Re: I wondered if anyone else feels the same?

[Guest guest]

Stu,

If the steroids work for you-- great! Yeah, the wreak havoc on your body-- but so does the sarc.

Steroids are something that you cannot come off quickly-- it takes a long, long time to wean off them--with episodes of having to increase the dose, then back it down even slower, and this can repeat itself many times over.

What happens with steroids is that when we take either the oral or IV-- our adrenals stop making the 15mg of cortosol that they make each day. So, you have to retrain your adrenals to make this hormone-- or you end up with the adrenal insufficiency (rapid heartbeat, panic, pain, confusion, sweats, chills, etc.) The adrenals seem to like having been on vacation, so getting them to kick in with this hormone is a tough journey.

Some people NEED to stay on steroids forever-- and by adding another immunosupressant to the mix- can get better control over their sarc.

As you know, steroids make blood sugars go out of control, they harden your arteries, they thin your bones. Some people get early cataracts (over 97% of the population will get cataracts- it's a natural aging process of the lens of the eye)- but we may deal with it when we are in our 50's or 60's. (We would have had to deal with it in our 60's or 70's anyway.)

So what you do is watch your diet, get the calcium you need- (if your sarc produces too much calcium, then supplements may be out of the picture), get some form of weight bearing exercise to keep the bones as strong as possible.,*(even if it's just 5 or 6 min on a treadmill), and do what you know to do to take care of the issues as well as you can.

We all know that we can only do a small amount of what we used to do-- but do the small amount.

I agree with you completely, damn the side effects at least for now- we're alive!

Take care,

Tracie

NS Co-owner/moderatorGet a sneak peek of the all-new AOL.com.

[Guest guest]

Stu, I apologize because I know that you have told us this before, but would you please tell us again--are you on other meds, like Methotrexate, Plaquenil, Imuran, Cellcept, etc., or have you tried them in the past & couldn't take them for some reason? Trying various combinations of these drugs will often allow you to at least reduce the amount of steroids needed to keep symptoms under control, if not go completely off. But reducing steroid dosage has to be done very, verrrrry, slowly. I'm not as familiar with the IV dosing as the oral, but it seems like jumping from weekly to every 3 weeks is much too fast. Maybe some other members who have experience with the IV dosing can add more specifics.

I asked my neurologist early on if I had the right to choose my own poison. He kind of skirted the issue & never did give me a straight answer. Having been a primary care provider for many years, I know the dilemma from the provider's side. No matter how carefully you explain & document risks & benefits of various options, no matter that the patient signs an "informed consent," if things go bad you can still be sued & found liable. Even by patients you have been close to, that you would never think would sue you. So it's a very narrow fence for the docs to straddle. Patient choice is extremely important, but a malpractice lawsuit, even if the provider eventually is cleared, can be devastating. When you have done the best you could, with the information you had, and you already hurt for the patient & family, a suit can feel like a betrayal of the mutual trust between you & the patient. And for a solo practitioner, the office downtime can destroy the practice. By some miracle, in 20 years as a nurse-midwife, I was never sued. Not because I was such a perfect midwife--I had my share of poor outcomes & tragedies, as well as disgruntled clients even when things went well--but I think a combination of time spent with my families, careful documentation & communication, plus plain old luck, seem to have saved me from that experience.

So, the short version is that even doctors who believe in patient autonomy are going to be hesitant about providing treatment they don't believe to be the best or safest choice.

Ramblin' Rose

Moderator

A merry heart is good medicine. Proverbs 17:22

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: I wondered if anyone else feels the same?Date: Sat, 25 Aug 2007 19:30:28 -0000

Ive had this running thing with my neuro, he is trying really hard toget me off the steriods, and I understand why, they are terrible, butnothing else is keeping me going so I am unwilling to stop using themuntill somthin g wlse comes along that works. Recently he moved myweekly infusion of 1/2 gram solumedrol to every three weeks to seewhat woud happen. Much as I thogt it didnt work too well and I gotreall bad raelly quicly. By yesterday, I was just about unable tomove, I made it to work but by 10 am things were getting worse by themometn, my mind was getting fuzzy, my gait was so far off I was havingtrouble walking even small distances, I was very weak trembling allthe time, vision was dark and fuzzy speak was shaky and I was bitingmy tongue which already hurt repeatedly, my face was starting to droopand I felt panicky like I do when my mind starts to go out of whack,so Lizzy called the Neuros office and they had me in there by 11 and aneedle in my hand by 1130, by noon we were watching as the bag waspumping steriods into me and this morning although Im still shaky andsweating alot, my mind is clearere and I feel much better. Thank God!!!I know the steriods are slowly destroying my body, but at least fornow I need them and dont give a damn about the consequenses!!!!!! Maybe I regret that later, but for now………..Screw it! Am I alone,doesnt it seem worth it to pau the price later for some king of lifenow? My docs dont agree althoujg they are letting me kall the shotsfor the most part, until they looes their minds and insist we trythings that nearly kill me llike this, but I dont think thy get it atall. Lizzy I think understands why I wont quit using the steriodsuntil thye have this under control a whol.e lot better, but nobodyelse seeems to and Im starting to feels a bit embattled., not that iunused to fighting battles Im just a bit tireed at the momment. lol/so I wondered what you folks thnk, since Im sure youve probablyfacedd the same kinds of dilemas during your fights. Mostly out ofcuroisity.God bless, and sorry about the typing, just dont have the energy to goback and fizs it.Stu

