Has anyone successfully weaned off prednisone without using a biologic

Posted by tobeybaby @tobeybaby, Aug 16 10:01am

Has anyone successfully weaned off prednisone without using a biologic and if so, how long did it take and what were your symptoms along the way?

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@tuckerp

yes. I was one that did not have elevated inflammation markers. ESR and SED rate were in normal range. My HSCRP was elevated but apparently that can be something else. I had no pain felt like a million bucks on 10mg. I tried at 3 months to reduce and pain came back. I tried again at 4 months and some discomfort but was able to drop to 5mg. I stayed here for another month then dropped to 2.5mg. Increased pain but an aleve would sort of fix it. At month 6 I went to zero. Still having discomfort, light headed, gurgling stomach, BP was up, cholesterol was up, A1C was up. On scale 1-10 I was about a 6-7 in pain. Took about a month to feel better and about 3 months to feel normal.

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What you experienced sounds a lot like what I experienced that was identified as adrenal insufficiency. Did you doctor suggest this problem or test for it? It can often feel like PMR pain but the cause is that the long-term use of steroids put your adrenal glands to stop working since the body is getting steroids orally. waking your adrenal gland up can be easy or it can take weeks to months to taper very slowly.
This is a short article on adrenal insufficiency from the National Institute of Health - https://www.niddk.nih.gov/health-information/endocrine-diseases/adrenal-insufficiency-addisons-disease/symptoms-causes

It states "The most common cause of adrenal insufficiency overall is suddenly stopping corticosteroids after taking them for a long time." My understanding is "long term" in this case can mean greater than 2-3 weeks.

I had to define a very slow tapering plan once I hit 10mg. It seems that that is about how much your system publishes when your adrenal glands are fully functioning if you are not on oral steroids. Once I started to drop below 10 it was slow and steady drops in oral steroids that won the race. Looking at it from what you are providing your body, dropping from 10mg to 5mg is a 50% drop in what you are providing your body. If your adrenal glands are not fully awake your body is not going to get the steroids it needs and your body will complain big time. Those pains could easily be confused for a PMR flare. Below 5mg I would drop 1/2 mg every time I dropped. It took awhile, but it worked.

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@jabrown0407

What you experienced sounds a lot like what I experienced that was identified as adrenal insufficiency. Did you doctor suggest this problem or test for it? It can often feel like PMR pain but the cause is that the long-term use of steroids put your adrenal glands to stop working since the body is getting steroids orally. waking your adrenal gland up can be easy or it can take weeks to months to taper very slowly.
This is a short article on adrenal insufficiency from the National Institute of Health - https://www.niddk.nih.gov/health-information/endocrine-diseases/adrenal-insufficiency-addisons-disease/symptoms-causes

It states "The most common cause of adrenal insufficiency overall is suddenly stopping corticosteroids after taking them for a long time." My understanding is "long term" in this case can mean greater than 2-3 weeks.

I had to define a very slow tapering plan once I hit 10mg. It seems that that is about how much your system publishes when your adrenal glands are fully functioning if you are not on oral steroids. Once I started to drop below 10 it was slow and steady drops in oral steroids that won the race. Looking at it from what you are providing your body, dropping from 10mg to 5mg is a 50% drop in what you are providing your body. If your adrenal glands are not fully awake your body is not going to get the steroids it needs and your body will complain big time. Those pains could easily be confused for a PMR flare. Below 5mg I would drop 1/2 mg every time I dropped. It took awhile, but it worked.

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I agree completely. Your advice is much better than how I did it or how I would advise someone. I was giving my example that the pain you feel when tapering is not necessarily PMR. Many confuse this prednisone taper with PMR pain. When in fact they are almost identical. My wife has cancer and takes Dexamethasone. I know the effects of steroids. I was determined to get off. A scale of 6-7 pain for most would make you think its PMR but I stayed the course. I understand you can let prednisone pain restart the PMR but I was willing to give it a shot. But I agree with everything you said in your analysis.

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Yes, when I first started to wean, I had a relapse and had to go back to 12 mg. Stayed at that level for awhile then proceeded more slowly. Really drug out the last part and finally got all the way off, without other drugs. My advice is to go even slower than you think you should. Don't let the doc rush you.

