Wow -- I sure could use some good thoughts about now! This is kind of a last resort to maybe help with my general weakness and legs refusing to move at all (a recent development).

Maybe some of you remember that I'm allergic to solumedrol, big nasty hives, so they use Decadron instead. Still get all those "wonderful" side effects but no hives. Yesterday was the first day of three. At least they persuaded my insurance company to let the home health nurse come here and give it to me!

Haven't even seen a neuro in over a year so was kind of surprised he prescribed it by phone???? However, I was really taken aback when his nurse relayed the message to me that my neuro said he didn't really think it would help. Encouraging -- thinking positive -- I don't think so. This reinforces my desire to go somewhere where there are actual MS specialists and get a second opinion, even after all this time.

The occupational therapist coming to the house has given me some really good suggestions and contact people. Of course you know our "MS brains"......it will take awhile for me to sort it all out!!!

So, the roid headache is here, my body temp feels a couple degrees higher and naturally they have me take Lasix to prevent fluid retention -- as if my bladder problems weren't bad enough all ready! And I had forgotten that shot in the stomach to prevent blood clots.

Sure hope this helps!!!!! Good thoughts would really be appreciated! Thanks everyone for being there!!!

Hi Judy,

Sorry you have to deal with the 'roids. At least it's only a three day round. I hope it goes fast and the side effects are few.

I've had them twice, five day rounds with prednisone tapers after. They played havoc with my entire system. I had high blood sugar, fuzzy vision, thrush in my mouth (the first time, yuck) and EXTREMELY high blood pressure. The first time I ended up in ER and spent the night in ICU. They discovered I have a 50% blockage in one of the main arteries leading to my kidneys.

It was hell for me both times, not to mention the hell my husband went through for at least a month from my moodiness after the steroids.

I can feel your pain... ! Here's a big cyber hug for you!!

Hi Judy,
I just went to MS clinic after 8 years of only seeing local neurologist. What a difference. I'm really sorry I waiting so long. I will also be doing steroids after bone density results come in and have had cervical and spinal MRI. Apparently I have inflammation in brain and roids will help.

I had been asking local neuro for those MRIs for a while and was told it wasn't needed. She has a whole treatment plan to discuss after that. Maybe I'd be walking if I'd done this earlier.

Ah well, can't change the past. Onward. Hope the Roids help. Sending positive Qi.
-Susan

Hey Judy! Sorry you are having problems!

I must say that you have every reason to be doubting your Neuro! First, it is highly unusual, and in my opinion, irresponsible, for him to move forward the way he did without seeing you for a year! Don't get me wrong, I am glad he did b/c you are getting treated

Second, if he did not think it would help, why in the world would he rx it?!

Of course, this is just my opinion and not everyone feels the same way, but I think your best bet is to find an MS Specialist. I just found one after 14 years of being dx'ed, and it was the best thing I ever did

I mean, what is better than someone who's #1 priority is us and OUR illness?

Oh, was it you I told that I was also allergic to Solumedrol, that I had the anaphalactic reaction, and asked you about Decadron?? I never heard of it until you, as I was put on ACTH. I have to research the differences in the 2. How do you like the Decadron, as opposed to the IVSM? I mean, besides the reaction part! B/c didn't you get the treatment a few times before you became allergic?? I just know that the ACTH made me gain like 20 lbs in ONE week!

Sorry I rambled! I hope your treatment treats you right!

Oh Judy, bless your heart....ROIDS!!Yuk Yuk Yuk!!

I do so hope that this helps you make a comeback. I will have everything crossed for you and saying a few prayers, too.

If the Doc allows it, take a valium at night to help you sleep. My Old Neuro always gave me Valium and Vit K with the Roids. She was a pro...she retired and I miss her.

I think what Dr. (no bed side manner at all), Neuro meant, was that if you are SPMS, then the roids problably won't change your symptoms much. He's giving you the steroids to stop the inflamation and flare.

Come here and rant all you want while you are in steroid hell. I promise, I'll listen.

I hope they help, Im sure they will ( think positive) you'll be in my prayers.

How are you doing, Judy? Ok, I hope.

Thinking about you.

You guys are the greatest!!!! Thank you so much for all the encouragement!

I ended up only having the decadron for two days since all the veins in my arms, wrists, etc., were "blown". That was using a small butterfly needle thingy too. Those two days I felt GREAT!!! Didn't even go to bed Sunday night and had so much more energy. But........as you all know......the "crash" arrived Tuesday. I slept all day, got up about 10 pm and am still up for a little while longer, but feel like a wet noodle about now. Hopefully after some more sleep, I'll feel better again.

Even with the crash, there is a difference with my overall weakness. My legs will move a couple steps, not nearly as dizzy, etc. Of course I know being spms, it's not going to do a whole lot with some of the symptoms, but even a small improvement is welcomed!!

Had to take Lasix along with it to prevent fluid buildup and it does seem to have helped with the "weight" in my legs. My ankles are still "lumpy" with the lymph edema but don't seem as heavy.

Please forgive me if I don't remember who asked me what questions here, should have written them down, but as for the difference between solumedrol and decadron, the decadron doesn't seem as strong (?) The side effects aren't as bad with no allergic reactions for me. Maybe not having it five days makes a difference too, not as irritable, hungry, etc. The only thing I usually get is a headache and flushed face/neck.
I don't do a taper either which gets the "bad stuff" out of my system quicker. Hopefully I'll still feel some of the good after this withdrawal part is over.

Hope I can stay awake today to enjoy this beautiful spring weather.......finally!! Thank you all again for your good thoughts, hugs, etc. It really makes a difference knowing someone cares!!!

That's great Judy Really glad you have some movement back!

I think it was me who asked about the Decadron. I was curious about it since I am now highly allergic to IVSM, which is what I have always used. At the time I became allergic, it was like losing a best friend b/c I did not know there were other things to help.

I was able to get the ACTH treatment. Can't quite remember, but the se's may have been worse as far as HUNGER, lol and weight gain and hyperness! It definately helped though

What I am curious about is what the Decadron is, does? (like ACTH is a hormone that makes your brain produce it's own steroid? or something like that, lol.) Is it given the same way as IVSM? You don't HAVE to do a taper? Can do at home?

Thanks, and again, so glad you got some back I also believe I am now SPMS I guess it makes you appreciate ANY improvement .