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[Guest guest]

Stu I feel it's quality of life not just quantity. Everytime they tried to take me off steroids I had severe trouble walking. My bones are thinning but I'm on Actonel & vitamin D(when I remember to take them but don't tell the doc LOL) I am more concerned about getting off the Cytoxan since it's been over 2 years since I started it. I'd rather end up in a wheelchair than end up with bladder cancer! I even bought Barbie's friend Becky the school photographer doll. She's in a wheelchair & is dressed in my favorite outfit, blue jeans, a plaid flannel shirt & hightop gym shoe! I have her where I can see her & I'm just trying to get used to the idea that I may end up that way too someday. I felt like I Superwoman when I was on the solumedrol. The problem with that is I don't sleep or eat on it. I also had major steroid rages! I guess every med has it's

price......That's my story & I'm sticking to it! Join our Sock Challenge for Orphans in Kazakhstan - 265 pairs needed by 9/15/07 http://groups. yahoo.com/ group/Mittens_ for_Akkol/ grannylunatic@...

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[Guest guest]

Stu, I really understand your dilemma. I have been on various amounts

of prednisone since 2000. I am always trying to taper off but usually

get stuck at 12 mg a day. That's when the disease acts up and they

have to put me on a high dose to get things calmed down again, then

the slow taper. The only way I have been able to get to lower doses is

an alternate day VERY GRADUAL taper schedule. For example, if I am

taking 25 mg a day, then I will start to taper EVERY OTHER DAY (5 mg

less). I will keep that dose for 2 weeks, then try another taper of 5

mg less. This is how it looks:

Sunday 25 mg, Monday 20 mg, Tuesday 25 mg, Wednesday 20 mg, Thursday

25 mg, Friday 20 mg, Saturday 25 mg

Sunday 20 mg, Monday 25 mg, Tuesday 20 mg, Wednesday 25 mg, Thursday

20 mg, Friday 25 mg, Saturday 20 mg

THEN try another taper if you still feel OK (keeping the 25 mg days):

Sunday 25 mg, Monday 15 mg, Tuesday 25 mg, Wednesday 15 mg, Thursday

25 mg, Friday 15 mg, Saturday 25 mg (continue for a second week, etc...)

Get the idea? If you taper too quickly you get rebound -- sick again.

The problem is everyone is different. You may have to taper more

slowly, say 2 and a half mg every 2 weeks. Keep careful track of your

symptoms. I always feel some symptoms the first few days of a taper

but have learned when they are mild enough to ignore or more

significant, and mean trouble. Keep a journal. It really helps to look

back at your dosages and symptoms. I use a weekly planner and just jot

down my dose for the day and if I have any symptoms. I take it with me

to the dr. Good luck.

-

[Guest guest]

Stu, I really understand your dilemma. I have been on various amounts

of prednisone since 2000. I am always trying to taper off but usually

get stuck at 12 mg a day. That's when the disease acts up and they

have to put me on a high dose to get things calmed down again, then

the slow taper. The only way I have been able to get to lower doses is

an alternate day VERY GRADUAL taper schedule. For example, if I am

taking 25 mg a day, then I will start to taper EVERY OTHER DAY (5 mg

less). I will keep that dose for 2 weeks, then try another taper of 5

mg less. This is how it looks:

Sunday 25 mg, Monday 20 mg, Tuesday 25 mg, Wednesday 20 mg, Thursday

25 mg, Friday 20 mg, Saturday 25 mg

Sunday 20 mg, Monday 25 mg, Tuesday 20 mg, Wednesday 25 mg, Thursday

20 mg, Friday 25 mg, Saturday 20 mg

THEN try another taper if you still feel OK (keeping the 25 mg days):

Sunday 25 mg, Monday 15 mg, Tuesday 25 mg, Wednesday 15 mg, Thursday

25 mg, Friday 15 mg, Saturday 25 mg (continue for a second week, etc...)

Get the idea? If you taper too quickly you get rebound -- sick again.

The problem is everyone is different. You may have to taper more

slowly, say 2 and a half mg every 2 weeks. Keep careful track of your

symptoms. I always feel some symptoms the first few days of a taper

but have learned when they are mild enough to ignore or more

significant, and mean trouble. Keep a journal. It really helps to look

back at your dosages and symptoms. I use a weekly planner and just jot

down my dose for the day and if I have any symptoms. I take it with me

to the dr. Good luck.

-

[Guest guest]

Well I aint givin i just yet, talked with the doc today, hes putting

me back on weekly infusions, at leaast until the mtx has had at least

six onths to work and the embrel has been on board for a couple more

months then well fight it out again. but for now the shaking is

better and I can walk and think and talk just not alll at once, but

thne i never could do them all at once not even while chewig gum so i

guess im not outanything!!!

Stu

>

> Stu,

> If the steroids work for you-- great! Yeah, the wreak havoc on

your body--

> but so does the sarc.

> Steroids are something that you cannot come off quickly-- it takes

a long,

> long time to wean off them--with episodes of having to increase the

dose, then

> back it down even slower, and this can repeat itself many times over.

> What happens with steroids is that when we take either the oral or

IV-- our

> adrenals stop making the 15mg of cortosol that they make each day.

So, you

> have to retrain your adrenals to make this hormone-- or you end up

with the

> adrenal insufficiency (rapid heartbeat, panic, pain, confusion,

sweats, chills,

> etc.) The adrenals seem to like having been on vacation, so

getting them to

> kick in with this hormone is a tough journey.

