Longterm Prednisone Withdrawal

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

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!

 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!

 

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

 

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

 

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......

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

Yep, I should remember to take my calcium pills.
Thanks for reminding me about them

Debbie

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

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.