Re: Prednisone alternatives....

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Anyone comment on kyrica? Suppose to help calm down my nerves not emotional but physical I have lost some peer to my right foot and so I start on this medicine then a steroid epidural another ct scan emg and two new doctors. No one ever relates anything to my sarc. I am going to glow soonSent via BlackBerry by AT&TSender: Neurosarcoidosis Date: Mon, 21 Jun 2010 20:11:25 -0400To: <neurosarcoidosis >ReplyTo: Neurosarcoidosis Subject: RE: Re: Prednisone alternatives.... we've kinda put all our balls in that bit 'ole basket....:)Kathy, you still have other options, like Remicade, Humira, etc. And hopefully there will be more options in the next few years. There is a lot more research now on sarc than even 10 years ago.Ramblin' RoseModerator "How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these." ~ Washington Carver To: Neurosarcoidosis From: klottey4 (AT) gmail (DOT) comDate: Mon, 21 Jun 2010 18:52:23 -0400Subject: Re: Re: Prednisone alternatives....Yes, Rose, I did a TON of research on Cytoxan before moving forward. It was a scary option, but one that seems to be proving to be a good one. At 30, I didn't want to live the better part of my life as a non-functioning adult, and I have a great neurologist who feels that I shouldn't and that the aggressive approach is a good one. The scary thing is if it doesn't work int he end, we've kinda put all our balls in that bit 'ole basket....:)On Sun, Jun 20, 2010 at 10:13 PM, Rose <mamadogrose (AT) hotmail (DOT) com> wrote: Kathy, Cytoxan was the next option for me if I hadn't gone into remission. I did a lot of research on it & was prepared to take that next step. I'm glad it's helping you.Ramblin' RoseModerator "How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these." ~ Washington Carver To: Neurosarcoidosis From: klottey4 (AT) gmail (DOT) comDate: Sun, 20 Jun 2010 16:39:09 -0400Subject: Re: Re: Prednisone alternatives....I know I have not replied much, but I have had a HORRIBLE time with Prednisone. After about 8 years of symptoms that went undiagnosed, I had a terrible attack last spring where I was hospitalized at town Hospital for 13 days and my wonderful neurologist finally diagnosed me. I tried Prednisone orally and IV for about 9 mos, and when we tried to taper down, I flared up badly again. At that point we were unable to get my symptoms under control with either IV steroids (Solumedrol) or higher doses of Prednisone. My neuro felt strongly that I should get off the Prednisone, so I started Cytoxan about 3 mos ago. I have done 2 IV doses, and will do my third tomorrow. So far, it is working. Each month, I have about 7-10 days where my symptoms are improved about 80%, and then when they go back to being bad, they don't go back to as bad as they were before the treatment. I have 3 more treatments, so thegoal is to kick it into remission. Best of luck to everyone! I know it isn't for everyone, but it is totallyw orking for me right now. Have a wonderful Sunday!KathyOn Sun, Jun 20, 2010 at 3:40 PM, Rose <mamadogrose (AT) hotmail (DOT) com> wrote: Kat, I took Imuran for two years, most of that time overlapping with the Prednisone. I had almost no side effects at all. I was worried about infections because of the immune suppression, but I only had 2 problems. One was a cat bite that progressed to cellulitis even though I started antibiotics with 4 hours of the bite. The E.R. docs told me that was common even without immune suppressants. I ended up needing a shot in the arse 3 days in a row & that was that. Another time I started with a fungal skin rash in a skin fold area & it began to look like an abscess was forming, so I took antibiotics to be safe & it cleared right up. The weird thing is that I have always been prone to vaginal yeast infections so was expecting big problems there, but I didn't have any during the 4 years of immune suppression. Go figure. This is another one of those nifty situations we encounter where we have to make a decisionbased of possibilities. Any data doesn't really help, because we each react differently to drugs, as well as to the disease itself. Being off all sarc drugs for 4 years now I still worry a bit that it's going to pop up again somewhere, but I decided to take that risk rather than continue the meds. But I was in remission & you're not, so you have different pros & cons to weigh. I am very vigilant about anything weird going on with my body, so hopefully if the sarc monster decides to renew the attack I'll catch it early this time. Meanwhile I just deal with the aftermath. My Sunday newspaper has a magazine in it called Parade. They had a good article today about cancer survivors & the long term issues they have, even when told they are cancer-free. They pretty much all fear a recurrence, no matter how long it's been. Most of the article applies to us also. It's never over, we'll never return to "normal," we haveto find a new "normal," and probably have to make that adjustment more than once, even many times. Learning to do that, to let go of the old life & make the best of the present, is the key to contentment, IMHO. I'm not always happy or joyful, but I'm pretty much always content. Does that make sense? I guess I got off the track from your original question. Anyway, you heard my experience with Imuran. I'm sure that other members will weigh in also. Sorry about the rambling!Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 To: Neurosarcoidosis From: katskreations1 (AT) aol (DOT) comDate: Sun, 20 Jun 2010 11:30:28 -0400Subject: Re: Prednisone alternatives.... My doctor wants me to start on Imuran and try and get off the prednisone as I have been on it for 3 1/2 years. Every time I try to decrease the prednisone to a level from down to 13 mg in fall to 18 mg now my eye (from optic neuritis) starts to act up. So they always have to give me another IV and then increase to 30 mg. I have been on the solumedrol IVs and 60 mg of prednisone for 3 1/2 years. My concerns are the Imuran side effects. I am afraid to start taking it when reading about the side effects as I continue to work fulltime and I am the only employee running my office and cannot afford to take off of work and have to be there. For those of you who have tried Imuran what side effects did you have? Thank you.Hotmail is redefining busy with tools for the New Busy. Get more from your inbox. See how. -- "In three words I can sum up everything I've learned about life. It goes on." - FrostHotmail has tools for the New Busy. Search, chat and e-mail from your inbox. Learn more. -- "In three words I can sum up everything I've learned about life. It goes on." - Frost The New Busy think 9 to 5 is a cute idea. Combine multiple calendars with Hotmail. Get busy.

