Sometimes I’m a little slow in figuring things out.
Last week I got a headache. Since I’m taking a drug to prevent that, I was a bit miffed. I view it as a contract: I do my part in taking the pills, and the pills are supposed to do their part by working.
The next day I was fine.
The next day I had another headache, plus significant nausea and loss of appetite. I checked my pill box to see if I’d somehow forgotten to take my meds. Nope. Everything was empty.
Things were better the following day.
Sunday was worse, and I spent most of the day sleeping. My awake hours I spent drinking gatorade.
Yesterday I felt perfectly normal (well, RA-normal, anyhow). This morning I woke early and was sick again.
Sick every-other-day? That’s very weird. Then it hit me. I take 10mg prednisone in the morning. In the evening, I’ve been alternating 5 and 2.5 mg. The day after my 5mg dose, I’ve been fine; the days I’ve had headaches or worse are the days after the lower prednisone dose. I can think of no other reason I’d get sick with such a weird pattern.
I’m supposed to spend the next week at the lower dose, so I’m really hoping that my body adjusts quickly. Some days I wish I’d never taken that first tab – but then I recall how I was feeling then, and think it’s been worth it. I can tough out a few days of illness if that’s what it’s going to take to reduce the amount of this stuff I’m taking.
Now I understand why my rheumatologist hesitated to start me on steroids.
***
Disclaimer: everything I’ve read says to phone your doctor if you’re experiencing the adverse symptoms of steroid withdrawal. If you found this post by googling your symptoms, get off the internet and call your doctor I have no idea what you should do; nothing on this site is to be construed as medical advice.
∞ itis 
You are good with medical advice. 🙂
Anyway, don’t be too hard on yourself about the withdrawal symptoms. Autoimmune diseases wreck so much habit on the human body; we cannot even begin to guess what it is causing our symptoms.
I have not taken prednisone for flares yet. I figure I take enough medications for RA and fibro – why add more?
Hopefully, these withdrawal symptoms tamper down soon. Take care.
No medical advice here 😉 I just report on what my doctors have said, and summarize what I’ve read on reputable sites.
I have mixed feelings about adding the prednisone. It definitely made things better, and I’m glad for that. I didn’t realize tapering off after such a short course would be such an issue. Things are looking up already, though, so life’s good. Thanks for coming by.
ah ha, I have been going through the same thing and have been baffled until last night my sis sent me a link on reduced adrenal function. I think pred withdrawal can do this temporarily until your body adjusts. It said to take your blood pressure after laying down for 5 minutes, then stand up and take it immediately. The systolic should be higher upon standing. Mine was lower, suggesting something is screwed up there. Anyway,the article made me link my symptoms to pred. I have the same symptoms, headache in the morning, nausea, blah. I am stepping down and only on 1 mg now. I have done so slowly over 3 weeks. Today I woke up very stiff. This disease is always such a friggin battle!
Down to 1? I’m so impressed!
It didn’t occur to me that people might not know about reduced adrenal function. Maybe that would be a good topic for a separate post. Thank you for the idea.
Yep, those pesky adrenals are usually what causes these problems. I usually start getting symptoms once my taper drops below 15 mg.
I hope the rest of your way down is less bumpy!
Thank you. 15 seems to be my magic number, too. At 15 I do well, at 12.5 my shoulders start acting up again. I’ve been doing my PT exercises, though, in hopes that the shoulders will start behaving and I can be comfortable even without the pred.
I hope your symptoms settle down soon!
I once said I felt like I had a hangover while I was tapering off the steroids. That is funny because I don’t even drink. Each time it only took a couple days to adjust to the new dose so hopefully when you are not alternating your body will catch up and you won’t have the headaches. Good luck!
Thanks 🙂 Today’s my second straight day on 12.5mg, and the headache is mild enough that I was able to work out this morning. I’m feeling pretty positive about today, and the possibility of tapering without my body falling completely apart.
