Re: Re: Neursarc article--prednisone info

[Guest guest]

Bill, you are the only person I know that hasn't put on the weight with the pred! Congrats!

For me, prednisone had me put on 40lbs in 30 days-- and I took a small amount off, then when I had to go back on it high dose a few years later-- it was another 40lbs in 6 months.

What they know about prednisone is that it will knock out the inflammation fast-- and that is good. You have to wean off it-- as your body gets the message to stop production of cortisol-- our own form of prednisone. It controls blood pressure, hormones, metabolism, heart rate, influences blood sugar drastically, hardens our arteries, adds to early cataracts, and only masks the inflammation factor. Take it away, and clinical studies now show that those of us that have been on high dose pred, will end up with the sarc coming back, in more organs than originally found.

Is there a better drug to start with. It will be hard to convince your MD's that there is. The concept is to start with the "least offensive"-- and if that doesn't work, go from there.

If you already have blood sugar issues, they may consider Plaquenil or Methotrexate. Imuran and Arava are generally the next step up, then onto the BRMS-- Biological Response Modifiers-- Cellcept, Enbrel, Humira and Remicade. It is trial and error. And it takes time to see what combinations are going to help you. I'm on Plaquenil, Methotrexate and Remicade. I am also on a prednisone burst right now, because of fluid on my lungs. It is only a 40, 30, 20, 10 --4 day burst-- and we're hoping that it settles the lungs down. So far, I just want to hang the world and most of those close to me are in hiding. (Chickens, they call it "safe-keeping.)

So Bill, while you responded that you are eating really healthy, I say -- out of my way-- I know there's gotta be some icecream somewhere!

Take care,

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis Sent: Thu, January 14, 2010 4:39:40 PMSubject: Re: Re: Neursarc article

After a week of infusions of ??? in early April, I have been on prednisone which bloats my stomach, affects my diet in a positive way (I eat super healthy now...the drug can increase ones blood sugar level to a diabetic range), it can make you moody, it can put weight on..(that hasn't happened to me). I have responded well to the drug thus far into treatment... we are tapering slow and remeasuring every couple of months. I am happy to be walkin and talkin.

From: ncwoolgatherer <ncw001@.... com>Subject: Re: Neursarc articleTo: Neurosarcoidosis@ yahoogroups. comDate: Thursday, January 14, 2010, 9:34 AM

very interesting. Thank you. I'm curious about your comment re: pred. Is there a better drug to start with than pred?May you all have a pain-free day,Sharon> > > From: tracie feldhaus <tiodaat2001@ ...>> Subject: Neursarc article> To: neurosarcoidosis@ yahoogroups. com> Date: Tuesday, January 12, 2010, 10:56 PM> > > > > >

> > > > > > > > > > > > > > > > > Here is a good link describing NS. The only thing I don't like is it still insists that pred is first line of attack. > > http://www.med. ucla.edu/ modules/wfsectio n/article. php?articleid= 414> > Baclofen is a muscle relaxant and anti-epileptic- -- generally used for muscle spasticity.> > Tracie> NS Co-owner/moderator>

[Guest guest]

Thank You Tracie!!!!

I love ice cream (my one vice), but my doc scared the sh_t out of me with the diabetes lecture. She gave me a self-testing kit, we discussed weight/diet a lot, and an exercise routine. I Greatly appreciate your input because I just promised to stick to the game plan and not google & worry. Perhaps it's the insurance companies recommending this drug due to cost because my doctor already had a different medication (remicade) in her plan B . Those insurance companies wouldn't reimburse my gabapentin to lyrica until my doc called and told them too (gabapentin is cheaper).

I pray that your lungs settle down!! You are such a good person. Hang in there. Those close to you should be by your side.. I fly my mom in during a hard week.

