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Ode to Prednisone

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Posted 11/2/2006 6:12 PM (GMT 0)
well i havent been addressing what i have been feeling increasingly everyday......pain. devil

i really wanted the mtx  skull to be my solution but i now think it has been the devil prednisone  devil all along!

 

i stopped the pred. 11 days ago and today i am home from work with my feet hardly walking, my hands and wrists unable to hardly grasp and in constant pain. knees stinging etc.  plus the cough thingy, ugh.   yes i felt everyday myself getting worse but thought it was withdrawl or mind over matter? ,NOT.

 

so i been home frustrated and thinking how i was led to believe the mtx was my cure-all, but it really was the prednisone, and i am back on it!  each day was getting a little tougher and i didnt want to think that it was happening, but today "I QUIT"

 

not to discourage others this is just my plight that i kept denying til frankly I can hardly walk today.  i am certain MTX works for others!

 

so here is my  devil   Ode to prednisone devil as i need to put laughter back on my menu!

 

 

P is for the pain free days you gave me!

R is for the relief I took for granted!

E is for every pain you masked!

D is for the Dang good way you made me feel!

N is for nothing that has compared!

I is for "me" wanting it all to go away!

S is for some other thing to help us.

O is for the non-Obvious pain we hide from others.

N is for Not wanting to take this med forever.

E is for everything I forgot to mention !

 

No pity Parties needed, unfortunately you are all familiar in one way or another with this. 

 

 i didnt want to share the mtx wasnt working alone as well at first cuz i thought it would get better, not worse.  But for me ............. i guess it is not!

 

Posted 11/2/2006 11:35 PM (GMT 0)
{{{{{{{{{{{ hugs }}}}}}}}}}}}}}

yalinda i'm so sorry. sad boy does this suck huh?  well, we all know that pred "masks" everything...so i feel for ya, and i'm sure many others do as well who have been down this road.

you know, the MTX may be working for you, but just not GOOD ENOUGH.  and of course the steroids fix everything because what we've got is inflammatory pain! and pred makes THAT go away. oy! eyes right?  stinks that the pred doesn't "help" the actual disease.

i told my rheummy this too.  i said, "once i start to come off of the pred everything gets worse."  he knows this & agrees. he has me do some whacky schedule. 20mg then none the next day...then 10 the 3rd day, then 20 the 4th day...then NONE the 5th day...and so on.  his thoughts are to wean down, but give a "jump" every other day so the terrible joint pain doesn't come.

and why am i on Remicade? cuz the GI dude says we have to get me off of pred.

did you ever discuss Imuran with the rheummy?

love your song. :-)

Posted 11/3/2006 12:33 AM (GMT 0)
now truth be told if you remember my earlier posts last year, i am in denial so imake everything good! 

 

i did tell my rhuemmy yesterday when he phoned me that something else had to be done and he said i had options he would discuss with me next visit.  he is a great guy and phones me always the same day so i know i am lucky that way. 

 

anyway i am not trying to get down on mtx or myself, just venting and wishing this all away.  like everyone else!    well going back to relax taking more pred to get throughthe night asi am still building my levels back up.  gosh i wish i was off this "fat mama" stuff!

 

thanks for letting me vent hugs to everyone! yalinda 

ps my neighbor noted my voice and cough were already better withjust 3 doses of pred.

Posted 11/3/2006 12:34 AM (GMT 0)
Hang in there yalinda.....
Posted 11/3/2006 7:33 PM (GMT 0)

I hear you about the prednisone Yalinda!  I don't know if you've ever tried this, but my rheumy swears it works, and I know it works for me.  Combine the mtx with a biologic.  Have you ever been on any of the biologics?  MTX with enbrel, specifically, seems to be a great combo (and the one that has worked for me); works much better than either enbrel or mtx alone. 

