High dose steroid questions | Arthritis Information

 

To anyone else here that has been on a high dose of prednisone for an extended time period.

OMG, Bob, I don't have an answer for you, except I think it's time to get a different doctor. There are many medical options for RA rather than relying on Prednisone. I hope you're able to get the situation under control soon.

BTW, I have never used pred but I think the moon face goes away when you stop taking it.That's what is so frustrating to me and just makes things seem so hopeless at the same time.  I know that there are other treatements, I've only gone through enbrel and humira.  I took remicade for about a year and I think the only reason it didn't work well is because the dose was never adjusted at all but kept to the minimum allowed.  The only other biologic I've taken is Kineret and I never hear much about it at all anymore.    bob, I was given 1500mg of IV Prednisone in May and I have now weaned down to 4mg.

I have had the swollen face etc but the worst has been my ears have been swollen to the point of incredible discomfort. I could not even lie on my side, had to sleep on my back. During the weaning process I have had several bouts of this so I understand what you are saying about how uncomfortable you are.

Yes, it all should dissipate once you are off the steroids. It just takes time.

Your doctors should know all about this. If you haven't told them do so. It's important. There isn't much they can do but they do need to note the side effects you are dealing with.

You need to get of the Pred, obviously. If your doctor is doing nada about it, I would find a new one. Meanwhile you could start reducing it yourself at 1mg per week which is a safe amount.

With that many side effects you have to get off it, I would say.

It is a very effective drug but nasty. I have had other side effects also, which I will share in case it is helpful to anyone. Apart from the ear swelling and face swelling. I have had infections that won't clear up because the Pred stops healing. For about 6 weeks, I also went through a patch where I felt spacey and completely disassociated from my world. That was horrible.

bob, you can't be left on this drug at this dose, it is not okay. These amount of side effects is too much. I would be finding another doctor and getting yourself reduced slowly. Although that won't solve the side effect problem instantly, at least you will feel comforted that you are working towards getting off.

Hope some of this helps.
I did much the same thing that you are doing now.  Started off high and then leveled at 45mg for a while.  It took my 5yrs. to get off it totally.  My face blew up too, and my hair went into corkscrew curls. I looked like someone else. I have tried to find guidelines on what is "too much" Predisone with no success.  Perhaps someone in here knows.  Is it in two parts - one being the dosage and the other the length of treatment?  You read that "too much" Predisone is dangerous, but does anyone know what this means, what are the parameters?  Hang in there, I was on Predisone for five months and will never take it again. justsaynoemore2008-12-31 04:27:56

i have been on them and off of them more times than i can count.  bob it will take awhile for your body to adjust.  do not expect immediate, back to your old self.  it takes awhile...... :-(

I started out on 70 a day,  the first time and it was lowered over 2 years, been a while I think it was down 20 1st. month, then down 10 a month till I got to 30. then down 5, 2 1/2, and he started the down 1 a month, took forever. I had the swelling, high blood presure, catatracts,  forgot names, a few other things had surgery on eyes and take meds for bp, took a while, but as pred. was lower, side effect got better.  I said never again, but few years later I got down again and was put in hospital and 150 pred. IV. left hospital on 90 every other day.  went down monthly to 70, 50, 40, 35, 30, 25, 22 1/2, 20, 19, 18, 17 about this time I got so sick of the same side efffects that I started going down 2,3, 5, then just stopped.  It's not good to do it on your own I lied to the doctor for a while, He was very unhappy with me.  I was put on the hard stuff, cytoxin, which can cause cancer and other stuff, them imuran which can also cause side effects. sometimes the meds are worst then the ra.   Now after 27 years with RA. I'm still able to walk and pretty well live my life, till I got cancer, but not from the cytoxin but my teeth.  I gusse what I'm trying to say is I'm happy with the treatment I got,  the pred. because it got me back on my feet and kept me going till the other meds kicked in.  Would I do it again, I would really have to think about it.  Ra. is a hard life that you have to learn to live with,  It seen prednisone is part of it.  They alway went down monthly on me, I wouldn't want to stay on 45 over 30 days, talk to doctor.