> Some people NEED to stay on steroids forever-- and by adding another

> immunosupressant to the mix- can get better control over their sarc.

> As you know, steroids make blood sugars go out of control, they

harden your

> arteries, they thin your bones. Some people get early cataracts

(over 97% of

> the population will get cataracts- it's a natural aging process of

the lens

> of the eye)- but we may deal with it when we are in our 50's or

60's. (We

> would have had to deal with it in our 60's or 70's anyway.)

> So what you do is watch your diet, get the calcium you need- (if

your sarc

> produces too much calcium, then supplements may be out of the

picture), get

> some form of weight bearing exercise to keep the bones as strong as

> possible.,*(even if it's just 5 or 6 min on a treadmill), and do

what you know to do to

> take care of the issues as well as you can.

> We all know that we can only do a small amount of what we used to

do-- but

> do the small amount.

> I agree with you completely, damn the side effects at least for

now- we're

> alive!

>

> Take care,

> Tracie

> NS Co-owner/moderator

>

>

>

> ************************************** Get a sneak peek of the

all-new AOL at

> http://discover.aol.com/memed/aolcom30tour

>

[Guest guest]

Well I aint givin i just yet, talked with the doc today, hes putting

me back on weekly infusions, at leaast until the mtx has had at least

six onths to work and the embrel has been on board for a couple more

months then well fight it out again. but for now the shaking is

better and I can walk and think and talk just not alll at once, but

thne i never could do them all at once not even while chewig gum so i

guess im not outanything!!!

Stu

>

> Stu,

> If the steroids work for you-- great! Yeah, the wreak havoc on

your body--

> but so does the sarc.

> Steroids are something that you cannot come off quickly-- it takes

a long,

> long time to wean off them--with episodes of having to increase the

dose, then

> back it down even slower, and this can repeat itself many times over.

> What happens with steroids is that when we take either the oral or

IV-- our

> adrenals stop making the 15mg of cortosol that they make each day.

So, you

> have to retrain your adrenals to make this hormone-- or you end up

with the

> adrenal insufficiency (rapid heartbeat, panic, pain, confusion,

sweats, chills,

> etc.) The adrenals seem to like having been on vacation, so

getting them to

> kick in with this hormone is a tough journey.

> Some people NEED to stay on steroids forever-- and by adding another

> immunosupressant to the mix- can get better control over their sarc.

> As you know, steroids make blood sugars go out of control, they

harden your

> arteries, they thin your bones. Some people get early cataracts

(over 97% of

> the population will get cataracts- it's a natural aging process of

the lens

> of the eye)- but we may deal with it when we are in our 50's or

60's. (We

> would have had to deal with it in our 60's or 70's anyway.)

> So what you do is watch your diet, get the calcium you need- (if

your sarc

> produces too much calcium, then supplements may be out of the

picture), get

> some form of weight bearing exercise to keep the bones as strong as

> possible.,*(even if it's just 5 or 6 min on a treadmill), and do

what you know to do to

> take care of the issues as well as you can.

> We all know that we can only do a small amount of what we used to

do-- but

> do the small amount.

> I agree with you completely, damn the side effects at least for

now- we're

> alive!

>

> Take care,

> Tracie

> NS Co-owner/moderator

>

>

>

> ************************************** Get a sneak peek of the

all-new AOL at

> http://discover.aol.com/memed/aolcom30tour

>

[Guest guest]

Stu,I too have been trying to decrease the prednisone but it just isn't possible yet. My rheum said NO WAY. I've been on pred everyday for 3 yrs. When they try to lower my dose my heart acts out with irreg beats and racing. Since I have cardiac sarcoidosis (AICD included) that is a big problem. I am on 3 different insulins since the steroids. I thank God for the prednisone b/c without it I wouldn't be here at all. So I say "give me the prednisone" b/c this life is better than no life. God bless you,Beckylizzyandstu wrote: Ive

had this running thing with my neuro, he is trying really hard to get me off the steriods, and I understand why, they are terrible, but nothing else is keeping me going so I am unwilling to stop using them untill somthin g wlse comes along that works. Recently he moved my weekly infusion of 1/2 gram solumedrol to every three weeks to see what woud happen. Much as I thogt it didnt work too well and I got reall bad raelly quicly. By yesterday, I was just about unable to move, I made it to work but by 10 am things were getting worse by the mometn, my mind was getting fuzzy, my gait was so far off I was having trouble walking even small distances, I was very weak trembling all the time, vision was dark and fuzzy speak was shaky and I was biting my tongue which already hurt repeatedly, my face was starting to droop and I felt panicky like I do when my mind starts to go out of whack, so Lizzy called the Neuros office and they

had me in there by 11 and a needle in my hand by 1130, by noon we were watching as the bag was pumping steriods into me and this morning although Im still shaky and sweating alot, my mind is clearere and I feel much better. Thank God!!! I know the steriods are slowly destroying my body, but at least for now I need them and dont give a damn about the consequenses!!!!!! Maybe I regret that later, but for now………..Screw it! Am I alone, doesnt it seem worth it to pau the price later for some king of life now? My docs dont agree althoujg they are letting me kall the shots for the most part, until they looes their minds and insist we try things that nearly kill me llike this, but I dont think thy get it at all. Lizzy I think understands why I wont quit using the steriods until thye have this under control a whol.e lot better, but nobody else seeems to and Im starting to feels a bit embattled., not that i

unused to fighting battles Im just a bit tireed at the momment. lol /so I wondered what you folks thnk, since Im sure youve probably facedd the same kinds of dilemas during your fights. Mostly out of curoisity. God bless, and sorry about the typing, just dont have the energy to go back and fizs it. Stu

Choose the right car based on your needs. Check out Yahoo! Autos new Car Finder tool.