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@thenazareneshul

Yes, I did it back in 2015. Though, I'm not sure you would call it successful. I did. The PMR roared back, but I'd gained 90 lbs by then, so I just had to do it. It turns out it the weight gain was going to kill me. So, getting off the Prednisone was lifesaving. It also was putting me on the road to going blind. I've had to have 3 laser eye surgeries for the Glaucoma the Prednisone caused. And my eyes have to be checked many times a year now, to catch it, and treat it. Going off meant just reducing it as slowing as I possibly could. I mean by using 2 mg Prednisone tabs at the end. I also used Pain Management's services to endure the pain and they, of course, always gave me the lowest possibly hydrocodone with Tylenol. AND steroid shots into whatever joints hurt the worst. The amounts (I was told) of steroids injected, is small and localized so they don't act like when we ingest it body-wide. See if you can get in with Pain Management? One caution. While all this was happening, and during the going off, as well as after (big time) every prescriber told me, automatically, to take Ibuprofen or wrote script for prescription NSAIDs. So, that was most of the time from 1992 to now. Turns out, doing that has harmed my kidneys and some of those prescribers knew it. I gotta get over that. Don't let them do that to you. Watch it yourself via your labs, or better yet, have your doctors do it.

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What you have described is one of the reasons why long term prednisone use can end up being detrimental to your health. There are times when the side effects from medications exceed the benefits and Prednisone is no exception. It is nearly impossible to abruptly discontinue Prednisone when it is necessary.

"So, getting off the Prednisone was lifesaving."

I agree with you ... it was for me too. However, I needed a biologic when I was unsuccessful at tapering off prednisone for 12 years. I'm in awe of anyone who succeeds without the help of an alternative medication.

I tried several alternatives until my rheumatologist found something that worked. My medical records shows a list of "failed" medications. I suspect the other medications failed because they didn't get me off Prednisone rather than they didn't help to manage PMR pain. Even when my rheumatologist submitted the request for the biologic -- what was emphasized the most was an "inability to taper off Prednisone."
"

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I tapered off methylprednisolone in six months without any issue. The PMR pain never came back, but I’m left with horrendous back pain which has been diagnosed as lumbar stenosis. I’ve had it for years, but never had pain the way I have now. I don’t think PMR is the issue any longer, but I do believe it is the culprit that started the whole thing! I was hospitalized in January with Covid and was given 60 mg of prednisone to treat the cough. It took away every pain and arthritic ache I had, it was wonderful, but it was stopped as soon as I left the hospital. No tapering. But also no problem!

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Yes. I took my final dose of prednisone on January 31st. It has not been easy since then. I have gone through most of the post-prednisone withdrawal symptoms and am only now starting to feel better.

The main thing I’ve noticed recently is that my body seems to overreact to any normal pain. I had some dental work done and thought my jaw had been fractured. Follow-up with the dentist didn’t show anything unusual. I strained my meniscus and have struggled with extraordinary pain in my back, hips and quads since then. My doctor and my physical therapist don’t see anything unusual in my recovery. I’m hoping that this is just a phase.

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@shannonjp

Yes. I took my final dose of prednisone on January 31st. It has not been easy since then. I have gone through most of the post-prednisone withdrawal symptoms and am only now starting to feel better.

The main thing I’ve noticed recently is that my body seems to overreact to any normal pain. I had some dental work done and thought my jaw had been fractured. Follow-up with the dentist didn’t show anything unusual. I strained my meniscus and have struggled with extraordinary pain in my back, hips and quads since then. My doctor and my physical therapist don’t see anything unusual in my recovery. I’m hoping that this is just a phase.

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Wow, I have a lot of info to gather on this prednisone, did not realize there are so many post symptoms. Not looking forward to any of these, but I’m determined to get off this drug.

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@tobeybaby

Wow, I have a lot of info to gather on this prednisone, did not realize there are so many post symptoms. Not looking forward to any of these, but I’m determined to get off this drug.

