoy!) and the heat is not hurting me anymore...Yes I still feel hot on hot days but it is no longer like the energy & strength is being zapped out of me. Have survived Disney, California Adventure, Sea World & Lego land with the kids this past month and have not been sacked out afterwards (only adverse effect has been to my wallet!)

Libido still a bit sluggish but vision remains spot-on.

Most importantly, since the one hiccup a few months back I have been A-OK. Usually I have a flare/excerbation sometime in/around June - but this June is passing without incident.

MRI at the end of the month!!!! Will update then - sooner if something else comes up.
Blessing for all,
Laura

[Algis]

Thank you Laura; best to you

[lmacalus]

...but a string of really HOT days is still miserable. Find I need to stay indoors with AC still. Noticed my legs just don't want to move as quickly as I'd like. So G or not - I do remain sluggish in really hot wather.
Keep cool everyone!

[LR1234]

sorry to hear that Laura. I don't seem to suffer from heat intolerance but I have heard it can be very disabling. I hope they work out whats causing it soon x

[lmacalus]

Kso Solumedrol dose 2 (2nd single gram) orally yesterday - doing too much in the heat so calming it down - well as calm as a girl can be on solumedrol

Same effect tho - took my nasty "drink" yesterday, went to bed at a decent hour & this am the pain throughout my right side is gone, headache resolved, flexability has returned. In month 5 now & still really thrilled with my results - still only 2 grams of solumedrol since starting G vs the minimal 14 I would have had over the same time period without G Blessings to all & stay cool!

[lmacalus]

check-ou the 6-mo MRI results - posted under separate subject: 6-month...
Blessings,
Laura

[RedPepper]

... put me back on a pulse steroid for a couple of days.

Are there any specific restrictions with this and steroids? They are from my understanding both immune system suppressants.

Please confirm this information for yourself:
I think there was a fatality by Herpes infection when a person taking the high dose in an earlier trial (1.25mg) was treated with steroids too.