Re: Prednisone alternatives....

[Guest guest]

My mother recently had a open lung biopsy to determine what is causing her shortness of breath. The diagnosis was chronic bronchitis with chronic interstitial pneumonia and focal non-necrotizing granulomatous inflammation, most consistent with hypersensitivity pneumonia. The doctor wants to start treatment with 60mg of prednisone every day. Her fear is all the weight gain that can be caused by the proud and the moon face. Are there any other meds that can be used other than pred that won't cause the weight gain and still help her breathing issues?Thanks for your replies and may you all have a pain free day.

in IowaPS I think that it is Sarcoidosis but they said it is not sarc. Her oxygen levels are good her shortness of breath only happens when she is walking or climbing stairs.

[Guest guest]

I'd like to know the answer to that question also. When I was placed on high dose Prednisone I weighed 135 lbs and within three weeks, I was almost 200 lbs with a moon face and stretch marks everywhere. When I was finally able to get to a mirrow, I scared myself. When I got better and the Prednisone was reduced, the weight fell off but I was left with a sagging face and neck. Now, I cannot afford to have it repaired because the doc said that exercise would be no use but that I would require cosmetic surgery. I have always looked a lot younger than my age; and the thing is ... my face still does if you don't see the sagging neck.Now that I am having breathing problems again, my pulm says he might have to up my Prednisone again. I said NO!!In Christ, L.

-MayeTo: Neurosarcoidosis Sent: Fri, June 18, 2010 11:47:26 AMSubject: RE: Prednisone alternatives....

My mother recently had a open lung biopsy to determine what is causing her shortness of breath. The diagnosis was chronic bronchitis with chronic interstitial pneumonia and focal non-necrotizing granulomatous inflammation, most consistent with hypersensitivity pneumonia. The doctor wants to start treatment with 60mg of prednisone every day. Her fear is all the weight gain that can be caused by the proud and the moon face. Are there any other meds that can be used other than pred that won't cause the weight gain and still help her breathing issues?Thanks for your replies and may you all have a pain free day.

in IowaPS I think that it is Sarcoidosis but they said it is not sarc. Her oxygen levels are good her shortness of breath only happens when she is walking or climbing stairs.

[Guest guest]

Pred in this situation can be a lifesaver-- but if she refuses it- she needs to talk to them about inhaled steroids-- they can add several different kinds to a nebulizer and that may do the trick. They are going to push for the oral pred in addition== and as they withdraw it, her cough will come back-- so it will be 6-8 months to get her off it.

I hight recommend that you rent the movie A BEAUTIFUL TRUTH-- as it will explain the immune system and how we've gotten so far away from health. It is a protocol that I'm doing now along with some serious whole food supplements customized to my individual situation. (I posted on it a week or so ago--- see Tracie Update.)

The other mods can share with you info that I've shared with them recently-- as I'm going offline for the next month or so around next Thursday. I'll be on "no mail" from both the group and moderators (first time in about 8 yrs) and I know that gang will take good care of all of you.

WATCH THIS MOVIE-- IT WILL CHANGE YOUR LIFE!!!

My love to all,

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis Sent: Fri, June 18, 2010 8:47:26 AMSubject: RE: Prednisone alternatives....

My mother recently had a open lung biopsy to determine what is causing her shortness of breath. The diagnosis was chronic bronchitis with chronic interstitial pneumonia and focal non-necrotizing granulomatous inflammation, most consistent with hypersensitivity pneumonia. The doctor wants to start treatment with 60mg of prednisone every day. Her fear is all the weight gain that can be caused by the proud and the moon face. Are there any other meds that can be used other than pred that won't cause the weight gain and still help her breathing issues?Thanks for your replies and may you all have a pain free day.

in IowaPS I think that it is Sarcoidosis but they said it is not sarc. Her oxygen levels are good her shortness of breath only happens when she is walking or climbing stairs.

[Guest guest]

Tracie,

God Bless you and we will be with you in spirit. Thanks for all your help. I never felt so all alone with any medical issue (being in the field) until contracting this disease. My colleagues no nothing about this and that says a lot. You gave me a home and let me know I could go thee any time I needed. We will be here for you when you get back.

Thanks for everything, see you soon,

Mitch

RE: Prednisone alternatives....

My mother recently had a open lung biopsy to determine what is causing her shortness of breath. The diagnosis was chronic bronchitis with chronic interstitial pneumonia and focal non-necrotizing granulomatous inflammation, most consistent with hypersensitivity pneumonia. The doctor wants to start treatment with 60mg of prednisone every day. Her fear is all the weight gain that can be caused by the proud and the moon face. Are there any other meds that can be used other than pred that won't cause the weight gain and still help her breathing issues?

