Author Topic: Long-term 5mg/day Prednisone...ADVICE?  (Read 17525 times)

Sleepy In Seattle

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Long-term 5mg/day Prednisone...ADVICE?
« on: April 14, 2013, 06:25:37 PM »
Hi folks! I'd appreciate advice/experiences if you're willing to share....

Long story as short as possible, I have Lupus, Sjs, APS and Raynaud's. Diagnosed (roughly) a couple years ago. I am on Plaquenil (no problems so far) and 20mg/week oral Methotrexate (also no problems).

I feel pretty good most of the time - WAY better than I did before getting treatment - but I have had a couple of courses of Prednisone the last year to deal with some autoimmune hearing loss, and being on the prednisone makes me realize I COULD be doing better.

The main symptoms that I am dealing with at this point are fatigue and mental clarity. When I am on the prednisone, i feel like "the old me" - it is SOOOOO NICE to be clear-headed and have energy to deal with life, and I don't want to go back to being sluggish and foggy! I thought I was at about 85%-90% of normal, but now I am on the pred, I realize that last 15% or so makes a big difference in my quality of life. D@mn that brain fog.... >:(

I don't seem to have any problems with short courses of higher doses of prednisone - I was on 60mg/day for a month about a year ago (then a 2-month taper), and I am on 60mg for two weeks now, 3-week taper to follow. I don't gain weight or lose sleep or get emotional or anything - it just makes me feel great. But I know it's probably rotting my bones and adrenal glands and whatnot.

My Rheum is suggesting I STAY on 5mg/prednisone per day, long-term, in order to try to retain that level of energy and clarity.   ???

I don't know if I want to do that - isn't it bad to be on steroids long-term, even low-dose? What do you guys think? What has been your experience?

Thanks so much - getting the "real world" advice helps me a lot. Hope you're all having a good Spring weekend!!!!  :)
« Last Edit: April 14, 2013, 06:27:44 PM by Sleepy In Seattle »
Sjogren's, Lupus, Raynaud's, APS
Fatigue, Brain Fog, Autoimmune Hearing Loss, joint/muscle pain, dry mouth, clots in retina, etc
GF, "semi-Paleo" diet, Supplements, Plaquenil 400mg/day, Aspirin 325mg/day (for APS), Methotrexate 7mg/2x per week, Prednisone 3.5mg/day

Rose G

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Re: Long-term 5mg/day Prednisone...ADVICE?
« Reply #1 on: April 14, 2013, 06:37:52 PM »
Sleepy, I would like to know about this too.  I am now on a long term treatment of pred for polymyalgia rhuematica.  At 20 now and will get down slowly to lowest dose that keeps away the pain.  It is all very experimental, but lowest is best.  I was told it will be 9 months to a year or more (have read as much as 2-7 years YIKES).  5 seems to be where we hope to be, so it would be the same as you.  I will watch your post for replys too!  Hopefully some info for both of us!
SS, gastroparesis, Lisonopril, protonix, multivitamin, calcium with D3, ambien cr.

gurs

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Re: Long-term 5mg/day Prednisone...ADVICE?
« Reply #2 on: April 15, 2013, 04:19:37 AM »
I was on 10mg of prednisone for about 8 years with no side effects from it. Then, about 3 years ago when I got very ill from an IVIG treatment, doc started me on medrol (8mg) and I felt so much better. I was on it for a few months, then noticed my hair thinning and my moon face showing. No weight gain though. We'll, i tried to taper off of the medrol, and just cant. Feel so awful. My bones are horrible..thin skin, possible glaucoma?

anyways, I wouldnt worry about just 5mg of pred..they say over 10mg is when the side effects really creep in.

If it makes you feel that much better and improves your quality of life, would stay on it.

Gursie
52 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements

Linda196

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Re: Long-term 5mg/day Prednisone...ADVICE?
« Reply #3 on: April 15, 2013, 04:47:39 AM »
After treatment with corticosteroids, the adrenal gland may not function as it once did.....it's product is being replaced by the steroids, so it's function decreases. In a perfect world, as the steroid dose decreases, the adrenal function increases (this is the purpose of weaning steroids). If the adrenal function doesn't return to pre treatment levels, the patient is left with symptoms of adrenal fatigue or adrenal failure, and ongoing treatment with steroids is indicated.

Asking for adrenal blood panels may let you know if that is the case, and possibly an endocrinologist can help you decide if continued corticosteroid dosing is appropriate. One clue might be that 5 mg of Prednisone or  4 mg of Medrol daily is approximately equal to the physiologic production of a normal adrenal, and if that is what it takes to maintain your wellbeing, it's possibly because that physiologic dose is missing.

