One Patient's Positive Perspectives

1/2 mg at a time…

If I were joining a twelve-step program, I suppose I would have to make my introduction by announcing “Hello, my name is L.A. and I am an addict.”  Although the statement causes anyone’s mind to run to illegal drugs, they are not the substance of my “addiction.”  I am medically and chemically dependent on the legal prescription medication prednisone that I take every day for my lupus.

I am an Addict

I have been an “addict” for fifteen years.   I have taken 5 or more milligrams of prednisone each morning for so long that my own adrenal function was suppressed.  It took so long to diagnose my lupus, and to finally begin treatment with high-powered steroid-sparing medications (methotrexate and azathiaprine) that my adrenal function was eventually suppressed.

Any time this drug is supplied to the body from outside, the adrenal gland stops producing the equivalent of the normal 7.5 milligrams of hydrocortisone the body needs daily to survive.  After taking daily prednisone medication for as long as four or more weeks, the body becomes dependent on the prescribed prednisone.

The prescription artificially becomes part of the delicate interactive endocrine balance of essential and non-essential hormones produced by the adrenal, pituitary and hypothalamus glands.

Weaning by Small Steps

Sudden removal of prednisone can become life-threatening, so reduction of the dose must be done gradually to avoid adrenal insufficiency.  The longer the dependence has lasted, the slower the attempted withdrawal must be. Hopefully, as prednisone dose is incrementally decreased, the adrenal gland should begin to resume production of equally increasing amounts of natural hydrocortisone.  However, the adrenal gland won’t always turn on again.

Hydrocortisone is a natural hormone produced by the cortex (outer layers) of the adrenal gland.  Cortisol hormones are essential to life, and control many essential physical functions, including the body’s use of fats, proteins, and carbohydrates, suppressing inflammatory reactions in the body and affecting the immune system.

Unfortunately, sometimes after extended dependence on an external prednisone supply, a patient’s adrenal gland is unable to resume production.  The result can be irreversible steroid dependence, or described from a negative perspective — addiction.  Because of this, my doctor is duty-bound to once again try to lower my dose with a hopeful goal of stopping the drug altogether.

Only Time Will Tell

butterfly clock

Only time will tell…

Whether mine is a reversible prednisone addiction, or an irreversible one, only time will tell.  My rheumatologist is the sponsor and instigator of everyone one of my attempts to break the prednisone dependence.  (I never suggest it.)  Taking Benlysta is part of that steroid-reduction program, one of the treatment goals of this expensive medication is to reduce the need for steroids.

Today’s infusion marked 23 months of receiving Benlysta for my lupus.

Now, it is time to try to take the next (somewhat dreaded) step.  I am the last remaining lupus patient in my rheumatologist’s medical practice that is receiving Benlysta, who is still taking daily prednisone.  When my doctor proposed his plan to cut my prednisone dose, I grudgingly agreed.

Dr. & Patient Negotiation

doctor talking to patient - hands

Promising to give it a try

I searched my doctor’s face, assertively asking, “Really, do you really think I can do it?  Will it really work?  It never has worked any other time in the past fifteen years.” Reminding him, I continued, “Every time we have tried, I’ve gone into a massive flare. I just don’t want to try it again!”

After I had completely finished my ranting, his emphatic reply was, “Yes, I do.”  I shook my head in disbelief again and looked down at my feet, as he continued to coax me toward accepting the challenge and give it an all-out try.

cc

Promising to be compliant

Looking up at him again, and finally nodding in true agreement, I promised to be a compliant patient.  I agreed, but reminded him one last time of my complete lack of faith.  I would try, but I didn’t believe it would work.  I dreaded the certain flare that I simply knew would follow.

The Multistage Plan

Large supply of 1 mg prednisone tablets

Determined to give it a go, we negotiated an extremely slow plan to drop my daily prednisone dose in 1/2 milligram increments.  My doctor prescribed a large supply of 1 milligram tablets, and encouraged me to return in three months to report my progress.

