Re: Newbie

July 14, 2004

Dear Kate,

So nice to meet you! This group is filled with some fun, awesome people willing to listen and help. I should know, I'm kind of a recent new comer and already feel right at home. I started with onset symptoms in August of 2003 and was diagnosed in March 2004 so this disease is all new to me. I have been just taking it day by day. I am kind of in the mitst of ending a bad flare right now.

Are you currently under a RD'S care? or just you PCP? What was your docs thoughts on your sed rate being up? Are you feeling any Joint pain?

Carey

NJ

July 14, 2004

Hi Kate,

I'm real glad that you spoke up and let us know that you are here. Welcome aboard.

Sorry to hear that you are having problems. I can totally relate though because I am going through similar circumstances. Like you, my SD has also come out of a remission of sorts. We sound very similar. I have decreased a lot of my meds, but did get my life back enough, to go back to school. I'm hoping that this recent flare or, whatever, it is doesn't keep me from completing my education. I'll be furious with my SD if that happens. You were describing a lot of what I have been experiencing with this most recent episode. Like you, my labs were fairly normal, yet still with joint pain and swelling, tendonitis too, but little trouble with fever and the rash. Now like you, my SED rate has gone back up and ferritin levels are down again. Frustrating isn't it?

What I've figured out over the last 6 1/2 years having this wonderful stuff is that I own my SD. It's all mine, forever. I can't give it to anyone and I wouldn't want to share it with anyone either, except for you guys because we all have it anyway.We all understand here. LOL. So living with SD has become sort of an adventure with me. Here's what I figured out so far:

1.) At best I will have periods of remission with SD. It's almost like a cancer, it can put into remission, but it can always come back at any given time. SD can also go away again. (This is really my second "real" flare since my initial onset in 1998.) I'm looking forward to it leaving me and the sooner the better.

2.) I'm never going to be a 100% pre -SD. How could I be 100% again when I have gotten older. LOL. I was 39 when it started and now I'm 45 1/2. Age got to me there somewhere. Once I got this concept, my attitude really changed.

3.) When the good times present themself, I live life to the fullest, making everyday count. I do as much as I can pack into a 24 hour period because I am waiting for that other shoe to drop. We never know when the dragon will bear its head. So, this old girl, pushes it to the limits. LOL. It satisfies my need for living on the edge. I still get to live on the edge, but it's different parameters now. I've got different goals now too in life and I think maybe I've grown up in that area. I stayed mentally in my twenties for way to many years after that decade was over with. There had to be a point in life where I would grow up. Guess now is as good a time as any and I feel SD forced me into it. LOL.

4.) Most recently, I've had to accept another medication, which I've taken before and that's Mtx. I'm not liking the side effects for the 24 hours that follow my shot, but, I can tell you that I can already feel and see the difference. It's working already. I can see and feel the differences in just one week's time.

5.) The fatigue never seems to leave. It's always there. Although I will admit when I'm up and running around, I ignore it. I do have more tendency to pay attention to what my body is saying to me these days. During the time that I pay attention, if I have to rest, I will begrudgingly do so.

Headaches, I've not had much problem with. I've gotten occasional headaches, but nothing to extreme. A dose of Aleve or Advil will clear it. I'm wondering if it could be the vicodin. You might want to check it out in a PDR to see if a side effect of vicodin is headaches. For some reason I'm thinking that I remember someone saying something about vicodin and headaches. But I would check it out to be certain. I know some of the meds that I've taken did cause headaches. Which ones they were I guess I should have written them down, but didn't. There's been so many of them. I do know that I cannot take Motrin or Celebrex. My pancreas doesn't like either of them. LOL. A pity too because Celebrex is a terrific drug. I wish I could take it.

Well, you asked for thoughts and I gave you mine. LOL. I didn't mean to be so long winded. I get to writing and things just sort of flow. I'm real glad that you posted. Please don't be a stranger. Let us get to know you, please. I'm looking forward to getting to know you. One good thing I can say about SD and that is that I am really glad I found you guys. Hope this helps you some. Feel well and email soon.

Much love,

Terry

PS. Always find humor everyday. I have found that has helped to keep me sane. No matter how grim things may appear to be, always see the light side of things. That's what has helped me the most besides having Stilligan's Island to come to.

July 14, 2004

Welcome Kate;

So nice to meet new people. My brain is blank about the activity of the disease for you but I wanted to say welcome.