WarmSocks,
Prednisone has been such a constant battle for me. I actually made it off last spring, only to be sucked into another flare. I think if I did not have children still at home I could choose life without it, but the need to function trumps everthing else. I’ve been up to 10 mg this spring. Your description is spot-on. Give your body plenty of time to adjust and hope you are feeling better soon!
TheLadyinPred
(Sherry)
Sherry, I agree. Sometimes it seems worth taking prednisone in order to function, but other times I’m not so sure. Once I manage to get completely off, I don’t know if I’d ever want to take it again.
Withdrawing pred. always gives me migrianes. I have permission from my neuro. to take extra pain meds on those days as needed.
😦 Hopefully you don’t need to taper too often so that’s a rare occurrence!
Prednisone has been a battle for me too. I initally started taking it when I was first diagnosed and waiting to see the Rheumatologist (which took 5 months after the pain started). By the time I saw him, I was on 20 mg a day in order to even be able to barely hobble into his office. After Methotrexate and Humira, I was down to 5 mg 2 weeks ago! Yipee! Then I tried to go down to 2.5 mg and the withdrawal symptoms started….exhaustion, emotional, migraines, and a weird rash. I went back to 5 mg and it all went away.
Then I got a sinus infection, had to to go off the Humira and start antibiotics and have since had a major flare. Back to 25 mg for a bit, unfortuantely. But hey, I’ll take that temporarily so I can walk. As long as its just temporary as I HATE the side effects.
I’m so impressed that you made it to 5mg!
It’s interesting to find the right balance of benefit vs. risk — doctors are trained to do it with all medications. Somehow, I think patients see it more clearly with something like prednisone where it’s so incredibly obvious to us.
Good luck with no more infections on Humira so you can taper back off the pred! 🙂
I am struggling to get off prednisone before I die. I have eye melanoma spread to my liver and possibly my thigh. I had new drug ipilimumab this gave me autoimmune hepatitis in Sept 10. Been on prednisone 40-60mg daily till Feb 2011. Since then been tapering. Just failed at 20 alternating down to 2.5mg. Became sick diarrhoea headache sleepy week etc. Hepatitis started again too. Now better back on 20 will start reducing again slower. I did 5 a week on teh alternate day till 5m then went 2.5mg but it was too fast. Fed up.
Lesley, that sounds awful. Sending you many cyber hugs. The two words “fed up” convey quite well what this can be like.
I posted a little of my taper as a reply to your other comment, and will do a new post in the future.
Good luck getting off this medication – let me know how it’s going.
This time I plan to take a steady daily dose and reduce to 15 12.5 10 7.5 5 4 3 2 1. Any other suggestions?
Your doctor should have a taper plan. Pharmacists are also good resources. That said, here’s what I’ve done:
I alternated days: 15 – 12.5 – 15 – 12.5 – 15 – 12.5, which gave me a horrible headache but with the help of lots of tylenol I made it through and adjusted. Once the alternating dose had gone on for a week, I stayed at 12.5 before going lower. In general, I alternate days of the dose I’ve adjusted to with the lower dose for 4-6 days, then stay at the new lower dose for a week. I’m supposed to be doing well at the lower dose before tapering lower.
For me, reducing below 12.5 was horrible. Not just headaches, but nausea and vomitting, complete lack of appetite… I also get extrememly hot and turn bright red – that’s an interesting thing to experience! I was told to go slower – either cut my 5mg tabs in 4 instead of in half, or get smaller pills. Slower seems to be the ticket. I’m planning another post with more info on withdrawal symptoms and tapering options, but want to get lower first. It’s one thing to read about it, and quite another to experience it!
Oh i m lucky really. In the UK they generally do not treat patients once it has gone outside of the eye. I am lucky treatments have given me too wonderful well years including NYC marathon! (4hrs 11mins age 50!)I have had so many last colarado ski trips I have lost count!
I am a doctor and I was supported by the Lance Armstrong Foundation which helped me to battle with my docs. My current oncologist is fab but 200 miles away and goes to a lot of confereces I do not like troubling him when he s away and I think there is not a lot of science in this withdrawal. I think his plan was too fast. But he will have a plan for me I will see him again 11 May. Hes been awesome made me feel human again and not just cancer.
