Question:
Hi Everyone, I just ran across this forum and I’m so happy I found it! I have Stills disease. I didn’t see anything about it below, does anyone else have it? Basically it is a systemic form of juvenile arthritis. I developed it when I was 3. I am 28 now and I have arthritis in many joints and I have complications in some organs. I’m fortunate to have wonderful rheumies who work with my other docs. I am taking 30 of prednisone each day and 17 of methotrexate per week and clinoril twice daily. I’m wondering if there are other people out there with Stills and how are you feeling and what meds are you on? I also take many meds for the different organs which are involved. Are there others out there with organ problems? With or without Stills… Also taking Darvocet, Vicodin and Tylenol 3 (obviously not at the same time!) but would really prefer stop. Has anyone found anything out there that is non narcotic that helps for pain? I heard of something that begins with an "I" I think…does anyone know what I’m talking about? I’m taking Clinoril for inflammation, does anyone else use it and what do you think? I’ve been using it for a couple of years and it seems to work okay, but there is room for improvement… Thanks so much for your help and I look forward to getting to know all of you. Take care, Lisa
Response:
Lisa-So glad you found us. So sorry you needed to. I dont have the same form of arthritis that you do, but I am sure someone will speak up who does or at least shares some meds with you. Welcome aboard. Take your shoes off and climb into the sandbox with the rest of us. We have a lot of fun here, but we also discuss issues that are relevant to us all. If you are having a lousey day, we can help cheer you up. If you have questions, we have somebody here with the answer, or someone who can tell you where to find the answer you need.. Jump right in. You will soon feel at home. If you look thru the postings, you will find one labeled "Tips for Newbies". This contains lots of valuable information, plus links to websites that have very valuable information. Again. Welcome Char Le Fleur
Response:
Hi Lisa, Welcome aboard!! Glad you found us! I dont have Still’s. but run of the mill RA, so i can’t give much advice there! I see your on AOL. We have a very good support group there for all forms of arthritis. The next chat is tomorrow night at 10pm EST and you might wanna stop in if your on. If you want the rest of the schedule….just let me know. Keep Smilin’ ~krissy Vist my web page at: http://members.aol.com/KrissyJo/RA.html "The most thoroughly wasted of all days is that in which one has not laughed." Nicolas Chamfort
Response:
Hey Lisa, welcome aboard! I’ve had them all and then some. There’s a new drug called Ultram out that some people like. You might ask your doctor for a sample. My PCP (Primary Care Physician?) likes me to use it alternatively with Percocet, Vicodin and the narcotics. Bruce W. – Hide quoted text — Show quoted text ->Also taking Darvocet, Vicodin and Tylenol 3 (obviously not at the same time!) >but would really prefer stop. Has anyone found anything out there that is non >narcotic that helps for pain? I heard of something that begins with an "I" I >think…does anyone know what I’m talking about? I’m taking Clinoril for >inflammation, does anyone else use it and what do you think? I’ve been using >it for a couple of years and it seems to work okay, but there is room for >improvement…
Response:
Welcome Lisa, Wow. Since you were 3??? That’s so young. You have so much experience and wisdom ~ I’m glad you are here are hope you are willing to share with us. I have inflammatory polyarthritis, so I don’t have any info to share with you on Still’s. Just wanted to say welcome, we’re glad you’re here! Barbara Joy — He who refreshes others will himself be refreshed. Proverbs 11:25
Response:
hi,there is a adult still’s support her,,i have still’s also,,so please subscribe to this mailing list and you will meet a great group of people..most of us like you had never been in touch with another with this so we have a good time..hope you will subscribe..just send in a intro letter and you will recieve a warm welcome,so please join us…still’s is very different from ra as you well know..we help each other a lot.. joyce irving
Response:
hi lisa,sent other message to the wrong person..there is a support group for adult still’s.so please subscribe to the following mailing list,,send in an intro and you will recive a warm welccome,we have a good time for we know just what you are going thru..hope to hear from you joyce irving
Response:
FishnDooz wrote > how are you feeling and what meds are you on? I also take many meds for the > different organs which are involved. Are there others out there with organ > problems? With or without Stills…
Er, something completely unrelated to an arthritis (I’ve got OA, but not any of the inflammatory arts) – a general auto-immune poly-glandular syndrome that I’m still trying to find info on. It’s an auto-immune problem, but one that doesn’t involve the joints (I’ve got IDDM, Hashimoto’s Thyroiditis, Vitiligo and Sjogren’s. And Fibromyalgia.) > narcotic that helps for pain? I heard of something that begins with an "I" I > think…does anyone know what I’m talking about? I’m taking Clinoril for > inflammation, does anyone else use it and what do you think? I’ve been using > it for a couple of years and it seems to work okay, but there is room for > improvement…
Indocin? I was on it many years ago for about a couple of months, it was supposed to be better pain relief than Motrin. I’ve been on Clinoril now for about 4-5 yrs on and off, it’s supposed to be the easiest on the kidneys (with the diabetes, I’ve got a very, very, small amt of kidney damage that I’m a little paranoid about). — eeyore (Due to spam, my return address has been slightly altered. Just take out the obvious.)