Melt

Newbie

Hi All!Would like to introduce myself. I'm Kate from NE Pa. Was diagnosed with Stills in 1985 after a very long hospital stay (1.5 months). I have to admit - I've been lurking on the Stills website for many years. So, I feel as though I know some of you already Thought it was time to come out of the closet in hope's I may be of some help or visa versa. Once diagnosed and proper meds were given I was under control pretty fast. When all my blood work was normal I returned to work (apx. 1 year later) and was taken off of all meds. Over the years I've had problems with swelling, tendonitis - no fevers spikes or rashes though. I always thought the swelling and tendonitis were from "just over doing it". My rhuemy put me on Celebrex - 2 daily - which seemed to help some. Insurnace would not cover it anymore so I had to stop and he put me on vicodin for the pain after trying other anti-inflamatories. Still thinking I was always over doing it. Now, I'm not so sure of my thoughts. I recently had some blood work and my sed. rate is 70. I know it's not that high but I have to say I was quite surprised to hear the news and I think my MD was surprised as well. I also find myself tired alot and having slight headaches off and on. Any one have any thoughts on this? Kate Visit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form.

July 14, 2004

Thanks for the warm welcome! It's a pleasure to met you!

Newbie

Hi All!Would like to introduce myself. I'm Kate from NE Pa. Was diagnosed with Stills in 1985 after a very long hospital stay (1.5 months). I have to admit - I've been lurking on the Stills website for many years. So, I feel as though I know some of you already Thought it was time to come out of the closet in hope's I may be of some help or visa versa. Once diagnosed and proper meds were given I was under control pretty fast. When all my blood work was normal I returned to work (apx. 1 year later) and was taken off of all meds. Over the years I've had problems with swelling, tendonitis - no fevers spikes or rashes though. I always thought the swelling and tendonitis were from "just over doing it". My rhuemy put me on Celebrex - 2 daily - which seemed to help some. Insurnace would not cover it anymore so I had to stop and he put me on vicodin for the pain after trying other anti-inflamatories. Still thinking I was always over doing it. Now, I'm not so sure of my thoughts. I recently had some blood work and my sed. rate is 70. I know it's not that high but I have to say I was quite surprised to hear the news and I think my MD was surprised as well. I also find myself tired alot and having slight headaches off and on. Any one have any thoughts on this? Kate Visit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form. Visit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form.

July 14, 2004

Hi Carey!

Nice to met you to!! I have an apt. on Aug. 2 with a new rhumey. I feel my last one just isn't for me. I would only go to him once a year and all he wanted to do was give me cortisone shots where it hurt most. I hurt all over - not just one specific place. So, I'm hoping this new doctor will do some further testing as I haven't been feeling the greatest lately. I've been with my regular MD for 20 years and I think he was surprised as much as I was regarding my sed. rate. He was just out of medical school when I got sick. I guess you can say I broke him in - hehe. I liked the way he handled my illness although it took some time to diagnose. Stills was not very well known back in '85 nor do I think it's well known today. I do believe there's more info. out there now which is a big help to those just being diagnosed. So, I never took any serious meds once all my blood levels went back to normal. As I grow older I'm finding I can't exert myself like I used to because I know some part of my body will experience serious pain. I can't even sit on my foot for I know I won't be able to walk for at least 3 days. Anyway, my MD put me on vioxx until I see the new rhumey. And have to say it is helping. I also take vicodin at the onset of joint paint. After awhile you get to know the routine very well. And yes, I do experience joint pain and well as alot of stiff joints. Not only when I get up in the morning but throughout the day.

I'm sorry to hear of your diagnoses but thing's do get better. And I truly believe taking it day by day is a very good thing. I do the same as well. When I feel good I go for it. When I hurting, I'm hurting with thoughts in mind the pain will soon be gone. It really is a vicious cycle for me but one learns to live with it. So, hang in there!!

One of the hardest parts of this disease for me is explaining to others. I'm really tired of hearing "What happened to you??" or "what's wrong with you??" when I'm limping around. Sometimes I think people don't believe me when I tell them. So, I've resorted to saying ah, it's just arthritis. Do people ask you these questions?

Re: Newbie

Dear Kate,So nice to meet you! This group is filled with some fun, awesome people willing to listen and help. I should know, I'm kind of a recent new comer and already feel right at home. I started with onset symptoms in August of 2003 and was diagnosed in March 2004 so this disease is all new to me. I have been just taking it day by day. I am kind of in the mitst of ending a bad flare right now.Are you currently under a RD'S care? or just you PCP? What was your docs thoughts on your sed rate being up? Are you feeling any Joint pain?CareyNJ Visit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form.

July 15, 2004

Hi Kate,

Sorry to hear you're not feeling so good.

I've been quite well since June and my recent blood tests were all good. However like you and others I get exhausted, sleep badly, some joint pain and get the rash most days. And this is when I'm supposed to be in remission !

So it seems there is no set pattern to this disease apart from the exhaustion.

Wishing you well.

