Finally off prednisone! ...but not so sure I'm ready

General
1

Hey everyone!
Since being diagnosed with SLE last summer, I was on a low dose of prednisone. Starting at 10mgs a day. I tapered off it, starting with just 5mgs a day then to 2.5mg now I’m off it all together. As happy as I am knowing my hydroxychloroquine is working, I’m experiencing some symptoms which I believe are withdrawles from no prednisone. I am extremely fatigued and I’m starting to get sore in my hands and oddly enough my shoulder blades. My dr gave me extra prednisone in case I need it. Although I am frustrated and in slight pain, I’m not sure when it’s time to take more if need be. I have heard stories from my dr of patients abusing the prednisone and I know that’s it’s no good for you anyhow. I’m just frustrated. I had a few great weeks while tappering off prednisone where I was quite active. But I found now that I’m off it I have no energy whatsoever and it’s really taking a toll on my social life and mainly my work life. I constantly feel like I’m in a braindead fog with no energy. I’m going to be 25 in two weeks so as you can imagine this is extremely depressing for a young person. I also just got a promotion at work and I feel as if I’m not capable of handing the postion with what I’m going through. I have also researched and found some lupus patients who were put on ADD meds for the fatigue and brain fog. I’m determines to not give up and to still work. If anyone has any advice id greatly appreciate it.

Thank you & God Bless.

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I found that coming off there is a several week period of time where symptoms will surface- I just rode it out and they would fade over time For the pain I took Nsaids. If the symptoms continue after several weeks then maybe you need to stay on a minimal dose 2.5 mg a day has virtually no side effects and many of us need just that little bit to prevent a flare.

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Hi I am on 2 mgs. of prednisone I will be tapering off in the next couple of months. I am concerned about a flare. I have found coffee helps with brainfog. I drink about 4 oz. a day I have anxiety so I can not drink a lot. It does help though.
I hope your body adjusts to no prednisone :slight_smile:

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I don’t know anyone and have never heard of anyone “abusing” prednisone. No one likes pred, it makes you fat and grouchy! The symptoms you describe sound like lupus symptoms, not “withdrawal”. My doctor started me on 40 mg and gradually tapered me down, but so far I cannot go below 4 mg without feeling horrible and having my liver enzymes rise (I have autoimmune hepatitis too, among other things). It’s very common to have to stay on a low dose for many years, if not permanently. Sounds like you may be in too big a rush to quit pred. Please talk to your doctor about it.

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Turn to food for energy, Almonds, apples, oranges, bananas, carrots, ect.... I know its not good for you, but a little coffee in the afternoon helps me. I am off and on with the prednisone. I have a prescription for 20 mg a day. I take it when I need then I tapper off of it. I gave up on working and miss it so much. I know its hard, but don't give up.

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Hi Jennifer,
I’m right there with you! I’ve been on pred since October and am finally successfully weaning off after 3 failed attempts. Right now I’m on 2.5 every other day an only have some mild pain in my shins and ankles. None of the arm and hand pain and swollen hands has come back this time. I also have the exhaustion and brain fog and take Aleve, Tylenol and Advil for the pains. I haven’t found anything that helps the fog, and I’m still sleeping too much.

I did have to switch to a less stressful job that is fewer hours than I used to work. I just knew I couldn’t do my old job the way I am now.

Regarding tapering off pred, both my rheumies said tapering off very gradually is critical or you can cause bone necrosis as a side effect! Where they differed is that one said it was okay for me to up the dose when my symptoms flare, but the other said that’s too risky with pred. She wants the Plaquenil to work by itself. If it won’t, she wants to switch me to methotrexate so I’m glad the Plaquenil seems to be working.

Good luck and don’t overdo it at work!
Nikki

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Also, I think it’s important to find that fine line between remaining as active as possible without overdoing it and causing a flare. I had to push myself to get active again and I think it has maybe helped me feel better.

I have a young friend, a little older than you, who has had lupus for years and still works full time. So, it can be done! I think everyone needs to figure out what their own limits are and arrange your life accordingly.

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Getting off prednisone can be tricky! I've found that out of all my medications, prednsione works the best and the fastest but of course it's not usually recommended for long periods of time. I've been on it for the past 3 years from doses as high as 40mg a day and I've gone down to 1mg a day but can't seem to totally get off of it. I'm 23 years old so I totally understand how frustrating it is to be young and want to have fun but you don't have the energy or you don't want to exert yourself and make it worse. I'd keep an eye on how you are feeling and if you think it's not going away, talk to your doctor. Don't wait too long because then you risk a bigger flare. You might need to go on some prednsione and at the same time find another medication that allows your symptoms to go away without the prednsione. Good luck!