[Guest guest]

Stu,I too have been trying to decrease the prednisone but it just isn't possible yet. My rheum said NO WAY. I've been on pred everyday for 3 yrs. When they try to lower my dose my heart acts out with irreg beats and racing. Since I have cardiac sarcoidosis (AICD included) that is a big problem. I am on 3 different insulins since the steroids. I thank God for the prednisone b/c without it I wouldn't be here at all. So I say "give me the prednisone" b/c this life is better than no life. God bless you,Beckylizzyandstu wrote: Ive

had this running thing with my neuro, he is trying really hard to get me off the steriods, and I understand why, they are terrible, but nothing else is keeping me going so I am unwilling to stop using them untill somthin g wlse comes along that works. Recently he moved my weekly infusion of 1/2 gram solumedrol to every three weeks to see what woud happen. Much as I thogt it didnt work too well and I got reall bad raelly quicly. By yesterday, I was just about unable to move, I made it to work but by 10 am things were getting worse by the mometn, my mind was getting fuzzy, my gait was so far off I was having trouble walking even small distances, I was very weak trembling all the time, vision was dark and fuzzy speak was shaky and I was biting my tongue which already hurt repeatedly, my face was starting to droop and I felt panicky like I do when my mind starts to go out of whack, so Lizzy called the Neuros office and they

had me in there by 11 and a needle in my hand by 1130, by noon we were watching as the bag was pumping steriods into me and this morning although Im still shaky and sweating alot, my mind is clearere and I feel much better. Thank God!!! I know the steriods are slowly destroying my body, but at least for now I need them and dont give a damn about the consequenses!!!!!! Maybe I regret that later, but for now………..Screw it! Am I alone, doesnt it seem worth it to pau the price later for some king of life now? My docs dont agree althoujg they are letting me kall the shots for the most part, until they looes their minds and insist we try things that nearly kill me llike this, but I dont think thy get it at all. Lizzy I think understands why I wont quit using the steriods until thye have this under control a whol.e lot better, but nobody else seeems to and Im starting to feels a bit embattled., not that i

unused to fighting battles Im just a bit tireed at the momment. lol /so I wondered what you folks thnk, since Im sure youve probably facedd the same kinds of dilemas during your fights. Mostly out of curoisity. God bless, and sorry about the typing, just dont have the energy to go back and fizs it. Stu

Choose the right car based on your needs. Check out Yahoo! Autos new Car Finder tool.

[Guest guest]

I dont know guys every time thy tried to lower me below 20 mg of pred

before they strated they solumedrol I got sicker than heck, then I

started seeing dr woo, and she said it was just too fast so she said

lower it 1mg per two weeks until I reached 15 mg then stop for two

weeks the start agin etc, down to 5 and see how it went, well things

were goi g pretty good down to about 18 mg until I started a major

flare and they started the solumedrol at 500 mg every week and until

they did that little number onn me last week thats how it was and

things weree going ok, now were back to 500 per week until at least

winter and well see what happens after that, Im NOT going through that

again for awhile, !!!!!!!!!!!!

>

> Stu, I really understand your dilemma. I have been on various amounts

> of prednisone since 2000. I am always trying to taper off but usually

> get stuck at 12 mg a day. That's when the disease acts up and they

> have to put me on a high dose to get things calmed down again, then

> the slow taper. The only way I have been able to get to lower doses is

> an alternate day VERY GRADUAL taper schedule. For example, if I am

> taking 25 mg a day, then I will start to taper EVERY OTHER DAY (5 mg

> less). I will keep that dose for 2 weeks, then try another taper of 5

> mg less. This is how it looks:

> Sunday 25 mg, Monday 20 mg, Tuesday 25 mg, Wednesday 20 mg, Thursday

> 25 mg, Friday 20 mg, Saturday 25 mg

>

> Sunday 20 mg, Monday 25 mg, Tuesday 20 mg, Wednesday 25 mg, Thursday

> 20 mg, Friday 25 mg, Saturday 20 mg

>

> THEN try another taper if you still feel OK (keeping the 25 mg days):

>

> Sunday 25 mg, Monday 15 mg, Tuesday 25 mg, Wednesday 15 mg, Thursday

> 25 mg, Friday 15 mg, Saturday 25 mg (continue for a second week, etc...)

>

> Get the idea? If you taper too quickly you get rebound -- sick again.

> The problem is everyone is different. You may have to taper more

> slowly, say 2 and a half mg every 2 weeks. Keep careful track of your

> symptoms. I always feel some symptoms the first few days of a taper

> but have learned when they are mild enough to ignore or more

> significant, and mean trouble. Keep a journal. It really helps to look

> back at your dosages and symptoms. I use a weekly planner and just jot

> down my dose for the day and if I have any symptoms. I take it with me

> to the dr. Good luck.

> -

>

[Guest guest]

Stu, I can imagine how you feel. But if things start going south on the SoluMedrol & she wants to reduce it again, it seems like instead of going from every week to every three weeks, go from every week to every 8 days, or 9 days, then after a few weeks, every 10 or 11 days. See what I'm saying? Jumping from every 7 days to every 21 seems pretty extreme, and although I'm sure that you are into X-treme sports, even Evil Knievel wouldn't want to try this! Let's hope that you are one who can take the steroids for a good long while without major problems.

