Longterm Prednisone Withdrawal

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Martalynn
New Member


Date Joined May 2009
Total Posts : 6
   Posted 5/20/2009 7:43 PM (GMT -6)   
 
I was diagnosed with RA in 1987 and have been on prednisone for 20 years (from 12 down to 5 and am trying to withdraw completely, due to severe hypoglycemia, muscle weakness, extreme fatigue, sweating and shortness of breath. The muscle weakness was found to be a pred. side effect, through a nearologist's test and  a muscle biopsy. It's been gradual over the years and has not been debilitating until recently.
 
1). I was treated for breast cancer (a 9 yr survivor), having undergone 11 surgeries (all benign since the first two), 4 rounds of chemo, radiation and 5 yrs of tamoxifen. I never "bounced back," and have wondered about the reason, ever since. 
 
2). I had two stomach surgeries due to bleeding ulcers which blocked my digestive system (one in '84 and another in '94). I had taken aspirin products for migraines starting in 1977 because I was a single mom with two small sons and needed my teaching job to insure and support them.
 
3). After years of stress caused by my brother's mishandling of my mother's trust (which had begun in late 2003), my mother's slowly deteriorating health, her hospitalizations, nursing home stays, my brother's requests that I handle her paperwork (banking, moving, packing, and cleaning an estate home and her condo), and my battle with RA, I suffered an Addisonian Crisis in 2007, and an "Almost Addisonian Crisis," last Sunday, May 17th.  
 
After the first removal of 1/3rd of my stomach, I was told never to take an aspirin product. Although one darvocet per/day upon awakening kept them at bay and allowed me to teach, my doctors said I was addicted and refused to prescribe pain medication. I had tried cafergot but became seriously ill each time, throwing up strenuously for 24 hours. I felt that I needed my job so badly that I had no other option than to continue the asprin knowing full well that pieces of my stomach would be removed, at great personal cost.
My second stomach surgery was another 1/3rd removed (of what had remained after the first). 
On it went until the combination of Inderal, skelaxin and Imitrex provided enough relief to keep my job and stop the aspirin.
 
I am currently having luck treating RA with Orencia, Methotrexate and 5 mg of Prednisone, but the side effects of pred. have become completely debilitating. I asked my RA Sp. if I could withdraw, and he agreed. Over two months, I managed to get from 5 mg down to 3 per day.
 
 --I am now 67 yrs old and live in a log home with my best friend-husband of 30 years (almost).
 --I've been on gold, plaquenil and enbrel, abandoning them for my current RA treatment.
 --My fingers look like a sailor's knot. My toes cross each other. I don't care about the roundness of my face.
 
But.
I don't know how to get off of prednisone without causing an Addisonian Crisis. 
 --How long will it take for my adrenal glands to begin functioning? 
 --Is this an impossible task?
 --Will my muscles ever be stonger?
 --What are my chances re: body function and successful pred. withdrawal?
 --Has anyone ever experienced the muscle weakness and gone on to strengthen them again?
 --Has anyone ever withdrawn from pred. after 20 years?  HOW?
 
I need some inspiration in a huge way--my life has been a battle zone, but I'll do whatever it takes to spend more time with my husband, my wonderful kids and my dear grandchildren...my reasons for this fight!
 
Any advice would be so appreciated...you could not imagine.
 
Martalynn
 

Kangaroo
Regular Member


Date Joined Jul 2008
Total Posts : 117
   Posted 5/21/2009 5:34 AM (GMT -6)   
 
 
Hi there Martalynn
 
Welcome to the forum
 
Thanks for sharing your health dilemmas. It is with such openness that we can find relief.
I have been told that 5 preg. should not be a worry.5mg is a very mild dose and shouldn't be aything to be alarmed about.
In a healthy person, they would be producing their own pregnosone naturally. With long term use of it artificially, it may be the case that your body has gotten lazy on its own production and relies on it artificially.
 
