Re: fatigue & staying awake

[Guest guest]

Hi, not to butt in here, but I had the same issues with the ongoing fatigue and inability to stay awake. My dr. also put me on Ritalin and then on Adderall. As you noticed , Rose, the Adderall didn't make any difference. The Ritalin worked for me and I was happy to find to something that helped. But then I started having these side effects of severe anxiety which were awful. I was so disappointed to find something that helped , but had these side effects. Then my dr had another idea, he put me on Provigil which is a med for narcolepsy. I have been on it for over a year now and it has helped a lot without any anxiety issues. I just wanted to put my 2 cents in , if anyone else had this issue..... Debbie T. Co-Moderator Rose wrote: I'm sure it's not too late for the conference; getting rooms at the hotel or getting the conference rate might be a problem. Contact either Robbie Darden or Kay Pullen. Here is the contact info: 317) 335-2981 or robbielin (AT) insightbb (DOT) com or me (Kay Pullen at or nkpullen (AT) yahoo (DOT) com. That would be great to see you & your fiance! If you come, I'll be the tall lady (yeah, I know, some of you don't think I'm a lady) with short gray hair, wearing a shirt with K.I.S.S. on the front & Hike for Lung Health on the back. Re: the arm pain. Muscle & joint

pain is fairly common with sarc. Since it has intensified after stopping the CellCept, it's probably sarc-related. I do get moderate-severe right arm pain, but it's from tendonitis of the right elbow. I wear an arm band-type brace, and when it gets really bad, I get a steroid injection in my elbow. But I don't believe it's related to sarc; more to 20 years of catching babies! Re: Baughman. Yes, Baughman is with the Univ. of Cincinnati. I see him once a year, to make sure my local docs are up to date on research & treatment. Since he is one of the top sarc docs in the world & very involved in research, I feel better knowing that he's on my team. For example, the last time I saw him, in June, we talked about my ongoing fatigue. I had used Ritalin, which did keep my awake, but not really productive, and Adderall, which didn't do much as all. Baughman

suggested Focalin, which is a cousin of Ritalin, with fewer troublesome side effects. Rheumatoid arthritis patients had reported an improvement in energy & some even better memory, so Baughman had tried it on some sarc patients, with at least some anecdotal improvements. He told me he would like to do a full clinical trial. One of my doctors ordered it, and I've seen a definite improvement in energy levels; maybe some improvement in memory. I still have trouble coming up with the words I want, but I've noticed that my emails have fewer errors! Although I did say "write" instead of "right" to someone earlier. I doubt that any of my local docs would have known or suggested the Focalin any time soon. Re: Imuran. When I first started treatment, I took Prednisone, then they added Imuran to allow me to decrease the dosage of Pred. I didn't have any side effects or

problems with it. I still gained 90# & had most of the usual Pred effects--uncontrolled hypertension, blood sugars, decreased bone density. After stopping the Pred, they also had me stop the Imuran. I wasn't that assertive then, I didn't ask why. Within a few months, symptoms were worsening, so I was started on Methotrexate, which apparently put me into remission. Imuran is one of the drugs that are Prednisone-sparing; allow you to decrease the Pred dosage. Also, with systemic sarc (anything but just lung involvement), you need combination therapy. Most of us need some experimentation to find out which combos & dosages work the best, without unacceptable side effects. Did this help? Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 ebonywreh@... wrote: 1) Is it too late to register for the conference?2) Does anyone get severe arm pain at night? My fiance is complainingabout this a lot, especially since he has stopped the cellcept.Hopefully he will receive his approval for patient assistance thisweek.3)I think I got only one response to my previous question about Imuranand Dr. Baughman. Is the Baughman you speak of in Cincinnati? Do yousee him in addition to your neurologist? What do you think aboutImuran?Thanks for any

responses. Help yourself to FREE treats served up daily at the Messenger Café. Stop by today!

Catch up on fall's hot new shows on Yahoo! TV. Watch previews, get listings, and more!

