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View Full Version : Can someone tell me about taking 20mg of Prednisone daily?




whirlwind123
04-29-2009, 03:22 PM
Hi,
Since neuro felt I was allergic to mestinon., he put me on 20mg of prednisone a day for 6 weeks and then we will go from there., what should I expect?
Thanks




erinhermes
04-29-2009, 06:41 PM
You MIGHT - only maybe- feel a little weaker, but after that you should feel pretty good!

20 mgs will give you energy, a big appetite, and may make you a bit hyper. It may also cause swelling, acne, and mess with your legs - they may get a bit weak - got stuck on the toilet once, but I was @ 80......LOL!:D

Everyone reacts differently to pred. Some people have tons of side effects, while others don't have many @ all. You just never know.

I am super thankful for pred! It has made my life bearable again!:D Granted, I have gained weight, but am so grateful that I am able to swallow, talk, walk, BREATHE again on my own! You will want to stay out of the sun - it only makes you feel worse - and heat is a big "no no" on pred, but it is anyway with MG, so it will be OK!

Hope this helps a bit!
Big hugs!
Erin:D

Hi,
Since neuro felt I was allergic to mestinon., he put me on 20mg of prednisone a day for 6 weeks and then we will go from there., what should I expect?
Thanks

AnnieB3
04-29-2009, 08:33 PM
Whirlwind, This is just my opinion, okay? I think your neuro is out of his league. Most neuros will "try" to save your adrenals by having an "every other day" short term course of Prednisone. Or doing a few days higher and then a quick taper and every other day. Prednisone should not be given out like candy! You can very easily, after six weeks, get "hooked" on it long-term if you don't take it carefully.

If he did not explain all the effects of Prednisone, then he needs to.

I'm wondering if what you had was not an allergic reaction per se but an adverse reaction (increased bronchial secretions making existing allergies worse). I'm no expert but neither is a neuro. An allergist should've evaluated you. There are tests they can do (blood) to see if you are actually having an allergic reaction to Mestinon.

I am not a doctor but I don't have a good feeling about the advice you are getting from this neuro. It doesn't reflect the advice I've gotten or seen other MGers get from MG experts.

I don't mean to discourage you!!! But Pred is a big gun drug and can have LOTS of side effects. Can you see your allergist soon? They usually have same day appts. if you call first thing in the morning.

Sorry if this upsets you!

Annie

erinhermes
04-29-2009, 10:14 PM
Annie was right about the tapering thing; when I was first dx'ed I was given 10 mgs the first day but was up to 80 mgs before I left ICU.

After that, I was given Cellcept and my pred was reduced really, really fast - down to 15 mgs in a few months. Unfortunately for me, Cellcept didn't work, and I had to have my pred bumped back up to 60 for months......we are doing a slow tapering this time - that way we hope to avoid going back into the hospital for the plasma exchange........hate that one!

Hope this helps!
Erin:D

Maxwell'sMom
04-30-2009, 09:33 AM
Hi, I can only give you my experience with Prednisone. Been on it for almost 5 years now.
After 7 days, the body is dependant on Prednisone, as the adrenals shut down. This is why it's so important to very carefully wean down, so that the adrenals can slowly wake up.
If a person doesn't slowly wean from it, but just stops, you can go into adrenal crisis, and die.
What my neuro did, was have me call after so much time to see how my body was doing on the prednisone, and then she wrote another script. This is what your neuro might be doing.
He sure doesn't explain things very well, but unfortunately that's seems to be the norm anymore. Which is a shame.
I personally have a love hate relationship with prednisone. I love to feel better, but it may have been one of the things that caused me to have Pulmonary Hypertension, and a few other medical issues, like prednisone induced diabetes.
There is a book about Prednisone that's real good.
It's called "Coping with Prednisone", by zuckerman and Ingelfinger.
They're two sisters, one is a doctor, and the other had to be put on it for a lung disease.
20mg's is pretty standard as the amount for when they first put a person on it.
Becareful with it, and read as much as you can on it.
I once read an article, and the title was "Prednisone, good guy/bad guy" And believe me, that was a very accurate title.

Best of wishes
Love Lizzie

whirlwind123
04-30-2009, 09:54 AM
Lizzie., He stated after 6 weeks he would probably put me on the 20mg every other day., and slowly from there see what is with my symptoms., How it works., etc., I appreciate you answer as I was starting to become alarmed at the dosage., so you have made me feel better about taking it., how much to you take or have you taken in the past?