Also, I recall hearing that our bodies are constantly renewing themselves in such a rate that in 2 years time every cell has been replaced. Amazing! So we have the potential to be rid of a problem in 2 years time........................
 
Positive thoughts also help I am sure of this. When I feel happy, the problem isn't near so big.............Having an interest outside of health is a big help.
 
Exercise will grow those muscles. Use your muscles and they will improve. As the saying goes, use it or lose it. I have found this to be so true. deep water areobics gave me back the muscle strength that was lacking for years.
 
I wonder if calcium and magnesium supplements help in this area. I do find vitamins to help.
 
All the very best to you in your improvement
 
Debbie
 
Hang in there.


DebbieLou

Post Edited (Kangaroo) : 5/21/2009 4:38:12 AM (GMT-6)


Martalynn
New Member


Date Joined May 2009
Total Posts : 6
   Posted 5/21/2009 1:58 PM (GMT -6)   
Thank you Debbie Lou...

Have you experienced the use of pred?

For years I have taken 1 prescription strength Folic Acid daily, 1 multivitamin twice daily, and 600 mg of Calcium w/D twice daily.

4 weeks ago, my Cardiologist found serious deficiencies in Vit. D and B12 (am taking huge doses of supplements to correct, as instructed).

My "innards" are normal (organ function is excellent), and bone density is low-normal.

Except for extreme Hypoglycemia (due to stomach surgeries), RA (22 yrs), Breast and Skin Cancer
(excised and free of malignency for 9 yrs), I'm OK.

My worst problems are related to longterm prednisone use for severe RA...YEARS

The Pros:
--Prednisone has helped me manage pain, deformity and energy (to a degree);
--It has magnificently managed my symptoms;
--Has added great quality of life;
--Added 17 more years to my career (that I wouldn't have had without it).

BUT. Prednisone has created a ballpark full of complex health problems during my "golden years!"

The Cons:
--Addison's Disease;
--Two Addisonian Crises;
--Severe Hypoglycemia;
--Two cataracts w/surgeries;
--Side effects (worst: muscle weakness, extreme perspiration, shortness of breath);
--An agonizing withdrawal which doesn't seem to kickstart my adrenals into functioning normally;

I WANT OFF THIS ROLLER COASTER!

Thank you again!

ten
New Member


Date Joined May 2009
Total Posts : 2
   Posted 5/21/2009 3:05 PM (GMT -6)   
idea    HELLO. . .I HAVE BEEN ON 10 MG PREDNISONE FOR 10 YEARS FOR RHEUMATOID ARTHRITIS.   I JUST READ about LOW DOSE NALTREXONE. . .CHECK IT OUT.  IF I CAN GET OFF THE STEROID I WOULD TAKE THIS IN A FLASH.  HOW DO I GET OFF THE PRED. WITH MINIMAL PROBLEMS AND HOW LONG MIGHT IT TAKE?  I READ TO EAT LOTS OF DHA /OMEGA 3'S AND NATURAL, ORGANIC FOOD, NO SUGAR OR CARBS AND BE VERY STRICT.  I AM SURE THE LDN WILL END THE RA. . .ANY COMMENTS?  THANX.

ten
New Member


Date Joined May 2009
Total Posts : 2
   Posted 5/21/2009 4:42 PM (GMT -6)   
idea  HI AGAIN. . .SAME PERSON FROM EARLIER. . .I JUST WENT TO MY DOC WHO SAID THAT HE BELIEVES EVEN AFTER 10 YR. ON 10 MG PRED. IT IS A "CAN DO" WEANING OFF.
HE SAID TO TAKE AWAY 1/2 MG PER EVERY 3 WEEKS, SLOWLY AND THAT AT 5 MG THE BODY SHOULD BE ABLE TO HELP AND HE'D LET ME TRY LOW DOSE NALTREXONE.  HE SAID HE USES THAT AND IT WORKS FOR MANY PEOPLE, NOT ALL.  BUT IT IS WORTH A TRY.
JUST WANTED TO SHARE MY HOPE.  THANK YOU! yeah

Martalynn
New Member


Date Joined May 2009
Total Posts : 6
   Posted 5/21/2009 7:20 PM (GMT -6)   
I want to thank the good people who answered my call for help...you gave me some hope (and optimism, to boot)!
 