Ramblin' Rose

Moderator

A merry heart is good medicine. Proverbs 17:22

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: I wondered if anyone else feels the same?Date: Wed, 29 Aug 2007 01:39:11 -0000

I dont know guys every time thy tried to lower me below 20 mg of predbefore they strated they solumedrol I got sicker than heck, then Istarted seeing dr woo, and she said it was just too fast so she saidlower it 1mg per two weeks until I reached 15 mg then stop for twoweeks the start agin etc, down to 5 and see how it went, well thingswere goi g pretty good down to about 18 mg until I started a majorflare and they started the solumedrol at 500 mg every week and untilthey did that little number onn me last week thats how it was andthings weree going ok, now were back to 500 per week until at leastwinter and well see what happens after that, Im NOT going through thatagain for awhile, !!!!!!!!!!!!>> Stu, I really understand your dilemma. I have been on various amounts> of prednisone since 2000. I am always trying to taper off but usually> get stuck at 12 mg a day. That's when the disease acts up and they> have to put me on a high dose to get things calmed down again, then> the slow taper. The only way I have been able to get to lower doses is> an alternate day VERY GRADUAL taper schedule. For example, if I am> taking 25 mg a day, then I will start to taper EVERY OTHER DAY (5 mg> less). I will keep that dose for 2 weeks, then try another taper of 5> mg less. This is how it looks:> Sunday 25 mg, Monday 20 mg, Tuesday 25 mg, Wednesday 20 mg, Thursday> 25 mg, Friday 20 mg, Saturday 25 mg> > Sunday 20 mg, Monday 25 mg, Tuesday 20 mg, Wednesday 25 mg, Thursday> 20 mg, Friday 25 mg, Saturday 20 mg> > THEN try another taper if you still feel OK (keeping the 25 mg days):> > Sunday 25 mg, Monday 15 mg, Tuesday 25 mg, Wednesday 15 mg, Thursday> 25 mg, Friday 15 mg, Saturday 25 mg (continue for a second week, etc...)> > Get the idea? If you taper too quickly you get rebound -- sick again.> The problem is everyone is different. You may have to taper more> slowly, say 2 and a half mg every 2 weeks. Keep careful track of your> symptoms. I always feel some symptoms the first few days of a taper> but have learned when they are mild enough to ignore or more> significant, and mean trouble. Keep a journal. It really helps to look> back at your dosages and symptoms. I use a weekly planner and just jot> down my dose for the day and if I have any symptoms. I take it with me> to the dr. Good luck.> ->

Learn.Laugh.Share. Reallivemoms is right place!

[Guest guest]

The only luck I have found is tapering EVERY OTHER DAY, leaving one

day with the higher dose, until day two is down to zero. For example:

now I take 25 mg on day one, 20 mg on day two. Since I taper ONLY ON

THE SECOND DAY I will eventually (many months from now) be taking 25

mg on day one and zero on day two.

If all goes well, I can then start to taper the 25 mg down. I know

this sounds confusing, but the alternate day taper has been the only

way I can taper without getting sick. Not sure why this works better

but my neurologist recommended it and it's the best I've found. Even

with that I have not been able to get below the 11 mg every other day.

[Guest guest]

The only luck I have found is tapering EVERY OTHER DAY, leaving one

day with the higher dose, until day two is down to zero. For example:

now I take 25 mg on day one, 20 mg on day two. Since I taper ONLY ON

THE SECOND DAY I will eventually (many months from now) be taking 25

mg on day one and zero on day two.

If all goes well, I can then start to taper the 25 mg down. I know

this sounds confusing, but the alternate day taper has been the only

way I can taper without getting sick. Not sure why this works better

but my neurologist recommended it and it's the best I've found. Even

with that I have not been able to get below the 11 mg every other day.

[Guest guest]

Im with you kiddo, three weeks was wakko! and she didnt even give me

one o them really neat outfits like Evil used to wear!!!! Course Im

not so sure about them lykra pants with this here Pred indused belly

but I already got the airstreamed head what with no hair and all, no

need for a helmet here! Put a cape on me and Ill look just like a

pregnant bullet limping through the sky!!!!!!! and dripping into the

drink, hmmmmmmm maaybe this isnt such a good idea after all, shoot

guess ill just stick to tossin cotton balls at my dog for excitement

and try droppng the meds a little slower!!!!!!

Thinnk I need to cool down you got me all hot and bothered!!

[Guest guest]

Ill tell you guys, I get frustrated with the pred sometimes because I

know it isnt good for us, and i know the docs are always telling us to

get off it, but Ive been on it for over 12 years now, and nothing is

going to convince me that we are EVER going to find anytnhing that is

going to completely replace it no matter what they do. Besindes, at

this poinnt, I think i might just miss is, its been in my ritual for

so long now I dont know if Id know what to do without it!

