Lupus Support Group

Want2bepainfree,

There are few different issues here.

Normally, our bodies MAKE 10 MG of steroids. After you've been taking steroids for longer than 2 weeks, your body stops making any because, well, why make it when it's being given. So the 10 mg you are currently taking isn't helping your disease at all.

I suspect that you are going through some STEROID WITHDRAWAL because you are no longer getting "extra". As many on the list can tell you, once you drop to 10 mg, you suddenly get horrible pains, aches, etc.---and that is NOT YOUR DISEASE, but the WITHDRAWAL.

Rather than put you on Cellcept, it makes far more sense to up your steroids 5 mg. And if Plaquenil isn't working, most docs STOP IT. It doesn't work for some patients. (It didn't for me and I tried it 2X and 1X even Atabrine that turned me yellow.)

Cellcept is a BIG GUN drug, usually reserved for when patients fail on other stuff. Has your doc tried Methotrexate? That's the standard "next step" rather than Cellcept. And for the record, I was on Cellcept and it did nothing for me whatsoever. There's also the option of giving you a long acting steroid shot. Here is the question you need to ask YOURSELF---what is the biggest problem I have? Is it pain? Is it inflammation? Is it fatigue? Is it kidney damage? Each of these things have different solutions.

Are you taking anything for your stomach? Depending on your stomach issue there are OTC options like Zantac, Prilosec, even Tums, that can help. If you are talking about nausea, there are meds (but not OTC) that can help and are very safe. (Many are given to pregnant women.)

So in short, here are my suggestions:

1) Take something for your stomach
2) Ask your doc to either A) up your steroids, b) start MTX or c) give you a long acting steroid shot (which gets around the stomach issue). I wouldn't start Cellcept.
3) And TALK to your doc about what you are trying to accomplish with the treatment. and D/C Plaquenil.

Tracy

Hi,
I have to agree with Tracy....The next step for treatment is Methotrextrate...Cellcept is usally prescribed when the MTX doesnt work on a person. I personally would NOT start off with Cellcept when MTX can be tried first and work for you. It has made me SO MUCH BETTER since being on it with my plaquenil and prednisone..Also, plaquenil is a very slow acting drug. 2 months is not enough time really to say that it isnt working for you or adding a new drug when you may not need it. I didnt notice any difference until after 3 months of being on Plaq. by 6 months I felt SO MUCH BETTER and by 8 months I was symptom free. Its frustrating when it can take so long to work, but really needs to be give the proper amount of time since it is much safer to be on then the others if it does work for you.

I also agree that you should speak to your rheumy about increasing you prednisone dose until the plaquenil has had enough time to kick in. I also have stomach issues from it but they lessen if I A. break up the dose (I am on 9mg now so I take 4 mg with lunch and 5mg with dinner) B. Take it on a FULL stomache C. if its causing you anxiety, get something for that as well as something for your stomach.

I can tell you first hand that recently when my rheumy started to lower my prednisone dose I felt HORRIBLE....All my symptoms came back full blown and I was miserable. It was awful. My rheumy put me back on my regular dose until recently and now we are lowering it by only 1mg every 3 weeks. He has no problem with this and as tracy said, Prednisone can cause horrible side effects when your body is use to a certain amount and then stops getting it.

Before you consider the cellcept you should ask your rheumy about trying these things first. You havent been on prednisone that long or at such a high dose that you need to come off of it ASAP. I have been on pred. for almost a year now and my rheumy says I will be on it for at least 6 more months and that is OK. If you dont feel comfortable with your rheumy, you can always get a second opinion. Since the MTX, plaquenil and prednisone is working for me now, my rheumy wont even consider cellcept unless the MTX stops working.....

If you are in severe pain, your rheumy should be more then willing to prescribe something for it. Pain is not good for our bodies and there are meds that can help that. You dont have to suffer. Ultracett/tramadol can make a difference in your pain. It is a non-narcotic with narcotic benefits pain killer.

