Guest guest Posted December 20, 2006 Report Share Posted December 20, 2006 I am faced with a similar situation here too. Just having been told I have to cut my arava down to every other day and totally go off humira and no enbrel either. I have to go back up on my prednise after getting down to 2.5mg. Plus trying voltaren and only get can take it if I take a purple pill. Oh and I also take prozac too. I also have a 17 and 15 yr old to raise. It's hard but I just try to get thru one day at a time and try to focus on the positive when I can. Joy kuehnlej <kuehnlej@...> wrote: Hello, I have been struggling with the decision I made several months ago to get off prednisone. I was only on 17.5 mg a day, but I was very concerned about the side effects and was also gaining weight (something I had just sent a year losing) and just felt like my moods were swinging right along with my 16 year olds. I did a slow taper of dropping 2.5 every 2-3 weeks and then once I got to 10 mg I went down by 1 mg every 2 weeks. I got to 5 mg. I also had tremendous pain. I was used to the first week at a new dose being bad, but I was bad all the time. I had no energy at all and hurt to the point where I couldn't function (I'm a mom, wife and full-time educator). So I began taking the pain meds the docs kept telling me to take. Ultram, Darvocet, Vicodin and another one I can't remember. Not all at once! I would end up taking something almost every evening though I never took as much as they perscribed. (Along with the neurotin I take for nerve pain in my back)I must admit I began to look forward to the evening of being slightly detached and not feeling the frustration of trying to do things that hurt too much and sitting in a messy house with no energy or pain tolerance to do anything about it. After about 6 weeks of this, I was getting low on Darvocet which seems to work the best and trying to decide if I really wanted to get it refilled (a call to the doc) or what to do. I called yesterday and she said why don't we go back to 15mg of prednisone. Well, I decided to do it and am now riding the initial " high " of no pain and boundless energy and optomism that comes when I first raise the dose by that much. It is so wonderful to feel like myself again. The heavy depression is gone (something I realized came especially with the Vicodin for me). I also have the guilt of knowing I am choosing to feel better now (I know it will level out) knowing I may have damage later. (I had a history of vertebral fractures and osteoporosis even before steroids). How do you make the decision? Short term vs. long term is something I am trying to get through my 16 year olds head now. Work towards the long term not just what feels good now. On the other hand, if I'm too depressed and detached to really participate in life, well I just don't know. in St.Louis (Taking Remicade, methotrexate, folic acid, prednisone, asthma meds and prozac) Joy ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Visit Joy's Homepage and Reading Room! http://jhoormann-ivil.tripod.com Come see My Dog Salsa! http://www.geocities.com/jhoorm01/Salsa.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2006 Report Share Posted December 20, 2006 > I have been struggling with the decision I made several months ago > to get off prednisone. I got to 5 mg. > I also had tremendous pain. I called > yesterday and she said why don't we go back to 15mg of prednisone. > Well, I decided to do it and am now riding the initial " high " of no > pain and boundless energy and optomism that comes when I first raise > the dose by that much. It is so wonderful to feel like myself again. I can really identify with your dilemma! I'm in the same boat -- have some osteoporosis of the neck, and I (and my doctor) would really like the prednisone dose to be as low as possible. However, I just can't function with all the pain and fatigue. Taking enough pain med to dull the pain also keeps me from functioning. I'm between a rock and a hard place. The doc also prescribed methotrexate and plaquenil, which allows me to get down to about 8 mg of prednisone, but that's as low as I can go and still function. I'm still able to work at that dose (I have a very easy sedentary job and get to work from home a lot), so I think I'll have to just deal with whatever long-term side effects I get from the prednisone. For what it's worth, my father was on prednisone for 30 years and eventually died at age 74 from a stroke and other complications. I'm now 56, and I figure that if I can live as comfortably as he did and make it to 74, I'll have had a very good life. Take care, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2006 Report Share Posted December 20, 2006 > > I can really identify with your dilemma! I'm in the same boat -- have > some osteoporosis of the neck, and I (and my doctor) would really like > the prednisone dose to be as low as possible. However, I just can't > function with all the pain and fatigue. Taking enough pain med to dull > the pain also keeps me from functioning. > and Joy, It really helps to know my situation with the pain meds is not unique. I think you are right that balancing it all and taking it one days at a time is my best solutiuon. Now I just have to make myself do that! I am having another good day so I am off to the post office and we'll see how the day is by the time I get back. Thanks! in St. Louis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2006 Report Share Posted December 20, 2006 I am currently down to 10 mg of Prednisone a day with vicodin for pain as needed. I weaned myself down from 20 mg a day of prednisone over 8 weeks, and have been on 10 mg for the last month. It's a good thing I am on this list, going down on prednsone is like some of the worse flares I have had with RA, because of the list I know to expect that with the reduction of prednisone. I am in a lot of pain right now, and it takes a day or two to recover from doing any holiday shopping. I just switched to the injectable MTX, as my doctor suggested that the actual dosage of MTX your body uses is greater with the injections. I just gave myself my third shot and haven't noticed any difference yet, but I am hoping. I had been on the MTX pills for over 7 years. Currently off any type of biologic, hopefully will start something on the first of the year. I would really like to get off the prednisone and use it only when the RA flares up badly. My mother developed Cushing's, because of her use of prednisone for RA, I have developed a very round face and am noticing other symptoms from the prednisone use. As for using pain meds, well I figure that is what those medications are for, pain, and I have no trouble using them. As far as feeling foggy or drugged on them, I don't really feel that way. They don't make all the pain go away, but they make the pain in my ankle tolerable to the point of being able to stand and walk a bit. Which is a good thing. I'm still not sure if being off the prednisone and only on pain meds is a good thing too, but I would rather weather the side effect of the negative societal view of pain meds, than the side effects of prednisone. Quote Link to comment Share on other sites More sharing options...
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