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Thread: Am I Just A Freak?

  1. #1
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    Question Am I Just A Freak?

    I have degenerative disc. Last week, I had an incident where a bulging disc may have herniated. Of course, the doctor wants to try the conservative treatment approach first, which I understand. Unfortunately, this involves ... (insert horror movie tune here, or something) ... STEROIDS. Oral steroids, that is. Unfortunately, I ALWAYS seem to have the WORST reaction to these drugs! I swear, it's like I experience all of the listed side effects and then some. I went along with the plan, because I thought that maybe my body would just magically cooperate. Nope! Three days into the taper and I was a wreck. My mood could only be described as alternating between "sad and/or pissed off" (much to Wife's dismay); I had no appetite, my joint pain worsened in some areas, and I started to get awful muscle aches. I had a cervical disc fusion back in 2007; in that area of my neck, Wife noticed a lot of swelling. I couldn't reach the area too well myself, but I could feel it when she touched it, if that makes sense. On top of all THAT, I was running the worst fever and sweating like crazy; my hair was soaked as though I had taken a shower and my face was flushed. Wife kept bringing me ice/cold packs, and at one point I sat in a cold shower for awhile. To me, it felt like the water was hot, but Wife assured me that it was on the coldest setting. I was miserable and basically felt like I was "melting from the inside."

    The saddest part? These pills were a relatively low dose.

    Luckily, my healthcare network has a 24/7 "on-call RN" for advice and whatnot. We phoned them yesterday and, after discussing it with the on-call physician, I was told to quit taking the steroids (YAY) and they scheduled a visit with my PCP tomorrow morning after making some notes for him regarding the sudden follow-up.

    Am I the only one with degenerative disc/arthritis who just can't tolerate steroids? I can usually handle the injections. I still get some "flare-up" symptoms, but they're usually gone by the second day. Oddly enough, these injections only seem to be effective in certain areas (i.e., bursitis); they've never been helpful for my lower/upper back pain. I just feel incredibly lame because it's like ... even with the smallest doses, my body just freaks out whenever I've tried to take steroid pills and do a taper. I've tried prednisone in the past, and the pack I was given this time was something like methylprednisolone or something.

    I DO have anxiety, so I can understand how the steroids might aggravate that condition, but damn ... I just feel so lame for not being able to tolerate the oral steroids. I always have this bizarre idea that doctors are going to be disappointed/upset with me because of it, too. I have no idea WHY I feel that way, either. I just do.

    Needless to say, I'm feeling much better (back/disc issues aside) since I haven't taken one of those damn pills in about 24 hours. I just wondered if I'm an anomaly or if there are other people with similar conditions who just can't handle these drugs? If so, what are some of the alternative approaches your doctors have taken when treating your condition(s)?

    Guess we'll see what the doctor wants to do now. Still feel pretty lame seeing him again so soon. Sigh.

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    The best piece of advice I can give you is to get a micro discectomy if you are a candidate. That is the only way you're going to get rid of that pain if the disc is touching any part of the nerve.

    I have known at least 6 people with bulging discs and every one of them had success. Considering you are relatively young and in generally good health, you should highly consider finding a good neurosurgeon and get an evaluation. All the steroid injections and pain killers are only going to keep the real problem at bay, and the longer you wait the more difficult the recovery will be.

    Good Luck.

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  4. #4
    @tehloserprince - I get almost all the symptoms you described with steroids. In particular, I have taken to calling the awful facial flushing as "matchstick head".

    I have DDD as well at L4-L5-S1. I am so sorry we have this in common.
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    Quote Originally Posted by Shayna View Post
    @tehloserprince - I get almost all the symptoms you described with steroids. In particular, I have taken to calling the awful facial flushing as "matchstick head".

    I have DDD as well at L4-L5-S1. I am so sorry we have this in common.
    I saw my doctor on Monday morning, and he agreed that I'm just one of those people who can't tolerate steroids. Instead of doing the taper, he recommended that I try taking 1-2 pills each day until they're gone, just to see what kind of benefit I can get out of it. If I can't tolerate that, then just stop the steroids altogether. It's such a pain. I know that my dad has taken oral steroids (mostly prednisone) from time to time, especially when his knee problems flare up, and he seems to tolerate them just fine. I guess I'm just not built for it, or something. "Matchstick head" is an excellent way to describe how I looked/felt.

    I'm sorry that we have it in common, too. I've had a cervical disc fusion and I currently have a bulging (possibly herniated now) disc at the L5-S1. I also have deteriorating joints in my knees. The last few years, my knees were just very "noisy." Over the past year, I've started experiencing more pain in my left knee. I'm only 32, so it sucks. My dad was also diagnosed with DDD in his 30's, though.

    I hope that you have more "good days" and that your pain is tolerable. Thanks for letting me know that I'm not the only one who seems to experience all the worst side effects of oral steroids!
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    Quote Originally Posted by tehloserprince View Post
    I saw my doctor on Monday morning, and he agreed that I'm just one of those people who can't tolerate steroids. Instead of doing the taper, he recommended that I try taking 1-2 pills each day until they're gone, just to see what kind of benefit I can get out of it. If I can't tolerate that, then just stop the steroids altogether. It's such a pain. I know that my dad has taken oral steroids (mostly prednisone) from time to time, especially when his knee problems flare up, and he seems to tolerate them just fine. I guess I'm just not built for it, or something. "Matchstick head" is an excellent way to describe how I looked/felt.




