how much steroids is tooooo much?

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Regular Member

Date Joined Jan 2010
Total Posts : 82
   Posted 10/13/2010 1:39 AM (GMT -6)   
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?" shakehead

Veteran Member

Date Joined Jun 2008
Total Posts : 1470
   Posted 10/13/2010 7:45 AM (GMT -6)   
NOt sure the answer to your question but for about 6 months I had IV's of solu medrol several times a month and was taking 60 mg orally each day(the oral high dose was about 2 full years) !!! I am currently taking 20 mg each day and I wouldnt be alive without it. As long as you have a doctor monitering the usage and side effects from the pred, things should be ok!
Kidney Diseases & Disorders and Lupus Moderater
Cyclosporine, Prednisone, Lisinopril, Integra Plus, Vitamin D 50,000 units
PRN: Imitrex, hydrocodone, Ambien, Flexeril, Ultram, Darvocet, Zofran

If God brings you to it, he will get you through it!!

Veteran Member

Date Joined Sep 2005
Total Posts : 1744
   Posted 10/14/2010 7:43 AM (GMT -6)   

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.


New Member

Date Joined Oct 2010
Total Posts : 2
   Posted 10/14/2010 1:49 PM (GMT -6)   
Maybe you have spine inflammation that the prednisone quells. They checked me for that too (mylogram).

Veteran Member

Date Joined Apr 2006
Total Posts : 1344
   Posted 10/15/2010 9:14 AM (GMT -6)   
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.

Veteran Member

Date Joined Dec 2007
Total Posts : 2113
   Posted 10/16/2010 7:45 PM (GMT -6)   
I always judge how much is too much/how long is too long by the way I feel about taking it. When I no longer feel like it is my best friend and start thinking of it as my worst enemy it is time to taper off.

Regular Member

Date Joined Jan 2010
Total Posts : 82
   Posted 10/16/2010 8:13 PM (GMT -6)   
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 they fall asleep. Real strong steroids seem to be the only thing that helps, even persocet doesnt do much :(
SLE (lupus), Fibromyalgia, and a solitary kidney

Regular Member

Date Joined Apr 2009
Total Posts : 122
   Posted 10/18/2010 10:14 AM (GMT -6)   
Hey daniJav,
Not sure where you are in Louisiana but I live in the Jackson, MS area and I have a wonderful Rhuemy that has pretty much saved me from being bedridden!!  Have you thought of trying to find a different doctor.  I have met a couple of people at the doctor's office that have come over from Louisiana because they have told me that she is the best in the area.  They are very thorough and have a wonderful group of nurses, office staff and lab technicians that I just love!!  Sounds like you really need to find a doctor that you like and understands what you are going through!! Hope you are feeling better soon!
Hugs and Angels,
DX - sle and carpal tunnel
RX - prednisone, plaquenil, etolodac, lisiniprol, folic acid, darvocet and flexeril when needed, hormone and vitamins

Regular Member

Date Joined Jan 2010
Total Posts : 82
   Posted 10/20/2010 11:32 AM (GMT -6)   
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.

Regular Member

Date Joined Apr 2009
Total Posts : 122
   Posted 10/21/2010 9:38 AM (GMT -6)   
Well, unfortunately, that's the problem with seeing rhuematologists is that they are soooo booked up it takes forever to get an appointment.  I hope this guy works out for you.  Keep us posted.  Lynnette

Blue Wisteria
Regular Member

Date Joined Sep 2010
Total Posts : 39
   Posted 10/24/2010 11:27 AM (GMT -6)   
turn  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!

Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 10/25/2010 12:39 AM (GMT -6)   
I've been on it for 6 years. If I have a bad flare i have to take predisone in larger doses but maintainance I am supposed to take 10mg but I take 5mg. and I have for awhile. Once a year I have a bone scan done to see how I am doing. I do have osteoporosis but it isn't bad. Perhaps you should as to get on plaquenil. If your doc agrees it takes a while (months) to work but it does help with inflmation and it isn't like a pain killer. I'm with the others though. You need a new rhuemy. Maybe you could see another one while in the pocess of seeing the busy one. after all you might not even like the busy one. I've been through 5 and they all agree I have an auto immune disease but they all disagree one what it is.
good luck try using ice and heat ulternating. I've even had luck with ibprophen and beleive me I'm not light weight when it comes to pain meds. right now I'm on 6 10mg vicodin a day. along with the steroids and plaquenil. My lungs are so bad I'm desperate to get off the steroids so I can loose some weight and my lungs don't have to carry so much around.
good luck keep us informed

Regular Member

Date Joined Mar 2010
Total Posts : 90
   Posted 10/31/2010 6:45 PM (GMT -6)   
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 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 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!
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