Guest guest Posted November 19, 2007 Report Share Posted November 19, 2007 Dear Anita, I'm not sure how to automatically post to the Stills group - I set it up with 's help, then promptly forgot how I did it. But I'm sure , or one of the others will be happy to walk you through it. I'll forward your e-mail to the group, and then this response also. My heart does go out to you. It's hard enough dealing with Stills, then not to have a supportive family makes it so much more difficult. I know that you begin to doubt yourself, seeing so much of that reflected in other's eyes. But you are SAFE HERE!!!!! We all understand what you are dealing with on a daily basis. No one will think you're lazy.... we know that it's exhaustion! There are many days when I am in bed by 2:30 or 3:00. I may lay in there and watch TV, but getting up & doing anything the rest of the day is out of the question. OK here's a web site that will help you with your family. _But You Don't Look Sick? : The Spoon Theory_ (http://www.butyoudontlooksick.com/2004/11/the_spoon_theory.php) I think has brochures that she can send to you, then you will have a tool to help you explain your disease to those around you. If not, I still have some left & will be happy to mail them to you~ Also, perhaps you could have your family read some of the postings here. There are so many people that would gladly share their stories... Please let me know how things go. Kindest Regards, Pat Austin, TX ************************************** See what's new at http://www.aol.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2008 Report Share Posted February 26, 2008 HI J, Sorry to hear about the diagnosis and the length of time it took you to get there...my first symptom was hives (the Stills rash) about 8 weeks after my baby was born but it was always successfully treated with a Medrol dose pack. It was not until January that my symptoms came full circle and a diagnosis was made. Right now I take 10mg of pred a day and 4 2.5 mg of MTX once a week, I believe your weight and severity probably play a big role in dosage. I consider my inflammation sever and an MRI shows extensive erosive damage however I now weigh under 100 lbs. so I'm guessing that is the reason for the low dose. In the beginning I always thought the hives where a key to something bigger but no doctor seemed to care to investigate. Mine would always follow the pattern of showing up late day, worst a bed time and gone in the morning. The pred is keeping them in check now but they are still there. I did talk with a lady today who was on pred for 8 years and has been on MTX for 17...gosh I hope that is not what we have in store for us but I have read posts of others who have been on it long term. Take care and let us know how the appointment goes tomorrow. Mandi Florida In a message dated 2/26/2008 4:30:58 P.M. Eastern Standard Time, jzokol@... writes: Hi: I am new to this group and I am hoping I can learn information from everyones experience. Here is my history. About 5 years ago I developed Chronic Urticaria (hives) which is an immune disorder not an allergy. Anyway January of 2007 things changed and the hives looked different, I had severe joint swellings, fevers every day etc. A biopsy was done and it was determined I had vasculitis. I tried various medications (plaquenil etc) and had terrible reactions to them and nothing was working. I had started my prednisone by now but swellings etc continued. In May a specialist determined that I had this rare condition Stills Disease. I had never heard of it. Anyway he immediately put me on 17.5mg of methotrexate and I started my journey of weaning off of prednisone. Other than side effects of all these medications I seemed to be stable until about 2 weeks ago. I had just gotten down to 6 mg of prednisone and all hell broke loose. Since then I have broken out in hives daily and am having terrible joint pain. I am still on the 17.5 mg of methotrexate. Do you think this is normal. I do have an appointment with my specialist tomorrow. I am so disappointed as I suppose all our goals are to put this thing into remission. I thought I was well on my way until about 2 weeks ago. What is a normal amount of time to be on methotrexate? Are there other medications that are used other than methotrexate? Any information would be helpful. Thank you. J **************Ideas to please picky eaters. Watch video on AOL Living. (http://living.aol.com/video/how-to-please-your-picky-eater/rachel-campos-duffy/ 2050827?NCID=aolcmp00300000002598) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2008 Report Share Posted February 26, 2008 By the way, J, have you tried doing 1/2 doses? In other words, instead of going from 7 to 6mgs, have you tried going to 6 1/2 mgs? I believe the prednisone are scored so you can cut them in half. Take care and be well. Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2008 Report Share Posted February 26, 2008 >I have done that in the past but not from 7 to 6 mg. I have upped my dose to 7 now and I'm still feeling awful. J > By the way, J, have you tried doing 1/2 doses? In other words, > instead of going from 7 to 6mgs, have you tried going to 6 1/2 mgs? I > believe the prednisone are scored so you can cut them in half. > > Take care and be well. > > Ellen > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2008 Report Share Posted February 26, 2008 Hello " j " BTW may we know what it stands for? When I was finally dx with AOSD I was on huge doses of Plaquenil, didn't work, so onto MTX first orally but it made me sick for days, then IM once a week. That was supposed to by-pass the GI. It didn't seem to make a difference, I was in terrible shape for about 4 days, then feeling better, then time for the shot and begin all over again! I was also on pred during times of major flares, in tandem with the MTX. After about a year I hit a wall on the injections and stopped it. I had/have damaged joints, and am still on pain relievers, and NSAIDS lately. I am pretty sure the dragon is coming back for a visit. The fatigue has been as awful as I remember it. It's as though someone pulled the plugs on the bottom of my feet and all the " juice " has run out..legs feel like tree stumps! I had to miss Jakes walk last night..neither one of us was happy! There's so much that has to go forward. My Counselling begins soon, and Wed is the last class and I must make it! So throw up a few prayers for me friends! Thank you! Smiles and regards Cat May the Dragon miss you and Angels find you! What doesn't kill us makes us stronger!! stills Hi: I am new to this group and I am hoping I can learn information from everyones experience. Here is my history. About 5 years ago I developed Chronic Urticaria (hives) which is an immune disorder not an allergy. Anyway January of 2007 things changed and the hives J Looking for the perfect gift? Give the gift of Flickr! http://www.flickr.com/gift/ Quote Link to comment Share on other sites More sharing options...
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