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prednisone dosage concerns
I am kind of a newbie here so forgive for stupid questions. My doctor just ordered prednisone as follows: 60mg for 5 days, 50mg for 5days, 40mg for 5 days, 30mg for 5 days, 20mg for 5 days. Then zero. From what I have read it appears a bit sketchy to taper from 20mg to zero. Any thoughts?
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24 Replies
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Ive been on Prednisolone for 4 years . I started on 60 and have weedled it down to 30. I doubt it will be reduced further. However I am taking Methotextrate now as wee and have been for 2 years. That started at 20 and is now at 40. As the methotextrate increased, the prednisolone was reduced pro rata. I have had no significant side affects
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Those of us that have been on it for long term have the problem because our body stops producing cortisol. Your dr has the dose reduction in a short period of time so likely fine. The hope is to throw the meds at it and shock it out of you. I wish I had had a wise neuro like that instead just putting me on it for years. Good luck.
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i have been on Prednisone for 30 years and cannot get off of it. I have Lupus and widespread neuropathy. Even a tiny cut in my dose causes horrible weakness, Worse, neurologists doubt MG though widespread symptoms. I literally have no neurologist. So scary..
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So what’s the game plan after the prednisone? Seems like that is an extreme weaning of the prednisone.
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That schedule is borderline. However, since it is your first time on prednisone, it probably will work fine. If you start feeling unwell (low blood pressure, sudden weakness, etc.), you must have prednisone pills on standby, even 5 mg will be enough to make you feel better… The prednisone takes time (4-6 hours) to produce short term effect
From my experience, prednisone will work wonders first time, but whether the effect will be for long time, that is another question. You should evaluate yourself about 14 days after the last 20 mg dose.
Also, since the weaning is rather extreme, be prepared for a few days (day 2 .. 7) where you will really feel not well, and it will be difficult to distinguish if it the lack of cortisteroids or myasthenia which produces that condition
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Hi,I have been on Predisolone for over 3years.Over the course of this period I started from 60mg and now on 1mg since then.I stopped taking it at one stage all together off course tapering off slowly and down to zero.But after 3 months my gMG flared up and went into MG crisis and it was disastrous ended up at ICU and was put on artificial ventilation as swallowing and breathing were the symptoms of putting off altogether(steriods)I was cautioned by my neurosurgeon that I can’t go off it completely so I slowly reduced it to just 1mg per night after my dinner and 10mg of Mestinon.It’s your body so just adjust accordingly as my Neurosurgeon has never asked me to taper off altogether even though I told him I want to get off the Predisolone as long term effect on my bones.But he never seems to care.Recently head a second Bone Density test done and now confirmed at the age of 72 I have Osteoporosis.He has not followed up in many months.When he calls me next I will beg him to put me on non steriod medications tablets like Imuran which is easy on the bones.I was infused with Rituximab (non steriod) just once and I feel quite normal except feel fatigued when I exert doing some physical chores but did get chronic infection like fever but eventually its all pretty much stable now.Touchwood no recurrence till now as I write.Chandra.
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Taking 1 mg of prednisone is virtually useless. If you take that dose, your body will adjust itself in producing slightly less steroids, cortisol, so that overall effect on myastenia will be the same.
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II am also on Rituximab (500 mg every 5 months), and in my case it seems to work fine. But I am still on prednisone (15-20 mg), and obviously mestinon (6-8 x 60 mg), that combination makes me almost symptom-free (I am able to walk 10-12 km and do moderate hiking and also piloting gliders). Every time I try to reduce prednisone, below 15 mg, the symptoms return, especially double vision. I think that being on 1 mg of prednisone, as in your case, is virtually useless, unless you have a cronic condition. From what I understand, long term use of prednisone below 5 mg is unlikely to improve one’s MG condition, it is only for weaning off that smaller dosages maybe useful.
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I am on schedule of 10mg to 15 every other day. Doctor wants me to go to lowest I can tolerate. He also insists I take calcium twice a day because of prednisone. I don’t think I can go below 10mg. It definitely helps.
Robert
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My Intern Doc says to take no more than 5mg per day but 15mg per day made me see very well.
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It’s been 4 1/2 years for me and I’m at 5 mg day. Lowest I’ve gotten is 2 1/2. Seems even with my other drugs prednisone is the only drug that keeps me from double vision. You may be fine with what your dr is suggesting. Quick on and off. Depends on how severe your symptoms are.
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Same here.
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Was on Prednisone on two different occasions, maxed out at 30mg both times. Tapered-off much more slowly then what you’re describing, and leveled-off and held at 5mg for several months before going to 0. But every situation is different, so go with the plan. You’ll always be able to alter the plan if your body tells you to slowdown the taper. Good luck!
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Diagnosed with LRP-4 ocular MG 3 years ago. Began with 40mg prednisone daily to “pop” my eyelids open (Ptosis), which took weeks. Then tapered over time. Currently on 10mg daily which my neurologist at UC Davis believes is a relatively safe dose. Don’t seem to be able to reduce beyond that. My eyelids feel heavy and I get very tired. Taking additional calcium and D3 ( NO MAGNESIUM ! ) and really watch my diet. Want to be off the stuff ( my principal symptom now is fatigue ), but the newer treatments aren’t approved yet for my form of MG ( not enough participants for trial ) so am sort of stuck, getting by day by day…
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I would guess that you will be able to communicate with your Neuro during the Weaning down process. I would follow the Dr.s orders and get off as soon as possible.