Justsaynomore...Bob and I aren't the same person... Bob- best of luck at your appointment! Although I have never been on doses as high as yourself I can understand your frustration about the side effects prednisone brings. The worst part for you is it is not really really bringing the relief you deserve for being on such a high dose! No trade offs! I sincerely hope this new dr. is the answer to your prayers. Bob, pred is a horrible horrible drug. People tend to have a love hate relationship with it which is so sad. Try to wean off this drug if at all possible and never go back on it. You are on alot of pred. It was never intended to be used this way. Do you have adrenal insufficiency? It may be hard for you to get off this med real soon. Please see your doctor and tell them your concerns. What kind of a diet are you on?I'm all prepared for her.  I have every lab report and radiology report from the last 8 months for her to put in my file and I also got things ready in case she says she would like to try one of the infusions.  I'm sure many people here know what kind of paperwork is required to get help with these drugs.  I have my tax return from last year, monthly proof of income, last bank statement, all that good stuff.  [QUOTE=justsaynoemore]Bob (a/k/a Rebecca My pain dr. is very anti pred but does use dexamethasone.  He would much rather have his patients on that.  It is also a steriod but is prescribed at much smaller dosages.  Let us know what the dr. says.  I hope this is someone who will work with you so you can stick with them for awhile.  That is always the hard part-finding someone you like who you can deal with seeing for the forseeable future.

Nope, we're not the same person.  I hope this doc works out too.  She will be the 3rd one in 6 months.  I've got my fingers and toes crossed...though not on purpose.  How is the Orencia working out for you Rebecca?  That's one of my remaining options and the one I would prefer to Rituxan to be honest.  The PML thing scares the hell out of me!  It would be just my luck.

Bob

Bob, It's not working.  It did for a bit but the last few months have been really bad.  Joints of course inflammed-especially jaw :) and a ton of eye issues.  Due to start rituxen in the middle of Jan.  I am excited about not having to miss a day of work each month for an appointment.

Duh, I should have known that from your post about the jaw surgery thing.  What a bonehead I am sometimes!   

Geez, guys - I accidentally put Rebecca in at the start of the post when I first posted, and then later reread it and realized Bob started the post not Rebecca.  It was an honest mistake and I guess I thought you had read it by the time I realized I had goofed it up, thus the a/k/a - I was trying to lighten up the mistake.  I will remove Rebecca's name and sorry for the confusion and then the perceived insult.  Sorry, it started out as an honest mistake, but I can tell and know why everyone is so touchy in here lately, and I don't blame anyone for being touchy, its been so stupid. No problem. I found this online since many people ask what it considered low/high dosage and length of time. rocckyd2008-12-31 06:48:31[QUOTE=rocckyd].  True, mtx and the biologics have scary side effects but those are often the exception.  Pred. side effects are the norm.[/QUOTE] JSNM-don't worry about that.  It's an honest mistake..they happen.  [QUOTE=bob_h76]To Cordelia....holy crap I thought I was on a high dose!  1500mg IV, how are you still alive?  What does that equate to in terms of oral dosage?  Or did you do a really high oral dose?  I have the feeling like I'm "spaced out" all the time.  Not really dizzy, just not like I'm living in reality.  Well, actually it does kind of feel like I'm walking around with my eyes crossed all the time.  I think it's from the glaucoma treatment though.  The drops I was given don't agree with me so much.  That can be changed no problem though.[/QUOTE]

Yeah, 1500mg IV was pretty awesome but here's the real kicker...after three 500mg doses I only got the tiniest amount of movement back and I mean tiny. See it turns out that Pred doesn't work with me, it does a little but not like what other RAer's experience.

