Guest guest Posted December 18, 2008 Report Share Posted December 18, 2008 No, I started on 60mg prednisone, 600mg ibuprofen 3x/day. Then when I started Kineret I was able to start tapering the prednisone. Of course I'm taking calcium, multivitamins, etc. And while on the prednisone I used a couple of different sleeping medicines. That's all I have had to deal with (so far). > Thanks for the info. > I may have missed it but where you on anything else in combination > with the Kineret besides steroids? > > ________________________________ > > To: Stillsdisease > Sent: Thursday, December 18, 2008 9:56:28 AM > Subject: Re: New/Old Member - Andy > > Hi , > I can still hardly believe it (there must be a psychological component > to this), but I felt different within a few minutes of taking the > first injection. Within an hour I felt the " brain fog " lifting, and I > remembered what it was like to feel normal. Of course not every day is > that good, but in general I am so close to feeling normal again that I > have to look carefully to be sure if I am noticing a symptom. > > Good luck - I hope it works as well for you. > > > > > > Hi , > > > > I am new to the group, been here for a couple of weeks. Already > > found great support and new friends. > > > > Do you remember how long the Kineret took for you to start seeing > > results? > > > > I am ready to get it started, many people have said it was what had > > finally worked for them. > > > > Stay well, good luck on your dissertation, I remember those days, > > > > > > ____________ _________ _________ __ > > From: D Prince <bprincerice (DOT) edu> > > To: Stillsdisease@ yahoogroups. com > > Sent: Thursday, December 18, 2008 9:32:59 AM > > Subject: Re: New/Old Member - Andy > > > > Hi , hello everyone, > > > > I have not posted anything for a while; the good news is that this > is > > because I have improved enormously since this summer (when I was > > diagnosed and joined the group). I have been on Kineret since early > > July, and have kept improving since I began it. I was able to get > off > > prednisone in October, and am now even reducing the amount of > > ibuprofen I take daily (my creatinine levels were up some at the > last > > round of tests, so the doc asked me to reduce it if I can). > > > > I have been able to get back to my " job " (I'm a graduate student > > writing a dissertation right now) this semester, and I was able to > > complete the semester normally, without having to cut back on what I > > am doing - except for the days I missed things because I was waiting > > for Fedex or UPS to deliver Kineret, and they were late showing > up... > > > > To summarize: I am now taking Kineret daily, and 200mg of ibuprofen > > 3x/ > > day. I have some slight soreness in muscles from time to time, but > > nothing serious. My labs are all normal, so I suppose I am in (drug- > > induced) remission. > > > > I also wanted to say that I have been reading the posts pretty much > > every day, even though I have not written back in a while. I want to > > thank everyone for their messages - even though I am feeling very > > good, there is still uncertainty about the future, and it is really > > wonderful to hear from others who are dealing with this and know you > > are out there.. I wish you all pain-free days and lots of happiness, > > especially during the holidays. > > > > > > > > > > > Hello Group > > > > > > My name is Puente and my son Andy has Still's disease. I > was a > > > member > > > of the group a few years ago and some of the old timers may > remember > > > me. I > > > have rejoined in order to learn about new medications and > treatments > > > that > > > people have tried; what worked and what didn't. > > > > > > First, for the newer people in the group, as well as updating the > > > older > > > members (Cat - sorry about not staying in touch, too much > happening > > > with > > > Andy), let me give you Andy's background. He was diagnosed 14 > years > > > ago when > > > he was 25. It was the usual story; admitted to the hospital with > > > spiking > > > fevers, he was examined by almost every specialist there is and > > > given every > > > test in the book. On the sixth day, a rheumatologist arrived, > looked > > > at the > > > chart, asked two questions, and diagnosed him with Still's. One of > > the > > > questions was did you have JRA as a child? The answer was yes when > > > he was > > > eight years old. He was treated with six months of aspirin therapy > > > (30 tabs > > > of baby aspirin per day) and he went into total remission until > that > > > summer > > > some 17 years later when AOSD struck... Despite all of the drugs > he > > > has been > > > on over the years, his disease continues unabated and is still > > > ravaging his > > > body. > > > > > > Within 18 months of the onset of the disease he had his first hip > > > replacement, followed a year later by the second one. Then in > year 4 > > > he had > > > his first knee replacement and then his second one sometime later. > > > He had a > > > C2-C4 vertebrae fusion, a procedure that requires the head to be > > > immobilized > > > with a metal ring screwed into the skull and sleeping upright in a > > > chair for > > > 3 months. Both ankles and feet are fused with plates and pins. > Bones > > > in his > > > hands have fused spontaneously and recently he had jaw surgery to > > > correct a > > > problem in one of the joints. His shoulders are extremely painful > > > but he > > > wants to put off those joint replacements as long as he can. > > > > > > He has been on Plaquenil, Methotrexate, Arava, Enbrel, Celebrex > and > > > now > > > Orencia. His pain meds have included over the years: Tramadol > > > (Ultram), > > > Oxycodone, and a few others. Prednisone has been his mainstay; > he is > > > currently on 15 mg a day, but at times up to 80 mg per day. He > also > > > takes > > > 200 mg of Celebrex 2x daily, Orencia - one infusion per month and > > > Oxycodone > > > for pain as needed. He was on Tramadol, but became addicted to it > > > and had to > > > go through full-blown withdrawal (sweats, chills, cramps, etc.) to > > > get off > > > of it. > > > > > > For those of you who are new members and have recently been > > > diagnosed, I do > > > not wish to frighten you with all of these details. Andy's case is > > > very > > > extreme and it is rare that Stills patients have this many > problems. > > > So, it > > > doesn't mean that your disease will progress in this fashion. I > list > > > his > > > background and his drug regimens here so that people whose joints > > > are more > > > affected than others can help me and Andy with some possible > > > solutions. > > > > > > Despite his problems he continues to work full time as a private > > > school > > > teacher, has a loving wife, a 2 year old son, and one (a girl) on > > > the way. > > > However, his rheumatologist is concerned (and so am I) about the > > > disease and > > > its progression. Orencia is not having the desired effect and he > is > > > searching for alternatives. > > > > > > That's where all of you can help. I would like to hear in some > > > detail what > > > has helped you. I know all of the drugs that are on the market > today > > > and a > > > few that are in Phase III testing. What I am looking for is what > has > > > worked > > > for you. The more specific you can be the better I will be able to > > > assist > > > Andy and his doctor in looking at what works in Stills patients > and > > > what > > > doesn't. I know that all people are different and what works for > one > > > won't > > > necessarily work for another. Even though Andy has been on a > number > > > of the > > > more powerful drugs that haven't worked, maybe some of you have > > tried > > > various combinations that he has not.. I know that his doctor is > > > struggling > > > to find a solution. Most rheumatologist don't have that many > Still's > > > patients and they are just as eager to hear about possible > > > combinations that > > > have worked for other people. Let's face it, there is not much > > > research > > > going on about Stills and doctors are left to their own devices to > > go > > > through a process of trial and error to find out how the person > > > responds to > > > each drug or combination. That is the nature of the beast today. > > > > > > Thanks, > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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