I started at 40mg per day in 2019. I am currently at 5mg per day. Cut to 5mg every other day, last year, and that was not good for me.
I might try 2.5mg/day later this year.
I might suggest you follow your Drs. orders and ask lots of questions. (HER or HIM)
This web site has lots of experience and love answering “stupid” questions. 🙂
Good luck –
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Was diagnosed with MG in March of 2022. Began with 60mg of prednisone and Mestinon 60 mg 4x daily. Began Privigen infusions in April with slow reduction of prednisone. Was finally off prednisone in Aug 2022 as it wasn’t helping symptoms as hoped and concern of worsening osteoporosis. Very slow weaning off. Began Mycophenolatet and weaned off infusions, due to cost and concern of damage to veins. Eventually lowered mestinon to 30 mg 4x daily due to muscles spasms mainly in face. Worked with great Doctor of physical therapy to gain strength and had surgery last year for Thymectomy. Time will tell if that really helped.
Mestinon is a godsend! And doing ok on combination with Mycophenolate.
It’s difficult to find correct combination of meds, trial and error. I was lucky with a great neoromuscular neurologist that had history with MG patients. She retired last year and I miss her terribly. She referred me to a different neurologist who is knowledgeable, but just not same connection.
Hoping for the best for you!
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I hope you’re seeing an experienced neurologist. I’ve had years of prednisone and my neurologist does very slow titration, but maybe it’s different with your short-term prescription.
I always tell folks to get a lot of collagen. My bone density improved over 2 years despite the prednisone and being age 75.
Best wishes, Wayne
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Curious. What forms of collagen do you use? Bone broth, supplements, etc?
Thank you.
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Your doc’s dosing schedule seems unusual for treating MG symptoms, but we’re all different and maybe he/she has had success with other MG patients. David-S and Michail have some good ideas that you might want to consider. Prednisone affects many organ systems in the body, so you have to be really careful when changing dosage quickly (every 5 days) and suddenly (20 mg to zero). Good luck, and I hope this works for you!
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I have twice gone on prednisone to relieve my symptoms, and will never do it again. First, the prednisone did little to help. Second, the side effects (for me) were lousy. Depression, fatigue, plus what it does to your liver. I would recommend trying anything else if you have MG.
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My Neurologist, who specializes in MG, and also ALS, started me on 60 mg when I first went in the hospital for 9 weeks. This was about three and a half years ago. I am now on 2.5 mg every other day. He’s had me on Imuran for three years with the goal to eliminate prednisone completely.
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In June 2021, my 62-year-old husband was diagnosed with Ocular MG. Prior to his diagnosis he did have some osteopenia in his back. He was employed at the time.
During in the early stages of treatment he was on Prednisone, pyridostigmine, and Cellcept. The goal was always to get him down to a very low dose of Prednisone and use Cellcept instead. Cellcept also has side effects, however in our opinion it’s a much better choice than Prednisone. His Neurologist subscribed Cellcept (1000mg) within the first month of diagnosis, however, it takes several months before it takes effect.
From July 2021 to August 2022 he was on between 25-30mg of Prednisone. In early 2022, for 4 weeks, his Dr. began to wean him down to a total of 5mg of Prednisone however, he had another flare up. She then increased the dosage to 20 mg while increasing the Cellcept dosage to 1500mg. He still experiences symptoms so the dosage went from 20, then 30 and then for 4 weeks she puts him up to 60 mg to get his OMG under control. Shortly after that, the effect of his long-term use of Prednisone took a horrible toll on his body.
In June of 2022, he broke 5 vertebrae in his back! He initially went out on STD and is still on LTD to this day. His road to recovery has been long and difficult. Due to his significant fractures, the insurance company approved him to get 12 monthly Evenity shots to strengthen his bones. He had no side effects from the shots and currently gets Prolia shots 2x per year and takes 1000 mg of calcium daily.
During that time he remained on 5mg of Prednisone for over 14 months and went off completely in December 2023. He has been on 2000mg of Cellcept since October 2022. Even now after a long day, his one eyelid will droop some, but he vows he will never take Prednisone again. We are very thankful that he is doing much better but he will never be the same.
Our warning to every one is that high doses of Prednisone can be quite bad for some. I still wonder if the dosage of Cellcept had been higher sooner rather than later could he have gotten off Prednisone sooner? Please discuss it with your Dr. and decide what is right for you. Godspeed. Mary & Rich
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What were his side effects of Prednisone 5mg per day?? TIA
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I’m 75 and 4+ years into my diagnosed MG. Initially I was on 60mg and have fluctuated between 60 and 5 mg depending on my condition. I’ve had 1 mg crisis and 2 flares in 4 years and each time the prednisone levels were increased. It’s been 8 months since my last “minor” flare and I have titrated down to 3.5 mg from 20 mg and holding steady. This time I decreased my dosage 10% increments every 2 weeks and I’m not having any issues. I see my neurologist very soon to figure out my next course of action.
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