I had only recently finished successfully dropping from 10 to 5 milligrams of daily prednisone over the previous few months.  Now, over the next few months the plan is to drop the daily dose by 1/2 milligram per month.  Only time will tell if it will work.

 

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Comments on: "Lupus and breaking long-term prednisone dependence" (21)

  1. LA,
    Hope you are still on course! I have a ? about a comment made earlier in this particular blog: a reader said she was in CKD remission. I have CKD too, stage 3, not directly due to lupus, but from the years (30 or so) of taking NSAIDS. What is meant by remission? Since I no longer take NSAIDS, my labs are improving.
    Thank you!

    • Mary: Stage 3 CKD (chronic kidney disease) is some pretty serious stuff! If you are in remission, and stable then your kidneys may not be getting worse. You are in remission when your symptoms are quieted down. If your glomerular filtration rate (GFR) kidney function rate is better, then your kidneys are working more than they were before. Doctors calculates GFR from blood creatinine levels, age, ethnicity and other factors. GFR below 30 is pretty bad where you might need dialysis or transplant and GFR around 15 means you are headed into that type of kidney trouble. Remission means whatever damage you already have is not getting worse any more, and I assume that means your kidneys are still functioning. I would be curious to know what your GFR is. LA

  2. hope the weaning process is going well.

    i was only diagnosed June 19 with SLE and started Plaquenil. Since then, I’ve developed severe neuropathy and was prescribed a 6 day prednisone pack and also Neurontin. I’ll have EMG and nerve conduction tests next week. This is not a ride for the faint of life….:)

    • AM: It sounds like you are having some serious lupus issues to start out with on your adventure with lupus. Indeed, lupus is NOT for the faint of heart, it is for the person who refuses to be a victim… fight, fight, fight against it having control over all of your life. Hang in there, and battle. It is worth it! Lupus is only ONE thing, not the ONLY thing in our lives. LA

      • Hi All! The only way I got off prednisone was to more aggressively treat my lupus. I was dx’d with SLE in 2010 and had (PN, OA, reiters,TN, etc) last year had a small (thank goodness) TIA, and about 8 months ago was dx’d with a seizure disorder (myoclonic epilepsy) through an EEG and a nerve/muscle entrapment syndrome through my newest EMG.
        Because of the severe cranial nerve and peripheral nerve problems, my new rhematologist (who I started seeing AFTER the TIA based on what I felt was a doctor who kept throwing more and prednisone at me to treat my bad rashes and lesions, hemolytic anemia, etc. When I asked him one time about trying methotrexate, imuran, cellcept or benlysta he said NO because I am in CKD remission (kidney problems). They’ve been in remission since 2010. Something didn’t seem right to me. I can understand and appreciate prednisone-its saved me and is the only thing that works, but not why I was not a candidate for another med as well besides plaquenil. So I switched rheumies after the TIA last June.

        My new one I LOVE. He immediately suggested Cellcept because of my nerve problems, trigeminal neuralgia and PN, I have bilateral carpal and tarpal and ulnar neuropathy. He said it is a good drug and should especially me with my cutaneous, discoid and pemphigoid rashes and lesions.

        He was RIGHT. I have much less need now for prednisone. I believe it was the right choice for ME.

        IMO- At the end of the day-YOU go home to your family and your doctor goes home to his. You deal with the symptoms for lupus and not your doctor so do what’s right for YOU.

        HUGS and LOVE, Julie
        ps you know I love your blog, right? 🙂

      • JJ: It is so awesome to get your comment, neighbor! Your instincts were extremely good to question your doctor, and sense the need for less steroids, and to suggest trying more powerful drug to take their place. The hallmark of moderate to severe lupus treatment is to use steroids as a crisis intervention — organ and life saving treatment. Then, to withdraw the steroids as quickly as possible after the lupus quiets down.

