Guest guest Posted October 14, 2003 Report Share Posted October 14, 2003 Hmmm... this sounds so much like me! Last January I was completely off MTX and the dreaded Pred. It took some time for me to begin to feel better, but this past summer was normal! My energy level was back, my weight was down, and my attitude was up! Alas, with the coming of chilly weather, my Raynauds came back as did the sweating chills and the aches and pains. Also, my pluresy is back and painful. I finally went to the doc and begged him to help me with NO steroids. So, I am trying an oldie but a goodie, indosin (sp?) so far not much improvement. I think my husband coming home next month from Iraq will make me feel alot better. Good luck Lynn and keep us posted. I may not post too much, but I keep up on the readings! Amy Lambert Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2003 Report Share Posted October 14, 2003 Hey Lynn !!I hope you don't have Stills and that the doc finds something he can get rid of...and of course...you have to stay here still!!!Love Liz NJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2003 Report Share Posted October 14, 2003 Lynn, Let me know what you find out..I have lots of questions about this one!! in NC I don't have Stills HI all, Saw the new Rheumy today. I was really impressed with the time he spent with me. He said he was going to take all my records home and call me tonight. Well, he just called and he said he wants a ferratin level on me as that is a must for Stills. Also, just does not think there is any evidence for Stills. He wants me to stop the MTX and come off the prednisone all the way and see what happens. This should be interesting. He said he wants me to trust him and he wants to start from scratch and try and get to the bottom of this. I guess that is fine by me. He said he really believes me that I do have the pain etc. Wants to see if I get red and have any swelling off the drugs, hmmmm. Good thing my internal med doctor gave me a truckload of percocet as I may need it. I feel as if I am back at square one again and wondering if maybe I really am nuts afterall. Well, I will be glad to get off the toxic drugs and lose some weight. I will let you know how my drug experiment goes. Hope I don't have to find another support group now that I am attached to you all!!! Lynn --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.525 / Virus Database: 322 - Release Date: 10/9/2003 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2003 Report Share Posted October 15, 2003 Hi Lynn Boy! Do I know how all THAT feels! You've got this, you've got that, blah blah! Endless!! I agree with C 1 that thank goodness you've got a doc that still wants to find out what's going on. I'm in EXACTLY the same situation, waiting to go into hospital for goodness knows what other tests as the doc is questioning his AOSD diagnosis. Talk about a rock and a hard place! GOOD LUCK with the coming off the drugs. I'm down to 5 mg pred with few problems except now I'm on Beta Blockers and the old stomach pain is back. I can live with that to come off the steroids though. I look forward to hearing what happens next with you! Love Caroline 2 On Wednesday, October 15, 2003, at 12:59 AM, Lynn D wrote: > HI all, > Saw the new Rheumy today. I was really impressed with the time he > spent with me. He said he was going to take all my records home and > call me tonight. Well, he just called and he said he wants a ferratin > level on me as that is a must for Stills. Also, just does not think > there is any evidence for Stills. He wants me to stop the MTX and > come off the prednisone all the way and see what happens. This should > be interesting. He said he wants me to trust him and he wants to > start from scratch and try and get to the bottom of this. I guess > that is fine by me. > He said he really believes me that I do have the pain etc. Wants to > see if I get red and have any swelling off the drugs, hmmmm. Good > thing my internal med doctor gave me a truckload of percocet as I may > need it. I feel as if I am back at square one again and wondering if > maybe I really am nuts afterall. Well, I will be glad to get off the > toxic drugs and lose some weight. I will let you know how my drug > experiment goes. Hope I don't have to find another support group now > that I am attached to you all!!! > Lynn > > > > > > > > > > --- > Outgoing mail is certified Virus Free. > Checked by AVG anti-virus system (http://www.grisoft.com). > Version: 6.0.525 / Virus Database: 322 - Release Date: 10/9/2003 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2003 Report Share Posted October 15, 2003 Lynn, I am glad you have found someone who is willing to take a closer luck at things. You dont need to leave us though.. As for ther Ferratin (sp) I dont think mine was high either. But I have all the other symptoms. Fevers, rash, sed rate, high cbc, etc.. Everything will be okay, try not to stress over all of this, as we all know, it will only make things worse.. I am here if you ever need to talk.. Luv ya and miss talkin to ya.. Take care Kelley in Colorado Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2003 Report Share Posted October 15, 2003 Bye Lynn good luck, have a nice life...... Of course you don't have to find another group!!!! We need you here. I need you here to keep me in check. I am glad you don't have Stills and also glad you have met someone who is willing to do the work and get to the bottom of this. Coming off the meds is probably going to be rough so you be sure to use us to vent or whatever ok kid? I will dancefor you when it stops raining! , G.otF.M. