Hi ho, hi ho...it's back to hospital we go..... | Arthritis Information

Well, well, well...what a surprise...the doctor's don't listen to the patient and then the worst happens.

In the last 72hours it has become clear to me that I am heading into a rebound flare from Prednisone.

Now I had three 500mg IV's whilst in hospital. Only after the third did I get the slightest movement and loosening. Then they dropped me down on oral at 100mg for a day, then down to 50mg for the next day. Thank goodness, at that point, my rheumy who was in 'charge' here as there is no rheumy consult stopped the weaning at 37.5mg until I see him next week.

I don't think that drop from 100 to 50 in 24 hours was a good idea at all. My past experience of a flareback is that it is about 7 to 14 days after they stabilise you on a dose that the duck hits the fan and one can start going backwards.

I am only hoping that we will not have to start the whole process again. Geez.

So for the past few days I have been stiffening, aching and have gotten to a place where I can once again, not get myself showered or prepare food to eat etc. This is not good. The organisation that should provide a in home carer turned us down because RA is not an age related disease. There is no similar agency that deals with disability. Fab! So basically the only thing I can think to do is to force my way back into hospital and stay there until I am well enough to take care of myself.

I am holding out to get in my local hospital though, that way Neve can see me more (once in three weeks is not enough) and it will easier for other people to help and visit also.

I am all packed. Tried to go in tonight but complications arose so I am holding on until morning to call my doctor. I have an appointment with the Pain Team psychologist in the morning so I am hoping to do that and then go in in the afternoon.

Neve is okay, for as long as needed. My brother and wife want to keep her and not move her around so that's fabulous. She is very settled and happy. They are dropping her off at my parents in town and she stays with them until her uncle picks her up. So she is really surrounded by family now which is good. At least I don't need to worry about her right now. I think Mick and Jill will just keep her until I am okay.

So a question...what is other people's experiences here of going off Prednisone either fast or slow?

I have only used Pred in the past six months so I would love to hear how people with more experience with it cope.
I'm so sorry about this! I have only been on prednisone once, when I had my very first big flare back in December. It was a medrol pack. The first three days I felt FABULOUS but by days 4 and 5 (smaller doses) I had the most enormous flare ever and couldn't move my hand at all, couldn't bear anyone touching it. I always wonder about this but it sounds like you get the same thing (although I was in a mini-version of your pain and dosage!)

Will be praying for you! Sounds like Neve is in great hands.

Thanks, KatieG. I pretty much expected this to happen with dropping me from so much, so fast. We may have gotten away with it...but it's not looking like it.

Pred is on the only drug that truly scares me. DMARDS and NSAIDS don't bother me at all but Pred just has this awesome list of side effects...wow...it's scary stuff but when you need it, well you do. And there is nothing like that 'movement' you get with it.

It's just soooo frustrating when you know your disease better than anyone and doctor's don't listen.

Yeah, Neve is in a perfect place. My brother and his wife didn't 'get it' until this hospitalisation. They 'get it' now.

Thanks for the prayers, darl. Cordy, I'm glad Neve's place is settled, must be a load off your mind. ANd I'm glad your fam is coming to realize what you've been going through and are willing to step up now that they know. I am sorry for the physical setback you've had though. Sooner or later things will get better and stay that way, right?   I'll be praying for that, my friend. Thank you, dear Lindy...there has to be a light Cordy,

I'm fairly new but have been following your posts. I can't offer much but please know you and Neve are in my thoughts and prayers. Best of Luck to you and gentle hugs...hiking_gal
So sorry to hear this Cordy. But I think you are doing the right thing. Camp out on the doorstep of the hospital until you get some real help. Be the squeaky wheel.

Sending you and sweet daughter my prayers.