Again...I have the same stomach issues with prednisone. Taking it on a full stomach has helped me alot. Plaqeunil can also cause upset stomach until your body adjusts to it and there are meds for your stomach they can give you as well.
Hope this info helps you
Melissa

I could not take cellcept due to stomach upset. I take a very similar drug, Myfortic that disolves in the bowel. The only side effect has been constipation off & on. Activia fixes that. I take it because my doc feels my kidneys are at risk. I have stopped retaining water since. Nice. But it does not really help the joints that much, so she is doubling the dose. I am on 5 of pred & have a devil of a time weaning off. Seems to get my lungs and I get really bad raynauds everytime I get down to 3mg. my doc wants me off the pred...me too.

by the way, the way I understand the naturally made steroids is that your body makes a range daily, depending on stress, etc. avg amt is 7.5 mg that the body makes, but can range from 5 mg to 10 mg or more if severe, sudden stress. If you take steroid pills, they can "turn off" your addrenals from making your own steroids, and thereby moderate or decrease your own immune response. Tapering is tricky because you need your body to start to produce natural steroids that we all need to exist but not reactivate the disfunctional part of the immune system and have a flair. For me, sometimes the inflamation comes & goes as I taper down & my body adjusts. I plan on going down to 4mg next week & see nhow that goes.

Thank you Tracy--
I was really hesitating to start on the Cellcept--I think you are right-I will ask my rheumy about Methotreate-I've noticed some people on here are on it--it does seem like the next step after the Plaquenil----I dont really know if the Plaq. is working for me---its hard to tell being that Im on the steroids --It is so intersting to know that I am having withdrawals--I read about that online and figured it could my case...It makes sense now...What happens if I ever get off the steroids? I hate to think that all that pain and inflammation will return...
I was suppose to start my 7.5 dose of the Pred. today--I have pain with the 10mg. and will prob. have it with the 7.5 dose too. The Rheummy said to stay on 10 mg for a while and go down to the 7.5 if I felt ready---1) I feel ready because I dont want to take the steroids anymore (due to my stomach)2) I think I may still have pain being Im on 10mg or 7.5mg.--I would love to go back to the higher dose of steroids-but my stomach--ugghh--I will ask for something--am currently on Nexium and Celafate-(dont really work)---So I want to be on steroids and I want to be off steroids--I dont even make sense!!!---I did have the costisone shot once before--it was amazing--only lasted for about 3 weeks-but is deffinatley another option to get out of a flare..
All in all--thanks for the advice-I will talk to my Rheummy-I'd rather try the Metho. before the Cellcept.--Your response was very very helpful and very much appreciated!!!

Thank you Melissa and Sufferchica--
Very helpful info.--So thankful!!! =)
Now I understand why I have felt so horrible--- It looks like it is going to be tricky to get off these steroids....Its almost a month since I have been on them, so I will be patient and hope for the best....My body has come down from 60mg to 10mg in such a short time--no wonder I feel like a wreck!!! Not only am I dealing with the Lupus-now Im dealing with the side effects of the steroids-I dont know what is worse the inflammation or the shakes ---I think I need to take it realllll slow...maybe I will feel better tappering that way...slowly....
Melissa-as for the Plaq. I will take your advise and give it more time--It has only been a couple of months, and now with the steroids its hard to tell if the Plaq. is working...I will give it some more time and hope that it works--I would rather do the Plaq. and the Meth. before the Cellcept...Im glad I did not start it....It is definatly worth it to try something not as harsh....
You Ladies are wonderful--thank you for your input!!!

Hi again,
Please tell me that you didnt go straight down from 60mg of pred. to 10mg....If you did, I think that is way to much to decrease in such a short period of time. Going from 60mg to 10mg may have completely WACKED out your body and Im not even sure if that is safe to do. Maybe Tracy can chime in about this one. I can tell you this...When I got down to 5mg (within a month) I had the WORST ANXIETY and PANIC attacks that would not go away. I felt like I was loosing my mind and had suicidal thoughts. I immediately put a call into my dr. after hours and he said GO BACK UP. Too low too quickly for my body. Maybe you should put a call into your rheumy today and tell them what is going on...Its better to be safe then have something bad happen to you from prednisone. From what I have been told, it can be very dangerous if not done properly. Not trying to freak you out, but please give your dr. a call just to make sure.

How long have you been on 10mg now? Usually you taper every 2 weeks to allow your body to adjust to the lower dose before you lower it again. Since your having so many symptoms just at 10mg you may need to wait longer to give your body more time before going down to 7.5. That can be a big drop for some of our bodies with horrible effects on it. I am only able to do it in 1mg incriments and its going much better then the first time.

I know you want to get off the steroids ASAP. None of us want to be on them. But, this is a slow process and it doesnt do any good to speed it up when your body isnt ready for it.

I will keep my fingers crossed that the plaquenil starts to work for you soon. I didnt think it was doing squat for me, then all of a sudden one day I woke up and thought "WOW...I feel better!" It got better and better from that point.

