Guest guest Posted June 25, 2008 Report Share Posted June 25, 2008 Hi , Welcome to the group. I see by your area code you're in or near Austin. I'm just down the road from you in San . We have another member who lives in Austin, but she hasn't posted in quite awhile. Hopefully that means she's feeling better. I've had Still's for almost 2 years now. Unfortunately, I've never been out of a flare and seem to be getting worse at the moment. I think this hot, humid weather makes me worse. I've tried almost all the drugs and think they help for awhile...but then the dragon comes back stronger. Right now I'm waiting for approval and the month to be up since my last Orencia infusion to start Rituxan. Maybe that will be my silver bullet. It will be nice to get to know you and I hope you're one of the lucky ones who goes into remission quickly. in TX Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2008 Report Share Posted June 25, 2008 Stillsdisease on Wednesday, June 25, 2008 at 6:50 PM -0600 wrote: >It will be nice to get to know you and I hope you're one of the lucky ones who goes into remission quickly. Me too! Who is your doctor- I am currently experiencing an allergic reaction to Kineret a daily injection and I would like to see someone who specializes in Still's. I wanted to tell you that I have lots of family in the Austin to San area- we really enjoy Mi Tierra's restaurant. Best wishes- Sedillo Educational Diagnostician Hays CISD Special Education Department sedillol@... phone ext. 6951 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2008 Report Share Posted June 26, 2008 My Dr is Pendleton Wickersham. He has 4 Still's patients. I don't know of anyone close by who " specializes " in Stills. It's so rare and so little is known there are probably only a handful of drs nationwide who do. There is a Dr. Cush in Dallas who has written research papers on Stills...you might check him out. I love Dr. Wickersham...he's very compassionate and caring....does an awful lot of research on upcoming medicines and has an agressive attitude towards getting the disease in check. If you'd like his number, let me know. Mi Tierra is great isn't it! Hope you're having a good day! ----- Original Message ----- From: Sedillo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2008 Report Share Posted June 28, 2008 Hi , I also had lots of trouble sleeping when I first came out of hospital. My doc said it was the prendisone. It is better now, not like pre-Stills, but better than 2-3hrs a night. I have about 5-6hrs a night now. But as for natural remedies, I didn't try anything. Yes, I have hair loss and my hair has dried out real bad. I thought it was from the MTX. I also have the hip popping sound, my doc said not to worry about it!! Sure. And from what I understand, your pred is keeping your symptoms under control, so if you drop the dosage you will get sick again. That is unless you go into remission in which case as you drop the dose, no symptoms will reappear so you can go lower & lower. But I would think that should be controlled by your rheumatologist. And you should be having blood tests I would think to monitor you. I also have three young boys and it is pretty hard to take it easy. If I vacuum the house, as I did today, I know pretty much that tomorrow I will be quite sore. Even as I am doing it the aches & pains get worse. But it has to be done! You should rest in between tasks, if possible. Try & plan activities/appts etc. spaced apart, like every 2nd day have an easier day if possible. dont plan too much for the one day. It sure is like a roller-coaster ride with this disease. And everyone is different. And it seems that there are different levels such as chronic or not so chronic. I thought when I came out of hospital I would be better in a few weeks-ha ha, 6 months later & then I read that some ppl have been suffering for YEARS. But there is a chance that we can go into remission at any time for a long time, so never give up hope. Good luck with everything & let us know how you are getting on, ok? Ask your doc lots of questions and tell him all your issues. Maybe he will put your meds up higher. Take care & hope you have lots of pain free days! Libby in Sydney :-) > > here goes to anyone who can shed some light. thanks > > I am having lots of trouble sleeping- What natural remedies do you recommend? > Is anyone having hair loss?- I lose massive amounts in the shower, when I brush or just run my hand through my hair. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2008 Report Share Posted June 28, 2008 : I'm so sorry you have to be here but it's a great family that you are now part of. Personally, the sleeping thing has always been an issue for me ever since I was a child so I can't really speak on that. Yes, there are times it's worse than others, such as last night but for the most part I only miss about an hour or two a night. As for natural remedies, don't take anything until you speak with the RD. Some of those things can interact with your meds and that's not something you want to chance. Let's talk about cleaning, however. I used to be nut about it! I was diagnosed when my son (my one and only child) was 2 years old. In a phone conversation with my mother I was crying because I couldn't get down on my knees to clean the kitchen floor. My mother said, " on your tomb stone they're going to write 'oh, she was so clean' " . That clinched it for me. After that statement I didn't worry about cleaning farther than one room a day. I still have to do it that way. I'm not talking about getting down on my knees anymore, I do what I can and that's it, just short of falling over in pain. The rest of it, my husband and son help with. By the way, my son is now 15 years old. There are days I understand why animals eat their young but for the most part he's a good kid. Honey, there are things you will learn along this journey of yours. I'm sorry there are limitations and you will find them out as you go, however, you will also find new and creative ways of doing things. As for the kids, you can employ them to help you if you make it a game. They might like it better and you'll have some fun too. Just a thought. I'm going to go lie down now. We just came home from a morning of shopping and the heat and humidity have gotten the better of me. Get some rest yourself. Take care and be well. Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2008 Report Share Posted June 28, 2008 thanks Ellen, I will take your advise and hope for the best! Sedillo Educational Diagnostician Hays CISD Special Education Department sedillol@... phone ext. 6951 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2008 Report Share Posted August 17, 2008 Hi , Welcome to the family,so sorry you had to find us,but you will be glad you did.There was never a more caring, understanding group of sick people who are willing to put thier pain aside in order to help someone who is in worse shape than them.You can feel free to vent or share a laugh or yell at the dragon.We've all done it a time or two.! lol We will share info on meds, docs etc.Again happy to have you,pull up a chair and make yourself comfortable. Elly Quote Link to comment Share on other sites More sharing options...
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