Karen
I have no experience w/ pred.. but wanted to add my good wishes..

take good care,

babs
You'll be in my thoughts and prayers as you continue to face this challenge. Keep your chin up Sweetie.
(((((Cordy)))))
Sorry you need to go back to the hospital but if you can't care for yourself and a helper is not approved I guess it's the best place for you to be. Glad Neve can visit more often but hope you won't need to be there that long.
I have been on a prednisone taper for some time now. This is only my first time. My dosage is nothing like you were just on. I hear the tapering schedule has to do with how long and dosage amount. The longer you are on it the slower the taper.

I have been on it since mid November. 20 MGs a day from Thanksgiving until Jan.4th when it was increased to 40 MGs a day. At the beginning I was allowed to drop 5 MGs every 2 weeks until I got to 10 MGs now I am allowed to drop 1 MG every 2-4 weeks depending how I feel. I usually feel crappy at first but then it levels off and I move forward. I did have to wait a full month when I dropped to 9 before I felt I could drop to 8. I'm at 7 now. This time I feel very agitated for some reason on top of noticing stiffness and pain. I assure you though nothing like you are going through. I can't even imagine. I mean I can remember my onset pain which was horrific and almost constant- but I can't imagine having to endure it more than the 2 months I had it. I keep you in my nightly prayers.
Cordy heres hoping they can get this figured out..
I'm keeping you and Neve in my thoughts..
I did a pred taper starting at 90mg. It took years....honestly. If I dropped from one dose to another to fast I would get pounding headaches and stiffen up. I found joints where I never knew I had them!! I took pred. for 5 years-basically until I found a biologic that worked.Cords, I don't really have much experience with pred, but I wanted to say I'm sorry you have to keep going through this. Hopefully the light at the end of the tunnel will be them realizing they can't just send you some mental exercises and send you on your way. I know for a couple people here, extreme things have had to happen before they got the help they needed. I hope it's on the way very soon!Hi,

Sorry you have to go through this all over again, but I second the suggestion of camping on the doorstep of the hospital until they do something.

Prednisone worked well for me for about a week (only 10 mgs though), but had to come off it after that (took about 10 weeks though) because to played havoc with blood glucose levels. Prior to diabetes dx had never had a problem with prednisone, but can't ever have it again now.

Will be thinking of you and sending all positive thoughts your way.

Hi Cords, I was wondering how long it would take for you to flare again, the only thing I have ever used that really works is pred, one good thing though, the specialists have found that it stops the progression of the disease maybe not as much as some dmards, but joint erosion is rare and the inflammation is definitely reined in, so its not all bad, hang on to your strength and know that we are all praying for you and Nevie, love Janie. Some people on here are on pred permanently, I know this is not what you want but nothing else compares for me and without it I, like you have to stay in bed etc, so please consider it at least until they find something else that works. Cordy - no experience with prednisone, but prayers going out for you and hope that they find some answers for you. As hard as it may be to be away from Neve, sounds like she is surrounded by people that love her (and you)

Take care

Cathy
Hugs, Cordy. Your plan sounds like a good one and with Neve in a safe, loving place you can really concentrate on getting stable. The fact that your family now "gets it" is a huge upside to all this and, bless their hearts, they really stepped up to the plate. How fortunate for you. That is not to minimize what you're going through, absolutely not. But it could be even worse. I'm so glad it's not. Camp out at that hospital, grab on tight and don't let go until they do it right. SS Cordy, been there, have had to much experience with prednisone and have the side effects to prove it. Prednisone is the best drug I ever took. It got me back on my feet and able to care for myself. I was in a wheel chair and couldn't tear bread in two or open a door. They put me in the hospital and put the prednisone in thru IVs, they gave me 100 in hospital and lower it to 95 when I went home 10 days later down 80 a week later, went down 10 ( 70, 60, 50, 40 ) a month till I was at 40  he only lowered it to 35 then 30, 25, then 23, 22, 21 on down till I got so tired of it that I started going lower every month till I was off it and he was very unhappy with me.
I have or had just about ever side effect that you can get with prednisone, when I got down again I didn't think twice about going back on it. I'm off now, but would take it again if I got back down. Everyday RD drugs don't work for me...I have to take the hard stuff, been on cytoxin, now on imuran which is a little safer.....I belive they went down to fast on you, but remember everyone is different and what worked for me, may not work for you....wish you the best, hope everything turns out for you and you get better.
My Dear Cordy, I just want you to know that you are still in my thoughts and prayers. I'm so glad you have family caring for Neve. I know it takes a big worry off your mind.