Thanks for your replies and may you all have a pain free day.

in Iowa

PS I think that it is Sarcoidosis but they said it is not sarc. Her oxygen levels are good her shortness of breath only happens when she is walking or climbing stairs.

[Guest guest]

Thankyou

To: Neurosarcoidosis Sent: Fri, June 18, 2010 10:02:52 PMSubject: Re: Prednisone alternatives....

Tracie,

God Bless you and we will be with you in spirit. Thanks for all your help. I never felt so all alone with any medical issue (being in the field) until contracting this disease. My colleagues no nothing about this and that says a lot. You gave me a home and let me know I could go thee any time I needed. We will be here for you when you get back.

Thanks for everything, see you soon,

Mitch

RE: Prednisone alternatives. ...

My mother recently had a open lung biopsy to determine what is causing her shortness of breath. The diagnosis was chronic bronchitis with chronic interstitial pneumonia and focal non-necrotizing granulomatous inflammation, most consistent with hypersensitivity pneumonia. The doctor wants to start treatment with 60mg of prednisone every day. Her fear is all the weight gain that can be caused by the proud and the moon face. Are there any other meds that can be used other than pred that won't cause the weight gain and still help her breathing issues?Thanks for your replies and may you all have a pain free day.

in IowaPS I think that it is Sarcoidosis but they said it is not sarc. Her oxygen levels are good her shortness of breath only happens when she is walking or climbing stairs.

[Guest guest]

, have you tried "Prednisone-sparing" drugs like Plaquenil, Imuran or Methotrexate? Most of us need a combination; Pred alone won't get it & when you stop the Pred, the symptoms usually come back worse than ever & often in other organ systems.

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

To: Neurosarcoidosis From: specialk2002ac@...Date: Fri, 18 Jun 2010 18:45:48 -0700Subject: Re: Prednisone alternatives....

I'd like to know the answer to that question also. When I was placed on high dose Prednisone I weighed 135 lbs and within three weeks, I was almost 200 lbs with a moon face and stretch marks everywhere. When I was finally able to get to a mirrow, I scared myself. When I got better and the Prednisone was reduced, the weight fell off but I was left with a sagging face and neck. Now, I cannot afford to have it repaired because the doc said that exercise would be no use but that I would require cosmetic surgery. I have always looked a lot younger than my age; and the thing is ... my face still does if you don't see the sagging neck.Now that I am having breathing problems again, my pulm says he might have to up my Prednisone again. I said NO!!In Christ, L. -Maye

To: Neurosarcoidosis Sent: Fri, June 18, 2010 11:47:26 AMSubject: RE: Prednisone alternatives....

My mother recently had a open lung biopsy to determine what is causing her shortness of breath. The diagnosis was chronic bronchitis with chronic interstitial pneumonia and focal non-necrotizing granulomatous inflammation, most consistent with hypersensitivity pneumonia. The doctor wants to start treatment with 60mg of prednisone every day. Her fear is all the weight gain that can be caused by the proud and the moon face. Are there any other meds that can be used other than pred that won't cause the weight gain and still help her breathing issues?Thanks for your replies and may you all have a pain free day.

in IowaPS I think that it is Sarcoidosis but they said it is not sarc. Her oxygen levels are good her shortness of breath only happens when she is walking or climbing stairs.

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[Guest guest]

you were lucky to have lost the weight again. I went from 135 to 210 and haven't been able to lose it at all. I hope you take the extra Prednisone for a while is sounds a lot better than getting the NS back. Good luck to you and hang in there.

Jackie

RE: Prednisone alternatives....

My mother recently had a open lung biopsy to determine what is causing her shortness of breath. The diagnosis was chronic bronchitis with chronic interstitial pneumonia and focal non-necrotizing granulomatous inflammation, most consistent with hypersensitivity pneumonia. The doctor wants to start treatment with 60mg of prednisone every day. Her fear is all the weight gain that can be caused by the proud and the moon face. Are there any other meds that can be used other than pred that won't cause the weight gain and still help her breathing issues?Thanks for your replies and may you all have a pain free day.

in IowaPS I think that it is Sarcoidosis but they said it is not sarc. Her oxygen levels are good her shortness of breath only happens when she is walking or climbing stairs.

Hotmail has tools for the New Busy. Search, chat and e-mail from your inbox. Learn more.