With the help you gave me, I can begin to explore an option or two...I can also  begin to start a "Plan B."
 
Thank you again!
 
Martalynn

Kangaroo
Regular Member


Date Joined Jul 2008
Total Posts : 117
   Posted 5/23/2009 3:07 AM (GMT -6)   
 
 
Hi there,
Yes it would be good to get off the pregnosone because of potential side effects. i have been on it for 12 years in varying doses from 2mgs to 20mgs per day. My doc. has virtually left it up to me to take the most suitable amount. From experience, I have found I can come down from 20mg to 12mg with no problem. It is when I hit 10mgs that i find i have to ween myself off very slowly, ie 1mg a week. it's the 3rd day in I  feel bad and think I need to increase, but if I perserve, day 4 ,5,6,and 7 are OK. Then I am ready to go down another 1mg.
By the way, Martalynn did you read about ostepenia from "stray dog", here is a snippet, I am sure they won't mind me using it......................
 
My best friend was dxd with osteopenia a little over one year ago. Her OB/GYN puts all of his osteopenia patients on 3,000mg of Vitamin D per day for one year, then reduces the dose to 1,000mg a day.  Ladies it will prevent osteoporosis. Her bone density test was repeated one year later and its gone! SHe is 60 yrs old and had a hysterectomy. He has been doing this for years and has been totally successful with it. He is a big believer in naturalpathic medicine to a certain extent. He says the medications for osteoporosis are dangerous and thinks they will eventually be pulled off the market. He will not put any of his patients on the medication. He says the medication stays in the body much longer than what is stated in the litature and not healthy to the rest of the body. Now, I am not saying to stop your medication at all, in fact I am still on mine-but I do take 3,000mg of Vitamin D per day, I need all the help I can get.  It will also help us people that already have the disease, it can stop the progression or put it at a snails pace.
 
 
 
And the way to build up muscle is to use your muscles.
Sounds like you are on a new path of determination.
Keep us posted
 
Deb
DebbieLou


Martalynn
New Member


Date Joined May 2009
Total Posts : 6
   Posted 5/23/2009 12:26 PM (GMT -6)   
Wow! I'm finally receiving some great ideas as well as empathetic helpers who have experience with this stuff! I am so thankful to have found this website--it's a Godsend!

To DebbieLou, my muscles have been derailed for awhile--a side-effect of prednisone; I need two hip replacements (severe pelvic-joint deterioration). My doctors have all advised me not to attempt to strengthen muscles until after the replacement surgeries, but those can't happen till my body Vitamin deficiencies and the Addisonian Crisis have all improved!

Into my late 20's, I walked 8 miles daily. In my 30's I weight trained in a gym, took Aerobics, Yoga and Elaine Powers classes. After that, I ran/walked 6 miles a day till RA hit hard at 45. Even then, I walked 2 mi daily till 2 yrs ago when my muscles gave out and the pain was unbearable. I was advised to quit pushing so hard. Now, here I am at 67...a declining health nut!

I will have the hip replacements as soon as I get my medical team's ok. In the meantime, I will keep working on the pred withdrawal, now that I have some helpful ideas from my "healthline friends" (with my doctors' blessings, of course). I hope that I can then work on muscle strengthening.

I'll never stop strying--"It ain't over till it's over"...right?

Thank you, DebbieLou, ten and Kangaroo! GOD BLESS you, kind people!

Martalynn

Kangaroo
Regular Member


Date Joined Jul 2008
Total Posts : 117
   Posted 5/24/2009 5:34 AM (GMT -6)   
 
 
Way to go Martalynn
 
With you power and determination you are going places.
See you around the tracks
With all your experience, you can share with others.
 