Some of you it's worth staying on 2mg - 5mg because it makes you feel so much better and your movement increases...with me, nope.

So I went through all that to get nothing and then I have had to wean myself down from the huge amount. I am nearly off, I do 3mg from Monday next week.

I am not sure that there is an equivalent oral dose, Bob. After the 3 days of IV they then dropped me down to 100mg oral for one day, then 50mg for a day. Then my Rheumy stabilized me at 35.5mg for two weeks. Then down to 25 for about two weeks. Then 20mg. From 20mg I have been reducing it at a 1mg a week which is working really well. 

And oh, just before the IV they had tried me on 50mg and then 100mg oral which wasn't working, so they then decided to hospital I would go for the IV treatments in the hope they would make a difference.

Yep, that is the spacey disassociation that I was talking about. That is exactly how I felt, not living in reality. Yeah, your glaucoma treatment could be effecting it but just Pred alone can cause that in high doses. It was incredibly horrible and went on for about six weeks with me. Yuk!

I'll assume that you got the moon face while on the prednisone as well?  Somedays mine is worse than others.  But, what has me worried is that I've been miserable for a week or two so I went up just 5mg on my pred dose and it seems some of the puff went away.  This has me so scared that I'm going to somehow be dependent on a high dose and whenever I get on a biologic that will work and can cut back more that my face will get worse as I reduce the dose.

Do you think that was just a strange coincidence that this happened?  Like I said, the facial swelling has been up and down since September.  Sometimes it's bad, sometimes it's not.  But it has never completely just gone away and I don't expect it to. [QUOTE=bob_h76]

I'll assume that you got the moon face while on the prednisone as well?  Somedays mine is worse than others.  But, what has me worried is that I've been miserable for a week or two so I went up just 5mg on my pred dose and it seems some of the puff went away.  This has me so scared that I'm going to somehow be dependent on a high dose and whenever I get on a biologic that will work and can cut back more that my face will get worse as I reduce the dose.

Do you think that was just a strange coincidence that this happened?  Like I said, the facial swelling has been up and down since September.  Sometimes it's bad, sometimes it's not.  But it has never completely just gone away and I don't expect it to.

I don't know what I would do without this site and the support of kind folks like you.  It really helps a lot to talk to people that have been through or are going through the same things. 

Bob

Bob, it is sounding like you have gotten to the 'insane' place with Pred where it is not very useful to you. If it doesn't achieve startling and incredible results it is just not worth it, especially since it takes so long to wean off it. I will never ever take it again. It is just not useful to me at all and causes horrific side effect. No way will I ever go there again.

It helps so much to talk about it, I know. That is exactly what we all come here for, Bob. You will find yourself supporting others with things you have knowledge about when the time comes. And knowledge is power with this disease, the more we can educate ourselves, the better we cope.
This thread has scared the bejesus out of me. I've been on 5 MG of pred per day for a couple months with 12.5 MG of MTX per week. Next appointment in a couple weeks. I had already intended to ask the doctor if I can go off the pred, I didn't want to take it in the first place but the doc said I should to knock down the inflammation. These are my first drug therapies, I'm newly diagnosed. I haven't had any side effects at all, I'm a little fatter but it IS after Christmas, right Bob? Actually I feel a lot better since starting these drugs and am sleeping well for the first time in a year, with lessened pain.
I'm not real experienced, but Bob I hope you get off the pred, it sure sounds like it's not helping you. Thanks, Rebecca, for the list of side effects and dosage information.Blue - I am with you, I contacted a medical malpractice attorney today.  [QUOTE=justsaynoemore]Blue - I am with you, I contacted a medical malpractice attorney today.  [/QUOTE]

Because I am going to have an attorney look over my fired rheumy and his associate internist treatment or lack of treatment or wrong treatment of me. 

As I remember, anything 7.5 and below is considered a low dose steroid therapy. 

