I'm serious here. You all are probably going to think I'm a complete freak, with all the info out there on the long term side effects of prednisone....
But even armed with that knowledge AND living with the more obvious short term side effects; like the insatiable appetite, the weight gain and bloating and the bad skin --- I want MORE!
I'm on 10 mg now daily and I feel like CRAP. The 3/4 times over this past year that I was on the high dose pred packs, I could function at least. That is ALL I can think about right now. Especially right now.
Yesterday I dosed myself to the max on my pain killers so I could at least put my overdue seedlings into the garden and play with my nieces and nephews...and it was GREAT!
But now I feel like my whole upper body is made of thousands of pounds of wet sand - especially my hands. Three hours into my morning and I can still barely move. I can't even really lift the palms of my hands off the keyboard of this laptop or sit up without props...All I can think about is IF I were on the high dose of Prednisone, I would be able to just keep going and going and going.....
My Methtrexate was increased last week (after a month) from 6 pills to 8 pills weekly and the Folic Acid was increased from 1mg to 5 mg daily, but it isn't making any difference yet. Would it be wrong of me to call Dr for another round of a high dose of pred? I just want to be able to LIVE a LITTLE and the trade off seems worth it....
You'll probably think I'm a complete freak too.
Like you, I function very well on prednisone and spend many days wishing for it.
Unlike most people, my side effects are weight loss, blemish free skin, absolutely no fatigue, no flu-like symptoms, and I can actually sleep the entire night through! I feel NORMAL when I'm on prednisone.
Hi Melly,
I up my prednisone as needed with my Doctors' permission. They feel that i know my pain better than they do and i can regulate it with prednisone and i do. I usually up it until good function and down to just above pain.
What is so very important to have knowledge of is that almost all pain medicines are addictive to the brain. What does addictive to the brain mean? Addictive means that your brain or self will mimmick the pain that keeps the pain medicines coming and so many people that think that they are having RA flares are actually having addictive beggings. The addictive self will send out pain, stiffness and swelling just as if it were RA just to get that medicine or drug.
Eventually, the doctors will get the right combination of the right amount of mtx and whatever to where you can come down and even off of prednisone.
Bottom line, prednisone stops the pain and erosion, pain killers kinda kill the pain, not real well when the pain is real, but practically stops all pain when the pain is an addictive begging.
LEV
Melly, most people have a love/hate thing with pred, but i'm one of the rare few that loves it. I know it has really bad long term effects, but when I need it, I need it. My Rheumy just upped mine again this week until I see him next Thurs.hi , I'm upping my mtx from 6 to 8 and asked twice 'should I increase my folic acid? He said, no both times???I wonder what the difference is between doctors? I'm doing so many things at once my mind is swimming! Reducing the preds, increasing the mtx and increasing the remicade in amount and lenght of time, MY HANDS FEEL BETTER TODAy!! sarahI love (and hate) pred. It banishes fatigue and gives me a zest for living! Pain and swelling go away, I feel healed!
I also go nuts, emotionally a very wild roller coaster and Get fat, faster than a bullit, and can't sleep (but don't need too).
I have a stash of 6 pills ....
Melly, one of the side effects of pred is euphoria. When you decrease theYup, I love and hate it. I read that one of the side effects is "inappropriate happiness" That's me! My daughter can tell by the tone of my IMs how much i'm on. I get very moody when the dose is decreased though so I hate having to increase it, knowing what will come. I alnd don't feel my normal self on it- but a bit "off". I'm was raised to 20 recently and am not getting better, which worries me.
Laker
every person must weight the benefits of a med to its risk. Everyone has their own scale that fits with their specific needs and disease process. You have to do what is best for you irregardless of what anyone else thinks or wants you to doYou're so right Buckeye. I'm paying the price for being on Pred. for almost 3 years but it was either that or become addicted to pain killers and I chose Pred. Everyone's situation is different. I'm dealing with the consequences of longterm Pred. use now and I find that I have to have pain pills after all. Am waiting for the RA meds to start working on a consistent basis. Lindy, what problems are you having after being on it for 3 years and how much have you taken?? I get so worried by all the side effects of pred. I have been on it for 4 years and have to take it I can't move without it and have had problems with other treatments. I have the weight and appetite gain and have learned to live with that as a trade off. I also have to take pain pills. UGH!!! I worry about being on it so long, but what to do???Oh man do I ever have a love/hate relationship with pred. There was a point I couldn't function without a high dose either.
Give the upped dose of mtx time to work. I wish it was an overnight thing for all of us.