[Guest guest]



Good Luck Tracie

You are in my thoughts and prayers We will miss you.

Jackie

RE: Prednisone alternatives....

My mother recently had a open lung biopsy to determine what is causing her shortness of breath. The diagnosis was chronic bronchitis with chronic interstitial pneumonia and focal non-necrotizing granulomatous inflammation, most consistent with hypersensitivity pneumonia. The doctor wants to start treatment with 60mg of prednisone every day. Her fear is all the weight gain that can be caused by the proud and the moon face. Are there any other meds that can be used other than pred that won't cause the weight gain and still help her breathing issues?Thanks for your replies and may you all have a pain free day.

in IowaPS I think that it is Sarcoidosis but they said it is not sarc. Her oxygen levels are good her shortness of breath only happens when she is walking or climbing stairs.

[Guest guest]

, your right it does sound like Sarcoid, if this is her first time on Pred. it might do the trick, and she may not need more medication.  If you are on  it long term you can get the moon face, wt gain. But my guess is that they will start her at 60 see how she does then taper it

down so she's not on it very long.  I was on it for a long time got the wt gain and moon face,and after going off the moon face went away, but the wt has been a struggle.  If it' not Sarc this is still a good treatment.  Wait and see how she does, or get a second opinion.

Blessings,Marla

 

My mother recently had a open lung biopsy to determine what is causing her shortness of breath. The diagnosis was chronic bronchitis with chronic interstitial pneumonia and focal non-necrotizing granulomatous inflammation, most consistent with hypersensitivity pneumonia. The doctor wants to start treatment with 60mg of prednisone every day. Her fear is all the weight gain that can be caused by the proud and the moon face. Are there any other meds that can be used other than pred that won't cause the weight gain and still help her breathing issues?

Thanks for your replies and may you all have a pain free day.

in IowaPS I think that it is Sarcoidosis but they said it is not sarc. Her oxygen levels are good her shortness of breath only happens when she is walking or climbing stairs.

[Guest guest]

,

From experience and from all the related web sites and info that I have read

on prednizone, I would try something else first. The majority of the tests and etc

done with the prednizone states that if it is used on Sarc at first, you have a much

larger chance of the Sarc returning and with a vengenace. Where, if you use a

drug that does not have prednizone in it, you have a better chance of the Sarc

just staying in remittance. I know that is what happened to me. I was given

large dozes of the Prednizone and my Doctor said we could "knock it out" with

this and it will not come back! Well............I took the prednizone, gained 60 lbs

in 2 months and I could not even eat!!! I got the moon face and the big belly and

have not been able to lose any of it. My moon face went away after awhile but

nothing else did. And........now I am back on the ugly stuff.......hope it is just

short term.

Good luck, get another opinion and please keep us posted.

Hugs,DarleneNS Co-Owner/Moderator

My mother recently had a open lung biopsy to determine what is causing her shortness of breath. The diagnosis was chronic bronchitis with chronic interstitial pneumonia and focal non-necrotizing granulomatous inflammation, most consistent with hypersensitivity pneumonia. The doctor wants to start treatment with 60mg of prednisone every day. Her fear is all the weight gain that can be caused by the proud and the moon face. Are there any other meds that can be used other than pred that won't cause the weight gain and still help her breathing issues?Thanks for your replies and may you all have a pain free day.

in IowaPS I think that it is Sarcoidosis but they said it is not sarc. Her oxygen levels are good her shortness of breath only happens when she is walking or climbing stairs.

[Guest guest]

Oh, I'm going to miss you Tracie; but I know it's a vacation you rightly deserve, so I bid you a blessed one with a renewal of your strength and health. Thanks so much for all you do!! Have a very blessed evening and several weeks!! :-)Always, L. -Maye (Baltimore)To: Neurosarcoidosis Sent: Sat, June 19, 2010 12:23:04 AMSubject: Re: Prednisone alternatives....

Pred in this situation can be a lifesaver-- but if she refuses it- she needs to talk to them about inhaled steroids-- they can add several different kinds to a nebulizer and that may do the trick. They are going to push for the oral pred in addition== and as they withdraw it, her cough will come back-- so it will be 6-8 months to get her off it.

I hight recommend that you rent the movie A BEAUTIFUL TRUTH-- as it will explain the immune system and how we've gotten so far away from health. It is a protocol that I'm doing now along with some serious whole food supplements customized to my individual situation. (I posted on it a week or so ago--- see Tracie Update.)

The other mods can share with you info that I've shared with them recently-- as I'm going offline for the next month or so around next Thursday. I'll be on "no mail" from both the group and moderators (first time in about 8 yrs) and I know that gang will take good care of all of you.