[Guest guest]

Hi, not to butt in here, but I had the same issues with the ongoing fatigue and inability to stay awake. My dr. also put me on Ritalin and then on Adderall. As you noticed , Rose, the Adderall didn't make any difference. The Ritalin worked for me and I was happy to find to something that helped. But then I started having these side effects of severe anxiety which were awful. I was so disappointed to find something that helped , but had these side effects. Then my dr had another idea, he put me on Provigil which is a med for narcolepsy. I have been on it for over a year now and it has helped a lot without any anxiety issues. I just wanted to put my 2 cents in , if anyone else had this issue..... Debbie T. Co-Moderator Rose wrote: I'm sure it's not too late for the conference; getting rooms at the hotel or getting the conference rate might be a problem. Contact either Robbie Darden or Kay Pullen. Here is the contact info: 317) 335-2981 or robbielin (AT) insightbb (DOT) com or me (Kay Pullen at or nkpullen (AT) yahoo (DOT) com. That would be great to see you & your fiance! If you come, I'll be the tall lady (yeah, I know, some of you don't think I'm a lady) with short gray hair, wearing a shirt with K.I.S.S. on the front & Hike for Lung Health on the back. Re: the arm pain. Muscle & joint

pain is fairly common with sarc. Since it has intensified after stopping the CellCept, it's probably sarc-related. I do get moderate-severe right arm pain, but it's from tendonitis of the right elbow. I wear an arm band-type brace, and when it gets really bad, I get a steroid injection in my elbow. But I don't believe it's related to sarc; more to 20 years of catching babies! Re: Baughman. Yes, Baughman is with the Univ. of Cincinnati. I see him once a year, to make sure my local docs are up to date on research & treatment. Since he is one of the top sarc docs in the world & very involved in research, I feel better knowing that he's on my team. For example, the last time I saw him, in June, we talked about my ongoing fatigue. I had used Ritalin, which did keep my awake, but not really productive, and Adderall, which didn't do much as all. Baughman

suggested Focalin, which is a cousin of Ritalin, with fewer troublesome side effects. Rheumatoid arthritis patients had reported an improvement in energy & some even better memory, so Baughman had tried it on some sarc patients, with at least some anecdotal improvements. He told me he would like to do a full clinical trial. One of my doctors ordered it, and I've seen a definite improvement in energy levels; maybe some improvement in memory. I still have trouble coming up with the words I want, but I've noticed that my emails have fewer errors! Although I did say "write" instead of "right" to someone earlier. I doubt that any of my local docs would have known or suggested the Focalin any time soon. Re: Imuran. When I first started treatment, I took Prednisone, then they added Imuran to allow me to decrease the dosage of Pred. I didn't have any side effects or

problems with it. I still gained 90# & had most of the usual Pred effects--uncontrolled hypertension, blood sugars, decreased bone density. After stopping the Pred, they also had me stop the Imuran. I wasn't that assertive then, I didn't ask why. Within a few months, symptoms were worsening, so I was started on Methotrexate, which apparently put me into remission. Imuran is one of the drugs that are Prednisone-sparing; allow you to decrease the Pred dosage. Also, with systemic sarc (anything but just lung involvement), you need combination therapy. Most of us need some experimentation to find out which combos & dosages work the best, without unacceptable side effects. Did this help? Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 ebonywreh@... wrote: 1) Is it too late to register for the conference?2) Does anyone get severe arm pain at night? My fiance is complainingabout this a lot, especially since he has stopped the cellcept.Hopefully he will receive his approval for patient assistance thisweek.3)I think I got only one response to my previous question about Imuranand Dr. Baughman. Is the Baughman you speak of in Cincinnati? Do yousee him in addition to your neurologist? What do you think aboutImuran?Thanks for any

responses. Help yourself to FREE treats served up daily at the Messenger Café. Stop by today!

Catch up on fall's hot new shows on Yahoo! TV. Watch previews, get listings, and more!