[Guest guest]

Lyrica is for neuropathic pain, from nerve damage or inflammation. I use it for peripheral neuropathy in my feet. I have both numbness & pain; different nerve fibers involved. You can get pain down the leg from spine problems; an epidural steroid injection might help that. But if you have peripheral neuropathy, it's not going to do any good. Have you had a thorough neurological exam? I mean the neurologist takes a lot of time testing the sensations in your feet--temperature, pressure, reaction to vibration? Many docs either don't have the skill or don't want to spend the time; they just order some tests. I've also had emg's & some other tests. But I've had 2 neurologists do this careful physical exam & diagnose the neuropathy based on that. And I have a lot more faith in their opinions!

If you aren't sure that you are experiencing neuropathic pain, here is a link to some excellent information from the American Chronic Pain Association. The link opens directly to neuropathic pain info. On the right hand side, near the middle, is a link "understanding neuropathic pain brochure." You can click that to open the brochure & either read it online or download it. I'm sure you can order it also; not sure of cost.

It just sounds like your provider is using kind of a shotgun approach: throw a bunch of stuff at the problem & maybe something will work. We need doctors who are willing to take the time to be precise & thoughtful, and also discuss with us what they are thinking--why a particular test or medication, what alternatives are there, etc. That's why I sent the info on the AP article of overtreatment.

I hope this isn't more info that you wanted or needed at this time; sometimes I get on a tear.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: dvoegele@...Date: Tue, 22 Jun 2010 00:19:15 +0000Subject: Re: Re: Prednisone alternatives....

Anyone comment on kyrica? Suppose to help calm down my nerves not emotional but physical I have lost some peer to my right foot and so I start on this medicine then a steroid epidural another ct scan emg and two new doctors. No one ever relates anything to my sarc. I am going to glow soon Sent via BlackBerry by AT & T

Sender: Neurosarcoidosis

Date: Mon, 21 Jun 2010 20:11:25 -0400

To: <neurosarcoidosis >

ReplyTo: Neurosarcoidosis

Subject: RE: Re: Prednisone alternatives....

we've kinda put all our balls in that bit 'ole basket....:)Kathy, you still have other options, like Remicade, Humira, etc. And hopefully there will be more options in the next few years. There is a lot more research now on sarc than even 10 years ago. The New Busy is not the old busy. Search, chat and e-mail from your inbox. Get started.