WATCH THIS MOVIE-- IT WILL CHANGE YOUR LIFE!!!

My love to all,

Tracie

NS Co-owner/moderator

From: <pat6171 (AT) yahoo (DOT) com>To: Neurosarcoidosis@ yahoogroups. comSent: Fri, June 18, 2010 8:47:26 AMSubject: RE: Prednisone alternatives. ...

My mother recently had a open lung biopsy to determine what is causing her shortness of breath. The diagnosis was chronic bronchitis with chronic interstitial pneumonia and focal non-necrotizing granulomatous inflammation, most consistent with hypersensitivity pneumonia. The doctor wants to start treatment with 60mg of prednisone every day. Her fear is all the weight gain that can be caused by the proud and the moon face. Are there any other meds that can be used other than pred that won't cause the weight gain and still help her breathing issues?Thanks for your replies and may you all have a pain free day.

in IowaPS I think that it is Sarcoidosis but they said it is not sarc. Her oxygen levels are good her shortness of breath only happens when she is walking or climbing stairs.

[Guest guest]

No, Rose, Prednisone is the only drug my pulm has tried. Maybe I should take this info that you gave me to my new PCP. Perhaps he will make some changes. Yes, I will do just that. Thanks, Rose ... thanks a bunch!!Have a blessed day!To: neurosarcoidosis Sent: Sat, June

19, 2010 10:09:50 AMSubject: RE: Prednisone alternatives....

, have you tried "Prednisone- sparing" drugs like Plaquenil, Imuran or Methotrexate? Most of us need a combination; Pred alone won't get it & when you stop the Pred, the symptoms usually come back worse than ever & often in other organ systems.

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

To: Neurosarcoidosis@ yahoogroups. comFrom: specialk2002ac@ yahoo.comDate: Fri, 18 Jun 2010 18:45:48 -0700Subject: Re: Prednisone alternatives. ...

I'd like to know the answer to that question also. When I was placed on high dose Prednisone I weighed 135 lbs and within three weeks, I was almost 200 lbs with a moon face and stretch marks everywhere. When I was finally able to get to a mirrow, I scared myself. When I got better and the Prednisone was reduced, the weight fell off but I was left with a sagging face and neck. Now, I cannot afford to have it repaired because the doc said that exercise would be no use but that I would require cosmetic surgery. I have always looked a lot younger than my age; and the thing is ... my face still does if you don't see the sagging neck.Now that I am having breathing problems again, my pulm says he might have to up my Prednisone again. I said NO!!In Christ, L. -Maye

From: <pat6171 (AT) yahoo (DOT) com>To: Neurosarcoidosis@ yahoogroups. comSent: Fri, June 18, 2010 11:47:26 AMSubject: RE: Prednisone alternatives. ...

My mother recently had a open lung biopsy to determine what is causing her shortness of breath. The diagnosis was chronic bronchitis with chronic interstitial pneumonia and focal non-necrotizing granulomatous inflammation, most consistent with hypersensitivity pneumonia. The doctor wants to start treatment with 60mg of prednisone every day. Her fear is all the weight gain that can be caused by the proud and the moon face. Are there any other meds that can be used other than pred that won't cause the weight gain and still help her breathing issues?Thanks for your replies and may you all have a pain free day.

in IowaPS I think that it is Sarcoidosis but they said it is not sarc. Her oxygen levels are good her shortness of breath only happens when she is walking or climbing stairs.

Hotmail has tools for the New Busy. Search, chat and e-mail from your inbox. Learn more.

[Guest guest]

, shortly after I started the Pred (back in 2002) for pulmonary & neurosarc, they also put me on Imuran. With the Imuran I was able to taper the Pred dosage after a few months, then stayed on 20mg daily for another year, still with the Imuran. After two years I was off the Pred completely, continued the Imuran another few months & tapered off it. After a few months, some of my neuro symptoms worsened & I started Methotrexate. Took it for about two years until everybody thought I was in remission, then tapered off it. That was 4 years ago & everything has been stable since (knock on particle board). I did still gain some weight from the Pred, but a lot of my weight was from Remeron. They put me on that for tremors that were causing problems as a nurse. It helped the tremors, but I packed the weight on twice as fast as I did just on Pred! I needed it to keep working, but otherwise I wouldn't have kept taking it.

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: specialk2002ac@...Date: Sat, 19 Jun 2010 15:49:26 -0700Subject: Re: Prednisone alternatives....

