Steroidal anti-inflammatory drugs
 

Hi all,

A while ago I was required to take prednisolone (a steroidal anti-inflammatory drug) for a short period of time. Surprisingly I found that when taking it my PCS symptoms were all completely removed. They immediately returned when I stopped the drug.

Has anyone had a similar experience?

I suppose it provides evidence that PCS (or at least my version) is caused predominantly by chronic inflammation.

It is a pity that steroidal anti-inflammatory drugs cannot really be taken in the long-term unless for serious and life-threatening conditions.

Does anyone know of any safe anti-inflammatory supplements that can be taken regularly? Ibuprofen and fish oil do not seem to help me.

Thanks as always

Halfnelson

I take Prednisone for bad eczema. Usually 20 mg on alternating days. Seems to have no effect on TBI symptoms.

My fall happened in Feb 2012 and in around March, I started with a horrible all over body rash with awful itching (I posted here about it, as I was convinced and still am, that it was related to my fall) and was on high doses of prednisone several times over the next few months.

As long the the dose was over 40 mgs and the course was longer than a week, I noticed improvements. The best improvements came between 40mgs and 100 mgs during my month long course, I almost felt normal, my headaches were pretty much gone and my fatigue had lifted, I felt like me.

As soon as the tapering dose got below 40mgs, it all started to creep back and of course once the drug was totally out of my system, I was right back where I started. Eventually the rash and itching went away and didn't return.

When I told my rehab doc about my experience, (I didn't get into the program until July and that was about the time my rash and itching was just about over) he said that prednisone will often help temporarily, but isn't a permanent fix or cure.

He admitted he will very occasionally prescribe a short course for his TBI patients if they have a special occasion to get through, like a child's wedding or something, but he cautioned that sometimes prednisone also causes aggression in TBI patients (maybe regular ones too, I don't know?) and can cause things to go horribly awry also.

Now at my appointment yesterday, he prescribed at beta blocker and said if this doesn't work, we *may* have to consider a course of prednisone to see if we can break the headache cycle that I've been experiencing for 1.5 years. I've not had a break in my headaches since that last course of prednisone, over a year ago. Not one single moment.

If you google prednisone and migraine there's a variety of information regarding that. But in my own experience, all my other symptoms went away with the prednisone use also... I honestly felt like me... which does give me hope that somewhere in there, I am still there.

Starr

I've got quite a few to use so I'm going to give it a shot over a 4 week rest period.

I'll be careful too as I know the stuff is addictive to the body and needs to be tapered off.

Hopefully it will be enough to get me out of this hole!

Huh, that's interesting! I had to take prednisone when I had the flu this year, but didn't notice a difference.

However, something my neurologist found interesting - prior to my tbi I was diagnosed with psoriatic arthritis (autoimmune dis-ease) and was on a monthly IV treatment of Remicade (an anti-TNF blocker - think of it working like a mop soaking up cells that cause inflammation) which got rid of my migraines...2 1/2 years of no pain, no aura and I was on this when I had my car accident - I theorized my negative MRI tests were due to this medication. There's a scientist in Israel doing trials on rats to see if it help - so far no human trials, but my gut says it will work. Haven't had the money to afford the treatment since my accident so can't say if it helps the PCS symptoms. Very interesting though!

Just starting prednisone
 

I got a allergic reaction to I think Cymbalta while on holidays. I just got a 50 mg dose for 7 days. I will be interested to see if it has an effect or maybe 7 days is not long enough.

I am also taking an antihistamine for the itching.

I am not 100 percent sure the Cymbalta gave me the reaction so after the prednisone I am going to try the Cymbalta again.

I had a steroid/prednisone shot two weeks ago for a reoccurring ear infection (from pcs)-and I noticed a lot of the brain fog lifted, increased energy, reduced headaches.

It was a lovely week! Then, the new normal returned.

:) Ah well-maybe some research should be done along these lines!

Nice Week
 

Four days on 50 mg of prednisone and I almost have the house cleaned.

I seem to have a lot more energy and my headaches seem better. I have 3 more days to enjoy this....

Enjoy it while it lasts Norma... but be careful about overdoing it.. the crash that happens after the prednisone is done is a brutal one. Trust me on this.