My instructions to tapper down was lilke this---
60mg at hospital (for 1 day)then down to 40mg (for 4 days)
then 30mg(for 4 days) then 20mg (for 4 days) then 10mg --
IF you ask me I think there is a huge GAP in the increments---what the heck was my Rheummy thinking??? No wonder I feel like Im a wreck!!! Seriously felt so sick while I was going down on the mg-I thought it was because of my flare or the side effects --I had no idea----Now I know to decrease by 10 mg doesnt make sense--I read that the amounts to taper down are 2.5-5mg at a time---Now I know why I have been so miserable!!! I have been on 10 mg for about 5 days now--pain is back, and I feel uneasy---Now that I am down to 10mg-I dont know what to do--Didnt the Rheumy think that my system would get shocked to decrease by so much?? I was clueless and did not even ask!!-thanks for the info Melissa-what do you think I should do???

I was on 30 mg of Prednisone, 400 Plaquinil,,and now on MTX. Being weened down from the Prednisone has taken months! I am now at 11 mgs for 2 weeks, then 10 mgs for 2 weeks etc. We are hoping I can function on 5, in time.......Just before the 30 mgs of Prednisone, I was on 20 and went down too quickly(my own fault) and I was sick as a dog, mentally and physically. When the Rheumy said "Go SLOW" I now know why! I see him in Nov. and hope I can just stick with the MTX and not be introduced to Cellcept...
Take Care xoox
Sylvie

found a good article on how to slowly go off predisone--sure wish I would have known sooner....Would have saved my sanity--

WEANING FROM PREDNISONE

(C)Copyright 2004 SarcInfo.com All rights Reserved. Revision:19 April 04

Some patients who come to SarcInfo are taking steroids (usually prednisone) which are contraindicated in bacterial diseases, including sarcoidosis.[1] Weaning from prednisone can be an extremely difficult process and guidance is sometimes lacking. Based on our patient experience, we offer the following guideline. As always, consult with your physician regarding specifics related to your situation and work closely with him to monitor your progress as you wean.

Prednisone ruthlessly suppresses the immune system. It stops the body from fighting the sarcoidosis bacteria, and consequently reduces the inflammation the body produces during that fight. This results in a temporary reduction in sarcoidosis symptoms such as joint/muscle pain, skin lesions and shortness of breath. Chest Xrays often clear (temporarily) and the ACE reading always falls (temporarily).

Meanwhile, the bacteria continue to multiply in the tissues without any hindrance because prednisone has shut down the body's ability to fight them. If the patient stops taking prednisone, their condition will relapse, with previous sarcoidosis symptoms returning, often worse than before.[2]

Prednisone mimics the function of the natural hormones produced by the adrenal glands. When patients take prednisone for long periods of time, the production of natural adrenal hormones decreases because of prednisone's effect on the pituitary, the master gland that controls the adrenals. This typically happens when the dose is higher than 5-7mg per day and used for periods longer than one month.

Weaning from prednisone causes the return of the sarcoidosis symptoms that it was suppressing.[3] These withdrawal symptoms are usually not dangerous but they can be very uncomfortable, making it extremely difficult for some patients to complete the weaning process. Benicar, an angiotensin receptor blocker, can greatly relieve these symptoms and ensure weaning success. For sarcoidosis patients, the recommended dose of Benicar is 40mg every six to eight hours to provide this helpful inflammatory blockade.

Most patients are told to take the entire day's dose of Prednisone in the morning. But the half-life of prednisone in the bloodstream is only 4 hours. Dividing the daily dose in half and taking one-half in the morning and one-half in the late afternoon (not at bedtime to avoid disrupting sleep) may alleviate some withdrawal symptoms.

Weaning from a high dose of prednisone to a moderate dose can be accomplished fairly quickly and safely. If symptoms allow, it is suggested that every two weeks the total daily dose be reduced by half until 20mg per day is reached.

At 20mg per day, the body (adrenal cortex) must begin to produce it s own cortisol again and the weaning process needs to go slower to minimize withdrawal symptoms and to avoid dangerous repercussions related to a lack of natural cortisol. Begin your reductions now with the PM dose, keeping the morning dose the same. Ask your doctor for a variety of tablet sizes to facilitate the fractional dosing weaning process.

The following schedule should allow for the safe return of adrenal cortex functioning:

You are now taking 10mg in the morning and 10mg in the late afternoon.

Every 5-7 days, decrease the PM dose by 2.5mg. When the PM dose is zero, divide the morning dose in half again (you will be taking 5mg in the morning and 5mg in the late afternoon) and continue decreasing the PM dose by 2.5mg every 5-7 days until you have reached 5mg per day.