No, Rose, Prednisone is the only drug my pulm has tried. Maybe I should take this info that you gave me to my new PCP. Perhaps he will make some changes. Yes, I will do just that. Thanks, Rose ... thanks a bunch!!Have a blessed day!

To: neurosarcoidosis Sent: Sat, June 19, 2010 10:09:50 AMSubject: RE: Prednisone alternatives....

, have you tried "Prednisone- sparing" drugs like Plaquenil, Imuran or Methotrexate? Most of us need a combination; Pred alone won't get it & when you stop the Pred, the symptoms usually come back worse than ever & often in other organ systems.

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

To: Neurosarcoidosis@ yahoogroups. comFrom: specialk2002ac@ yahoo.comDate: Fri, 18 Jun 2010 18:45:48 -0700Subject: Re: Prednisone alternatives. ...

I'd like to know the answer to that question also. When I was placed on high dose Prednisone I weighed 135 lbs and within three weeks, I was almost 200 lbs with a moon face and stretch marks everywhere. When I was finally able to get to a mirrow, I scared myself. When I got better and the Prednisone was reduced, the weight fell off but I was left with a sagging face and neck. Now, I cannot afford to have it repaired because the doc said that exercise would be no use but that I would require cosmetic surgery. I have always looked a lot younger than my age; and the thing is ... my face still does if you don't see the sagging neck.Now that I am having breathing problems again, my pulm says he might have to up my Prednisone again. I said NO!!In Christ, L. -Maye

From: <pat6171 (AT) yahoo (DOT) com>To: Neurosarcoidosis@ yahoogroups. comSent: Fri, June 18, 2010 11:47:26 AMSubject: RE: Prednisone alternatives. ...

My mother recently had a open lung biopsy to determine what is causing her shortness of breath. The diagnosis was chronic bronchitis with chronic interstitial pneumonia and focal non-necrotizing granulomatous inflammation, most consistent with hypersensitivity pneumonia. The doctor wants to start treatment with 60mg of prednisone every day. Her fear is all the weight gain that can be caused by the proud and the moon face. Are there any other meds that can be used other than pred that won't cause the weight gain and still help her breathing issues?Thanks for your replies and may you all have a pain free day.

in IowaPS I think that it is Sarcoidosis but they said it is not sarc. Her oxygen levels are good her shortness of breath only happens when she is walking or climbing stairs.

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[Guest guest]

Thanks, Jackie, but I did just terribly on that stuff. I couldn't do anything for myself because I was so large. I couldn't even dress myself; but my youngest daughter stayed with me to do everything for her mom. I felt like such an invalid. I couldn't even walk several steps without getting tired. You see ... I cannot carry weight! I guess my frame is too small or something. Plus, I think that is why Bernie Mack left us ... he just got so big that his heart couldn't take it!!I am going to have my PCP look into something else before he ups my pred dose! Only if he just HAS to will I allow myself to go on a higher dose. ly, Jackie, I'd rather be dead than live the life I was living ... or existing!! God will not place no more on me than I can bear ... and He knows that I cannot bear

being that large again! (smile)Be blessed, and thanks again!! L. -MayeTo: Neurosarcoidosis Sent: Sat, June 19, 2010 12:25:11 PMSubject: Re: Prednisone alternatives....

you were lucky to have lost the weight again. I went from 135 to 210 and haven't been able to lose it at all. I hope you take the extra Prednisone for a while is sounds a lot better than getting the NS back. Good luck to you and hang in there.

Jackie

RE: Prednisone alternatives. ...

My mother recently had a open lung biopsy to determine what is causing her shortness of breath. The diagnosis was chronic bronchitis with chronic interstitial pneumonia and focal non-necrotizing granulomatous inflammation, most consistent with hypersensitivity pneumonia. The doctor wants to start treatment with 60mg of prednisone every day. Her fear is all the weight gain that can be caused by the proud and the moon face. Are there any other meds that can be used other than pred that won't cause the weight gain and still help her breathing issues?Thanks for your replies and may you all have a pain free day.

in IowaPS I think that it is Sarcoidosis but they said it is not sarc. Her oxygen levels are good her shortness of breath only happens when she is walking or climbing stairs.

Hotmail has tools for the New Busy. Search, chat and e-mail from your inbox. Learn more.

[Guest guest]

Thanks again, Rose; I will consider this with my PCP!! Be blessed! L. -MayeTo: neurosarcoidosis Sent: Sat, June 19, 2010 7:00:42 PMSubject: RE: Prednisone alternatives....