God bless you, too
Love Debbie
DebbieLou


Martalynn
New Member


Date Joined May 2009
Total Posts : 6
   Posted 5/24/2009 9:14 AM (GMT -6)   
Thank you again, "Helpmates,"... I have copied and pasted all your posts into a computer file, so they'll be where I can find them again!

God bless you, once again.

Martalynn

Kangaroo
Regular Member


Date Joined Jul 2008
Total Posts : 117
   Posted 5/27/2010 9:21 AM (GMT -6)   
 
 
Dear  indersonu,
I wish I could help you with the name of the gyno. But I was referring to a post put up by 'Stray dog'. As this was an old post, i wonder if they are contactable.
I would try having some vitamin D, maybe not as much as 3000mg, but 1000mg's and see how you go. I may even  think of doing this myself as i feel as though I am shrinking. In never took the vitamin D any more than was in mulitvitimins myself.
I should be doing more exersise such as stretches in bed, lifting my legs up, also legs up knees bent and lower to right hand side and then to left  hand side.
Thanks for having me look at what I could do to improve my situation. As i have been doing so well< I am not needing  to  try so hard of late to better myself. it is as if i have found i amm happy enough with my improvement, that i haven't been doing as much  to watch my health as before. but i think I will need to take more care, as i am not as good i i could be. So maybe more vitamin d is the answer as well as exersise. i need to motivate myself to do more......
DebbieLou


golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 5/27/2010 10:17 PM (GMT -6)   
Hi guys, stray dog hangs out on the chronic pain forum you could post a question for her there.

I know Jo has successfully come off her prednisone, what do your doctors say about regaining muscle usage etc?

Also my rheumy put me on 1.3g of fish oil a day, this acts as a natural steroid and it may help you while you're coming off the pred. I'm still stuck on it myself. Also on orencia (just started it) How long have you been on it and when did you notice it working for you?

Good luck with the withdrawal, its never easy, I found 1mg per week is the way to go but you go through quite a few weeks of agony until you adjust mentally. Now I'm back on it and have the lovely joyful experience of coming off it again still ahead of me. I had only been on it for 2 years though so can't give more advice.

Let us know how you're going and make sure you're being monitored the whole time by your medical team, golitho

wearyRAsufferer
Veteran Member


Date Joined Mar 2010
Total Posts : 1320
   Posted 5/28/2010 6:56 AM (GMT -6)   
Wow- I just wanted to wish you all the best- you have certainly been thru a lot and are quite the trooper!
I have not been into this very long- just 2 1/2 yrs. so I can't comment about long term pred use. I do know my doctor said he would be comfortable with me taking 5 mgs of pred long term. I did not want to however. Under 12 mgs I do not see a big benefit and had side effects of muscle weakness, stubborn weight, fatigue....I finally weaned off completely and about 2 months later was when I noticed a couple of pounds dropped off, I had more stamina to exercise, etc.... I am very glad I got off altogether. Hope you can too

Kangaroo
Regular Member


Date Joined Jul 2008
Total Posts : 117
   Posted 5/28/2010 7:32 AM (GMT -6)   
 
Hi I was on Preg for 12 years and I have finally got off it and have been off it now for 10 wks. Ya Hoo!
i have been able to come off it because i have had such good results from MabThera (rituximab).
I started to notice when i took the preg. it made me feel kind of a bit worse after i took it. this became more evident as I stretch the time between each dose. It was by accident that i forgot to take my pregnosone and so the 10mg became 10mg every 2nd day. I them stretched it to 10mg every 2 and a half days. A week later I stretched it to 10mg every 3 days, a week after that, 10mg every 4 days., then every 5 days. I noticed when I took the pregnosone, I didn't get the boost i expected. In actual fact i felt worst the days following the pred. I then lowered the dose to 9mg every 5 days, then 8mgs every 5 days, then 7mg ....and worked my way down to zero and feel none the worst for it. I am happy to be off it. Now I  have to be determined to do my stretches in bed, as I have gotten out of this good habit, I just don't think of doing them any more, whereas before i was always doing them. it was a good habit to do leg stretches and strong arm curls.
I hope this info helps someone
 
