tag:blogger.com,1999:blog-1995645300335467747.post7935708916962486809..comments2023-05-20T05:15:48.191-05:00Comments on The Wheel of Fortuna: No way back. No good options left.stevehttp://www.blogger.com/profile/18134766859291227041noreply@blogger.comBlogger5125tag:blogger.com,1999:blog-1995645300335467747.post-44199454288803132232009-08-30T09:18:10.773-05:002009-08-30T09:18:10.773-05:00Oral prednisone made me feel "unwell," t...Oral prednisone made me feel "unwell," the IV always made me feel WELL. I took the oral ONCE and never again, IV on/off for 8 years---all good. (Though the good effects eventually died down, BUT I have a friend DX just like me and she STILL takes it every onth or so and swears by it, she IS doing very well too. (20 yrs out)Diane J Standifordhttps://www.blogger.com/profile/11862850657925658079noreply@blogger.comtag:blogger.com,1999:blog-1995645300335467747.post-49770603570125529872009-07-02T11:00:38.306-05:002009-07-02T11:00:38.306-05:00Thanks for the additional data points, ladies.
BR...Thanks for the additional data points, ladies.<br /><br />BR has started a three day course of 1000 mg/day oral Prednisone. So far, so good. Appetite is up, which is a big plus.stevehttps://www.blogger.com/profile/18134766859291227041noreply@blogger.comtag:blogger.com,1999:blog-1995645300335467747.post-80039703943504996292009-07-02T07:03:37.235-05:002009-07-02T07:03:37.235-05:00Steve, I can not believe the way the Dr. acted tow...Steve, I can not believe the way the Dr. acted towards you. I am sorry about that.<br /><br />As for the steroids... I have tried the oral but not very much luck with helping me at all. <br /><br />When it comes to the infusion... It has always stopped the symptoms of the attack very quickly. On the down side... When I get them I get 1000mg a day for 5 days. in that time I do put on 5-7 pounds each day. A lot of MS'ers say they love them because they get lots of energy and feel as though they are MS free for awhile. For me they I love that they take the Attack symptoms away but I have negative side effects from them. Most people do not. So I am not saying this to you to scare you. <br /><br />If you are looking for a faster remission then the IV steroids are the way to go in my opinion.<br /><br />Good Luck!!!Living Day to Day with Multiple Sclerosishttps://www.blogger.com/profile/16919357938675061411noreply@blogger.comtag:blogger.com,1999:blog-1995645300335467747.post-18119923912101563202009-07-01T14:27:01.979-05:002009-07-01T14:27:01.979-05:00Steve - skip hasn't taken steroids since she u...Steve - skip hasn't taken steroids since she used to have them in conjunction with Cytoxan (chemo). I'd have to say Cytoxan is the only treatment she ever had that seemed to really stabilize her for the entire 1+ years she was having it. It was hard for 2 days following chemo/steroids (basically had incredible headaches, jaw locking and took lots of lorazepam to treat), but for the remainder of the month, she seemed to be in a good, stable state.<br /><br />Sounds like the neurologist isn't happy dealing with someone in BR's situation. Are there alternative neuro's in your area?Crankyhttps://www.blogger.com/profile/07995365444853477833noreply@blogger.comtag:blogger.com,1999:blog-1995645300335467747.post-24581177992269305402009-07-01T12:34:42.713-05:002009-07-01T12:34:42.713-05:00For my first major attack (optic neuritis in 2000)...For my first major attack (optic neuritis in 2000), I took oral prednisone at the equivalent amount that IV would have been (1000mg daily). I didn't have insurance at the time. Personally it was extremely difficult on my body and took a long time for me to get over the steroids. But I've since learned that I can't take oral prednisone....period.<br /><br />Now when I have a major attack, I do 5-days IVSM followed by an oral Decadron taper (still a steroid but not prednisone). Still feel like crap for about 3 weeks, but it works.<br /><br />Some folks get a monthly 1-day IVSM pulse infusion to keep the MS a little less active. This is used more for folks who are having break through disease (or symptoms?).<br /><br />If it is convenient enough, I'd probably ask for 3-days of IVSM maybe even delivered at home. It would be good to see if the steroids have any impact on the symptoms with some possible relief.<br /><br />BTW, I tried doing a taper-only round of oral steroids once for a minor attack. It did absolutely nothing for me.<br /><br />Hope you guys are doing better soon. Try to stay cool with the heat.Lisa Emrichhttps://www.blogger.com/profile/10862232056342347990noreply@blogger.com