When you have reached this milestone of 5mg per day, you must proceed more slowly. At this point you need your own adrenal glands to be producing natural cortisol, as the prednisone tablets no longer are providing enough corticosteroid to keep your body functioning properly.

At 5mg per day, it is usually advisable to reduce by only ½ mg at a time, remaining at each new dose level for periods up to a month if symptoms dictate.

Take 2.5mg in the morning and 2.5mg in the PM. Decrease the PM dose by ½ mg. every one to four weeks, depending on symptoms. When the PM dose is zero, split the morning dose in half again and continue decreasing the PM dose by ½ mg. as symptoms allow. Repeat the process until you aren't taking any prednisone.

If prednisone is decreased too quickly below 15mg per day, the adrenal glands may not begin making their own hormones again fast enough to meet the body's needs, and symptoms of adrenal insufficiency can result. This is especially true if you have taken prednisone for a very long time. Doc can measure the cortisol in your blood to make sure your own body has started to manufacture cortisol again.

The symptoms of adrenal insufficiency which can occur during this last phase of the weaning process (below 15mg) are nausea and vomiting, anorexia, extreme fatigue, muscle pain, lethargy, dizziness, shortness of breath, weakness, joint pain and positional hypotension (low blood pressure). Some of these symptoms may be similar to your sarcoidosis symptoms. If you have these symptoms and are concerned that they might be due to adrenal insufficiency, you can ask your doctor to do tests.. In an emergency, your doctor can also stimulate the adrenal glands with an ACTH injection, if necessary.

Some patients who have weaned from prednisone report that they continue to experience the side effects of steroid therapy, such as anxiety, depression and irritability for weeks or months following treatment so give yourself time to adjust.

Wanttobepainfree,
I was reading your post and I have to chime in. Please don't change what your doctor is telling you to do with your prednisone. First of all, the doasage you were on in the hospital 60/40/etc etc is a NORMAL round of steroids. To lower you and then keep you at 10 for a while is right depending on what's going on with your body. Usually you can safely lower dosage by 2.5 every two weeks safely. I can tell you I spent almost 2 years on and off of Pred. (I have lupus) and the one thing I have noticed is when I lower it or even like right now when I have been able to get off Pred. (first time in over 2 years) I had tremendous pain for about a week everytime I lowered it but then my body must have kicked in and started making more and the pain would subside. You may have to be on steroids on and off throughout your life with lupus, you probably will but it is not good to be on them anymore than you have to. Prednisone has so many bad effects on your body with longterm use. It can destroy your bones. It can cause liver damage, kidney damage etc. I have had a moom face and gained over 40 lbs. My face is just now getting back to normal and I have been off of it for about 6 months. My experince with Cellcept was not good but that was my experience. I had an allergic reaction and had to go to the ER. My face and neck swelled up and I had trouble swollowing. But, I have a friend that got her ANA down to a normal range by taking Cellcept and she is in remission. All these drugs work differently on different people. OK here is where I disagree completely. Methotrexate is a VERY STRONG DRUG. Methotrexate has many many side effects and although there are a lot of lupus patients on it it is not the next step. There is a step inbetween. Here are the steps as described to me by several Rheumys in the Texas Medical Center and books I have read. First steroids ie Prednisone, then anti-malarias ie. Plaquenil, third anti-rejection drugs ie. cellcept and Imuran and a few others and fourth step Methotrexate. Now I was on Imuran after I couldn't take cellcept and I had NO ADVERSE REACTIONS and as a matter of fact my ANA went from 1:1280 to 1:320 in three months. All these drungs except Pred. take months to work. I would still be on it but I got pneumonia and had to get off all meds and take strong antibiotics. If I start to feel ill again I would not hesitate to get on Imuran. You may want to ask your doctor about it. Also, these drugs can be very pricey if you don't have good insurance so be careful. I paid $25. for a month of Cellcept but the cash price would have been over $800. a month with no insurance. I don't knwo what your situation is. The doctors usually try to get you onto something that starts working so you can get off the steroids. Any doctor that keeps someone one long term steroid use needs to be fired by the patient. My suggestion is talk to your doctor about your concerns about Cellcept and feel more comfortable before starting any drug but I know from watching my friend it saved her life. Imuran may be a good alternative. I refuse Methotrexate and I will continue to refuse it unless I am severly ill. I like my hair too much and I don't want the sores it causes in your mouth not to mention it is just so much stronger than the level 3 drugs. Why skip a step? Good luck and God Bless. Sorry to disagree with just about everyone here but that's what we're here for. In the long run you need to do what you and your doctor decide not what any of us here tell you.
Joni