, shortly after I started the Pred (back in 2002) for pulmonary & neurosarc, they also put me on Imuran. With the Imuran I was able to taper the Pred dosage after a few months, then stayed on 20mg daily for another year, still with the Imuran. After two years I was off the Pred completely, continued the Imuran another few months & tapered off it. After a few months, some of my neuro symptoms worsened & I started Methotrexate. Took it for about two years until everybody thought I was in remission, then tapered off it. That was 4 years ago & everything has been stable since (knock on particle board). I did still gain some weight from the Pred, but a lot of my weight was from Remeron. They put me on that for tremors that were causing problems as a nurse. It helped the tremors, but I packed the weight on twice as fast as I did just on Pred! I needed it to keep working, but otherwise I

wouldn't have kept taking it.

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@ yahoogroups. comFrom: specialk2002ac@ yahoo.comDate: Sat, 19 Jun 2010 15:49:26 -0700Subject: Re: Prednisone alternatives. ...

No, Rose, Prednisone is the only drug my pulm has tried. Maybe I should take this info that you gave me to my new PCP. Perhaps he will make some changes. Yes, I will do just that. Thanks, Rose ... thanks a bunch!!Have a blessed day!

From: Rose <mamadogrose@ hotmail.com>To: neurosarcoidosis@ yahoogroups. comSent: Sat, June 19, 2010 10:09:50 AMSubject: RE: Prednisone alternatives. ...

, have you tried "Prednisone- sparing" drugs like Plaquenil, Imuran or Methotrexate? Most of us need a combination; Pred alone won't get it & when you stop the Pred, the symptoms usually come back worse than ever & often in other organ systems.

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

To: Neurosarcoidosis@ yahoogroups. comFrom: specialk2002ac@ yahoo.comDate: Fri, 18 Jun 2010 18:45:48 -0700Subject: Re: Prednisone alternatives. ...

I'd like to know the answer to that question also. When I was placed on high dose Prednisone I weighed 135 lbs and within three weeks, I was almost 200 lbs with a moon face and stretch marks everywhere. When I was finally able to get to a mirrow, I scared myself. When I got better and the Prednisone was reduced, the weight fell off but I was left with a sagging face and neck. Now, I cannot afford to have it repaired because the doc said that exercise would be no use but that I would require cosmetic surgery. I have always looked a lot younger than my age; and the thing is ... my face still does if you don't see the sagging neck.Now that I am having breathing problems again, my pulm says he might have to up my Prednisone again. I said NO!!In Christ, L. -Maye

From: <pat6171 (AT) yahoo (DOT) com>To: Neurosarcoidosis@ yahoogroups. comSent: Fri, June 18, 2010 11:47:26 AMSubject: RE: Prednisone alternatives. ...

My mother recently had a open lung biopsy to determine what is causing her shortness of breath. The diagnosis was chronic bronchitis with chronic interstitial pneumonia and focal non-necrotizing granulomatous inflammation, most consistent with hypersensitivity pneumonia. The doctor wants to start treatment with 60mg of prednisone every day. Her fear is all the weight gain that can be caused by the proud and the moon face. Are there any other meds that can be used other than pred that won't cause the weight gain and still help her breathing issues?Thanks for your replies and may you all have a pain free day.

in IowaPS I think that it is Sarcoidosis but they said it is not sarc. Her oxygen levels are good her shortness of breath only happens when she is walking or climbing stairs.

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[Guest guest]

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.

[Guest guest]

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 decision based 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 have to 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@...Date: 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.

[Guest guest]

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 the goal 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!

Kathy

 

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 decision based 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 have to 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@...Date: Sun, 20 Jun 2010 11:30:28 -0400

Subject: 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. "  - Frost

[Guest guest]

Imuran has been wonderful for me! I have been on it for about 5 1/2 years now..........the only

side effect that I had was being a little queasy while getting used to it. My doc started me on 50

and then upped it to 100 and then to 150. It took about 3 months to get used to it. Then I started

the Remicade -- had 3 doses of it and got very, very, ill...........almost died. I am still taking the

Imuran but have cut back to 50. My specialists told me to NEVER take the Remicade again. It

works wonders for lots of people but it also cannot tolerated by a lot of others ....including me.

Hugs,DarleneNS Co-Owner/Moderator

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.

[Guest guest]

Hello

I was on imuran & plaquneil for 7 years and had good results. now i was on 300mg a day and needed no steriods during. and had no side effects.

