Relapse while on high dose prednisone?

[Guest guest]

Hi there. I was diagnosed with neurosarc in April and started 60 mg.

prednisone in may. My symptoms slowly got better and was at about 70%

function and just 30% of what my pain had been. The granulomas on my

face went away 90% of the way as well on treatment. I have been on

this dose for 2 1/2 months.

10 days ago I started feeling bad (no change in meds). It began with

tiredness that has led to so much exhaustion I can not get out of bed.

I am so tired it really hurts, like you are stapled to the floor. The

pain in my joints is worse than ever. I have shooting pains in my arms

and legs that is pretty painful along with a cramping feeling and

muscle weakness (10 days ago I was running now I need help walking).

My migraine headache (that I am still on lyrica for) is back.

I am at the hospital being worked up for infections and viruses, etc.

The doctors do not seem to think the disease could break through the

high dose prednisone (although we are waiting on a call back from a

Hopkins sarcoid doctor who may have seen that happen. I just wanted

to see if any of you out there have experienced anything like this in

terms of prednisone (or another sarc medication) working to acheive

remission/disease inaction: and at the same dose have the disaese

totally breakthrough???

Any insight would be so much appreciated.

Hope you have some smiles and laughs.

Thank you so much

[Guest guest]

Hi there. I was diagnosed with neurosarc in April and started 60 mg.

prednisone in may. My symptoms slowly got better and was at about 70%

function and just 30% of what my pain had been. The granulomas on my

face went away 90% of the way as well on treatment. I have been on

this dose for 2 1/2 months.

10 days ago I started feeling bad (no change in meds). It began with

tiredness that has led to so much exhaustion I can not get out of bed.

I am so tired it really hurts, like you are stapled to the floor. The

pain in my joints is worse than ever. I have shooting pains in my arms

and legs that is pretty painful along with a cramping feeling and

muscle weakness (10 days ago I was running now I need help walking).

My migraine headache (that I am still on lyrica for) is back.

I am at the hospital being worked up for infections and viruses, etc.

The doctors do not seem to think the disease could break through the

high dose prednisone (although we are waiting on a call back from a

Hopkins sarcoid doctor who may have seen that happen. I just wanted

to see if any of you out there have experienced anything like this in

terms of prednisone (or another sarc medication) working to acheive

remission/disease inaction: and at the same dose have the disaese

totally breakthrough???

Any insight would be so much appreciated.

Hope you have some smiles and laughs.

Thank you so much

[Guest guest]

HiI was started on predisone and got better but then got worse. My Dr. at the time decided that I was post menopausal and that was what was wrong. Instead my sar was flaring and in my spinal cord. My understanding is that there is no medicine that can stop the sarcoid from occurring but it suppress the symptoms.I just go by how I feel When I feel better I think I am in remission and when things kick up I think it is active again. It is very hard to tell. Right now some of my symptoms are better and others are worse. Just keep on your doctors.It is a frustrating disease. I wish you all the best.Take careelizabethecowell wrote: Hi there. I was diagnosed with neurosarc in April and started 60 mg. prednisone in may. My symptoms slowly got better and was at about 70% function and just 30% of what my pain had been. The granulomas on my face went away 90% of the way as well on treatment. I have been on this dose for 2 1/2 months. 10 days ago I started feeling bad (no change in meds). It began with tiredness that has led to so much exhaustion I can not get out of bed. I am so tired it really hurts, like you are stapled to the floor. The pain in my joints is worse than ever. I have shooting pains in my arms and legs that is pretty painful along with a cramping feeling and muscle weakness (10 days ago I was running now I need help walking). My migraine headache

(that I am still on lyrica for) is back. I am at the hospital being worked up for infections and viruses, etc. The doctors do not seem to think the disease could break through the high dose prednisone (although we are waiting on a call back from a Hopkins sarcoid doctor who may have seen that happen. I just wanted to see if any of you out there have experienced anything like this in terms of prednisone (or another sarc medication) working to acheive remission/disease inaction: and at the same dose have the disaese totally breakthrough??? Any insight would be so much appreciated. Hope you have some smiles and laughs. Thank you so much

[Guest guest]

HiI was started on predisone and got better but then got worse. My Dr. at the time decided that I was post menopausal and that was what was wrong. Instead my sar was flaring and in my spinal cord. My understanding is that there is no medicine that can stop the sarcoid from occurring but it suppress the symptoms.I just go by how I feel When I feel better I think I am in remission and when things kick up I think it is active again. It is very hard to tell. Right now some of my symptoms are better and others are worse. Just keep on your doctors.It is a frustrating disease. I wish you all the best.Take careelizabethecowell wrote: Hi there. I was diagnosed with neurosarc in April and started 60 mg. prednisone in may. My symptoms slowly got better and was at about 70% function and just 30% of what my pain had been. The granulomas on my face went away 90% of the way as well on treatment. I have been on this dose for 2 1/2 months. 10 days ago I started feeling bad (no change in meds). It began with tiredness that has led to so much exhaustion I can not get out of bed. I am so tired it really hurts, like you are stapled to the floor. The pain in my joints is worse than ever. I have shooting pains in my arms and legs that is pretty painful along with a cramping feeling and muscle weakness (10 days ago I was running now I need help walking). My migraine headache

(that I am still on lyrica for) is back. I am at the hospital being worked up for infections and viruses, etc. The doctors do not seem to think the disease could break through the high dose prednisone (although we are waiting on a call back from a Hopkins sarcoid doctor who may have seen that happen. I just wanted to see if any of you out there have experienced anything like this in terms of prednisone (or another sarc medication) working to acheive remission/disease inaction: and at the same dose have the disaese totally breakthrough??? Any insight would be so much appreciated. Hope you have some smiles and laughs. Thank you so much

[Guest guest]

, for some reason I didn't receive your original message, so I'll answer through , if she doesn't mind!

