I just saw my new primary Dr. who doesn't know much about Sarc. I told her I think it is flaring in my jaw (salivary) again. I explained what was going on and she phoned the ENT (who I wanted to see) in the end I walked out with a presciption for 20 mg. prednisone to be taken 2 times a day. That is fine BUT it says to take "twice daily till gone" (which is 2 weeks) since like many of you, I've taken steroids before, I know you DON'T just stop. Especially from 40 mg a day, you taper down.
Is it just me or is it alright to just stop taking them after only 2 weeks? It doesn't seem right. This REALLY has me wondering about the internist!!!! I really wish we didn't have to change insurance companies! We had the best you could have before my husband retired and now we have to get used to Kaiser. At least we have insurance!?! If I could only get knowledgable DR's!
Any info. would be helpful.
Trae~
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New Dr. and Pred. dosage?
- By ntrae426
- Posted October 19, 2009 at 6:44 pm · 11 replies
- In Treatment decisions
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- By faithful
- Posted October 19, 2009 at 7:01 pm
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Trae,
I've been on and off steriods since 2003 and I have NEVER stopped abruptly. You MUST ween off especially with that dosage. I suggest you called your MD and have that conversation without stopping on toes. It's my understanding that if you don't tapper off you could have serious side affects. Take care of yourself!!!
M (Faithful)
- By Oceanwaves
- Posted October 19, 2009 at 8:07 pm
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natre426
Hello
Originally I had the best of PCP's and the best specialists in the valley. When I went on disability permanently, I had to use state medical. This put me in the mid range of doctors. And a whole new battery of tests that only confirmed the previous battery. Thank goodness I had already had my gallbladder surgery, my kidney surgery and my eye surgery. I had also already had all my biopsys. I have no intentions of being cut again. I had already been told about sarc by the first set of specialists, and researched it. The new docs I got via the state treat me as a team test case and are glad that good specialists took care of me first. Then I lost the state medical. I have to pay my own bills now and am set for an appointment with
the substandard docs this week. The saving grace there is that I don't need to be cut again. I don't need to do other meds. I only need my current meds kept up. When I was weaned off steroids, I just broke pills in half and cut back over a week and then stopped. No problems. But the weight never went away either.
O
- By IreneMarie
- Posted October 19, 2009 at 9:33 pm
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Hi N436,
You have to educate yourself and expect to educate a lot of dr.s about Sarc and Sarc treatment. I staid with one PCP for about ten yrs because She was clueless and let me direct her - she wrote the scripts. As I learned more and more about Sarc I realized it was time to move on and pick other brains. The scenario continues today with most of my new docs - again thanks to this forum and tons of web searching I know more about the disease then they do.
- By ntrae426
- Posted October 20, 2009 at 10:40 am
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Thanks for your responses! I've already had to give this Dr. literature regarding Vit. D and Sarcoid as she kept wanting me to take alot of supplements.
I'm having alot of trouble getting past her to get to the specialists. After years of seeing a rheumatologist and a pulmonalogist this is driving me crazy.
I'm about ready to try another Dr. but don't know if I'm going to get another unknowdlegable one and one that won't listen to me, which would be worse, so I don't know what to do. I REALLY am not used to Kaiser's way of doing things. It is alot different than private insurance.
- By Brian1955
- Posted November 5, 2009 at 7:42 pm
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I started out at 160mg of prednisone. It is absolutely necessary to taper off and not just stop. There are terrible problems if you just stop. At 40 mg you are at a pretty high dose and after 4-6 days you have shut down some critical bodily functions (can't remember what") but be very careful. Last time I had trouble going from 15 g to stopped. took as long for the last 10 as from 160 to 15 for me. My body was not happy.
Do not just stop.
- By Boxerlover
- Posted November 5, 2009 at 7:50 pm
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I definately think you may want to find another doc. She seems to be having trouble saying she doesn't know what she's doing and send you to a specialist. My primary is similiar and if I had to see her more than once or twice a year I would find a new PCP. I've been thinking of doing it anyway.
Melissa
- By IreneMarie
- Posted November 5, 2009 at 7:53 pm
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Cold turkey can send you into crisis. Don't risk it! Taper slowly. Absolutely no D suppliments!
- By IreneMarie
- Posted November 5, 2009 at 9:42 pm
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Forgot to mention that Pred eye drops help the swollen salivaries (Heerfordt's Syndrome), the oral Pred does not work as well for that. The bigger and longer the glands are swollen the more chance of Bell's Palsy occuring as the facial nerve sits right over the gland.
Are you being cared for by a Rheumatologist who knows about Prednisone dosing?
- By ntrae426
- Posted November 6, 2009 at 12:44 am
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Thanks for your responses. This Dr. says the "new" research shows being on pred. short term is fine to just stop. so trying it for 2 weeks to see if it helps will be no problem.
The only thing is when I asked her she automatically thought I had a fantastic response after 2 days on it. Which wasn't the case! I did help after 2 weeks, didn't make things go away though. I need to email her and let her know what is going on. I think she is going to refer me back to the rheumatologist. Personally I think the ENT would be better but as long as the Rheumy knows more than she does, that will be fine with me.
My face is starting to feel VERY strange along with the pain. A lot of tingling and additional numbness. (Other than residual from parotid surgery) I've looked in the mirror various times to see if I had Bell's Palsy, as that is what it has felt like!
In the mean time I am searching for a new PCP!
- By priscurl
- Posted November 6, 2009 at 5:44 am
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Hi,
It is OK to stop prednisone at the two week mark from even higher dosages than 40mg so long as you taper it. I got down to 0 in two weeks and stopped prednisone quite safely without any repercussions while under a doctor's supervision.
Last Christmas I had sarcoid in my eye and had a blind spot. I was only on prednisone for two weeks starting at 75mg. I tapered off within the two weeks safely.
From 40mg you should reduce by
•by 5 mg increments when they are taking less than 40 mg of prednisone
•by only 2.5 mg when they reach 20 mg of prednisone
•by 1 mg increments once they reach 10 mg
This is of course difficult to do if you don't have 5mg and 1mg tablets.
The only reason you cannot stop prednisone is suddenly is because the adrenal glands cease production of natural cortisol after a week or two. All hormones work on a feedback loop. When you interupt that loop at any time with an exogenous source (tablet form) or alien source such as the calcitriol (or hormonal form of D) which is produced by sarcoid granuloma, you mess with the feedback system. If you take pred for a month or longer without tapering, if you have an motor accident, a severe infection, or gall bladder attack, your body does not produce enough cortisol to prevent you from going into shock and you can die.
However, you have to have those things actually happen to you before you have a problem, chances are you won't.
The other reason you taper is to prevent withdrawal symptoms and rebound reactions. I had absolutely no withdrawal symptoms from a two week bout of prednisone, nor did I gain weight. The only thing I got was a very nasty sinus infection which began around 24 hrs after taking the first 75mg. (They were going to make it 90mg, but I protested) I took 50mg the following day, then 35mg the next and slowly got off it. I hate the stuff. It did the trick though and got rid of the sarc.
Pris
- By ntrae426
- Posted November 6, 2009 at 9:53 am
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Thanks Pris!
I've been taking Pred. off and on for 20 yrs. and known about tapering that's why all of this with this new doc didn't sit right. I've just been tapering on my own like I have always done in the past. It just baffles me when Dr. don't seem to know what seems to be "simple - important" things that should be past on to patients! I hate going to the dr. anyway and this makes it that much worse.
Help and information from FSR
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.
You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.
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