The prednisone will stay in your system for a few days even once you stop taking the pills, but once it clears your system, you may find you are worse than before you started... might be best to force yourself to rest a bit even though you feel good.

I know when I was on prednisone I felt so good I ran around and did so many chores I was behind on and felt so good... to the point that when I ran out and crashed, I actually tried to figure out how to get more, legally or otherwise. :o That's the closest I've ever been to being "addicted" to any drug before.

Just so desperate to feel that good again.
Starr

Prednisone and TBI
 

Hi all,
I was so relieved to find this post. I have had 14 concussions so far in my life (I'm 55 now). My worst TBI was just 2 years ago - I had a tonic clonic seizure while jumping a horse and ended up with major short term memory loss, loss of impulse control, moodiness, anger, depression, suicidal ideation, you name it. After 18 months of pretty good recovery, I realized that I was still feeling "head injured" a lot - headaches, dizziness, confusion, memory loss, etc. I remember way back about 6 years ago I was put on prednisone for poison oak, and it was the best I had felt in a long time (I developed seizure/epilepsy about 8 years ago) while I was on the prednisone, I felt so good, and could tell I wasn't going to have a seizure. I wrote it off as luck. Last week I got stung by a wasp, and the swelling got out of control, so doctors put me on prednisone again. I have no headaches, I have the energy level that I had just 10 years ago, I feel fantastic (maybe a touch manic? or is that just because I can finally function?) My job is very physically demanding - I own a boarding/training facility for horses, so I need to spend lots of time cleaning, mucking, riding, teaching, etc. and the last couple years I just haven't had the energy, when I try to push myself, I just end up having seizures. But, this week on the prednisone, I'm BACK!!!! So does anyone know if we get such a relief because of some minor swelling around the scar tissue areas of our brain? Does anyone know of a safer (maybe prescription) NSAID that works almost as well as prednisone? I get, and accept, the fact that staying on pred. is not a good idea, but I love the huge increase in the quality of my life this week! I feel so good and alive and happy! I know that coming off of this will probably be not fun, but I've sure enjoyed this little break from the day to day pain, frustration, confusion, etc. In fact I just started brain injury rehab, and I'm tempted to ask them to put me through the cognitive tests again, just to see if I perform better when on prednisone, could be one heck of an interesting study.
Would love to hear from anyone, I'm definitely one of those people who lost many friends after the "big one" 2 years ago, and spend most of my time alone now. Good luck to all of you out there! This is a tough road.

Very interesting.

Of course today I feel desperate and am wondering many options.

I have suicidal thoughts taking oral steroids. When I had a shot for bursitis in my shoulder 3-4 years ago it didn't bother me that way. Neither when I had steroid shots for the occipital nerves.

So what is the difference?

I don't remember feeling any clearer during the 4-6 weeks the shots worked for my occipital nerves.

Is there inflammation reducing properties in the drug that SpaceCadet is taking?

I would love a week of freedom but I know the fall would be worse. Having migraines all the time I got used to the pain (not that it was good or I could function). Now that I have 6-12 a month the pain seems much much worse and harder to handle.

Jace

I was on another course of prednisone since my last post, for an allergic reaction to amoxicillin (seems now I'm allergic to it... never was before my injury... coincidence?) but it was a lower dose & shorter course than previously and I did not find that it helped the same way with my symptoms.

I also had cortisone injections for occipital neuralgia but did not notice any improvement systemically with those... actually I didn't notice any improvement locally for the occipital neuralgia either.

I would JUMP at the chance for another higher dose course of prednisone again, just to see if it would work against my 2.5 year long headache... but my doc really really is against it.

Clearly its not HIS head that feels like it has so much pressure that he's tempted to take HIS cordless drill to his head and let some of the pressure out. I *won't* do it... but on more than one occasion, I've had to talk myself out of it.

Starr

Oh STARR,

I have had the drill fantasy too! Head against the wall, and lots others! The steroid shots did not relieve my pain very long. I had each of the nerves burned (ablation) and that has helped 70% on left and 80-90% on right. It was 100% on right but I've been having some pain as of late.

BEST thing I've done. Very worth it. I can't go back to migraines/intense headaches all the time again.

I hope you find relief soon!

Jace