Love Debbie 
DebbieLou


Kangaroo
Regular Member


Date Joined Jul 2008
Total Posts : 117
   Posted 5/29/2010 6:13 AM (GMT -6)   
Yep, I should remember to take my calcium pills.
Thanks for reminding me about them

Debbie
DebbieLou


Martalynn
New Member


Date Joined May 2009
Total Posts : 6
   Posted 6/3/2010 10:25 AM (GMT -6)   
I'm responding to several posts in healingwell.com...my osteopenia was reversed after taking Fosamax (I am now off of it). I am also taking 2000IU of Vitamin D, twice daily (I had been deficient in D but am now nowmal). I also try to get 15 minutes of sun every day.

The muscle weakness continues to get worse, and I continue to try withdrawing from prednisone. When I experience an RA flare, I have to bump it up again to reduce the chances of disfurement (my hands and feet are already pretty bad); so then, I begin to withdraw all over again!

I've been on Orencia for over a year but have seen no improvement. My RA Specialist is closing his practice, so I will begin with a new doctor and hopefully, a new "wonder" drug.

Martalynn

golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 6/3/2010 9:07 PM (GMT -6)   
Hi Martalynn, I've just started on orencia and have an odd good day and then seem to be back where I started? Did you ever get some good days? I can only think of it positively? golitho

sindu
New Member


Date Joined Jan 2011
Total Posts : 1
   Posted 2/27/2011 6:50 AM (GMT -6)   
Hi,

Thanks for the info. i am living with RA since i am 24. i wish to have a baby. i was on preg for 16 years .tapered it and finally got off to it. but i am not sure i have Addison decease or not . i tapered by 5 mg (alternate days)every week . last dose was on Feb 9th. now i have dry skin pain while walking,low blood pressure,crack skin. now i am under remicade. i had 3 infusions . how do I know i have any withdrawal problems. could you please advise which doctor i need to see.

thanks to all

Timgoes
New Member


Date Joined Apr 2012
Total Posts : 1
   Posted 4/12/2012 9:31 AM (GMT -6)   
Hi I am a 54-year-old man. I have been on prednisone for ulcerative colitis for 27 years. Probably averaging about 30 mg for 26 years, do I take the cake?, and now I've been fairly symptom-free for about 15 months and tapered down to 8 mg of prednisone.

The withdrawal symptoms of horrible. My muscles a very pumped up and tired from very little exercise. I put in a full days outdoor yard work a week ago. While doing it I felt terrific but now seven days later my body is still too tired and painful to do much at all. Yesterday I cleaned my mother's house for 1 1/2 hours and then slept for three hours. And then slept through the night.

I read that prednisone can affect your sexuality. First I thought that's not a problem for me. But then I thought the lingerie is getting expensive. Joking.

I also have nerve damage from shingles and have been taking painkillers for the last eight years. Also I've had horrible sciatica but it's not a problem at the moment. I've had three steroid injections in the spine for that and it works miracles. I am told I will need an operation one day.

For the first time in 27 years of painful struggling I think I should go to one of those legal services to apply for disability the most effective way. I felt I was functioning well on 15 mg 14 months ago and since then it's been tapered 8 mg. At the moment I can't see myself working more than six days a month. Any suggestions? I am currently going to the G.I. clinic at Mount Sinai Hospital. Where my resident M.D. is supposedly supervised by the best of the best specialists. She told me there is nothing on the books for how to taper off for someone who has taken so much prednisone for so long like I did.

My three family members are more of an adversity than supportive. They are strangers to themselves and each other. I do have one close friend for the last 19 years. I feel responsible to help all 4 move forward rather than backwards. It is just the type of person I am and if I do not I will also pay a price.

Going on disability is like admitting defeat after a very long battle to try to have something that resembles half a life. Hopefully it will just be temporary. I'm not sure the prednisone is making the additional emotional or if I am just seeing reality of the situation.
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