Maxwell'sMom
04-30-2009, 10:45 AM
Nancy, I'm so glad I was able to ease your mind a little. The very highest I was on Prednisone was 60mg daily, and then it fluctuated between 40, and 30 for a couple of years, and then down to 20 daily, and right now, I'm at 10mg daily, but will have to go up in a couple of weeks, as the CycloSporine may be causing more damage to my kidneys.
I won't know for certain until I get the kidney biopsey in a few weeks.
10mg is the lowest I've every been on, and I was getting excited cause we were going to try to lower it again, but now we can't.
Anytime before I was on CycloSporine, anything below 20, would caused a terrible crash. So, I'm very excited that I'm down to 10.
It really depends on how ones illness is, and how bad,.etc.
20 every other day, is also very standard, and isn't too bad at all. I know someone who is on 160mg daily, Cellcept, and Ivigs, and something else, can't remember. So, I consider myself blessed that I'm down to 10mg daily.
I've never done the every other day thing. I wish I had, cause I think weaning would have been easier I think.
Oh, and some people, although rare, but it's there, have lost weight on prednisone. And my craving for food are for fresh veggies, so that's turned out good for me.
LOL..I do know a person, who for 6 months wanted nothing but peanutbutter and jelly sandwiches..Poor thing. I just can't imagine.
I'm sure you'll do fine. It does sound like your neuro is following the traditional route in treating this, so that's good.
And Again, so happy things are working out for the two of you.
It can take a while to get to know your doctor, and his personality. He might be a quiet one...smiles
:hug:
Love Lizzie

neutro
04-30-2009, 10:50 AM
Hi wirhlwind123,
When I started Pred, I was hospitalized in a neurologic dpt… They gave me 10 mg to start with (every day), I was so weak, (much weaker than when I entered and although they gave me a round of IVIG at the same time,) that they hold me at 10 mg for 5 days until I recovered from that initial phase, and after they increased Pred by 5 mg every 2 days. When I left after 3 weeks, I was at 50 mg…(for 75 kg of weight). Later, I went up to 75 mg (1 mg/kg) and now after 18 months, I'm down to 10 mg and still tapering…
My advise: if you feel worse after starting Pred, call immediateley your doctor/neuro and keep usefull telephone numbers like ER, ICU…handy, you might (I hope not) use them…!
Maurice.

AnnieB3
04-30-2009, 01:10 PM
I'm going to ask a simple question: Why did the neuro put you on Prednisone? Was it for an allergic reaction or to help your MG?

Usually Pred is given for a shorter period of time for an allergic reaction - like a week to ten days.

I think you need to look at what Pred can do to the body, since your neuro isn't bringing this up. It can cause diabetes, sometimes very hard to control diabetes. It can cause lowered bone density, bleeding problems, bradycardia, high blood pressure, stomach ulcers,

Weaning from Prednisone may take weeks or months . . . or never. Sometimes people have too strong of adrenal "crashes" for them to ever get off of it. Like Lizzie said, you can go into an adrenal crisis if you go down on a dose too quickly or off of it too quickly. I know someone who went through that twice and it is dangerous. You can have fluid retention and may need to quit having but a small amount of sodium. You can have insomnia, weight gain, depression and glaucoma. There are other side effects too, which you should read up on.

On the flip side, yes, it can make MG better. Like these guys said, it can temporarily make it worse. So you have to very "body aware" when you take it. Any new symptom needs to be addressed RIGHT AWAY.

The choice to take it is yours. I only hope you will be well-educated before you make that choice. I have seen patients, mostly lupus patients, go through some horrific things while on Pred. One girl I knew HAD to be on it because her lupus was so bad and ended up having steel rods put in her hands because the bones were too weak.

So Pred can be a very useful drug but it can also add a laundry list of problems to what you already have. There are other drugs for MG.

Side Note: It doesn't seem like your allergies are really under control. Have you had an allergist re-evaluate you? Maybe there are some food allergies or something they are missing. Just a thought.

I should say that I have taken Pred. It makes me very nutty, I retain sodium by just looking at it and I get low bradycardia. I also tend to get infections really easily and got a staph infection only a couple weeks after taking it. I'll only take it again if my life is in jeopardy.

I hope you are happy with whatever decision you make. You asked in another post how you relax about it all. For me, being as educated as possible was how I was able to calm down. Also, having a good doctor and knowing what my area hospital would (or wouldn't) do was a good thing. So just keep learning and you'll feel better.

