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petpuppy 09-13-2006 09:45 AM

Finally Back
 
It took some time but I finally found yall.

I'm not doing great. I was put on a high dose round of prednisone which worked well for several months however now my symptoms are worse so again the neuro suggests high dose medrol. My question is is it possible that taking this is what is worsening my symptoms.

I've been diagnosed since 97 all the while dealing with numbness/tingling and occasional flares so I thought after my first round of steroids i was in heaven thinking I can't believe I suffered all that time but according to my neuro he thinks I have new lesions but I'm upset at the timing of preds. and this new development.

Can anyone shed any light or has this happened to anyone?

SallyC 09-13-2006 12:03 PM

Hi Petpuppy, Actually IVSM does not change the disease at all, it only stops or shortens your flare. I remember my first IVSM and wow, I was just like you, thinking it was a cure....but alas, it is not.

I was like, back to normal, but not too long, thereafter, I had another flare, and had more IVSM. But the second time didn't work as well and the 3rd time..not at all. Since Steroids can have some bad sx for your body, I refused it from then on.

But you are not me, and it may work again for you the 2nd time. Just be sure to get a bone density test, to make sure you it's not causing any problems there and watch your blood pressure.

I'm not a Doc and don't play one on TV...just telling you my experiences.:D I hope you are feeling better soon.

Good luck.

petpuppy 09-13-2006 02:08 PM

Last round of steroids I experienced heartburn, migranes and lots of other pretty hard side effects but i found it worth it all in the end.

I was put on prednisone last time and this time Medrol and more mgs but neuro assures me I'm taking less then the first time.

This is awful but I don't trust my neuro - and I have two. My defense is that it's my body and I know what was working and what is now happening and god forgive me but sometimes I'm wondering if they want to keep me on steroids for whatever reason. i know it doesn't make sense but what does is that this disease is frightening and unpredicatable so 6 days a week my focus is on it. I have too many symptoms

Also after the preds. i think my hair got thinner. I don't know what to think. Oh and now I'm informed that I cannot go into the hospital for IV - they have someone come to the house put the line in and leave the medication - no if ands or buts about it. I mean if I don't have enough to deal with

Cherie 09-13-2006 03:27 PM

My first round of steroids was like a miracle. Really lightened the symptoms and gave me some energy but the more I took them, the worse I felt. I ended up being on monthly pulse dosing for two years plus three rounds of 5 days additionally during that time.

As Sally said, I don't think it worsens the MS but it can ultimately weaken you and affect cardiac status and metabolism and weight gain and can reach a point in some people where it has worse side effects than those of the illness for which it is being given.

Sorry you're feeling badly. Glad you've found us.

SallyC 09-13-2006 04:03 PM

PetPuppy, have you and your neuro considered Tysabri? It sound like it would be an option for you?

I know what you mean about not trusting your Neuro. Sometimes I think they are way too Steroid happy. It's your body and your decision. If the steroids aren't helping you, they have a great potential to hurt you. Investigate for yourself and make a decision that is right for you.

I hope you feel better soon. ((((Petpuppy)))))


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