Aa
iv solumedrol
Okay, I've had MS for 13 years. I was just taken off Tysabri in July, I was on that for almost 5 years. I now have to go on Gylena in January, but before I start the new drug...I have to do 6 months of iv steroids. 3 days every month with NO taper! I have just finished my second round...and I'm ready to through in the towel. The side affects of the steroids are at this point almost not worth doing. They are trying to prevent a relapse since I am not on any MS therapy. Anyone else going through anything similar? I can't handle the fatigue, shakes, fever, redness, pain, nightsweats, constipation, irritability, overall feeling of crap!
@ Bob...I wondered what Pulse Therapy was. My doc had mentioned it...but I never gave it a second thought. It is true, you do learn something new every day. And yes...the old lesions have been doing what they do on and off for over a year. Stress brings them all back in a hurry! I'm just hopeful this ACTH works, the IVSM handed me my butt on a platter! I'm still recouping from them and they ended a week ago.
@ Sumana, I really do hope the Tysabri works for you! It's an amazing drug, with a great success rate. I am jealous that you get to be on it. I really did enjoy 5 years of NO relapses. I even forgot I had the MS at times!
Here is to moving forward.....one step at a time! You all really have made this easier for me. I thought 13 years of this disease, ehh....i can handle it. It's amazing how quick it can drop you down a peg or two! Thanks.... :)
@ Sumana, I really do hope the Tysabri works for you! It's an amazing drug, with a great success rate. I am jealous that you get to be on it. I really did enjoy 5 years of NO relapses. I even forgot I had the MS at times!
Here is to moving forward.....one step at a time! You all really have made this easier for me. I thought 13 years of this disease, ehh....i can handle it. It's amazing how quick it can drop you down a peg or two! Thanks.... :)
Bob, I learn something new every day. I sure did not know that IVSM could prevent new lesions. Thank you.
Nancy, I used ACTH. It was so much easier than the IVSM. It didn't work for me but the IVSM wasn't working either. It is why I ended up in the hospital for 30 days. I am on Tysabri now. Just had my second infusion and it seems to be settling things down.
Nancy, I used ACTH. It was so much easier than the IVSM. It didn't work for me but the IVSM wasn't working either. It is why I ended up in the hospital for 30 days. I am on Tysabri now. Just had my second infusion and it seems to be settling things down.
Well...assuming my insurance covers it I'm going to go on ACTH. I was unfamiliar with it until you guys had mentioned it. My doctors haven't used it for MS patients for quite a while because most or all tolerate the solumedrol fairly well. Wish me luck. If insurance accepts it I will start the end of this month. I'd love any feed back you guys may have on it...don't know what to expect.
Thank you Sumana...I go and see my Doc's tomorrow. They are going to get an ear full from me. I am NOT going to do the steroids come hell or high water. It's just too much for me to handle and I can't afford to miss anymore work. I don't get sick time off..I'm only part time and being "sick" damn sure don't pay the bills!
Nancy, thank you for explaining. I haven't been tested yet for the JCVirus and really don't want to be. I feel this is my last chance to stop the damage MS is doing to me. I guess when they do test I will have to face reality.
I am so sorry you are back where you started. I hated my normal, too. I will be sending strength your way.
Sumana
I am so sorry you are back where you started. I hated my normal, too. I will be sending strength your way.
Sumana
I was taken off the Tysabri because I have antibodies to the JCVirus. Long story short with that...if you are on tysabri you run the risk of PML. Well if you have the antibodies to this virus then your chances of getting PML go up dramatically. It was a risk I wasn't willing to take any longer. So if you get off the drug, then there is no chance of PML. Our docs have evidently done a study or found a study that links the 2 together. Right now, the MS is back to "normal"...my normal. I just don't want to do the steroids anymore.
I wish you all the best luck on Tysabri, and I hope it does as well for you as it has for me. 5 years without a relapse...it was an amazing time!
I wish you all the best luck on Tysabri, and I hope it does as well for you as it has for me. 5 years without a relapse...it was an amazing time!
Nancy, I have never heard of using steroids to prevent a relapse. I thought they were used to help lessen the symptoms of a flair. I used them monthly for over a year with Rebif. I also was not given a taper dose. I began with three infusions every four weeks then went to three infusions every four weeks. Nothing slowed my symptoms down. I did use five days of Actar Gel but it didn't work for me. I guess my body just began rejecting the steroids. Long story short I began Tysabri. I had my first dose. I ended up in the hospital for thirty days. I was given IVSM again. I waited forty days and was give my second Tysabri infusion.
What is happening to you is my fear when I am taken off the Tysabri because things are doing so much better.
Wish I had an answer for you.
What is happening to you is my fear when I am taken off the Tysabri because things are doing so much better.
Wish I had an answer for you.
I am not familiar with ACTH? I have in the past gotten relief from the roids, but this time its not seeming to make anything better. And my disease is or was quite under control with the Tysabri. I did "relapse" according to my physical exam. Nothing active on MRI. I loved the Tysabri...I'm not happy that I have to change! I've tried ALL the dmd...Gilenya is the only one left. I'm just frustrated that everything is unknown again!
Wow. I came off meds in January...didn't do anything until they put me on Tysabri in June....had a severe allergic reaction to the Tysabri on my second dose and then did another wash out until they put me on Gilenya. I was having symptoms that entire time but I told them I didn't want the steroids because I always felt worse after I did the steroids.
Did they ever recommend ACTH for you rather than the IV steroids? Do you get any relief from the steroids at all?
Do you have really bad debilitating flares?
Did they ever recommend ACTH for you rather than the IV steroids? Do you get any relief from the steroids at all?
Do you have really bad debilitating flares?
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That is the rub. While you may not have "new" lesions, that doesn't stop ny of the older ones from rising heck. Anyhow, that is one of the ways Pulse Therapy is used. My MS center uses Pulse for most of their IVSM treatments (including when I have had ON.)
Bob