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2003 Report Share Posted October 15, 2003 Dear Lynn It sounds like you have a caring Dr. Let's hope he can help you unravel the puzzle. Blessings Heidi I don't have Stills HI all, Saw the new Rheumy today. I was really impressed with the time he spent with me. He said he was going to take all my records home and call me tonight. Well, he just called and he said he wants a ferratin level on me as that is a must for Stills. Also, just does not think there is any evidence for Stills. He wants me to stop the MTX and come off the prednisone all the way and see what happens. This should be interesting. He said he wants me to trust him and he wants to start from scratch and try and get to the bottom of this. I guess that is fine by me. He said he really believes me that I do have the pain etc. Wants to see if I get red and have any swelling off the drugs, hmmmm. Good thing my internal med doctor gave me a truckload of percocet as I may need it. I feel as if I am back at square one again and wondering if maybe I really am nuts afterall. Well, I will be glad to get off the toxic drugs and lose some weight. I will let you know how my drug experiment goes. Hope I don't have to find another support group now that I am attached to you all!!! Lynn --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.525 / Virus Database: 322 - Release Date: 10/9/2003 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2003 Report Share Posted October 15, 2003 Dear Lynn It sounds like you have a caring Dr. Let's hope he can help you unravel the puzzle. Blessings Heidi I don't have Stills HI all, Saw the new Rheumy today. I was really impressed with the time he spent with me. He said he was going to take all my records home and call me tonight. Well, he just called and he said he wants a ferratin level on me as that is a must for Stills. Also, just does not think there is any evidence for Stills. He wants me to stop the MTX and come off the prednisone all the way and see what happens. This should be interesting. He said he wants me to trust him and he wants to start from scratch and try and get to the bottom of this. I guess that is fine by me. He said he really believes me that I do have the pain etc. Wants to see if I get red and have any swelling off the drugs, hmmmm. Good thing my internal med doctor gave me a truckload of percocet as I may need it. I feel as if I am back at square one again and wondering if maybe I really am nuts afterall. Well, I will be glad to get off the toxic drugs and lose some weight. I will let you know how my drug experiment goes. Hope I don't have to find another support group now that I am attached to you all!!! Lynn --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.525 / Virus Database: 322 - Release Date: 10/9/2003 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2003 Report Share Posted November 1, 2003 Lynn and , I just thought that I would tell you my ferritin level with my onset, Hold on to your pants and you might want to sit down. 70,000 the doctors were saying that is the highest ever recorded and that there would be reports and stuff written about me. I came days away from dying with my onset. Just that I would let you know, Take care Love and Support, Keri In CA Jay <gobulldawgs@...> wrote: Lynn, I understand where your doc is coming from on this, sometimes withstills they need to stop the pred and see what the disease will do, they didthat in my case with the fevers, stopped all meds and 4 days later i was inthe hospital with the spiking fevers and it was only then that my doc couldmake the actual dx of still's because the pred had kept my fevers at bay fora year.Now about the ferratin, can you ask your doc to show you in writing, inmedical research where it says that you must have a high ferritin for it tobe stills. Im very, very, serious, I want to see this. From everything Ihave read, ferritin is a strong indicator but not the defining factor. Sothis is really important for me to document on the website if it has beenpublished that your ferritin must be raised to have a dx as still's. Tellhim I would like the the actual journal it was publsihed in etc.Now can you tell me what exactly are your symptoms?do your fevers spike to 102 or higher then return normal then spike againthe next day at the same time? have you had the rash, do you have jointswelling with the pain? what was your sed rate? did you have weight lossat the onset? any organ involvement?thanksJenGO DAWGS !!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2003 Report Share Posted November 14, 2003 Lynn, I understand where your doc is coming from on this, sometimes with stills they need to stop the pred and see what the disease will do, they did that in my case with the fevers, stopped all meds and 4 days later i was in the hospital with the spiking fevers and it was only then that my doc could make the actual dx of still's because the pred had kept my fevers at bay for a year. Now about the ferratin, can you ask your doc to show you in writing, in medical research where it says that you must have a high ferritin for it to be stills. Im very, very, serious, I want to see this. From everything I have read, ferritin is a strong indicator but not the defining factor. So this is really important for me to document on the website if it has been published that your ferritin must be raised to have a dx as still's. Tell him I would like the the actual journal it was publsihed in etc. Now can you tell me what exactly are your symptoms? do your fevers spike to 102 or higher then return normal then spike again the next day at the same time? have you had the rash, do you have joint swelling with the pain? what was your sed rate? did you have weight loss at the onset? any organ involvement? thanks Jen GO DAWGS !!!!! Quote Link to comment Share on other sites More sharing options...
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