Hi Lisa & Vicki,
After my first experience with Solumedrol when I got my dx in 1998 I have done everything possible NOT to take steroids again. They put me on a chemically induced high that left all of my systems in a mess for months. I never want to take any steroid again.
My neuro, who has been with me and whom I have trusted since dx, recently stopped working for health reasons. We have another MS dr at our hospital, but I haven't gotten to see her yet. I know she's OK, but I don't know if I'll be able to have the same kind of relationship with her. I'm a little nervous about the change, but there's nothing I can do about it. I hope it all works out and that my neuro's health improves enough for him to come back to work.
Feel as good as you can 
.
Maris
Maris,
It's a bit scary to have to see a new doctor, even if you know that they are good. I hope that your doctor is able to return to work by the time you need him/her.
When I've done 5-days of Solumedrol, I know that I will be indisposed for 3 weeks at least. It's very hard on the system and I end up withdrawing from all responsibilities. I finally learned that prednisone and I don't get along. Once I tried a different oral steroid as a taper, my experience improved.
Oddly enough, only getting 1-day of Solumedrol is really not that hard on the body. For one night, I have the "I can't get to sleep until 5AM" syndrome although I'm really tired. The way it kept the symptoms much more quiet (for both MS and RA) was really nice. But you can't continue to do monthly pulses indefinitely. At least that's the view my doctor has.
Hope you are doing well and surviving the weather. BTW, what type of weather do you have this time of year?
Lisa
Hi Lisa,
The weather here on our desert mt is probably the best in the Middle East. We get some very hot days, occasionally over 100 F, but with only 15-20% humidity it's not bad. Most days are in the 90s and nights usually get cool (+/- 70s ) with beautiful wind. The last couple of days we haven't even needed to turn on our ceiling fan in the bedroom. Open windows were sufficient 
. We have no rain in summer, and not much during the rest of the year either.
You're welcome to come and cool off .
Hugs,
Maris
Hi Lisa
Another cruise trip to Alaska!! How awesome I think cruises are the way to travel and hope someday to be able to do it more!!
A friend recently told me she was taking a cruise in Vietnam, it sounded great! You are so right about physicians trusting us as we also learn to trust them!! My time with pulse steroids has finally ended. I am now taking the new oral med, which is so far good!!
Take care of yourself sounds like you've been on a whlrlwind!
Gretchen
Hi Gretchen!
The cruise was really nice! Yes, another one to Alaska. Rob's mom really wanted family to go on a cruise to Alaska (and I believe she was shocked and a bit sad that we went on one last year without including anybody else). At first, I was a bit reluctant because there are so many places in the world where I haven't been. But we were able to stop at some different locations and experience different things. I had a good time.
Wow, so you're on the new oral med? And liking it so far. I'm really, really curious to see how this works out for you. Are you still doing Rituxan? I had another round in March this year. We pushed it beyond the 6-month interval since I wasn't flaring at all at that point. But I'm sure that the pulse steroids were responsible for that.
I started to flare a bit in January and saw my rheumy. Then we waited to see if it would get better, stay the same, or get worse. Well it didn't get any better so we went for another round. The result hasn't been as dramatic as the other two rounds, but maybe that's because we waited so long? Or I was really liking the pulse steroid effect? But at least things are not bad at all.
Ok, so you've got to keep me informed about Gilenya!
Lisa
Hi Gretchen,
I'm also very interested in hearing about the Gylenia We still don't have it here and I don't know if I'm a cadidate being that I'm SPMS.
I'll meet my new neuro in Oct, I think, if the drs' strike is over by then. I have to check out her attitude about changing treatment that seems to be successful (Betaferon). I think it also causes me all kinds of weird side effects.
Anyway, feel good and good luck with the G.
Peace & Serenity,
Maris
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Hi Lisa,
You are so right. It is important to have an open, honest relationship with your health care team - both ways. That is of special significance when traveling where you do not know doctors et. al.
It might be a good idea to carry your "insurance" even when you don't feel anything coming. MS is not concerned with when or where surprise flares show up, and warnings are not always included.
I'm glad it worked out, and I hope you had a great trip.
Hi Vicki,
I had a fantastic trip! We flew to Seattle and met up with some of Rob's family who were joining us on the cruise. Boarded the cruise to Alaska the next day, visiting Juneau, the Hubbard Glacier, Sitka, Ketchican, and then Victoria, BC. Back in Seattle we met up with some of Rob's friends who took us to several other interesting places. I finally got to see Mt. Ranier from the distance as the sky was clear. And on our final Sunday, we were able to spend the day with one of my college classmates/colleagues from Indiana University - another horn player.
Lots of fun, but definitely a whirlwind. I crashed once I got home and kept debating whether to call the doctor or bring out the steroids. Just in the last 2-3 days, I have begun to feel like myself again.
I'm very lucky to have the medical team I have. And even more fortunate that my doctor's keep each other in the loop. Well, actually, I'm told that my primary doctor doesn't send reports out to my neurologist or rheumatologist. But the specialists do send reports to each other and my primary.
How are you surviving that Texas heat? My cousin (who lives in Arlington) tells me that Saturday was supposed to be 110 degrees and last Thursday was a downright cool 104 degrees as a high. I'm lucky that during my visit to Oklahoma last month, the highs were contained in the 90's.