Elcamino

Posted 11/3/2006 10:58 PM (GMT 0)
Yalinda,
I had the same thing happen to me when trying to stop taking prednisone altogether.....kept getting worse each day until I could barely move.....could barely get out of bed...had to start back up on it again.....I am now down to 3/4 of a 5 mg pill and can't seem to go any lower without starting a major flare...I would like to take more and get more relief because I am hurting badly with PsA, but I am trying to get by on as little as possible as recommended by rheumy..I've been on it now almost a year....the slightest amount of it makes a big difference with me...not sure what will happen when I start taking Humira? I guess I will be finding out when that day comes.
Feel better,

Jonathon
Posted 11/4/2006 12:13 PM (GMT 0)
hi jonathon, i hear your pain..... i too so badly want to get of the drug, but cant deny the pain without it. are you going to start humira soon? i phone my rhuemmy next week and see him in dec if not sooner and like elcamino sugests i am going to ask for another supplimental drug to go with mtx. i dont want to sty on prednisone, but right now cannot live without it! and i mean live. this morning i was able to for the first time in a week take each step by itself going down my stairs, something taken for granted. soing better each day and my coughis still here but not as consistant, still major fit when it occurs but not as frequent.

i wish you the best jonathan and keep in touch, thanks for the validation as i am exactly the same. yalinda
Posted 11/4/2006 5:36 PM (GMT 0)
Hi Yalinda,
Thanks for posting back. I hope you are having a good morning. I sure can relate to how you feel about the prednisone...yep it is just the same with me...I want to be off of it really badly but just can't because when I stop or cut back too much I can't function and it gets bad day by day real fast....the pain is just too intense. Last nite in fact my pain level was getting real bad so I increased to a 5 mg pill instead of 3/4 of a pill......already I notice a difference and am feeling better this morning than I did yesterday at this time. So thats just a quarter of a pill and it really changes the way I feel already....its amazing.
That sounds like a very good idea to ask your rheumy about another supplimental drug you can take that will work for you. I hope you find just the right combination so you get relief!
I am having a kind of hard time convincing myself 100% on trying the Humira but I will probably be starting it in January when my next scheduled Rheumy appt takes place. He wanted me to start on it on my last appt but I just couldn't make the decision to do it....side effects & all etc. being the concern....but I am so tired of dealing with the constant pain, you know how that can be. It has a way of just wearing you down after awhile.....so I will probably agree to start in January and just hope that it does something positive.
I'm really glad to hear you are able to start using the stairs again....even going slowly is a major improvement....thats great! It will get better.
Thank goodness we at least have the prednisone until we find what will work for us to keep us going and feeling ok.
I hope you have a much better day and keep feeling better all the time!

Jonathon
Posted 11/4/2006 11:37 PM (GMT 0)
hi jonathan,
i understand that half pill just a bit more pred reaction. i am the same way. when i was decreasing my pred a few months ago i physically could tell the difference in the doses, but then i think i adjusted to pain levels and kept decreasing. i am taking 10mg right now 5 am 5 pm and doing better. my cough is still not right though, better but not right. been coughing all evening so i dont know whats still up with that? i hoped the prednisone would also remove my cough from existence. just before going on line i had a spell and my sweet teenaged daughter said "glad to hear your doing better", thats cause eveytime she asks me how i am doing i say "Better" hehehehehe well i g2g and watch my sabres win a hockey game again tonight!
yalinda

"Go Sabres!"
Posted 11/5/2006 2:47 AM (GMT 0)
Hi Yalinda,
Gee I'm so sorry to hear your cough is still hanging on....there are so many allergens in the air at this time of year. I'm not sure if prednisone works on coughs, I sure hope it does tho...and maybe it just takes a little longer to get it stopped....seems like coughs get worse at nite for some reason too.....like this PsA...around 6 p.m. every nite I feel worse...but nothing is worse than first thing in the morning.....good grief it can be bad if not on enough pred. One thing I do know that works for coughs is hydrocodone cough syrup, if you can get your dr. to prescribe it, it works wonders....stops it right away. I hope your cough disappears real soon. I just took my other 1/2 of pred for the evening and will keep it at 1/2 in the morning and 1/2 at nite for now since I am feeling a bit better and every little bit helps when it comes to feeling better right?! I try to stay positive about it all as much as possible, which can be tough in itself.
Enjoy your hockey game and catch ya later here :-)
Jonathon
Posted 11/5/2006 3:04 AM (GMT 0)
Hi Jonathon! You mentioned that you were a bit nervous about trying humira because of side effects? I believe the side effects from prednisone (which everyone gets according to my rheumy) are way worse than the side effects from humira. Give it a try it your doctor wants you to--it's a miracle drug for many without the horrible side effects of long term prednisone.