Have a Great Friday

bc

From: ncwoolgatherer <ncw001@.... com>Subject: Re: Neursarc articleTo: Neurosarcoidosis@ yahoogroups. comDate: Thursday, January 14, 2010, 9:34 AM

very interesting. Thank you. I'm curious about your comment re: pred. Is there a better drug to start with than pred?May you all have a pain-free day,Sharon> > > From: tracie feldhaus <tiodaat2001@ ...>> Subject: Neursarc article> To: neurosarcoidosis@ yahoogroups. com> Date: Tuesday, January 12, 2010, 10:56 PM> > > > > >

> > > > > > > > > > > > > > > > > Here is a good link describing NS. The only thing I don't like is it still insists that pred is first line of attack. > > http://www.med. ucla.edu/ modules/wfsectio n/article. php?articleid= 414> > Baclofen is a muscle relaxant and anti-epileptic- -- generally used for muscle spasticity.> > Tracie> NS Co-owner/moderator>

[Guest guest]

I always love the "don't google and don't worry lectures!" That alone makes me want to research whatever is going on. Personally, knowledge and researching this disease has kept me alive -- had I not found by accident the clinical trial for Remicade and gotten on it-- all my docs agree, I'd be dead now.

Maybe we should create a google head doll tshirt, "Yes, I google, I know about sarcoidosis, and my choices. So, na na na nah...."

To: Neurosarcoidosis Sent: Thu, January 14, 2010 8:24:22 PMSubject: Re: Re: Neursarc article--prednisone info

Thank You Tracie!!!!

I love ice cream (my one vice), but my doc scared the sh_t out of me with the diabetes lecture. She gave me a self-testing kit, we discussed weight/diet a lot, and an exercise routine. I Greatly appreciate your input because I just promised to stick to the game plan and not google & worry. Perhaps it's the insurance companies recommending this drug due to cost because my doctor already had a different medication (remicade) in her plan B . Those insurance companies wouldn't reimburse my gabapentin to lyrica until my doc called and told them too (gabapentin is cheaper).

I pray that your lungs settle down!! You are such a good person. Hang in there. Those close to you should be by your side.. I fly my mom in during a hard week.

Have a Great Friday

bc

From: ncwoolgatherer <ncw001@.... com>Subject: Re: Neursarc articleTo: Neurosarcoidosis@ yahoogroups. comDate: Thursday, January 14, 2010, 9:34 AM

very interesting. Thank you. I'm curious about your comment re: pred. Is there a better drug to start with than pred?May you all have a pain-free day,Sharon> > > From: tracie feldhaus <tiodaat2001@ ...>> Subject: Neursarc article> To: neurosarcoidosis@ yahoogroups. com> Date: Tuesday, January 12, 2010, 10:56 PM> > > > > >

> > > > > > > > > > > > > > > > > Here is a good link describing NS. The only thing I don't like is it still insists that pred is first line of attack. > > http://www.med. ucla.edu/ modules/wfsectio n/article. php?articleid= 414> > Baclofen is a muscle relaxant and anti-epileptic- -- generally used for muscle spasticity.> > Tracie> NS Co-owner/moderator>

[Guest guest]

Awe I like you. Great sense of humor.

From: ncwoolgatherer <ncw001@.... com>Subject: Re: Neursarc articleTo: Neurosarcoidosis@ yahoogroups. comDate: Thursday, January 14, 2010, 9:34 AM

very interesting. Thank you. I'm curious about your comment re: pred. Is there a better drug to start with than pred?May you all have a pain-free day,Sharon> > > From: tracie feldhaus <tiodaat2001@ ...>> Subject: Neursarc article> To: neurosarcoidosis@ yahoogroups. com> Date: Tuesday, January 12, 2010, 10:56 PM> > > > > >

> > > > > > > > > > > > > > > > > Here is a good link describing NS. The only thing I don't like is it still insists that pred is first line of attack. > > http://www.med. ucla.edu/ modules/wfsectio n/article. php?articleid= 414> > Baclofen is a muscle relaxant and anti-epileptic- -- generally used for muscle spasticity.> > Tracie> NS Co-owner/moderator>

[Guest guest]