I only had to stop it when all of a sudden my wbc dropped to 0 the fall of 08 and ended up in the hospital... for the past 8months on iv solumdl at home. Until the rhuemy got me on the mexetrexate INJECTION and plaquneil , now i am off the steriods and doing better. as i weaned off the steriods I had two feet forward 3 feet back for sometime. I am no where near remission but much better than fall of 08.

hope this helps

..

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.

[Guest guest]

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@...Date: 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 the goal 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!Kathy

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 decision based 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 have to 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@...Date: 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." - Frost

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[Guest guest]

As I understand from our doctors the lowest dose of prednisone that will do the job is best. started out on 6omg 2 times a day and was down to 5 mg a day, but now is back to 7mg a day. Our bigger issues are not the prednisone, but the other med interaction issues. They tried depakote but with everything else is is making her like a zombie. Hope all are as well as they can be.MattSubject: RE: Prednisone alternatives....To: neurosarcoidosis Date:

Saturday, June 19, 2010, 7:00 PM

, shortly after I started the Pred (back in 2002) for pulmonary & neurosarc, they also put me on Imuran. With the Imuran I was able to taper the Pred dosage after a few months, then stayed on 20mg daily for another year, still with the Imuran. After two years I was off the Pred completely, continued the Imuran another few months & tapered off it. After a few months, some of my neuro symptoms worsened & I started Methotrexate. Took it for about two years until everybody thought I was in remission, then tapered off it. That was 4 years ago & everything has been stable since (knock on particle board). I did still gain some weight from the Pred, but a lot of my weight was from Remeron. They put me on that for tremors that were causing problems as a nurse. It helped the tremors, but I packed the weight on twice as fast as I did just on Pred! I needed it to keep working, but otherwise I

wouldn't have kept taking it.

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@ yahoogroups. comFrom: specialk2002ac@ yahoo.comDate: Sat, 19 Jun 2010 15:49:26 -0700Subject: Re: Prednisone alternatives. ...

No, Rose, Prednisone is the only drug my pulm has tried. Maybe I should take this info that you gave me to my new PCP. Perhaps he will make some changes. Yes, I will do just that. Thanks, Rose ... thanks a bunch!!Have a blessed day!

From: Rose <mamadogrose@ hotmail.com>To: neurosarcoidosis@ yahoogroups. comSent: Sat, June 19, 2010 10:09:50 AMSubject: RE: Prednisone alternatives. ...

, have you tried "Prednisone- sparing" drugs like Plaquenil, Imuran or Methotrexate? Most of us need a combination; Pred alone won't get it & when you stop the Pred, the symptoms usually come back worse than ever & often in other organ systems.

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

To: Neurosarcoidosis@ yahoogroups. comFrom: specialk2002ac@ yahoo.comDate: Fri, 18 Jun 2010 18:45:48 -0700Subject: Re: Prednisone alternatives. ...

I'd like to know the answer to that question also. When I was placed on high dose Prednisone I weighed 135 lbs and within three weeks, I was almost 200 lbs with a moon face and stretch marks everywhere. When I was finally able to get to a mirrow, I scared myself. When I got better and the Prednisone was reduced, the weight fell off but I was left with a sagging face and neck. Now, I cannot afford to have it repaired because the doc said that exercise would be no use but that I would require cosmetic surgery. I have always looked a lot younger than my age; and the thing is ... my face still does if you don't see the sagging neck.Now that I am having breathing problems again, my pulm says he might have to up my Prednisone again. I said NO!!In Christ, L. -Maye

From: <pat6171 (AT) yahoo (DOT) com>To: Neurosarcoidosis@ yahoogroups. comSent: Fri, June 18, 2010 11:47:26 AMSubject: RE: Prednisone alternatives. ...

My mother recently had a open lung biopsy to determine what is causing her shortness of breath. The diagnosis was chronic bronchitis with chronic interstitial pneumonia and focal non-necrotizing granulomatous inflammation, most consistent with hypersensitivity pneumonia. The doctor wants to start treatment with 60mg of prednisone every day. Her fear is all the weight gain that can be caused by the proud and the moon face. Are there any other meds that can be used other than pred that won't cause the weight gain and still help her breathing issues?Thanks for your replies and may you all have a pain free day.

in IowaPS I think that it is Sarcoidosis but they said it is not sarc. Her oxygen levels are good her shortness of breath only happens when she is walking or climbing stairs.

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[Guest guest]

Thanks for all your valuble input my mother has started her prednison therapy and so far her appetite is about the same. She decided that if she did'nt try she would never know if she might have positive results. So far she feels like maybee she has a little more energy but is having a little trouble sleeping.