You absolutely do need to be back in the hospital, where they can take care of you. You need to have your pain controlled and be looked after properly. Please let me know how you are doing, Sweetie. I'm very concerned about you!

Take care, my dear friend,

Much love, Nini
Thanks for all the prayers everyone, they are very much appreciated.

The Give 'em hell, woman!!! I intend too, Jas!
You are so brave. Hang in there and don't give up. Aw, shucks, graciesmom, that's such a nice thing to say.

Sometimes I wonder if I am brave or just ridiculously pig-headedly stubborn to the point of lunacy!!!
Cordelia I was diagnosed very recently with RA and have had a pity party for myself ever since. Then I come here and read the latest two threads of yours and I am ashamed. You are one helluva woman.

I dont know enough about the condition...yet...to be able to offer any advice at all but what I can do is to send all the love I can muster and blow it across the ditch right at ya. You will also be in my prayers.

From one Antipodean to another xxxxxxxxxxx

Lyn
Geez, LyndeeNZ, thanks but really I must apologise to you and the other newbies who have found us recently...usually I make a point of welcoming new people and answering their questions if I can, I feel sorely remiss that I have not been able to do this in the midst of this chaotic madness that is my life right now.

I think it is so important that the more experienced board members acknowledge new people. That acknowledgment can make a world of difference when you feel incredibly isolated. It's very important.

Oh, do realise though that your 'pity party' is just as valid as mine, sweetie. It really is.

Thanks for the prayers and wonderful acknowledgment of who I am. It's easy to forget all that in the midst of this craziness. Hope things get better soon. I am allergic to alot of things so i take prednisone everyday. The docs always say they want to get me off the prednisone. They never do. Just because of my allergies to other meds. I am getting rather used to it. That seems like a large drop. I do not think it would rebound flare you. I would like to hope your Reumatologist has an idea of what he is doing. Good luck with that hospital. Maybe i could come be your roommate for a day or two. LOL You are in our prayers.Big Hugs Cordy!

I am so sorry that this is happening to you again. I hate hospitals. I don't have any experience with big doses of pred because my Dr won't use anything over 50mg on me because I am a tiny tiny person. It is good news about Neve, I'm really glad that things have worked out there. My mum works for the QLD disability services in Bundaberg and I am going to give her a ring soon to see if there is absolutely anything that they could do for you in your state. The team that my mum worked for gave in-home care to people with disabilities like Downs Syndrome and Cerebral Palsy, and I will speak to her and see if RA can qualify you for services too. The problem is that QLD is twenty years behind the rest of country in disability services, here in WA or even in NSW or VIC you could qualify for in-home and care assistance in a blink, but as you have found out, they can't do anything for you, at the moment.

I'll be in touch within the next fortnight or so. Stay strong!
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Cordy, it seems that lately any light you think u see at end of tunnel is an oncoming train :o
lorrie2008-11-23 23:24:44Sorry to be so slow responding. I've been out of town and am just now catching up. I just wanted to quickly wish you the very best. I can't imagine how hard it has been for you. It makes me truly appreciative of how fortunate I've been to be doing as well as I am. Take care of yourself as best you can...will be praying for you.

Alan
Who is keeping in touch with Cordy, please?

Pip
HI Pip, I have been trying to keep in touch with her with PM,s but can't get her, yesterday I think she was trying to go back to hospital. Janie. I would say that she is in Hospital and will try and make contact tomorrow. My thoughts , prayers and gentle hugs go to Cordy.
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