I'm glad it's working for you. I was on 80mg daily and it took 2 1/2 yrs to wean off it. In the next 5 yrs, I'd end up on 7 day solumedrol paks for sinus infections and resp. infections, plus injections and short term bursts-- then the sarc raised it's ugly head with iritis and pulmonary and sarc-induced arthritis again-- they insisted on me going back on high dose-- 60mg daily, and it took 15 mo to get off it-- it didn't help anything- and I ended up being 80lbs overweight, diabetic, now have heart valves that are shot due to calcification (sarc vs pred--insult on insult) and the depression had me sitting on the edge of suicide.

My doc finally realized that I had to get off the pred, and that is when we started on Imuran, (my liver didn't like it), then to plaquenil and that helped the body pain-- then to MTX to help the memory loss (early onset dementia) and then on to Arava (gut didn't like it) and then to Remicade.

So far, the Remicade, Plaquenil and MTX are the best combo, and we may be tweaking or changing again because of the lung advancement. Since the fires summer before last (I live in No. CA and was in the middle of them for months) my lungs took a huge hit and have not recovered. So, sadly, what was under control is now in full flare again.

Back to the drawing board...

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis Sent: Fri, January 15, 2010 7:47:55 PMSubject: Re: Neursarc article--prednisone info

I have been on prednisone for 3 years and it has controlled my symptoms. I had the solu-medrol IV monthly after my initial 3 day succession when I had my initial optic neuritis. I was placed on 60 mg prednisone plus the IVs for the first year and a half with a reduction in prednisone. I am currently on 20 to 25 mg and doing well. It was a long road and I also incorporated acupuncture which helped get me off the IVs. But I also incorporated a lot of eastern influence therapies.

I did have a slight flare in August of last year due to a job change which was very stressful and my optic neuritis started to act up but they immediately gave me another solu-medrol IV, raised my prednisone for awhile and I am back down.

I have had a 40 lb weight gain from the prednisone.

[Guest guest]

Tracie:

You are a warrior!! Thank you for leading me and many others through this mess.

Subject: Re: Re: Neursarc article--prednisone infoTo: Neurosarcoidosis Date: Saturday, January 16, 2010, 3:51 AM

I'm glad it's working for you. I was on 80mg daily and it took 2 1/2 yrs to wean off it. In the next 5 yrs, I'd end up on 7 day solumedrol paks for sinus infections and resp. infections, plus injections and short term bursts-- then the sarc raised it's ugly head with iritis and pulmonary and sarc-induced arthritis again-- they insisted on me going back on high dose-- 60mg daily, and it took 15 mo to get off it-- it didn't help anything- and I ended up being 80lbs overweight, diabetic, now have heart valves that are shot due to calcification (sarc vs pred--insult on insult) and the depression had me sitting on the edge of suicide.

My doc finally realized that I had to get off the pred, and that is when we started on Imuran, (my liver didn't like it), then to plaquenil and that helped the body pain-- then to MTX to help the memory loss (early onset dementia) and then on to Arava (gut didn't like it) and then to Remicade.

So far, the Remicade, Plaquenil and MTX are the best combo, and we may be tweaking or changing again because of the lung advancement. Since the fires summer before last (I live in No. CA and was in the middle of them for months) my lungs took a huge hit and have not recovered. So, sadly, what was under control is now in full flare again.

Back to the drawing board...

Tracie

NS Co-owner/moderator

From: "katskreations1@ aol.com" <katskreations1@ aol.com>To: Neurosarcoidosis@ yahoogroups. comSent: Fri, January 15, 2010 7:47:55 PMSubject: Re: Neursarc article--prednisone info

I have been on prednisone for 3 years and it has controlled my symptoms. I had the solu-medrol IV monthly after my initial 3 day succession when I had my initial optic neuritis. I was placed on 60 mg prednisone plus the IVs for the first year and a half with a reduction in prednisone. I am currently on 20 to 25 mg and doing well. It was a long road and I also incorporated acupuncture which helped get me off the IVs. But I also incorporated a lot of eastern influence therapies.

