how much steroids is tooooo much?

for the past year or so I have been having severe leg pain and no one wants to even try to address it, insted they sent me to pain management thinking it was the lupus or something. Well my pain management ran out of options for me and old me to find another doctor so while I am inbetween pain management doctors I have totally ran out of pain medication and would rather have a baby with no pain medication then go threw this pain ( I have a 2 yr old so I DO know how bad labor is) then go threw this. For the past three weeks I have been in and out of the ER and the urgent care clinics trying to get my pain stable. The only thing that seems to help is pain meds and steroids. I have been on three rounds of tapering steroids in three weeks. As soon as I stop taking the steroids the pain is right back and has me in tears.....I am getting real worried about my bones and how brittle they will get if I keep this crap up....thus the question "how much steroids is toooooo much?"

Hi.  I'm sorry you're in so much pain.  With respect to the prednisone, though, my mother was on and off of prednisone for lupus my entire life (and her entire adult life).  I think she was developing osteoporosis right before she passed (due to interstitial lung disease), and it might be traceable to the prednisone, as osteoporosis doesn't run in our family, nor are we in a high risk group), but she was 58 before that even started.  I noticed that said you have been on prednisone tapers--that's actually very good.  My mother was on a constant dose of prednisone, and never quite weaned completely off of it.  The drug actually saved her life (as it did mine a few years ago), but I never forget that it is a double-edged sword.  As long as you have a responsible doctor monitoring you closely, you should be fine on the steriod.  If it helps you, I would be reluctant to stop it until they can get to the root of your pain.

El

Dani,

Impossible to say what is too much.  Not everyone has osteoporosis taking prednisone but it is a significant risk.  It can take a long time to get your immune system under control and coming on and off short courses of treatment is not usully effective.  Docs often start patients with a high dose of pred and then introduce some other prednisone sparing drug and then slowly taper pred.  Depending on the case the taper can be months or even years.  I have been on pred for over 5 years with the worst problem being hypertension. 

Pred is the love/hat drug.  It saves acts quickly and is often effective but long term use (months or years) brings on a host of potential side effects which is why docs usually introduce another, less noxious drug.  It is trial and error since each case reacts differently.  It seems that pred is controlling your immune system but when withdrawn it kicks up again so a longer term strategy of treatment is necessary.  Treating an AI disease like lupus is not like taking a 10 day course of antibiotics.  Some patients require meds the rest of their lives and others do go into remission...sometimes permanent.  But it is important not to get into a chronic condition that is brought on by taking and withdrawing meds over a short treatment.

Bill

Im on yet another dose of steroids, I have to get them all from the ER or urgent care because my stupid Roummy will not do his job and I am caught up in the terrible health care system of Louisiana :(. Every time I go (which is every other day or so) I get put on a different steroid. Maybe that is what has me worried, no one is really watching me or taking blood work or doing anything to try and help me. It like one step forward and ten back. My mother and my self think that this pain is Vasculitis in my legs because of how it hurts and they turn purple every now and again and go numb....like they fall asleep. Real strong steroids seem to be the only thing that helps, even persocet doesnt do much :(

I live in Shreveport, I have been looking into getting a new Roummy here. My doctor is finally sending me a new one but she said since he is the "lupus guru" in the area that it will take her a little while to get me in, but I need it bad because with everything I ever get I never have "text book" symptoms. Just like with my lupus, I have never had a butterfly rash or even a fever during a flare.

 First let me say that I feel for you.....pain is hard to explain to a doctor that has never felt what we feel.  On that note, I have been on pred for about 7 years now, currently taking 20mg per day.  Plus, I get bolaces of pred at least once a month...usually 80 mg.  

So I don't know how much is too much.....for me it is quality of like, it helps with the pain and my breathing.  So for me it is good.

Good luck with the doctor....I am so lucky to have one of the best ones around!

 

Hi danijay - I'm new to being "diagnosed" with lupus and I also have pretty severe fibro.  This post really caught my attention because the biggest problems I used to have was back pain. Lately I've had this horrendous lupus pain and my joints completely swell, then my fibro gets horrible from the tension of the pain.  about a week and a half ago I ended up in the ER with excrutiating leg pain.  it felt like I had knives in my hips, knees and ankles and then just crushed bones the whole rest of the way down.  Even when they gave me IV diluadid it took the edge off for an hour or so and that was it.

The attending wanted to increase my plaquenil and go back to 40 mg of prednisone for a week, then 20 then 10.  He also wanted to send me home with some hydromorphone to get me through the pain - and granted I'm only 26, but have had 5 major surgeries, kidney stones....so when I say i'm in pain im not exaggerating.  Well then his resident decided he was going to "completely disregard his attendings orders" in his own words and said he didn't want to give pain meds out...even though he was with me for 5 minutes and the attending was with me the 11 hours I was there....grrr...well anyway the point is...when I got to my Rheumy the next day for follow up she decided to take me off prednisone all together as I'd been on and off it for a while with not any change.  Instead she put me on 16 mg of Medrol ( a different corticosteroid) and said some people just respond better to different steroids.  I was on 16 mg for 7 days then to cut it in half.

I had been in so much pain for months...to the point some days I couldn't walk...used a cane...had a wheelchair on hand.  and about 4 days into the Medrol i started to feel like a normal person...I almost started to cry...even though I had some knee pain still...I didn't feel like a boulder was on my legs...I didn't want to cry all day.  However I went down to the half after 7 days and 2 days into that I went back into this extreme pain and its been over the weekend...its been so horrible even the percocet doesnt touch the pain.  So I went back to the full 16 mg and am supposed to stay on that for a while...only problem is side effects can be nasty.  They can leave nasty little fat deposits in your neck and other places.  It was worth it to feel like a normal person for 2 days and that was so awesome.

In any case - I've just never come across someone describing the leg pain to the extent I had mine.  Also, not that it's a cure-all but maybe a different type of steroid could work for you too?

All the luck in the world....I know what this is like - can't even sleep and is difficult.  good luck!