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I am one who has taken ADHD meds. I acctually took them before I knew I was sick, and took a very low dose,5mg a day. In someways I feel they may have led to the flare that brought me to the point of being diagnosed, because it was very easy to over do it. The meds masked my fatigue. When I finally stopped taking them the fatigue hit me like a semi. I thought it was a withdraw side effect, but here I am two years later extremely fatigued. Sometimes I am tempted to take them again because I do have ADD (or maybe it had been brain fog all along) and they help me to focus and complet tasks…but I do not want to take any more medications than I need and am still wary of anything that might mask another symptom. If I was working, it would be a different story, I would have to go back on them to get the job done.
I will add; this is just my observation, my doctor assured me many times the medicine had no effect on my illness.

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My Dr. tapered me from 60 mg as I was in a Bad Flare at the time moon face red deep cheeks chapped sores all over and could not even lift my head off my pillow I was taken to the hospital I was there 3 weeks until they could get the flarte in check I have had Lupus SEL in all my tissues now the arthiritis is so bad I have to have a forth surgery as I have had 5 vertabraes in my back and am filled with Arthiritis (sp) they are going to scrape the left side of my spinal cord and they have to scrape my spine where all the good things come out as it is closing more year by year! They are going to put titanium screws in! I have already have had two Kyoplast surgeries where when the vertabrae in your back brake you are in so much pain over time I had no choice they put a ballon on the end of a needle to raise the veertabrae than they put some type of a cement in between to raise the vertabraes! it was successful free of pain walked to the car the next morning 24 hours . Now I have the new surgery coming up because over the years on so much prednisone even though I finally was able to start dropping the amount from 60 over a few months than sometimes back up but now I am down to 4 mgs a day! Yes it helps your energy you feel like an ever running battery! But as you come down off the high mgs it whips your energy out it took me about a year to adjust to the four mgs. The reason your Dr. wants you off is it is a wonder medicine but on the other hand it does destroy the bone in the end makes it very brittle like arthritis

So call your Dr. do as they sayn listen to your body Good Luck in the future!

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I was just given a small short course to clear up a really nasty rash, 15mg, 10mg, then 5 every other day now its 2mg per day, what occurred to me is while I seldom ever use prednisone every time I've had to be on even for a short time, it really messes with my emotions, I seem to get more irritable and definitely more depressed this last round was the first time I had to be on it in over a year and without other meds, is it possible it also causes some emotional issues too?

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Hello there! Just finished tapering off my prednisone last May after years of treatment. It was my second attempt to get rid of it. The first one was a nightmare because of many symptoms like feeling nauseous all the time, loss of appetite, joint pains and brain fog. I read that vitamin d could worsen the withdrawal effects so i stopped taking my vitamin d for as long as i was still feeling unwell from tapering. I think it is effective in terms of overcoming nausea and severe head aches. I have a very stressful office job and i needed to be strong so i make sure i watch my diet and have a regular exercise and plenty of rest and sleep. And I also drink a lot of fresh ginger tea. It does help if Im feeling nauseous or bloated and it is a great anti inflammatory drink :). Great remedy for my joint pains based on my personal experience.

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Every experience is different, so I can only share from mine. I had acute systemic lupus nephritis in 2011. The first year was cyotoxin treatments and up to 40mg medrol. I tapered it within a year down to 4mg, partially on my own. Then I struggled for a year to get below the 4mg, but always got sick. By fall of 2013 I made another attempt. My vision started getting blurry, fatigued, aches and eyes almost swollen shut. I determined that it was the house I was living in (most likely mold) and moved out. Everything disappeared, I began the taper and 21days without sugar from October till June now.

I got down to 2mg by January and then started a taper in March of taking a day of 2mg away every 2 weeks.

As of June I've been without steroids. I'm still on plaquenil and cellcept (possibly off by December).

Some of the key things I did

1. Prayer and lots of people praying.

2. No artificial sugar 21 days, since last October each month.

3. Rest as I could. Not packing my days with a lot. From November-March I didn't have a choice because of snowplowing. But this was the healthiest winter I've ever had.

4. Moving in with my folks. Much of cleaning and cooking being taken care of has been a huge weight off. Also the social element has prob done some good. Financially a lot of the weight is being lifted since I'm not accumulating debt anymore and getting it down.

5. I fully expected to have days I needed to be in bed as I was weening and explained to my folks what was about to take place.

6. The adrenals can get fatigued on coffee and they are just waking up when you are weening steroids. So water is soooo key, we so often overlook. I pack a little cooler in my car everyday with waterbottles anywhere I go, so no excuse.

7. I got a promotion in the fall that has reduced so much of the stress workwise and also lets me be more in control of my exposure to sun.

8. Never understimate the power of sleep. You need it and have to remind yourself its just as important as exercise.

9. I'm up to 5ks now in walking running. I set small goals, like 20 minutes walking 2 x a week in March. That was after a whole winter of not walking, but I got a work out with all the snowplowing I did.

Hope there's some useful things in there. Sleep, eliminating sugar and your water intake is a huge key that many aren't willing to put the discipline to.

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Wanted to add an article that talks about raw foods, the more I've intigrated it into my diet, the better I've been overall.

http://www.youngandraw.com/9-natural-pain-killer-that-actually-work/

greensurfer said:

Every experience is different, ....