[Guest guest]

No this is perfect Thank you...it is frustrating out there....this doctor actually was on his way to perform surgery...my appointment was origanlly at 3:00 and brought into 1:30..it was a two hour drive one way to see him for 5 minutes....and I was really looking forward to getting some answers today....

I don't really have pain just pretty severe weakness in my foot/leg....but I will check out the site like you said......

He felt that first of all MRI's are not as good as a CT scan because MRI's do 1/4 inch slices and hard to see pinch nerve so CT Scan has been ordered, secondly he believes that it is either caused by sarc so an inflammation in the pelvic area or from my spine.....

the medicine is felt was to help if there was an inflmmation to a nervie, emg to see where and ct scan to rule out sarc or spine...? I was so confused when I left there that good thing my husband was there to help me get through this....

I am sick of doctors and sick of no answers and sick of not relating one to the other and so on...........I am not sick enough for disability but I find some days are just really hard to get through and I can't explain it to anyone....and as soon as I get into see a doctor those symptoms are gone....

Arg

To: neurosarcoidosis Sent: Mon, June 21, 2010 6:03:54 PMSubject: RE: Re: Prednisone alternatives....

Lyrica is for neuropathic pain, from nerve damage or inflammation. I use it for peripheral neuropathy in my feet. I have both numbness & pain; different nerve fibers involved. You can get pain down the leg from spine problems; an epidural steroid injection might help that. But if you have peripheral neuropathy, it's not going to do any good. Have you had a thorough neurological exam? I mean the neurologist takes a lot of time testing the sensations in your feet--temperature, pressure, reaction to vibration? Many docs either don't have the skill or don't want to spend the time; they just order some tests. I've also had emg's & some other tests. But I've had 2 neurologists do this careful physical exam & diagnose the neuropathy based on that. And I have a lot more faith in their opinions! If you aren't sure that you are experiencing neuropathic pain, here is a link to

some excellent information from the American Chronic Pain Association. The link opens directly to neuropathic pain info. On the right hand side, near the middle, is a link "understanding neuropathic pain brochure." You can click that to open the brochure & either read it online or download it. I'm sure you can order it also; not sure of cost. It just sounds like your provider is using kind of a shotgun approach: throw a bunch of stuff at the problem & maybe something will work. We need doctors who are willing to take the time to be precise & thoughtful, and also discuss with us what they are thinking--why a particular test or medication, what alternatives are there, etc. That's why I sent the info on the AP article of overtreatment. I hope this isn't more info that you wanted or needed at this time; sometimes I get on a tear.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis@ yahoogroups. comFrom: dvoegele (AT) verizon (DOT) netDate: Tue, 22 Jun 2010 00:19:15 +0000Subject: Re: Re: Prednisone alternatives. ...Anyone comment on kyrica? Suppose to help calm down my nerves not emotional but physical I have lost some peer to my right foot and so I start on this medicine then a steroid epidural another ct scan emg and two new doctors. No one ever relates anything to my sarc. I am going to glow soon Sent via BlackBerry by AT & T

From: Rose <mamadogrose@ hotmail.com>

Sender: Neurosarcoidosis@ yahoogroups. com

Date: Mon, 21 Jun 2010 20:11:25 -0400

To: <neurosarcoidosis@ yahoogroups. com>

ReplyTo: Neurosarcoidosis@ yahoogroups. com

Subject: RE: Re: Prednisone alternatives. ...

we've kinda put all our balls in that bit 'ole basket....:)Kathy, you still have other options, like Remicade, Humira, etc. And hopefully there will be more options in the next few years. There is a lot more research now on sarc than even 10 years ago.

The New Busy is not the old busy. Search, chat and e-mail from your inbox. Get started.