        When the lupus continues to flare and pulling back the higher dose steroids doesn’t work, then the prevailing standard of practice is to reach for more powerful drugs in order to reduce the amount of steroids. For prednisone use, the after-crisis two-fold goal is always to use as little as possible as soon as possible. Long term steroid side effects can cause bone degeneration and organ failure due to increased cholesterol blockage it causes in the small blood vessels supplying these tissues. Doctors do not view it as medically responsible to keep patients on moderate to high dose steroids for extended periods of time unless there is no other option.

        The goal of most doctors is to find the level of meds needed to control lupus without while using steroids as sparingly as possible. It sounds like your new doctor is on the right track, completely. This is why using methotrexate, cellcept, imuran and the new biologics like Benlysta is often referred to as a “steroid sparing” treatment. I am surprised your doctor wasn’t suggesting it, instead of you having to!

        Before the two biologics rituxan and benlysta, I first took methotrexate and imuran for almost 10 years, because plaquenil and steroids were just not enough to control the CNS and eventual liver involvement. Benlsyta gives us new hope that I might someday be steroid free!

        I am battling predinsone withdrawal now because I went too many years on cycles of high dose steroids before I got to a rheumatologist and who started me on methotrexate and imuran. This was all happening 25 to 30 years ago. Now, I don’t think I would be in this same situation, since so much more is known about effective treatments, and the new drugs are making such a difference in treating lupus.

        (You STILL owe me a cup of coffee, or maybe I owe you one… anyway, maybe when the new standalone Starbucks on the corner opens by our neighborhood Walmart, we can meet there!) LA

  3. I was able to do exactly that, despite my rheumy saying I would never get off of prednisone since I had been taking heavy doses since 2005. I got stuck at 7.5 mg daily so I solicited the help of an endocrinologist who, over 1 1/2 year was able to wean me off my addicton. Sometimes I miss the nasty stuff because I can’t take NSAIDS due to having damaged my kidneys secondary to taking NSAIDS for so many years. I’m on increased plaquenil and 1 mg. prednisone. I took 2 mg today because I could barely breath/walk. Good luck and thank you for sharing. I’m also on Benlysta infusions, 5 received thus far. Keep us posted

    • Jane: Thank you so much for sharing about your own experience with this challenge. How interesting that an endocrinologist successfully helped you break your prednisone dependence. It will be good to hear from you about your progress with Benlysta. LA

  4. Your post has great information and strategy, along with a very human side. Thanks for posting this for us. I will be praying for you and this situation specifically. Keep us posted.

  5. LA, I pray that all goes well for you in your fight to wean from the prednisone. I was on 10mg per day for over 5 years and have been on a fairly quick weaning process of reduction of 1mg every two weeks. I reached the 0 level and did okay for about 2 weeks with the exception of headaches, fatigue and major joint/muscle pain but pushed through that until I experienced the death of a good friend which threw me into a major flare so I had to break over and take a short taper…15mg one day, then 10 the next, 5 the next 2 and 2 for the next 2. That did bring me back to the way I felt with 0 prednisone and have only been off of it again since July 5th. I do feel like I’m going back into a flare but hoping my body will take over and start producing on its own. I wish I had known that more than 7.5mg could have this devastating effect on the adrenal gland before now as my doc didn’t inform me of such. I am just now finding out that it may not come back from this and if it does how long it may take for it to start functioning again…who knows? I know the way I feel right now is not “living” and have many questions…we will, no doubt go into flares and have to take a taper to come out of them but will that take us back to square 1 and have to go through all of this withdrawal again? Another question will be, why did my doc not tell me of the consequences. He assured me that 10mg was a low dose and not as damaging. On another note, I never experienced the hunger or the moon-face that most report. I have actually lost weight but probably because of muscle loss. Again, I pray that you are able to push through the tapering. It does sound like a much smarter way of weaning than what I went through. Hang in there and please update on how you are feeling as I will be praying that it works this time. Thanks for sharing your story.