Keep going Yalinda--ask about enbrel 'cause that is normally prescribed with mtx, although I suppose any of them might work.

Elcamino
Posted 11/5/2006 3:23 PM (GMT 0)
el, u r the best! when i am down u pick me up. enbrel i am gonna read up on it! thanks yalin
Posted 11/5/2006 4:40 PM (GMT 0)
Hi Elcamino,
Thanks for posting...you are very right about that....its just getting past that first one or two injections of Humira I think and then I will feel differently about it I'm sure. I felt the same way before I started the prednisone....once I started and nothing bad happened I was ok with it since there were no bad reactions in my case...but still very aware that it is not a good thing in the long run and there are bad side effects that go with it especially down the road, no doubt.....rheumy explained it. Hopefully the Humira will prove to be safer and I can get off of the pred. At the moment its keeping me more functional and not as miserable so I am greatful for it.
Thanks again, its a very good reminder.
have a good day! :-)
Jonathon
Posted 11/6/2006 5:45 AM (GMT 0)

:-)  Dear Jonathon,

Welcome to HW! And so very glad to have you.  YOu seem like such a sweet person & I feel you'll get a kick out of our little HW Arhtritis village....however, we are mostly chicks and we need our MEN!  well, we had Dave and Craig and we still have Marius...but we need more dudes! LOL.

So, stick around.

Humira I feel, and was on it for over a year....has less side effects and long term side effects and doesn't make you feel as lousy as prednisone does.  And we do have yeah SHOOTIN' UP PARTY HERE for when ya give yourself your first injection! yeah so you'r never alone.  after the 1st one...piece of cake!  And Humira was just approved for PsA too!

The best to you! And looking forward to hearing from you soon!

Peace,

erin

Posted 11/6/2006 1:16 PM (GMT 0)
Hi Erin!
Thanks so much for the warm welcome!
Thanks too for the nice compliment....sometimes I feel like PsA has taken away big chunks of my personality in a relatively short time, it probably has....pain has a way of doing that somehow (kinda scarey) so that was a nice compliment to hear :-)
Its 4 a.m. and I'm up trying to figure out where I hurt the most lol...this spondylitis is so bizarre... moves around and does some unreal things thats for sure. The party for the first Humira injection sounds real cool ;-) I will look forward to it and post when that day is about to arrive......my rheumy appt is at the end of Jan. so it will most likely be right around that time frame I'm guessing. I noticed that you are on Remicade?....is that helping you more than the Humira did? I hope you are getting relief! Did you take the Humira shot every 2 weeks? Thats what my rheumy said I would be doing....twice a month.
Well I better grab more coffee and take my meds now,
I hope your day is a really good one!
Wishing everyone a painfree day!
Jonathon
Posted 11/6/2006 10:47 PM (GMT 0)
Jon, i have a bottle of hydromet syrup for my cough but i didnt take any cuz of all limitations no driving, dizziness, blurred vision, drowesiness, possible braeathing problems etc! so many sticker warnings i am afraid to take it!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! the pulmmy gave it to me. i have cherritussin too from my md. but i am choking her typing with this Dang (but i really mean Da**! ) cough i have had enough today !!! ok not complaining just vented for a second :) level again happy place. so i guess i will try some now as dinner is cooked and i got nottin on my plate for the evening but house work and laundry so i'll skip that if i get drowsey! heck i'll skip it anyway :) hydromet here i come!!!!
Posted 11/7/2006 2:30 AM (GMT 0)
....oh prednisone...oh prednisone....how bloaty you do make me!

         ....oh prednisone....oh prednisone...the new chin-hairs I CAN DO WITHOUT!

tongue  hah! oy!

okay, so i'm pretty stinkin' bad. but, it's 9pm and i took 60mg of pred throughout the day today to AVOID the  skull ER skull had a fever 101.3 sad explains why i was as bad as i was all weekend.