I've been taking a baseline dose of 7.5 mg/day for many years, and if I try to decrease to 5, I get flare symptoms, which indicates to me that I not only need the physiologic dose, but additional for continued inflammation.
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irish

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Re: Long-term 5mg/day Prednisone...ADVICE?
« Reply #4 on: April 15, 2013, 11:36:56 AM »
I a taking 15 mom a day right now because of increased symptoms. However, when I am on my normal dose I take 10 mom every other day and have for about 6+ years. My neuro says that this is a physiological dose that helps but yet has less side effects. Using it every other day seems to be what doc thinks is the best anyway. I didn't have many side effects on it. However, muy blood sugars have been up and I had to take Metformin for a while. Also, I am getting some cataracts but I consider that a small price to pay for feeling better.

I have the same experience as Linda. When I am on the 1o every other day and try to taper off to 5 mom every other day I end up with break through symptoms and pain. Have to make sure that the docs know what they are talking about and not be afraid to ask them questions. Good luck. Irish

Sleepy In Seattle

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Re: Long-term 5mg/day Prednisone...ADVICE?
« Reply #5 on: April 15, 2013, 04:39:15 PM »
THANK YOU ALL SO MUCH!!! I knew you guys would have great advice... ;D

This really helps me make a good decision. I think I will try it for a while, and see how it goes...go for my regular blood work, etc. so we can keep an eye on everything.

To stay sane, I have to think of all these things as TEMPORARY fixes until they come up with better treatment or a cure....I know it's out there, and I have hope we'll get there in the next 10-15 years - hopefully sooner!!!!

In the meantime, I will be extra-sure to eat right, get exercise, take my calcium, and do weight-bearing stuff to try to keep my bones strong. I will also ask about nutritional supplements to keep good adrenal function, and I will ask my doc about the benefits of 5mg/daily vs. 10mg/every-other-day.

Again - you guys are great.  :)
Sjogren's, Lupus, Raynaud's, APS
Fatigue, Brain Fog, Autoimmune Hearing Loss, joint/muscle pain, dry mouth, clots in retina, etc
GF, "semi-Paleo" diet, Supplements, Plaquenil 400mg/day, Aspirin 325mg/day (for APS), Methotrexate 7mg/2x per week, Prednisone 3.5mg/day

penelopeclark

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Re: Long-term 5mg/day Prednisone...ADVICE?
« Reply #6 on: April 17, 2013, 04:14:52 PM »
I noticed that with my recent doses for pneumonia that I have felt better then I have in years! I know exactly what you mean I had energy, could sleep, could think, didn't have flare ups of my other systems and so on. I have to talk to the dr about being on it full time.

My dad was put on prednisone for sarcadises ( I know I spelled that wrong) at age 40.. he stayed on it until he died of cancer when he was 64. the worst side effects was that it made his bones brittle and he would get bruises easily it made his skin thin...

But I have been on ad off it everytime I get a bad cold/pneumonia since age 6 Im 44 and now that my flare ups and signs of sjs are worse I notice when I am on it I feel 100% better so I know exactly what you mean.

Daisy1234

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Re: Long-term 5mg/day Prednisone...ADVICE?
« Reply #7 on: April 17, 2013, 05:20:51 PM »
If you are on long term Prednisone use, you may wish to speak to your drs about being put on Actonel.  I have been on long term heavy dose prednisone and now have osteoporosis in my spine and a hole in my left hip from this drug. 

Pred does wonderful things for sure, but make sure to protect yourself and speak to your dr about whether you might need that and get a bone density scan as well.  I'm now taking actonel - the once a month prescription pill dose works best for me.  Just to mention, I'm in my mid-40's and didn't have any bone density issues prior to the long term pred use.

Best of luck,
Daisy

 

Styx

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Re: Long-term 5mg/day Prednisone...ADVICE?
« Reply #8 on: April 18, 2013, 05:07:39 PM »
I think 5mg is pretty darn close to a physiological dose. You may not need to make any adjustments.

If it helps your symptoms, I'd stick with it. If not, don't.

Styx

irish

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Re: Long-term 5mg/day Prednisone...ADVICE?
« Reply #9 on: April 18, 2013, 09:01:17 PM »
There may be some other drugs that the doc will want to try also. Steroids are, indeed, miracle drugs but if are on them long term we will pay the price. I am on a physiological dose and have some side effects but not as bad as I would have thought. The doctors are learning better ways to treat patients with steroids in the past years. The goal is to not suppress the adrenal glands and to avoid all the side effects. There are a lot of them but not everyone gets all the side effects---thankfully.

Hope that you can get things settled down and feel better. Some people do a taper dose monthly and seem to get along fairly well. Irish