Oh Lesley, what a trooper you are! Wishing you the best with all of this! So you weren’t on prednisone until the autoimmune hep? No other autoimmune issues? I guess docs just don’t know unless they’ve been on it themselves for longer than a quick taper pack. It truly seems to affect everyone so differently, so really listen to your body. But I guess you’re already aware of that! I suppose it’s a question of how fast you need to get off of it due to any other side effects or potential side effects. I’ve been tapering, gosh, for probably at least a year if not longer. I don’t do an alternate day taper down though. I’ve been careful to taper by ever smaller percentage decreases as much as possible and am down to 2mgs. I’ve had some flare ups going from 2.5 mgs down to 2 and so am going to sit here for a while before going down more. I take 4 weeks or more between taper down amounts depending on how well I’ve been doing at the newest dose. Some folks can do it quicker though. I haven’t seen anything literature on the alternating high-low doses, so don’t know how much science is for that and how well it works for various autoimmune patients with different diseases.
Hi Itis,
I am fairly recently diagnosed with Severe RA one year ago. I appreciated finding your blog today and your perspective; your blog is very educational. Today I read your post about Prednisone headaches from decreasing dosages; it confirmed my suspiscion of my own headache a couple of days ago since I recently decreased my Prednisone dosage. I’m on day 5 of the lower dose and I’m doing much better than I did the last time I lowered the dose.
Your farm looks wonderful! My hope is to have a farm too with Border Leicester sheep for spinning wool someday. At this point in my RA journey, farming may be a bit too grand of an endeavor, as I have never spun wool nor raised sheep, so it’s just a dream at this point. I am involved in a lot of volunteer and creative pursuits, including heavily involved in a RA Awareness campaign last month and look forward to getting to know others in the RA community. I am an artist/writer/PR/Communications professional and also blog anonymously, mainly to protect my employed/insured status. 🙂 I telecommute 100%.
Thanks and have a great day! Look forward to hearing more! I would appreciate any info. on spinning/farming too. 🙂 Thanks!
Thrive With RA
Welcome. I’m sorry to hear about your diagnosis. I love your blog’s name (one of the posts I have sitting in my draft folder is titled Thriving vs Surviving)
It’s good to hear that you’re adjusting to your lower prednisone dose 🙂 Who knew it could be such a challenge to STOP taking a med!
A
littlelot of rambling about sheep & spinning: Some people keep their sheep coated all the time – it keeps their wool cleaner than if they go naked which leads to burrs and blackberry vines tangled in the fiber. If you coat them, you need a number of different sizes of coats; put a new one on every week as the wool grows. I’ve never done that. When I’ve had sheep I let them go naked and tried to keep the pasture reasonably clean so there wasn’t too much vegetable matter in the wool. I had two Jacob sheep for a while, then I had two merinos. Merinos don’t do well in a wet climate, so I won’t get that kind again. I liked the Jacob sheep, though. The term “virgin wool” doesn’t have anything to do with the sheep’s sex life; it means that the sheep hasn’t been pregnant (lots of virgin wool comes from male sheep for that reason); pregnancy hormones cause as many issues with sheep’s hair as it does with people’s, so if you’re wanting to sell fiber, you don’t want pregnant sheep. If it’s just for your personal use, the choice is up to you. I, personally, can’t tell enough difference for it to matter. Before you get a place set up for sheep, you might enjoy reading about intensive rotational grazing. I know people who do it, and it’s a great method (unfortunately, at this point my better half is unwilling to try something so different, so I don’t get to try it on our cows). Some zoos who have sheep need volunteers to card wool; in exchange they’ll teach those volunteers to spin. You might look into that if there’s a zoo in your area. If there are any spinning guilds in your area, you’d be able to locate a one-on-one teacher that way (maybe check with Spin-Off magazine for guild locations). Pioneer farms often have demonstrations of pioneer skills, so they might know of spinners. Your state 4H office would know if there are any 4H fiber craft groups. Also try the state fair; I’ve demonstrated there before. It’s lots of fun; I had a friend who would take supplies specifically for helping people who wanted to give it a try… My wheels are Louets – a tower/castle style spinning wheel; I think they’re easier to spin on than the “traditional” appearing wheels. My next wheel will have a double-treadle, and I highly recommend that feature. Enough for now! We don’t have a huge farm, just enough land to feel like we’re out of the city. Much nicer than when we lived in Seattle 🙂Just an update on me and my prednisolone withdrawl-
Well I tried again and got down to 12.5mg daily split in 2 doses 10 am 2.5 at 3pm. Started to get headaches a couple of hours before sterods due dizzy if stood up quick ot or too long. Liver enzymes rose rapidly not sure whether it was immune hepatitis radiation hepatitis or what. Cancer progresssion seemed unlikey as I had small amount of cancer in liver and that has had radiation. Put steroids up to 15mg
rested a lot and put loads of wt on!