    • Susie: Thank you so much for visiting my blog, and sharing your own story. Many, many of us have a struggle getting off prednisone, so you are not alone. However, most of us patients can successfully get off the drug. (See, I am trying to exercise faith here by including myself!)

      Your doctor is correct that 10 mg. is considered low dose, so he wasn’t misleading you. More than that is considered medium or high dose. The risks from all the bad effects of prednisone reduce with the lower doses like 5 or 10 mg, so even the moon face, etc. that you mentioned is much less likely for me on low doses. The problem is the adrenal gland with extended use if the Rx is taking over for your body’s daily need.

      When we go through stress and burst, that does not mean we have failed tapering off. A handful of days at a moderately higher dose, tapering back down will not make our adrenal glad shut down again like long term use does. It should kick right back up again, without any problems if it was working before the burst.

      There will be times in the future when we may have to take it again during flares, but that will not create new dependance if the period of treatment is usually less than a month. If you are on a roller coaster up/down with prednisone, you might want to ask your doctor about steroid sparing medications.

      Every time I go through unusual stress, I also have to dose a little higher for two to three days, especially during taper off periods. The fight or flight thing just doesn’t work very well for me when the normal production isn’t working right.

      Best wishes for your own successful prednisone withdrawal! LA

      • LA, I must say that you are truly an inspiration. With all that you are going through, you continue to help other people through your blog. It has been very therapeutic for me to know yours and other peoples’ experiences. Thank you for your comments on my experience, they have been very helpful to me. I truly hope that the new method of weaning works and you are able to obtain normal production. I will be thinking of you and praying for your success!

  6. I so pray that this works for you!!!

  7. Dear LA,
    I have been on Pred ( 30 mg), since I was diagnosed with Lupus ( 16 yrs ), but was also put on Plaqunil at the same time. I have also tried to get of the pred ride, right now I am at 4 mg,I was told by my rheumy to pick a beautiful day, when all was going smoothly in my life ( haha) and start by dropping a 1/2 mg at a time per month and I can not seem to find a good day, lol. I am going to give it another go after reading this blog of yours. It is so amazing to me when our bodies hang on to things we should not be doing to it in the first place. So from one druggie to the next, good luck with prednisone kick for freedom…

    • DM: Prednisone is a wonder drug, and life and organ saving, yet has many possible negative side effects with ongoing long-term use. We love it, we hate it. We love the way it shuts down a lupus flare, saves vital organs, etc. and we hate the way it makes us gain weight, reduces ability to fight infections, and puts us at risk for osteonecrosis, cataracts, and vascular disease. When we no longer need it, the challenge is always how to get off it again without going back into flare. Best wishes as you give freedom a go, too. LA

  8. I hate to say it but I’ve come to accept that I will be on prednisone for the rest of my life. I have been on if for over 21 years and when I drop down one mg I have a flare up so I have to stay on 10 mg over the years I went from 5mg then 6mg ,7mg up to 10 otherwise I would end up in a major flare. I hope this drug he has you on does the trick for you. I know there trying all different kinds of new treatments. I have to say the prednisone has saved my life at least three times.

    • Gail: Thank you so much for your comment. Your prednisone experience sounds so much like my track record. Every time the dose went below five, I have ended up in major flare, and then undo all the dropping by having to start with another burst and slow taper. I am holding my breath and praying for success. Just when I think he will stop trying, he goes after the prednisone, again. Sigh… LA

  9. I was diagnosed in January and haven’t been put on prednisone as of yet. Supporting you to get this done! 🙂

    • LOC: Thanks for stopping by my blog and sharing your diagnosis, as well as your well-wishes for the challenge ahead of me. I would guess your doctor started you with Plaquenil (hyroxychloroquine) for your lupus. I hope it is going well for you! LA

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