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tripLexie
03-30-2012, 06:42 AM
I know side effects always vary from person to person, but after I pick up my rx I will be starting a low dose (I think 5mg with a quick taper in the 2nd week) to see how it helps with the joints (and I think the pleurisy).

What are y'alls individuals opinion on the drug? Experiences? I know what one person experiences will not be the same as another person.. But I'm just trying to get an idea!!

steve.b
03-30-2012, 07:44 AM
i believe 5mg is a reasonably low dosage.
there is quite a few on here that cannot get as low as that.

i have no issues with short dosages of pred.
i actually take a stronger dose after my operations, to help my body recover.

but as you said everyone is different.
my suggestion is to NOT look for complications.
expect that everything is going to be ok.

Saysusie
03-30-2012, 11:17 AM
For many, Prednisone works very well (in spite of the side effects). Your dosage is quite low comparatively, so you will probably not need any steroid-sparing drugs.
Many have found that they need to remain on a low dosage of Prednisone for long periods of time (a maintenance dose) because when they attempt to taper, their symptoms returned, worsened, or new ones appeared. Do not ever attempt to lower your dose without your doctor's permission and/or without being monitored by a doctor. This could lead to serious problems.
I hope that the Prednisone works as well for you as it has for many others. But, do bear in mind that, if it does not, there are other medications that can be tried that could achieve the same results as Prednisone. However, Prednisone has been found to have very good results for most.

Best Of Luck
Peace and Blessings
Namaste
Saysusie

Mica
03-30-2012, 03:12 PM
5 mg is a pretty low dosage so thats good but I personally think prednisone helps with my joint pain. I doubt you will notice immediately but if you ever accidentally missed a dose then you probably notice.

leaann
04-02-2012, 05:17 PM
I have been on predisone several times, I have never been on a low does, I however have had to taper it down. I normally do about 60 mg however when I stop it, the issues always come back and are worse then when I started, this last time I was put on medrol the doctor that I am seeing does not like for me to stay on predisone long so this last time we changed it. I like the predisone better than the medrol. The only thing I don't like about either one is the fact that it makes you want to eat everything in the house including the house.
Hope that it works for you. good luck with it

Corella
04-05-2012, 04:23 PM
I cant take preds as they make me aggressive but I am on 1mg of Dex, was on 2mg but gained 4kgs in a month so had to reduce, I think it is equal to 5.5mg of preds or a bit more.

Now I have not only wanted to eat everything in the house, but I think I ate my house and my neighbours house and even my dog - and I do laugh when people say 'Have a nice apple or nibble on some carrots' anyone who has taken steroids will tell you that munching on a bloody apple will not do it and carrot sticks wont do it either, especially if you have Sjogrens and you are scared that anything firmer than a banana will make your teeth fall out.

So I can totally relate to wanting to eat houses and people, because I am sure the 4kgs I have gained, is because I may have eaten my husband (only joking)

There is no hunger quite like steroid hunger and like a demanding child, it has to be entertained. Saying that, even reducing the Dex by 1mg brought my pain back and I am happy to stay on the dose I am on now as I do believe it makes a difference.

Talking of food, think I might make some toast....





I have been on predisone several times, I have never been on a low does, I however have had to taper it down. I normally do about 60 mg however when I stop it, the issues always come back and are worse then when I started, this last time I was put on medrol the doctor that I am seeing does not like for me to stay on predisone long so this last time we changed it. I like the predisone better than the medrol. The only thing I don't like about either one is the fact that it makes you want to eat everything in the house including the house.
Hope that it works for you. good luck with it

Corella
05-01-2012, 05:08 AM
Dexamethasone update, after going to my GP tonight who decided that my reaction to steroids (and most other meds) is so severe, my weight gain has been excessive (and nibbling on fruit does not touch a steroid appetite as you know), he has reduced my steroids to 0.5mg a day which is 3.3mg of preds (comparison).

I have to get my weight down as if I get bad with my asthma/Sjogrens, there really is nowhere to go with the steroid dose I am on at the moment as I react badly and quickly so we are going for the lowest maint. dose to keep things under control and I have been warned the pain may come back and I might lose my precious saliva/tears that I have recently started to produce. Although my friend with lupus told me she is maintained on the same dose 3.3mg so there is hope yet.

1mg even keeps me awake at night so I am looking forward to feeling tired again. Funny how having an AI illness makes you over react to medicines.

How are you doing Lexie? I was thinking about you today.

tripLexie
05-01-2012, 06:15 AM
I'm doing alright! I'm only on 5 mg.. I was on 10mg for a week then went to 5mg.. The only thing the prednisone did was kick my pleurisy that I had for about a year (I was quite happy to find out one day that I was taking breaths without any pain!!!!) but as far as my joint pain and othe symptoms go it has not done a thing. I've also already started another bout of rashes so I'm not sure it's doing much for me. Best of luck to you!!