This problem is why sarc specialists recommend combined drug treatments; Prednisone with Imuran, Methotrexate, Placquenil, etc. That also allows for Prednisone-sparing, or tapering the Pred to the lowest possible dose & thereby reducing the occurrence of serious side effects. Hopefully by now the doctor from s Hopkins has weighed in (and agreed with me, of course!). Either way, you need to press for some accurate & current information on treatment of neurosarcoidosis. As you well know, this ain't gettin' it.

Please let us know how things are going.

Ramblin' Rose

Moderator

A merry heart is good medicine. Proverbs 17:22

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Relapse while on high dose prednisone?Date: Thu, 9 Aug 2007 14:34:18 -0700 (PDT)

HiI was started on predisone and got better but then got worse. My Dr. at the time decided that I was post menopausal and that was what was wrong. Instead my sar was flaring and in my spinal cord. My understanding is that there is no medicine that can stop the sarcoid from occurring but it suppress the symptoms.I just go by how I feel When I feel better I think I am in remission and when things kick up I think it is active again. It is very hard to tell. Right now some of my symptoms are better and others are worse. Just keep on your doctors.It is a frustrating disease. I wish you all the best.Take careelizabethecowell <elizwiz (AT) hotmail (DOT) com> wrote:

Hi there. I was diagnosed with neurosarc in April and started 60 mg.prednisone in may. My symptoms slowly got better and was at about 70%function and just 30% of what my pain had been. The granulomas on myface went away 90% of the way as well on treatment. I have been onthis dose for 2 1/2 months.10 days ago I started feeling bad (no change in meds). It began withtiredness that has led to so much exhaustion I can not get out of bed.I am so tired it really hurts, like you are stapled to the floor. Thepain in my joints is worse than ever. I have shooting pains in my armsand legs that is pretty painful along with a cramping feeling andmuscle weakness (10 days ago I was running now I need help walking).My migraine headache (that I am still on lyrica for) is back. I am at the hospital being worked up for infections and viruses, etc.The doctors do not seem to think the disease could break through thehigh dose prednisone (although we are waiting on a call back from aHopkins sarcoid doctor who may have seen that happen. I just wantedto see if any of you out there have experienced anything like this interms of prednisone (or another sarc medication) working to acheiveremission/disease inaction: and at the same dose have the disaesetotally breakthrough???Any insight would be so much appreciated. Hope you have some smiles and laughs.Thank you so much

Find a local pizza place, movie theater, and more….then map the best route!

[Guest guest]

, for some reason I didn't receive your original message, so I'll answer through , if she doesn't mind!

This problem is why sarc specialists recommend combined drug treatments; Prednisone with Imuran, Methotrexate, Placquenil, etc. That also allows for Prednisone-sparing, or tapering the Pred to the lowest possible dose & thereby reducing the occurrence of serious side effects. Hopefully by now the doctor from s Hopkins has weighed in (and agreed with me, of course!). Either way, you need to press for some accurate & current information on treatment of neurosarcoidosis. As you well know, this ain't gettin' it.

Please let us know how things are going.

Ramblin' Rose

Moderator

A merry heart is good medicine. Proverbs 17:22

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Relapse while on high dose prednisone?Date: Thu, 9 Aug 2007 14:34:18 -0700 (PDT)

HiI was started on predisone and got better but then got worse. My Dr. at the time decided that I was post menopausal and that was what was wrong. Instead my sar was flaring and in my spinal cord. My understanding is that there is no medicine that can stop the sarcoid from occurring but it suppress the symptoms.I just go by how I feel When I feel better I think I am in remission and when things kick up I think it is active again. It is very hard to tell. Right now some of my symptoms are better and others are worse. Just keep on your doctors.It is a frustrating disease. I wish you all the best.Take careelizabethecowell <elizwiz (AT) hotmail (DOT) com> wrote:

Hi there. I was diagnosed with neurosarc in April and started 60 mg.prednisone in may. My symptoms slowly got better and was at about 70%function and just 30% of what my pain had been. The granulomas on myface went away 90% of the way as well on treatment. I have been onthis dose for 2 1/2 months.10 days ago I started feeling bad (no change in meds). It began withtiredness that has led to so much exhaustion I can not get out of bed.I am so tired it really hurts, like you are stapled to the floor. Thepain in my joints is worse than ever. I have shooting pains in my armsand legs that is pretty painful along with a cramping feeling andmuscle weakness (10 days ago I was running now I need help walking).My migraine headache (that I am still on lyrica for) is back. I am at the hospital being worked up for infections and viruses, etc.The doctors do not seem to think the disease could break through thehigh dose prednisone (although we are waiting on a call back from aHopkins sarcoid doctor who may have seen that happen. I just wantedto see if any of you out there have experienced anything like this interms of prednisone (or another sarc medication) working to acheiveremission/disease inaction: and at the same dose have the disaesetotally breakthrough???Any insight would be so much appreciated. Hope you have some smiles and laughs.Thank you so much

Find a local pizza place, movie theater, and more….then map the best route!