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I don’t know if everyone has my level of problems getting off prednisone. I just know that I’ve been taking Alendronate for 3+ years for osteoporosis and I didn’t want to be on prednisone a day longer than necessary.

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@jabrown0407

What you experienced sounds a lot like what I experienced that was identified as adrenal insufficiency. Did you doctor suggest this problem or test for it? It can often feel like PMR pain but the cause is that the long-term use of steroids put your adrenal glands to stop working since the body is getting steroids orally. waking your adrenal gland up can be easy or it can take weeks to months to taper very slowly.
This is a short article on adrenal insufficiency from the National Institute of Health - https://www.niddk.nih.gov/health-information/endocrine-diseases/adrenal-insufficiency-addisons-disease/symptoms-causes

It states "The most common cause of adrenal insufficiency overall is suddenly stopping corticosteroids after taking them for a long time." My understanding is "long term" in this case can mean greater than 2-3 weeks.

I had to define a very slow tapering plan once I hit 10mg. It seems that that is about how much your system publishes when your adrenal glands are fully functioning if you are not on oral steroids. Once I started to drop below 10 it was slow and steady drops in oral steroids that won the race. Looking at it from what you are providing your body, dropping from 10mg to 5mg is a 50% drop in what you are providing your body. If your adrenal glands are not fully awake your body is not going to get the steroids it needs and your body will complain big time. Those pains could easily be confused for a PMR flare. Below 5mg I would drop 1/2 mg every time I dropped. It took awhile, but it worked.

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I have been on prednisone for 4 years and have recently changed rheumatologists due to the previous one relocating. Progress had been made in reducing dosage from 20 to 8 mg during that time. The new specialist plans a more aggressive reduction schedule. The first change was to drop to 7 mg and stop the Hydroxychloroquine completely. The effect on my mobility of the first drop was nominal. But after two 0.5 mg reductions over 6 weeks, I am at 6 mg, but really suffering with the last step down. The last couple of days, I've had swelling around my knuckles, weakness in my grip, tingling in my hands, discomfort in my shoulders (causing restless, uncomfortable sleep) and during a 2 mile walk yesterday, soreness in my hips.

I'm sure each case is different, but need some sort of timeline on the progression path. Am I looking at a 6 month or 4 year objective? Even that would help with the mental health aspect of this affliction.

I'm scheduled for neck x-rays next week before my next appointment the following Tuesday. Perhaps, I'll know more after.

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@yertondg

I have been on prednisone for 4 years and have recently changed rheumatologists due to the previous one relocating. Progress had been made in reducing dosage from 20 to 8 mg during that time. The new specialist plans a more aggressive reduction schedule. The first change was to drop to 7 mg and stop the Hydroxychloroquine completely. The effect on my mobility of the first drop was nominal. But after two 0.5 mg reductions over 6 weeks, I am at 6 mg, but really suffering with the last step down. The last couple of days, I've had swelling around my knuckles, weakness in my grip, tingling in my hands, discomfort in my shoulders (causing restless, uncomfortable sleep) and during a 2 mile walk yesterday, soreness in my hips.

I'm sure each case is different, but need some sort of timeline on the progression path. Am I looking at a 6 month or 4 year objective? Even that would help with the mental health aspect of this affliction.

I'm scheduled for neck x-rays next week before my next appointment the following Tuesday. Perhaps, I'll know more after.

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Welcome @yertondg, Sorry you've had such a struggle with PMR and hopefully the new rheumatologist can help you taper off of prednisone. You are right that each case is different. My first time with PMR took 3 and half years to taper off with the last six months going back and forth between 1 mg and 1/2 mg until I finally could taper off and only have minimal aches and pain when I woke up in the morning that would go away as I started moving around. @dadcue and others may also have some suggestions for you.

There is a slow tapering plan that is listed on the HealthUnlocked PMR site that you might find helpful -
Dead slow and nearly stop reduction plan (DSNS - Tapering)
https://healthunlocked.com/pmrgcauk/posts/131189593/dead-slow-and-nearly-stop-reduction-plan
Do you keep a daily log of your level of pain when you get up in the morning and your prednisone dose for that day?

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