SleepyInSeattle
05-01-2012, 07:10 AM
I lost my hearing in one ear suddenly last week so I am on 60mg a day - I feel like a freakin' rock star (other than the deafness, of course, LOL). I have not felt this good in 15 years - sleeping like a baby, no aches, energy...OMG I never realized how BAD I felt until it all went away. And I have not been hungry at all, or cranky, or anything - I just feel NORMAL - but maybe that's just because I have not been on it long enough for the side-effects to kick in.

I am not looking forward to tapering off and having all my symptoms return. I wish they'd invent Prednisone without the side effects!!!!

tgal
05-01-2012, 10:39 AM
I was on 60 mg for 6 months and have made it down to 40 mg with the help of MTX. I know the side effects. There are things I don't like but I like the idea of dying from Lupus even less

Tammy1962
05-01-2012, 11:34 AM
After 20 years of moderate to low doses (5-30mg) of prednisone, I have a love-hate relationship with steriods. It is the most effective medication to control my SLE Lupus et al. However, it has lead to weight gain (60lbs), moon face, severe mood swings, sleep deprivation and bone density loss. At the age 49, last month's bone density came back osteoporisis in both hips and a few disc, osteopenia in other.

Over the last 20 years, I slipped into denial and tapered completely off prednisone. I ended up not being able to get out of the bath tube alone. I have come to the conclusion, it is better to be chubby and somewhat functional.

Melodyroseak
05-01-2012, 03:36 PM
I have been on predisone for years. But now it is the VERY last resort. I developed Avascular Neurcrosis from the predisone and Lupus. That is what my Neurolagist and Ortho dr said. Because of the combination of the two I had 2 hip replacements and 1 revision. I am not saying this will happen to everyone, but, it is a possiblity. So, my feelings are that I will not take it unless I really, really, really have too.

Corella
05-01-2012, 09:03 PM
Unfortunately for me I have started to react to most medications, steroid doses that I could tolerate years ago now have huge side effects for me.

I was weighed yesterday and have gained an unhealthy amount of weight in the two months I have been on them, my blood sugar is all over the place and none of my clothes fit me and this was on 2mg of Dex and then 1mg of Dex, the doctor said this could 'well be my new weight'. i cannot exercise much as the sjogrens is in my lungs and I cant swim as chlorine makes me wheeze.

I am overweight - not chubby, my BMI is obese and even though I try to eat right, I am so hungry on steroids I feel dizzy and have fainted.

My mum was diabetic and I am a high risk of osteoporosis, if I stay on 1mg of Dex then there really is nowhere to go if my asthma gets worse as the psychotic effects take effect on 2mg, so I have to say goodbye to my precious saliva and say hello to the pain and dry mouth as I have to go to the lowest dose possible.

I cant take sleeping pills, painkillers stronger than panadol - I over react to all medicines, my legs went blue after my flu jab.

So for me, I cant cope with the weight - even on this small dose my face is enormous and I cant go higher, my feet/hands swell up - even my Rheumy has documented intolerent to higher doses. I used to be able to take most medicines but not now.

I reduced today, equal to 3.5mg of preds, I hope it still does something, I like waking up with a wet pillow from my saliva that I dont know what to do with as I am not used to it.

Wish my body didnt hate me so much and now I have this horrible rash on my cheeks and nose - not sure what to even put on that. But I have a piccie for the Rheumy when I see him next month - maybe a sjogrens thing.

tgal
05-01-2012, 10:09 PM
I have cns lupus. Weight gain, thinning bones and such fall to the bottom of the scale. I have no choice but to keep my inflammation under control by whatever means I have to. Maybe if it was just rashes and joint pain I would feel differently but, for me, it is a life or death thing. I love and hate the steroids and I am sure I always will

steve.b
05-02-2012, 05:12 AM
...... There are things I don't like but I like the idea of dying from Lupus even less

this is the way i feel about my medication.
it keeps me alive. literally.

remember that life with meds....
is better than no life at all.

chikititalinda
05-03-2012, 06:34 AM
Hi Melody, I to developed AVN on both knees, I tell you this monster sucks big time. I feel like Im half the woman I use to be and at 38 I feel more like an 80 yr old sometimes. I so wish I could do the things hubby and I use to enjoy doing, even though I push myself sometimes, I usually pay the price the next day.
Wow, two hip replacements! That sounds miserable, Im sorry you too are suffering with this. Are you still in pain? I find my pain is not too bad anymore thank God, its tolerable. I do however feel it mainly at knight if I've done too much during the day.