Thanks again and may everyone have a pain free day

in Iowa

--

Subject: RE: Prednisone alternatives....To: Neurosarcoidosis Date: Monday, June 21, 2010, 7:06 AM

As I understand from our doctors the lowest dose of prednisone that will do the job is best. started out on 6omg 2 times a day and was down to 5 mg a day, but now is back to 7mg a day. Our bigger issues are not the prednisone, but the other med interaction issues. They tried depakote but with everything else is is making her like a zombie. Hope all are as well as they can be.Matt

Subject: RE: Prednisone alternatives....To: neurosarcoidosis Date: Saturday, June 19, 2010, 7:00 PM

, shortly after I started the Pred (back in 2002) for pulmonary & neurosarc, they also put me on Imuran. With the Imuran I was able to taper the Pred dosage after a few months, then stayed on 20mg daily for another year, still with the Imuran. After two years I was off the Pred completely, continued the Imuran another few months & tapered off it. After a few months, some of my neuro symptoms worsened & I started Methotrexate. Took it for about two years until everybody thought I was in remission, then tapered off it. That was 4 years ago & everything has been stable since (knock on particle board). I did still gain some weight from the Pred, but a lot of my weight was from Remeron. They put me on that for tremors that were causing problems as a nurse. It helped the tremors, but I packed the weight on twice as fast as I did just on Pred! I needed it to keep working, but

otherwise I wouldn't have kept taking it.

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@ yahoogroups. comFrom: specialk2002ac@ yahoo.comDate: Sat, 19 Jun 2010 15:49:26 -0700Subject: Re: Prednisone alternatives. ...

No, Rose, Prednisone is the only drug my pulm has tried. Maybe I should take this info that you gave me to my new PCP. Perhaps he will make some changes. Yes, I will do just that. Thanks, Rose ... thanks a bunch!!Have a blessed day!

From: Rose <mamadogrose@ hotmail.com>To: neurosarcoidosis@ yahoogroups. comSent: Sat, June 19, 2010 10:09:50 AMSubject: RE: Prednisone alternatives. ... , have you tried "Prednisone- sparing" drugs like Plaquenil, Imuran or Methotrexate? Most of us need a combination; Pred alone won't get it & when you stop the Pred, the symptoms usually come back worse than ever & often in other organ systems.

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

To: Neurosarcoidosis@ yahoogroups. comFrom: specialk2002ac@ yahoo.comDate: Fri, 18 Jun 2010 18:45:48 -0700Subject: Re: Prednisone alternatives. ...

I'd like to know the answer to that question also. When I was placed on high dose Prednisone I weighed 135 lbs and within three weeks, I was almost 200 lbs with a moon face and stretch marks everywhere. When I was finally able to get to a mirrow, I scared myself. When I got better and the Prednisone was reduced, the weight fell off but I was left with a sagging face and neck. Now, I cannot afford to have it repaired because the doc said that exercise would be no use but that I would require cosmetic surgery. I have always looked a lot younger than my age; and the thing is ... my face still does if you don't see the sagging neck.Now that I am having breathing problems again, my pulm says he might have to up my Prednisone again. I said NO!!In Christ, L. -Maye

From: <pat6171 (AT) yahoo (DOT) com>To: Neurosarcoidosis@ yahoogroups. comSent: Fri, June 18, 2010 11:47:26 AMSubject: RE: Prednisone alternatives. ...

My mother recently had a open lung biopsy to determine what is causing her shortness of breath. The diagnosis was chronic bronchitis with chronic interstitial pneumonia and focal non-necrotizing granulomatous inflammation, most consistent with hypersensitivity pneumonia. The doctor wants to start treatment with 60mg of prednisone every day. Her fear is all the weight gain that can be caused by the proud and the moon face. Are there any other meds that can be used other than pred that won't cause the weight gain and still help her breathing issues?Thanks for your replies and may you all have a pain free day.

in IowaPS I think that it is Sarcoidosis but they said it is not sarc. Her oxygen levels are good her shortness of breath only happens when she is walking or climbing stairs.

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[Guest guest]

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....

 

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@...Date: Sun, 20 Jun 2010 16:39:09 -0400

Subject: 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 the goal 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!

Kathy

 

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 decision based 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 have to 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@...Date: Sun, 20 Jun 2010 11:30:28 -0400

Subject: 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. "  - Frost

Hotmail 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

[Guest guest]

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@...Date: 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....

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@...Date: 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 the goal 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!Kathy

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 decision based 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 have to 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@...Date: 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.

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