One of the things I am ging to ask for when I go in to my next rheumy appt is to get off the pred. I am functioning well on 5mg (unless it freakin rains) and I am going to ask to up my mtx dose as a trade off for being off the pred and hope that works.
I sincerely wish our drug companies could develop some form of 'steroid' that would do a good job on pain and swelling but decrease the side effects considerably.
Is the problem with pred like the problem with estrogen replacement where it isn't bio identical and that difference is causing the problems?
Has anyone talked to their doc about alternate day therapy with pred? Mine really won't discuss it with me because he feels pred is only for emergencies. Anyway 10mg every other day is supposed to work as well as 5mg every day but with less risk of shutting down your own adrenals.
It is really sad that worth of this dangerous stuff works so much better than 00s of the biologicals or Arava or MTX.
I use to call myself the pred junkie and still do at times.
I love pred, but I have been on it for over 2 years now, with 3 months being on and off of it.
I just do not want my muscles inflammed again like they are feeling like they are starting to do.
You ain't crazy. I would take it if it was helping me, but it is not helping me anymore right now.
Thanks for replies here. I hadn't thought about the euphria aspect. I DO think I get more "high" in a way off the high dose pred packs than I ever have from painkillers like vicodin and percocet. But I think my personal "love relationship" with it is because it does so much for the swelling and stiffness and the painkillers don't touch that aspect of course. I am still feeling really bad today and had a really bad night last night trying to go to sleep with so much pain.
I called my Rheumy (who actually called me back personally within an hour - how is that for service?!?) and let him know my concerns about worsening like this this week after having my mtx dose increased last week. He suggested taking additional 5 mg pred per day over the weekend if I kept feeling this bad and that if I got worse - I could call over the weekend and possibly go on high dose pred pack. He also said that this did not mean the mtx wasn't working - or wasn't going to work - just that this disease would have it's up and down times.
I really don't know what to think....I HAVE to get better enough to go back to work before my short term disability runs out (26 wks with 15 used). I've never been married/no kids so there will be no other options for support. And I haven't had a "good day" in the past 3/4 months that has lasted longer than a few hours (and that was with pred, perc, vic., naproxen etc)....
Melly, you are in quite a predicament, and wise to be concerned about complications from pred many years down the road. I hope that the Mtx starts working for you soon, and that you won't be quite so dependent upon pred. Since you are so young and also a fairly new diagnosis, have you thought about antibiotic therapy, or AP? Most RDs don't mention it, but it has worked wonders for many people. It is long-term (but so is Mtx and the others), low-cost, and not at all hard on the body. Some people start it while still on Mtx and/or pred etc., then later are able to taper off as they improve. If you are interested, go to www.roadback.org or www.rheumaticsupport.net. I hope you start feeling better soon! PatHi, so far I am doing okay on 1mg less of prednisone since Tuesday. I'm planning to reduce slowly, and try not to suffer too much. It will take 8 weeks but that's the best I can do. lol sarah
Today, after a very long wait, I am finally getting my first maintenance dose of pred. My RD never prescribed it for me to begin with, but did give me one pred-pack during a particularly bad time and it was heaven (and I lost 4 lbs).
I know it's not a long-term solution, but until one of these other solutions start to work, I still need to live and work, so I can get my health insurance, so I can get the meds!
BTW, my RD said yesterday that they are coming out with a newer version with fewer side effects...
I've been on prednisone for a a little over 15 yrs. and I would love to be off of it. But since my adrenals no longer work, my doc says I'll be on it forever. A low dose but, nevertheless, always on it.
I would be the first one to tell anyone to get off of prednisone as soon as possible but if you need it to get you by while trying to get your RA under control, then use it. Being in a lot of pain just because you don't want to be on prednisone is not helping you. Having the inflammation that is causing such severe pain is actually hurting you. The side effects of prednisone can be costly, I have developed osteoporosis from the long-term use of it. Also high blood sugar but thats been looming for yrs. Everyone is different, but I didn't have any of these issues until the last 5 yrs. Everyone is different but my bone scans came back good for the first 10 yrs. of being on prednisone. Once again, I'd be the first to tell anyone to get off of it asap.
Finding the right combo of meds to control your RA takes time, But I believe that controlling the pain and inflammation in the meantime is just as important. There are drawbacks to taking any of these meds that we are Dx'd. Has anyone researched the side effects of MTX. Pretty scary! And the jury is still out on the long-term use of the biologics.
I guess my philosophy is get to where you need to be asap, but don't suffer along the way. Prednisone is a baddy but it is also one of the many meds with bad side-effects that treats the symptoms of RA.
Just my opinion.