    I'm sorry that we have it in common, too. I've had a cervical disc fusion and I currently have a bulging (possibly herniated now) disc at the L5-S1. I also have deteriorating joints in my knees. The last few years, my knees were just very "noisy." Over the past year, I've started experiencing more pain in my left knee. I'm only 32, so it sucks. My dad was also diagnosed with DDD in his 30's, though.

    I hope that you have more "good days" and that your pain is tolerable. Thanks for letting me know that I'm not the only one who seems to experience all the worst side effects of oral steroids!
    Hi -

    I just saw this post and am sorry I did not see it earlier. Oral steroids are something that must be titrated properly to be effective, especially when used for short term "flare ups". The other thing I would add is while Prenisone is the steroid of choice for many physicians, it also has the highest incidence of bad side effects. Psychiatric symptoms in the form of rapid mood swings tops that list!!

    Your physician should have tried Medrol or even Decadron. Each has unique properties, but all act similarly in reducing inflammation. Medrol is just as effective without making you sad , enraged and on top of the world all in the same day. Decadron is significantly more potent than either Prednisone or Mecrol, but again, would have been worth a shot.

    Regardless, I hope things are improving for you and that your GP has you on the right path.
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    @Watershed65

    I took Prednisone from 2004 until 2013, "9 years" often taking doses of 400 to 500 5 mg pills per year. I got
    them from a AMA Board Certified Dermatologist. I developed Urticaria 708.0, Dermatitis 692.0, and Rosacea.
    My Dermatologist resorted to giving me shots of Cortisone, and/or powerful steroids to clear up my very red
    face and some developing scar tissue from years of itching. He was aware of a new test in April of 2014, I then
    discovered, that I was allergic, to all common types of Hair Dye, as I had been dying my hair, moustache, well....had been paying $125.00 per month for years to my hairdresser since around
    age 50, and that was 12 years in a row. I even had two ER visits over Hives. I immediatey stopped all hair dyes.
    I have the appearance now of "Kenny Rogers" with all silver hair plus a silver beard. Unfortunately, my eye doc
    discovered last year my eye pressure was sky high, and I partially blame my cosmetic hangup, of aging, to my
    high usage of Prednisone. I have a DX of early phases now of Glaucoma. Plus, family members complained the past 5 years of my rage a holic temper and mood swings, and my Dermatologist, told me that is not unusual for
    taking 20 mg a day of Prednisone 75% of the time the past 12 years. Thank God, I gave in to medical advice.
    rather than being hung up on not having one single gray hair, like some aging rock stars in their 40's!!! The liquid drug "Lumigan" is slowing down my early symptoms thus far of Glaucoma.
    Last edited by Delta L1011; 07-09-2015 at 07:15 PM.
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    I have been on Prednisone on and off for years..Short Term Flare-ups, pneumonia, etc. I hate doing that crap. But they do help at times. They can be hit or miss with me..Either I feel like a million bucks or absolutely nothing. I'm usually prescribed the Five Day thing a couple times a year..start at five tabs and work my way down...Last time it did nothing for a flare-up (I still have a couple from that prescription)..why keep doing something if they are doing Nada?...Pneumonia it really helped..along with the double dosed Codeine cough syrup the good doctor hooked me up with...IDK...I just don't trust them..maybe I'm crazy. So hit and miss though. Everybody is different.

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    @Whisperjet727

    Well, silver hair appeals to many and to think that you were unwittingly causing this issue all for a great head of hair! Glaucoma is quite treatable these days-The biggest problem in my experience with glaucoma is patient non-compliance with what is often quite a regimen of eye drops. It's an easy thing to forget. But 20mg a day is really not a lot of prednisone, but the length of time you took it may create some none density issues down the road. I expect your physician is well aware of this and monitoring for any issues.

    Psychiatric issues are far more widespread when using prednisone than other steroids in this class. Aside from my own personal experience, we use a ton of Decadron in Hospice with certain patients dying of lung cancer or COPD and while Decadron is far more potent than Prednisone, I've rarely seen psychiatric side effects from its use in our census.

    But I have serious Sinus issues which normally get really bad, usually in the Spring every year and I call my GP , go in for a shot of Kenalog and go home with an RX for a Medrol Dose Pak. It seems just as effective to me as prednisone, but does not put me on the mental Roller Coaster as I refer to it, as does Prednisone.

    I'm certain you're thrilled to be off that drug. It can be a short term miracle drug, but boy do you pay a price long term in gastro issues and weight gain, edema, farm animal level sweating, etc.
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    Hi

    I was on oral steroids due to lack of cortisol, my endocrologist wanted me off them as soon as possible as apparently if the body gets used to having them artificially the body will stop producing cortisol naturally. I had no idea that you could get side effects from coming of them? are you sure that it is the steroids and not something else going on in your life?

    hope you feel better soon and as long term oral steroid use is bad for you, in a way it is good that you are of them.

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