Good news liver enzymes have plummeted only one raised above normal now and that is falling. So next problem is what is going on is it safe for me to switch to hydro cortisone instead of prednisolone or do i stil need the prednisolone for the liver. Oncolgist wants scans and ill decide he was thinking liver biopsy but now its functioning normally I think he will shy away from that..
Has anyone change to hydrocoortisone when they are steroid dependent but dont need them for disease control- do you loose the round face and fat belly
I am incredibly lucky I am so well and pain free 2 + years after my eye cancer spread to my liver most die in 6-12 mths with liver bone mets pain etc
Carpe diem
Lesley
Thanks Itis/Warm Socks for this wealth of information! Pardon my “greenness” with sheepdom, but when you speak of “coats,” are you referring to actual outerwear for sheep like a dog would wear? 🙂 I think I’d be more like you with them roaming without a coat. I can’t close my hands all the way since Dec. 2010 (I have a 2-3″ gap between my fingertips and the palms of my hands, depending on the day), but I can still touch each of my fingertips to my thumb on both hands, so I’m hoping that’s all I need to spin.
I misspoke about my RA diagnosis — I had onset May 2010 and diagnosis Dec. 2010 — so I’ve only known about having Severe RA for only 6 months, not 1 year, as it may have appeared by my previous comment. I’ve also only very recently experienced some progress in moving towards getting the RA under control since April 2011, so everything is still quite new for a lot of things, including blogging only since March 2011 (although I’ve produced many articles — up to 55 now I think) and checking out other blogs starting this month, now that Rheumatoid Arthritis Awareness month is over.
I appreciate your perspective on your blog — very medically-focused, which is great. I have a lot of polls on my blog in search of finding commonalities between RA patients. One thing I’ve learned and always say since this life of RA is that the only thing consistent about this disease is its inconsistency – in its onset, severity, and response to therapies. Despite these inconsistencies, I am convinced there have to be some similarities we all share if we ask the right questions. It would be great to have some additional poll feedback. 🙂
Thanks again for the info.!
Thrive With RA
Yes, some wool farmers really put coats on sheep. They’re very similar to doggie coats.
Yes, if you can touch fingertips to thumbs you should be able to spin. As treatment kicks in, hopefully you’ll be able to make fists again someday – my hands do well enough that I’m able to play my guitar 🙂 (as long as my shoulders are okay).
I took a quick look at your blog, and will try to look at the polls, too. Still very swamped with life right now, thus my absense of posts recently.
I agree with you that there must be some common threads that could be found, if only the right questions were asked. Part of the problem with comparing all RA patients is that some people with an RA diagnosis really have different autoimmune diseases (my opinion, based on what I’ve read and things people have shared with me). When doctors say, “It doesn’t really matter which disease you have because they’re all treated the same way,” or when they call everything RA because insurance will pay for the meds if the diagnosis is RA, but won’t pay for the exact same meds (even though we know they work) if the diagnosis is a different/similar autoimmune disease – well, that makes it pretty hard for researchers to find the commonalities when the data is actually for multiple diseases.
Hang in there!