2.5mg pred now!!!

Its getting exciting, down to the 2.5 mg stage and managing the increased pain so far. I'm slowly adjusting, its actually hard to keep going slow I just want to stop it now but I'm terrified of a flare. I'll just keep going at my own slow rate.

Worst pain areas seem to be fingers and wrists, heels and toes, my elbows and knees are hanging in there. My lower back is constantly sore now but my rheumy reckons thats osteo not rheumatoid. I just know on pred it doesn't hurt so its definately inflammation of some description.

But I am succeeding, after nearly 6 years on prednisone I am finally managing to decrease it to negligible quantities. I already feel healthier, I've begun to lose weight and fit jeans I haven't fit in years. My last blood test was good, no raised cholesterol.

This is my busiest time of year, just 3 more weeks of lectures and I'm back to mid year break. I'm counting down.

Dropping from 5 to 4.5 seemed to be the hardest step.

So cross your fingers for me I manage this all the way. I can't imagine the pain can get much worse than it already is.

Any fellow ex- prednisone advice out there?

Thanks everyone, golitho

Oh good for you! I am nervous about starting prednisone. I just got a prescription for 5mg from my dr to take 2x a day for the first 4 days, then down to once a day until we get more results back. My father has been on it for 40 years for severe asthma and can't stop taking it now. I am scared to be on it that long!

Hi all, thanks for the support. I am still on humira and mtx and mobic but last time I tried to come off the pred I stopped it at 2.5 lasted 2 weeks ad then flared terribly and was back up to 15mg to control it!

So I am being so very cautious this time. Its so tempting to rush it.

Hows your back ache now, Momto?

Good luck Krock, don't get me wrong pred is wonderful when you need it, works so well but just don't stay on it if you can help it. Its the long term problems, thin skin, weight gain, insomnia that get to me.

Thanks Char, I feel pretty proud of myself, as long as the pain only gets worse in these small increments I'll make it. Its like my brain readjusts to the new pain level after a few days and it goes back to background noise.

Do you guys feel like this with new pain, like your body readjusts the pain level setting or something?

Best wishes golitho

I know it sounds wierd having mtx and humira and still needing prednisone, they just don't seem to work as well as they once did. I still have quite a bit of trouble with my feet, mainly my big toes and the tendons of my first two toes plus my heels. Then my wrists are permanently swollen and odd knuckles hurt too. I get recurrent pain in my elbows. I've been tested positive for nerve entrapment in the wrists but I think the humira just doesn't work as well as it once did.
Unfortunately I just seem to get worse all the time very slowly but all the same there is this continuous progression of more symptoms. My rheumy tells me if the humira fails we can try Simponi or something beginning with A. But I am hanging in there as I am so much better on the Humira than I was on Orencia or Remicade. Just not as good as I would like to be.
I feel like my thinking has shifted and what I would have once found intolerable pain wise, I now manage to deal with.
As for my back, yes I have had an old injury there and have had it X rayed but it shows only swelling around the joints not displacement. My rheumy thinks its osteoarthritis or the beginnings of it. I just know it hurts worse now on less prednisone, good to hear your back settled, lets hope mine does too.
Got to try and strengthen up my stomach muscles to take the strain off it.
Fatigue is so draining, I feel like crawling off into bed instead of teaching my class this afternoon!
Such is life, but we struggle on and enjoy the sunshine, plus the coffee!
Best wishes golitho

 

Way to go Golitho!!  I'm pleased to hear that you are down to 2.5mgs.  I wish!  I've also been on Pred for 6 years this last time.   I hope that you are still going strong.  Fingers crossed.  Great Luck! :)

Hi all, yup this last bit of tapering is proving tricky, doesn't help that work is extremily busy and the weather has hit a cold night stage. I keep waking in pain, stumbling up and swallowing pain killers at 2am so I can sleep. If its not the prednisone making me an insomniac its the pain. I dropped to 2mg this morning.

Cross your fingers I can mange this.

Hi Weary, I thought you must have dropped off for a while, I am so busy teaching that I hardly get the time to post, 3 more weeks and I'll be back to poverty status (mid semester break) and have more me time.