Stu

Ive had this running thing with my neuro, he is trying really hard to

> get me off the steriods, and I understand why, they are terrible, but

> nothing else is keeping me going so I am unwilling to stop using them

> untill somthin g wlse comes along that works. Recently he moved my

> weekly infusion of 1/2 gram solumedrol to every three weeks to see

> what woud happen. Much as I thogt it didnt work too well and I got

> reall bad raelly quicly. By yesterday, I was just about unable to

> move, I made it to work but by 10 am things were getting worse by the

> mometn, my mind was getting fuzzy, my gait was so far off I was having

> trouble walking even small distances, I was very weak trembling all

> the time, vision was dark and fuzzy speak was shaky and I was biting

> my tongue which already hurt repeatedly, my face was starting to droop

> and I felt panicky like I do when my mind starts to go out of whack,

> so Lizzy called the Neuros office and they had me in there by 11 and a

> needle in my hand by 1130, by noon we were watching as the bag was

> pumping steriods into me and this morning although Im still shaky and

> sweating alot, my mind is clearere and I feel much better. Thank

God!!!

>

> I know the steriods are slowly destroying my body, but at least for

> now I need them and dont give a damn about the consequenses!!!!!!

> Maybe I regret that later, but for now………..Screw it! Am I alone,

> doesnt it seem worth it to pau the price later for some king of life

> now? My docs dont agree althoujg they are letting me kall the shots

> for the most part, until they looes their minds and insist we try

> things that nearly kill me llike this, but I dont think thy get it at

> all. Lizzy I think understands why I wont quit using the steriods

> until thye have this under control a whol.e lot better, but nobody

> else seeems to and Im starting to feels a bit embattled., not that i

> unused to fighting battles Im just a bit tireed at the momment. lol

>

> /so I wondered what you folks thnk, since Im sure youve probably

> facedd the same kinds of dilemas during your fights. Mostly out of

> curoisity.

>

> God bless, and sorry about the typing, just dont have the energy to go

> back and fizs it.

>

> Stu

>

>

>

>

>

>

> ---------------------------------

> Choose the right car based on your needs. Check out Yahoo! Autos

new Car Finder tool.

>

[Guest guest]

lykra pants with this here Pred indused bellyStu, you would probably look at least as good as Jack Black in "Nacho Libre."

Ramblin' Rose

Moderator

A merry heart is good medicine. Proverbs 17:22

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: I wondered if anyone else feels the same?Date: Wed, 29 Aug 2007 22:39:38 -0000

Im with you kiddo, three weeks was wakko! and she didnt even give meone o them really neat outfits like Evil used to wear!!!! Course Imnot so sure about them lykra pants with this here Pred indused bellybut I already got the airstreamed head what with no hair and all, noneed for a helmet here! Put a cape on me and Ill look just like apregnant bullet limping through the sky!!!!!!! and dripping into thedrink, hmmmmmmm maaybe this isnt such a good idea after all, shootguess ill just stick to tossin cotton balls at my dog for excitementand try droppng the meds a little slower!!!!!!Thinnk I need to cool down you got me all hot and bothered!!

Puzzles, trivia teasers, word scrambles and more. Play for your chance to win!

[Guest guest]

yep, specially when I am a runnin round with my red panty hose on,

baby Im HO T T hot!!!!!!!!!!!!!!!!!!!!!!

or is that the radiator steamin in the corner????

never could git that straight

wondered why Lizzy kept laughin at me when we was z a datin

her mom too

I thought I looked pretty good

red leo tards

and a pair _ o black Keds

Her mom always called me her favorite tard I thought that was a comp

l eeeeeeeee ment

HMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMM

some days it jest don pay to get up

nope!

Think Ill jes get me back to bed...........sides, thees tards feels

pretty good whens I sleeps in them.

So who says Predinosone affects the brains,,,,,,,I is a smert as I

ever were!!!!!!!

stnu

[Guest guest]

it took me a long long llloooonnnnng time to get off prednisilone

tabs, after being on high dose of80/60 alt day.

included use of other inflammatories.

when sarcoid flared up use of drip fixes.

big probs around 22.5 daily. then introduced very slow withdrawal,

using a mixture of 5mg, 2.5mg and 1mg tabs. and keeping one day at

20mg very very slowly dropped.

it took allmost six years.

plus i used lavender oil 4 rexation

vit c 500 mg daily

fat free diet, sugar free (well pretty much), and low salt.

cut out all pork (that made me feel so ill)

i felt so often completely alone. have never met anybody with

neurosarcoid. never lost my sense of humour though, and i have

grown much stronger within.

sarcoid still grumbles, have long term mobility and coordination

probs, cataracts and blind spots. and am getting old!

but im still a kid at heart and allways will be.

[Guest guest]

it took me a long long llloooonnnnng time to get off prednisilone

tabs, after being on high dose of80/60 alt day.

included use of other inflammatories.

when sarcoid flared up use of drip fixes.

big probs around 22.5 daily. then introduced very slow withdrawal,

using a mixture of 5mg, 2.5mg and 1mg tabs. and keeping one day at

20mg very very slowly dropped.

it took allmost six years.

plus i used lavender oil 4 rexation

vit c 500 mg daily

fat free diet, sugar free (well pretty much), and low salt.

cut out all pork (that made me feel so ill)

i felt so often completely alone. have never met anybody with

neurosarcoid. never lost my sense of humour though, and i have

grown much stronger within.

sarcoid still grumbles, have long term mobility and coordination

probs, cataracts and blind spots. and am getting old!

but im still a kid at heart and allways will be.

