questions on prednisone

[Guest guest]

My neuro started me on a 5 day course, 60 mg / day of pred last

week. I hate the stuff but I must admit that it is the first time in

months that I have felt like my head was going to explode.

Unfortunately, now I'm wiped out from the `high anxiety' and lack of

sleep. I slept all of 4 hours on Friday and less than an hour

Saturday…that's the all day total as there were no naps…thank

goodness for computers otherwise the nights would have been even

longer.

I haven't taken pred specifically for the sarc before so I have some

questions for those that have:

-I started on Wednesday & took my last pill Saturday night. I know,

only 4 days but had to stop due to the side effects. The headaches

had subsided by Friday & it appears, to me anyway (wishful thinking

perhaps), that the granulomas on my hands have shrunk. Does pred

work that fast?

-It seems like the headache was back by Sunday night. I can't say

for certain if it's from the sarc or from the lack of sleep. Does

the pred flush from the system or do the effects vanish that quickly?

-I don't know if this last one has anything to do with the pred but

I'm concerned…I walked from a sunlit room to a darker room (blinds

drawn). My right eye failed to adjust to the light change & the room

was pitch black when viewed with just that eye. My left eye,

although blurry as normal, adjusted to the light. I walked back out

of the room &, after a few seconds, was able to see normally from the

right eye. I did this a few more times to make sure it wasn't a one

off event. This lasted for about 15 minutes or so then went away.

Not a clue here...I know that my diplopia has something to do with

the lack of nerve stimulation on the optic muscles...could it be a

variation on the same theme. I have an appointment with the neuro &

will discuss...just wondering if anyone else has had this happen with

or without the pred.

Hope the sunrise brings a smile to your face on this day. Peace to

you my friends...Tony

[Guest guest]

Tony, I doubt that oral prednisone would work that fast. However, unfortunately, even a short course doesn't clear out of your system right away. Someone else may have a different take on the subject.

As for the visual symptoms, Tracie is the eyeball expert. I think I can safely predict that she would encourage you to see an opthamologist ASAP, as there are many ways that sarc can affect our vision. Be sure to see an opthamologist (MD), rather than an optometrist.

I did feel peaceful this morning, thank you. It's a beautiful, sunny day here in Indiana, still a little chilly.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: questions on prednisoneDate: Mon, 19 Mar 2007 11:23:00 -0000

My neuro started me on a 5 day course, 60 mg / day of pred last week. I hate the stuff but I must admit that it is the first time in months that I have felt like my head was going to explode. Unfortunately, now I'm wiped out from the `high anxiety' and lack of sleep. I slept all of 4 hours on Friday and less than an hour Saturday…that's the all day total as there were no naps…thank goodness for computers otherwise the nights would have been even longer. I haven't taken pred specifically for the sarc before so I have some questions for those that have:-I started on Wednesday & took my last pill Saturday night. I know, only 4 days but had to stop due to the side effects. The headaches had subsided by Friday & it appears, to me anyway (wishful thinking perhaps), that the granulomas on my hands have shrunk. Does pred work that fast?-It seems like the headache was back by Sunday night. I can't say for certain if it's from the sarc or from the lack of sleep. Does the pred flush from the system or do the effects vanish that quickly?-I don't know if this last one has anything to do with the pred but I'm concerned…I walked from a sunlit room to a darker room (blinds drawn). My right eye failed to adjust to the light change & the room was pitch black when viewed with just that eye. My left eye, although blurry as normal, adjusted to the light. I walked back out of the room & , after a few seconds, was able to see normally from the right eye. I did this a few more times to make sure it wasn't a one off event. This lasted for about 15 minutes or so then went away. Not a clue here...I know that my diplopia has something to do with the lack of nerve stimulation on the optic muscles...could it be a variation on the same theme. I have an appointment with the neuro & will discuss...just wondering if anyone else has had this happen with or without the pred.Hope the sunrise brings a smile to your face on this day. Peace to you my friends...Tony

Exercise your brain! Try Flexicon.

[Guest guest]

T0ny,

When you take prednisone, you have to WEAN OFF IT. Our bodies produce about 15mg of cortisol a day. When we take prednisone or solu-medrol, we tell our adrenal system to stop producing cortisol.

So our adrenals have to be re-introduced to making our own cortisol. If this doesn't happen- then we experience all kinds of wonderful side effects, rapid heart beats, irregular heart rhythms, headaches, nausea, increased and rebound pain and inflammation-- so that is why you hear people say they've been trying to get off the pred for months and even years.

I know you were only on it for 4 days-- and yes, it may have taken some of the swelling in your hands down, but as you said- the "speed" effect was not something you could tolerate.

This is one of the many reasons that some of us can no longer take steroids. Between the lack of sleep, the increased appetite, the raise in blood sugar, the depression and anxiety-- we need one of the "steroid sparing" immune supressants. Cortisol also controls body temperature-- so having the hot flashes or cold surges is not unusual.

Talk to the MD and let him know what happened, and ask if Plaquenil, Methotrexate, Imuran, Arava, can be used instead.

In our LINKS- and ARCHIVES- you'll find articles on the different medications.

Print them out and take them in with you.

When sarcoidosis becomes multi-system, or involves the CNS (

Central Nervous System) then we truly need more aggressive medication.

Once you stop the prednisone, you'll find that the problems you have previously will return. For some of us, that has meant that by the time we got off the prednisone, the symptoms that had been suppressed- or masked---- came back with a venegence.

It's a great drug in the short term-- but for long term use-- the side effects are too intense.

www.arthritis.org is a great site for drug info. They have an annual Drug issue that breaks down the Steroids, DMARDS (Disease Modifying Anti-rheumatic Drugs) and BRM's (Biological Response Modifiers). It can be printed out also.

www.stopsarcoidosis.org is another fantastic site. This is the Foundation for Sarcoidosis Research site-- and it too has drug, symptoms, testing, and organ breakdown information.

Hope this helps,

Tracie

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