Jon...you are a special person...this HW place is a magnet for "the cool peeps" scool elieve me.

umh??? i have NO opinion of the Remicade yet. i will get my 3rd infusion on the 20th...but i need one like NOW!  mad so i really have to puush for maybe frequent intervels..like every 2 or 3 weeks...because this 4 week wait is truly torture. sad okay, i started the Humira @ 40mg every 2 weeks...then after like 6 months rheummy pushed me to every 10 days...then it was weekly.  it depends on the individual. i was getting worse after the 5th day without a shot! depending on how advanced the AI disease is & how you respond to therapy will determine your dosage & frequency.  You WILL do FINE!  i love the abdomen for this shot...grab a nice soft bunch of tissue and it is a piece of cake. i prefer to inject it slow...it has a bite to it, but if i can take it...ANYONE CAN! the Enbrel 50's? whoa! now those are doozies!  now, YOU HAVE THE CHOICE OF THE HUMIRA PEN (which i don't recommend){just my opinion} or the individually filled regulay syringes.  why? well, the Pen will shoot ya at a speed that might hurt, and with the syringe, YOU CONTROL THE PLUNGER!  so if you're comfortable and not a needle-phobe...shoot for the do it yourself, if not....the Pen won't be bad neither i suppose. i just say this because myself & patients i've given it to ALSO  prefer the injection to go slow...it stings less. to each his own! go for it!

hey yalinda, be careful toots. ((((((((( big hugs to all )))))))))))

erin  yeah   <<<<< 10 days till Bobby! >>>>>> yeah 5th row baby!

Posted 11/7/2006 3:04 AM (GMT 0)
Hi Yalinda,
Gee I hope that cough has settled down tonight....hope the syrup did the trick and you are feeling much better. Very true, best to be able to just stay home and kick back after taking it, rather than having to drive or do other stuff etc.......the less stress the better right?! I bet it works better too that way and is more effective...less side effects etc.
Have a good restful nite, and wake up feeling good :-)
Jonathon
Posted 11/7/2006 3:12 AM (GMT 0)
Hi Erin,
Hope you are doing better this evening.....today seems to be a day where alot of us aren't doing that great for some reason...it was a tough one for me too and can't figure out why....haven't done anything that should make me more miserable than usual today lol I keep bouncing back and forth with better days and worse ones alot lately....maybe the weather changes or season change thing?
Thanks for that humira info....yeah I see what you mean, the script is different for each person depending etc....the individually filled ones do sound better than the pen...injecting it slowly makes alot of sense too...well I'll be finding out before too long how it all goes....somethings gotta help sooner or later....hopefully sooner!
Have a good nite and feel lots better! :-)
Jonathon
Posted 11/7/2006 11:58 AM (GMT 0)
thats why i got that one chin hair this summer that keeps on tickin! well p me off anther reason to dump pred!

oh i loved the song erin.......... and educational too! i didnt take pred yesterday really trying not to not cure about today stiff, need oil! g2g byes!
Posted 11/7/2006 4:46 PM (GMT 0)
If we could figure out a way to make prednisone grow hair on top of the head, instead of places where it isn't needed, we could make a total fortune and become friends with Donald T. forever!! ;-) Maybe one day the prednisone label will say "cures baldness" for one of the side effects lol now back to my lab experiments lol
Posted 11/7/2006 10:18 PM (GMT 0)
hehehehehehehehe
Posted 11/8/2006 12:13 AM (GMT 0)
How about the side affects from the prednisone? I was on 15 mg a day. Then got bumped up to 30 due to pleurisy. Well it has worked wonders on my whole body. I can't believe how great my body is starting to feel after years. Except for weakness and sweating terribly. But the main thing is I feel a pulse through every inch of my body. Is this normal or should I be talking to the doc about this?
Lori
Posted 11/8/2006 12:34 PM (GMT 0)
ode to prednisone! it is a wonderful drug, but from my understanding not one we should live on forever.

i am not certain about the weakness, but i know i had the sweating. i think some people do get a racing heartbeat? i think, ...............

erin, oh erin? she should come around soon?
Posted 11/8/2006 8:31 PM (GMT 0)
Thank you Yalinda.....makes me feel more comfortable.
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