[Guest guest]

Hi, I'm coming off prednisilone as well and have been getting many headaches (behind the eyes), I never had these before. I'm scheduled to see my Dr. in two weeks and will ask...but I was wondering if anyone else is experiencing the same. Ricksusanmpoya wrote: it took me a long long llloooonnnnng time to get off prednisilone tabs, after being on high dose of80/60 alt day.included use of other inflammatories.when sarcoid flared up use of drip fixes.big probs around 22.5

daily. then introduced very slow withdrawal, using a mixture of 5mg, 2.5mg and 1mg tabs. and keeping one day at 20mg very very slowly dropped.it took allmost six years.plus i used lavender oil 4 rexationvit c 500 mg dailyfat free diet, sugar free (well pretty much), and low salt.cut out all pork (that made me feel so ill)i felt so often completely alone. have never met anybody with neurosarcoid. never lost my sense of humour though, and i have grown much stronger within. sarcoid still grumbles, have long term mobility and coordination probs, cataracts and blind spots. and am getting old!but im still a kid at heart and allways will be.

Sick sense of humor? Visit Yahoo! TV's Comedy with an Edge to see what's on, when.

[Guest guest]

Rick I haven't experienced that but above my eyelids and under my eyebrows have gotten really light discoloration and the doctor said it was due to swelling under my eyes geesh, I'm using desotin ointment with yep, more steroids!

-- Re: Re: I wondered if anyone else feels the same?

Hi,

I'm coming off prednisilone as well and have been getting many headaches (behind the eyes), I never had these before. I'm scheduled to see my Dr. in two weeks and will ask...but I was wondering if anyone else is experiencing the same.

Ricksusanmpoya wrote:

it took me a long long llloooonnnnng time to get off prednisilone tabs, after being on high dose of80/60 alt day.included use of other inflammatories.when sarcoid flared up use of drip fixes.big probs around 22.5 daily. then introduced very slow withdrawal, using a mixture of 5mg, 2.5mg and 1mg tabs. and keeping one day at 20mg very very slowly dropped.it took allmost six years.plus i used lavender oil 4 rexationvit c 500 mg dailyfat free diet, sugar free (well pretty much), and low salt.cut out all pork (that made me feel so ill)i felt so often completely alone. have never met anybody with neurosarcoid. never lost my sense of humour though, and i have grown much stronger within. sarcoid still grumbles, have long term mobility and coordination probs, cataracts and blind spots. and am getting old!but im still a kid at heart and allways will be.

Sick sense of humor? Visit Yahoo! TV's Comedy with an Edge to see what's on, when.

[Guest guest]

Stu,

I would like to see a picture of that!

Terri G.

[Guest guest]

Hey Rick,

For whatever its worth, I have noticed in the past, before the

solumedrol, that whenever they adjusted the pred, by too large a dose

i would get headached behind the eyes just like you are describeing,

but it didnt matter if the dosage went up or down, and since we

changed to both pred and solumedrol I havent had those headached, so I

have no (^ & $%(^*^ clue what this means, just thought it was kind of

intersesting.,, Hope it helps.

God Bless

STu

> it took me a long long llloooonnnnng time to get off

prednisilone

> tabs, after being on high dose of80/60 alt day.

> included use of other inflammatories.

> when sarcoid flared up use of drip fixes.

> big probs around 22.5 daily. then introduced very slow withdrawal,

> using a mixture of 5mg, 2.5mg and 1mg tabs. and keeping one day at

> 20mg very very slowly dropped.

> it took allmost six years.

>

> plus i used lavender oil 4 rexation

> vit c 500 mg daily

> fat free diet, sugar free (well pretty much), and low salt.

> cut out all pork (that made me feel so ill)

>

> i felt so often completely alone. have never met anybody with

> neurosarcoid. never lost my sense of humour though, and i have

> grown much stronger within.

>

> sarcoid still grumbles, have long term mobility and coordination

> probs, cataracts and blind spots. and am getting old!

>

> but im still a kid at heart and allways will be.

>

>

>

>

>

>

> ---------------------------------

> Sick sense of humor? Visit Yahoo! TV's Comedy with an Edge to see

what's on, when.

>

[Guest guest]

Hi Rick,

Several weeks ago my Neuro is trying to reduce my Pred a little too

quickly and I noticed headaches every day almost immediately. I had

originally been on 80mg per day, and he dropped me down to 80mg one

day and 40mg the next day. I didn't get any better symptom-wise, but

it did shrink the Sarc in my spinal cord and brain stem quite

noticeably. He then dropped me down several months later to 60mg one

day and none the next day. This was several weeks ago and the one

where I really noticed the headaches. I spoke with the on-call doc

this past Monday due to my neuro being out of town, and he told me to

take 30mg on the days my neuro had me not taking any. I have noticed

I am getting fewer headaches and they are more mild and don't last

very long. I have noticed that the pain in my neck has gotten worse

in the last several weeks and it is radiating down my spinal cord to

the middle of my back, and I am extremely lightheaded and sometimes

feel as if I am going to black out. I was the one who really wanted

to reduce the Pred, but it looks like we are going to have to do it

much more slowly.