Hey Mis ouchie how have you coped for 6 years on pred? Thats a long time too.

I do feel good physically without it, feel like my thinking has become more settled somehow, feel more like the old me. You don't realise how much those few milligrams of prednisone affect you until you start going off it. Even fit my old jeans. Yeah!

Hi Momto, I just can't remember the A one either, I think its an infusion but  was mentioned too long ago now for me to remember. I think its a last try one, a BIG GUNs sort of treatment but my memory is probably completely shot. Too much rubbish filling up the neuron spaces or whatever.

Thank you all for your support, means lots and helps me keep plodding on. regards, golitho

 

Sorry I didn't comment on the coping part with Pred but I'm not sure what in particular you meant since some patients have minor, major or different side effect difficulties.

Like others, i have a strong built-in coping mechanism thankfully.  I've been on many different medications since this flare began and some have the same side effects of Pred plus similar side effects as the symptoms of the diseases themselves.  I, of course, do not like any damage that a medication causes me but if I want the drugs' help then I either have to find a way to minimize the damage while on the drug if possible or put up with it while I am on it and the possible damages afterward.  Except for the hard to control blood sugars for a while and the short term memory problems, I think that I have coped with the Pred okay.  I would still be happy to give it up.

Hey Go- no one ever made the inference but while on MTX my triglycerides soared to 900! You are not supposed to be above 150.

Hope all is well with you & your taper.

Yes the nurse used to be a nurse for a skin specialist so she is used to seeing patients on biologicals, she said they monitored their cholestrol closely as it was a side effect for some people to react to mtx this way.

I said that badly, but hopefully you'll get the gist of what I'm saying.

Suffering from a bit of brain deadness this morning!

I don't think my rheumy has ever checked my cholesterol? Nor have I ever heard about it, has anyone else?

Its a case of what next really isn't it?

As for the diet it will hopefully help me shed some weight. I've put on about 7 kilos since I've been diagnosed so can't do me any good. Hate dieting when its cold though!

In fact I hate dieting in general, feel like we have enough to deal with without denying ourselves food as well.

So you can see where my thinkings at. All over the place,

best wishes, golitho

just got put on plaquenil today. I have rheumatoid arthritis and am currently on 2.5 mg. of prednisone after trying to taper off myself I had to stay on this dosage to keep pain level at bay. I am also on Cymzia but with both of these meds my fatigue is awful. A couple of weeks ago I was about ready to beg to be put back on higher dosage of prednisone. Man that is some good medication. I have read on here that Plaquenil takes awhile to start working. Sure hope it helps with the fatigue pain level is somewhat better since being put back on prednisone. Have any of you ever taken plaquenil and if so how did/does it work for you? I read where some folks lost weight while on it as well any of you that have been on it ever lost weight? Praying for better days for you all.

Golitho, Glad to hear you are hanging on and doing well! Just keep going slow!

psbg...please get a baseline eye exam before you get too far into the plaq..I felt *fantastic* on plaquenil, it helped my fatigue so much, but I was one of the few that it was damaging my eyes and I had to discontinue. I know it is rare, but it does happen. I really, really miss my plaquenil!

I was on Plaquenil for a very short time as I ended up with an all over body rash it was horrible, that's when my rheumatologist put me on methotrexate which after 17 years I had to stop because I was getting dizzy spells after taking it, my RA is in remission thankfully and now all I take right now is the rituxin infusions, but I will say that whenever I have a flare I run fast and hard towards the prednisone.

That is fantastic Golitho! I haven't read or heard anything regarding the MTX and high cholesterol, but I have with the pred. Not sure if it is because we eat more, or how it is related, but I am going to wait a bit longer and have mine tested to see just how hight it is without the pred.

Gritch..That is great to hear of a remission, I once asked my rheumy if I would ever have one and he said *no* he doesn't believe in remissions and I have not had one yet. If you can get by without meds and be pain/fatigue free that is wonderful! Although, I always hope I will wake up one morning pain free and it won't come back!