Carole

UK

Newbie

Hi All!Would like to introduce myself. I'm Kate from NE Pa. Was diagnosed with Stills in 1985 after a very long hospital stay (1.5 months). I have to admit - I've been lurking on the Stills website for many years. So, I feel as though I know some of you already Thought it was time to come out of the closet in hope's I may be of some help or visa versa. Once diagnosed and proper meds were given I was under control pretty fast. When all my blood work was normal I returned to work (apx. 1 year later) and was taken off of all meds. Over the years I've had problems with swelling, tendonitis - no fevers spikes or rashes though. I always thought the swelling and tendonitis were from "just over doing it". My rhuemy put me on Celebrex - 2 daily - which seemed to help some. Insurnace would not cover it anymore so I had to stop and he put me on vicodin for the pain after trying other anti-inflamatories. Still thinking I was always over doing it. Now, I'm not so sure of my thoughts. I recently had some blood work and my sed. rate is 70. I know it's not that high but I have to say I was quite surprised to hear the news and I think my MD was surprised as well. I also find myself tired alot and having slight headaches off and on. Any one have any thoughts on this? Kate Visit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form.

July 15, 2004

Hello Kate im sorry that your sed rate has jumped,it does happen.Some have many years of remission then the dragon appears again,i hope it goes away soon,its been long time since i had the fevers also,and like you my bloodwork came back normal last visit with my rhumy.Sorry your insurance wont cover the meds,seems to me as if celebrex should be covered thats weird.Of course im still on low dose pred 4mgs,15 mgs MTX,and vioxx i seem to tolerate the meds ok the meth makes me tired sometimes though.You take care hope you feel better soon. d.Canada

Newbie

Hi All!Would like to introduce myself. I'm Kate from NE Pa. Was diagnosed with Stills in 1985 after a very long hospital stay (1.5 months). I have to admit - I've been lurking on the Stills website for many years. So, I feel as though I know some of you already Thought it was time to come out of the closet in hope's I may be of some help or visa versa. Once diagnosed and proper meds were given I was under control pretty fast. When all my blood work was normal I returned to work (apx. 1 year later) and was taken off of all meds. Over the years I've had problems with swelling, tendonitis - no fevers spikes or rashes though. I always thought the swelling and tendonitis were from "just over doing it". My rhuemy put me on Celebrex - 2 daily - which seemed to help some. Insurnace would not cover it anymore so I had to stop and he put me on vicodin for the pain after trying other anti-inflamatories. Still thinking I was always over doing it. Now, I'm not so sure of my thoughts. I recently had some blood work and my sed. rate is 70. I know it's not that high but I have to say I was quite surprised to hear the news and I think my MD was surprised as well. I also find myself tired alot and having slight headaches off and on. Any one have any thoughts on this? Kate Visit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form.

July 15, 2004

Hi Terry!

Thanks for the welcome and your thoughts! And yes, I do have to say we sound very much alike in most of the aspects you mentioned in your email. Age (48) is really starting to get to me as well. The combination of the SD and age (maybe menopause to) is hitting hard and I'm finally realizing that I just can't do the thing's I used to or have to do them at a slower pace. Sometimes I look at my Mother who is 74 and she has more energy than I.

I also pack as much as I can in a 24 hour day. Such as the past 2 days with cleaning up 2 rooms after remodeling. Today I'm paying with my left shoulder stuck to my side and throbbing. Even had to cancel a follow up mamo because of it. But, as long as I can walk I'll find something to do around the house as not to be bored.

Although I experience fatigue at times it's really not a hugh hugh problem. When I'm feeling tired, I as you, do push pass it and continue with my daily routine. I tend to ignore the SD and pretend there's nothing wrong with me. When I hurt I always say to myself - ah, you probably pulled something when working yesterday. Although in the back of my head I know it's not the truth.

Meds do not play a big part of my SD. One anti-inflammatory a day and vicodin as needed. You mentioned about the vicodin giving me headaches. I thought of that as well but I don't take it on a regular bases so I've ruled that out. Maybe it's withdrawal from the vicodin - hehe. I'm careful with the use of it because I don't want to get addicted. Tylenol usually does take care of it most of the time but I hate headaches! I've also thought the headaches are coming from stress. At this time I do have alot of stress in my life and sometimes I feel it's affecting me in the way I've been feeling lately. So, maybe once I see this new rhumey she'll give me some meds that will control the episodes better. I'm open to different drugs as long as they help.

As for your schooling. I know you'll finish. May not be easy at times. We all have to continue on with our lives and we do just that. I lost my job in January and did accept a position yesterday with a new company (starting 8/3). My drive will be much further that my previous job and I know not easy in the winter. I sit and wonder about how I'll drive the distance and deal with the snow/icy roads when hurting. But, I know it will all come together. And so will your education!!!

Once again thanks for your thoughts and welcome! Appreciate it.

Kate

---- Original Message -----

From: 118t@...

To: Stillsdisease

Sent: Thursday, July 15, 2004 12:30 AM

Subject: Re: Newbie