Annie

whirlwind123
04-30-2009, 01:34 PM
Annie,
He is giving me the prednisone for my MG., He feels I had a allergic reaction to the mestonin., so he is putting me on the 20mg daily for 6 weeks., and then every other day and then lowering it. I do not feel good about taking prednisone., but with the swollen eyes., lips and hands from mestinon he felt I needed to come off of it. He did explain the side effects and advised my gp put me on some Vitamin D and extra calcium. I hate prednisone., I have been on it in the past., and I do not like it one bit., but it looks like at the present I have no choice., I am hoping after two weeks my symptoms will be improved enough that he can start the every other day and then tapering to a very low dose., I figured I am going to call him and have reevaluate me in two weeks., I appreciate what you are saying., and believe me if anyone understands prednisone., I do ....I have been on 60 mg a day in the past for very allergic/allergies....my allergies are really never under control., I can not take allergy shots as when they were giving me the desensitation shots by the second one my throat closed up., so I cannot take allergy shots. So I kind of am stuck. I have a sensitivity to so many medications., Have been like that most of my life and it gets worse. I am trying also to be educated., when he gave me that dose I did google the amount and verify what it does etc., and the tapering off. But I do appreciate all of you as you have been thru this and understand. I am trying to have a good relationship with my Doctor and I am trying to trust his judgement., naturally within limits.
Thanks Again.
Nancy

AnnieB3
04-30-2009, 01:40 PM
Nancy, Have you tried seeing an immunologist? They can look for things that allergists can't. It might be worth a try. Have you had your IgE, IgG, IgA, etc. levels checked? If you see one, try to see a private practice immuno with a very good rep. IVIG might actually help you more than Pred, given everything else! ;)

I'm glad you know what to look for. It think it is more sensible to evaluate much sooner, like you said. I hope it goes well.

Annie

whirlwind123
04-30-2009, 01:53 PM
I agree , I really would like to not take prednisone., actually I was just thinking may be the lip swollen and finger swelling was from the fluid., not allergic reaction, because I am still having my hands swollen., so I might just call my neuro anyway and ask him, but then again he will think I am nuts. So I just don't know., I only took my prednisone today., so I know I can quit taking it if I have too.....I don't know my husband says I am making everyone crazy., ...I just don't know.......has anyone else ever had a reaction similar to that for mestinon, I also heard about mytelse., I think that is the correct spelling.
thanks again

AnnieB3
04-30-2009, 03:25 PM
Again, this is really a job for an allergist! Have you ever had your tryptase tested?

http://www.phadia.com/dia_templates/Page____1881.aspx

Just take the Pred and see what happens! ;) Stay in contact with BOTH your neuro and an allergist (do you have one?!). There are both good and bad things to having specialists. Again, just don't expect your neuro to be an allergist. It's way over his head because he didn't study it in depth.

When you have a disease like MG plus things like allergies, you need to rely on all members of your "team" on not on just one particular doctor. I know it sucks to have a lot of doctors. But if everything they do gets sent to an internist, then you have actual "coordinated care," which could save your butt.

You're not making everyone crazy. This is brand new to you. You need to ask lots of questions. And you want to do what's best for you. Maybe writing down how the Pred makes you feel, if it's improving things, etc. every day would help. I always keep a log of a new drug like that. And it helps to "journal" about what you're going through in general.

Okay, I'm repeating myself here . . . GO SEE AN ALLERGIST SOON.

Trust your instincts, Nancy, and you'll be just fine. :grouphug:

ras1256
05-01-2009, 04:00 PM
Nancy,
I agree with Annie again. Let the docs do their job, you can drive yourself nuts trying to figure this all out. When it comes to allegies to medicines, it's better safe than sorry. An allergist will be able to tell for SURE if you are having a reaction to the Mestinon.

Please don't take this the wrong way, but I almost had to laugh when reading your post. There were 3 different times the phrase "I don't know" showed up. I hit that point every now and then, usually when someone asks me how I'm doing and what's being done to help me. I call this my "I don't know" stage with everyone now. That's all I have to say when they ask, is that I'm in this stage and they know I'm frustrated without me having to give details. I just struck me funny to see someone typing it the same way I say it so often.

You're not driving any of us crazy, that's for sure. We've all been there so we understand the confusion and frustration and all the other emotions you are going through. Don't be too worried about taking the Prednisone for now, short term shouldn't cause problems, but you may need to watch certain supplements if you're on it for long. Get the allergist lined up to check you out. Then again you'll have your answer and be able to move on. It's the "I don't know" mode that can drive us crazy!

Love,
Becky