To the NS group,

I am not new to the website, but I haven't written in a long time. I

have been reading the messages almost every day since May (when I was

able to get the Internet back up). You may remember me as Bobblehead

(you guys teased about that...by the way, where is

?). I am only on Prednisone...haven't had any Solumedrol IV's

since March. I have asked my Neuro about adding other medications to

the Prednisone to see if my symptoms would ease up. I have been

diagnosed with NS in the spinal cord and brain stem, and just

recently they removed what they thought was a cyst from my female

area, but I took the pathology report to my Neuro when I saw him

several weeks ago and he said it was a Sarcoid...I said " Down

There???!!! " I guess you can get Sarcs anywhere!!! Sorry if that

embarrassed anyone! Anyway, my Neuro doesn't seem to want to add any

other meds to the Pred since it has helped to shrink the Sarc. I'm

just getting really frustrated because my symptoms are still as bad

as ever. I have numbness and tingling in all of my extremities as

well as from my shoulders on down to my feet. I have joint pain in

my knees, weakness all over, extreme fatigue (I sleep a ton!), neck

and back pain, bobblehead, unsteady, blurry eyes, foot cramping,

coughing and choking, lightheadedness and headaches. I have to use a

cane to get around, and at that I cannot walk far...I pretty much

ride my recliner all day long. Also, the fat around my face makes me

feel like I'm going to suffocate at times! I have been at home

from work since October of last year and am just waiting to hear from

SSA...I should be hearing from them within the next several

weeks...cross your fingers!

Anyway, just thought I'd update all y'all...I guess I finally felt

like typing it all out, plus I've been a little discouraged with my

symptoms not improving and my quality of life becoming so stagnate.

Thanks for letting me vent!!!

from Utah

>

> Hi,

> I'm coming off prednisilone as well and have been getting many

headaches (behind the eyes), I never had these before. I'm scheduled

to see my Dr. in two weeks and will ask...but I was wondering if

anyone else is experiencing the same.

> Rick

[Guest guest]

, reducing your Prednisone that fast could also send you into a dangerous adrenal crisis. When we are on external corticosteroids, our adrenal glands often stop making cortisol; then if you suddenly withdraw the external source, it may take the adrenals awhile to increase production. Here is a good site that explains this process.

http://www.nlm.nih.gov/medlineplus/ency/article/000357.htm

Another consideration is adding other medications before you attempt to taper off the Prednisone. With multi-system sarcoidosis, Prednisone alone is not sufficient. Taking another drug, such as Imuran, Methotrexate, Placquenil, and many others, has a Prednisone-sparing effect. This allows you to decrease the Pred safely to a level that lessens the serious risks & complications of long-term steroid use. Tracie has written several posts about the other drugs used to treat sarc; I'll look for one of them. Meanwhile, this is a good article on the Pred issue. This is found in the Links section, along with many other excellent resources.

http://www.medscape.com/viewarticle/466526?src=search

, thanks for writing in! I hope we hear from you again soon. Ron is living in Tampa, Florida. He posts occasionally; hopefully he'll read your message & check in! Right, Oyster Man?

Ramblin' Rose

Moderator

A merry heart is good medicine. Proverbs 17:22

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: I wondered if anyone else feels the same?Date: Fri, 31 Aug 2007 05:51:42 -0000

Hi Rick,Several weeks ago my Neuro is trying to reduce my Pred a little too quickly and I noticed headaches every day almost immediately. I had originally been on 80mg per day, and he dropped me down to 80mg one day and 40mg the next day. I didn't get any better symptom-wise, but it did shrink the Sarc in my spinal cord and brain stem quite noticeably. He then dropped me down several months later to 60mg one day and none the next day. This was several weeks ago and the one where I really noticed the headaches. I spoke with the on-call doc this past Monday due to my neuro being out of town, and he told me to take 30mg on the days my neuro had me not taking any. I have noticed I am getting fewer headaches and they are more mild and don't last very long. I have noticed that the pain in my neck has gotten worse in the last several weeks and it is radiating down my spinal cord to the middle of my back, and I am extremely lightheaded and sometimes feel as if I am going to black out. I was the one who really wanted to reduce the Pred, but it looks like we are going to have to do it much more slowly. To the NS group,I am not new to the website, but I haven't written in a long time. I have been reading the messages almost every day since May (when I was able to get the Internet back up). You may remember me as Bobblehead (you guys teased about that...by the way, where is ?). I am only on Prednisone...haven't had any Solumedrol IV's since March. I have asked my Neuro about adding other medications to the Prednisone to see if my symptoms would ease up. I have been diagnosed with NS in the spinal cord and brain stem, and just recently they removed what they thought was a cyst from my female area, but I took the pathology report to my Neuro when I saw him several weeks ago and he said it was a Sarcoid...I said "Down There???!!!" I guess you can get Sarcs anywhere!!! Sorry if that embarrassed anyone! Anyway, my Neuro doesn't seem to want to add any other meds to the Pred since it has helped to shrink the Sarc. I'm just getting really frustrated because my symptoms are still as bad as ever. I have numbness and tingling in all of my extremities as well as from my shoulders on down to my feet. I have joint pain in my knees, weakness all over, extreme fatigue (I sleep a ton!), neck and back pain, bobblehead, unsteady, blurry eyes, foot cramping, coughing and choking, lightheadedness and headaches. I have to use a cane to get around, and at that I cannot walk far...I pretty much ride my recliner all day long. Also, the fat around my face makes me feel like I'm going to suffocate at times! I have been at home from work since October of last year and am just waiting to hear from SSA...I should be hearing from them within the next several weeks...cross your fingers!Anyway, just thought I'd update all y'all...I guess I finally felt like typing it all out, plus I've been a little discouraged with my symptoms not improving and my quality of life becoming so stagnate. Thanks for letting me vent!!! from Utah >> Hi,> I'm coming off prednisilone as well and have been getting many headaches (behind the eyes), I never had these before. I'm scheduled to see my Dr. in two weeks and will ask...but I was wondering if anyone else is experiencing the same. > Rick

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