Lynn492009-01-02 17:47:39Also, starting with pred. is common.  If pred reduces pain and helps-then it is probably an inflammatory condition.  If pred doesn't help, dr.'s broaden their diagnosis.  It's pretty standard practice.  Used this way, their shouldn't be alot of side effects, and it will provide relief until a diagnosis is reached.

As much as I hate pred. Lynn and Rebecca are right.  If used properly it is a wonderful help.  It's just not useful as a stand alone treatment.  Blue, the last thing I want to do is scare someone that is newly diagnosed with this thread.  Please, don't be afraid of 5mg that dose is pretty tolerable.  I was on 5mg for many years as a maintenance dose before my flare up.  I didn't have many side effects from it at all then.  I was a little bit shaky but that was it.   You'll be alright on 5mg I promise.  In fact I've had many docs say that 5mg as a permanent dose is acceptable, even up to 7.5mg is still ok.

Again, I'm sorry if we've frightened you.  It certainly wasn't my intention to scare anyone.

Bob

Bob, that's okay, don't worry. It's necessary to hear about nerve-wracking stuff in order to gather the information I need to make the decisions how to treat myself. I am VERY interested in becoming educated, and that's the great thing about this site and the people who are willing to reveal their experiences. I learned a lot from this thread, and I thank you all for posting it. Knowing what questions to ask the doctor, keeping an eye on dosages myself, etc are all so helpful to me. My talk of being frightened was mostly my overly-developed sense of humor, which creeps into everything I write.
Knowledge is power! I never will turn away from it because it might make me uncomfortable. Thanks again to you all.Well then in that case I'll tell you one more thing about high doses of pred.  I have NEVER in my life had so many problems with respiratory infections!  I was on enbrel and MTX with 5mg of pred for years and off my enbrel maybe twice a year, once in the fall and then again in the spring maybe.  Then remicade, mtx, and 5mg pred., same deal.  Since this massive pred dose though it seems I get rid of one infection, get back on my enbrel and mtx for about a week or two and then boom another one pops up.  The pred is just wrecking my immune system I think.EEEK!
Just kidding! Bob, I really hope that once you go off the pred the terrible problem with your infections heals up. Good luck at the doctor's. From what others are saying, you'll be all right when you get off it.Hi guys, Cordy and Bob, I think if I remember correctly 1500mg of IV pred equates to 150mg orally, I had major surgery in 2004 and I had to have 2500mg of pred iv and I am sure because I protested wildly, they explained that it was equivalent to 250mg, so if you ever have surgery they give you a very large dose because your body doesn't have the power to protect itself due to adrenal insufficiency.  I know I looked like the michelin tyre man on the ad as my face turned into one big bubble. Holy monkeys that's a huge dose!  My friend with MS was recently put on 60mg daily and told it would be for an indefinite time period.  (probably because he has no insurance and can't afford the injections for MS)  Bob, I'll let him know about that too.  You know, I think my cousin who also has MS gets his meds through the drug company too.   I was told by his dad that one time, after he had been fighting with his ex wife he woke up blind from his MS.  His vision eventually returned, but wow that would be scary.   Has anything like that ever happened to you? [QUOTE=bob_h76]I'll let him know about that too.  You know, I think my cousin who also has MS gets his meds through the drug company too.   I was told by his dad that one time, after he had been fighting with his ex wife he woke up blind from his MS.  His vision eventually returned, but wow that would be scary.   Has anything like that ever happened to you? [/QUOTE] [QUOTE=janiefx]Hi guys, Cordy and Bob, I think if I remember correctly 1500mg of IV pred equates to 150mg orally,  [/QUOTE]

It depends on which specific drugs you're talking about.  "Pred" or "Prednisone" is often used as a generic catch-all to refer to all anti-inflammatory corticosteroids (i.e. methylprednisolone, prednisolone, prednisone, dexamethasone, etc).  For instance, 20 mg hydrocortisone is roughly equal to 4 mg of methylprednisolone.

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