I did have a slight flare in August of last year due to a job change which was very stressful and my optic neuritis started to act up but they immediately gave me another solu-medrol IV, raised my prednisone for awhile and I am back down.

I have had a 40 lb weight gain from the prednisone.

[Guest guest]

I am interested in the job change ordeal or just working with this condition. My case is located in my spinal chord and lungs. I can walk now without a cane and need to figure out what to do next...in terms of work.

Subject: Re: Neursarc article--prednisone infoTo: Neurosarcoidosis Date: Friday, January 15, 2010, 9:47 PM

I have been on prednisone for 3 years and it has controlled my symptoms. I had the solu-medrol IV monthly after my initial 3 day succession when I had my initial optic neuritis. I was placed on 60 mg prednisone plus the IVs for the first year and a half with a reduction in prednisone. I am currently on 20 to 25 mg and doing well. It was a long road and I also incorporated acupuncture which helped get me off the IVs. But I also incorporated a lot of eastern influence therapies.

I did have a slight flare in August of last year due to a job change which was very stressful and my optic neuritis started to act up but they immediately gave me another solu-medrol IV, raised my prednisone for awhile and I am back down.

I have had a 40 lb weight gain from the prednisone.

[Guest guest]

I'll gladly step aside...

Thank you-- truly.

To: Neurosarcoidosis Sent: Sat, January 16, 2010 6:40:17 AMSubject: Re: Re: Neursarc article--prednisone info

Tracie:

You are a warrior!! Thank you for leading me and many others through this mess.

From: tracie feldhaus <tiodaat2001@ yahoo.com>Subject: Re: Re: Neursarc article--prednisone infoTo: Neurosarcoidosis@ yahoogroups. comDate: Saturday, January 16, 2010, 3:51 AM

I'm glad it's working for you. I was on 80mg daily and it took 2 1/2 yrs to wean off it. In the next 5 yrs, I'd end up on 7 day solumedrol paks for sinus infections and resp. infections, plus injections and short term bursts-- then the sarc raised it's ugly head with iritis and pulmonary and sarc-induced arthritis again-- they insisted on me going back on high dose-- 60mg daily, and it took 15 mo to get off it-- it didn't help anything- and I ended up being 80lbs overweight, diabetic, now have heart valves that are shot due to calcification (sarc vs pred--insult on insult) and the depression had me sitting on the edge of suicide.

My doc finally realized that I had to get off the pred, and that is when we started on Imuran, (my liver didn't like it), then to plaquenil and that helped the body pain-- then to MTX to help the memory loss (early onset dementia) and then on to Arava (gut didn't like it) and then to Remicade.

So far, the Remicade, Plaquenil and MTX are the best combo, and we may be tweaking or changing again because of the lung advancement. Since the fires summer before last (I live in No. CA and was in the middle of them for months) my lungs took a huge hit and have not recovered. So, sadly, what was under control is now in full flare again.

Back to the drawing board...

Tracie

NS Co-owner/moderator

From: "katskreations1@ aol.com" <katskreations1@ aol.com>To: Neurosarcoidosis@ yahoogroups. comSent: Fri, January 15, 2010 7:47:55 PMSubject: Re: Neursarc article--prednisone info

I have been on prednisone for 3 years and it has controlled my symptoms. I had the solu-medrol IV monthly after my initial 3 day succession when I had my initial optic neuritis. I was placed on 60 mg prednisone plus the IVs for the first year and a half with a reduction in prednisone. I am currently on 20 to 25 mg and doing well. It was a long road and I also incorporated acupuncture which helped get me off the IVs. But I also incorporated a lot of eastern influence therapies.

I did have a slight flare in August of last year due to a job change which was very stressful and my optic neuritis started to act up but they immediately gave me another solu-medrol IV, raised my prednisone for awhile and I am back down.

I have had a 40 lb weight gain from the prednisone.