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kerri123
@kerri123

Posts: 1
Joined: Jan 09, 2017

Stills Disease

Posted by @kerri123, Jan 8, 2017

Was diagnosed with Stills Disease about 4 years ago. What recommendations do you have for treatment? Currently on plaquenil and tramadol and have had no relief. My main concern is my joints are breaking down. Knees and ankles. Had a knee replacement at the age of 28 and I am now 40 and looking at needing ankle fusions.

REPLY

Hello @kerri123,

Welcome to Connect. This type of inflammatory arthritis must be terribly painful! I’m glad you’ve come to Connect to seek some answers.

Here is a link to Mayo Clinic’s page on various treatment options for Stills Disease: http://mayocl.in/2iVvA1b; you may also wish to view this video: http://bit.ly/2j0zKHx
While it does not directly apply to ankles, Connect has a recent, relevant discussion about stem cell treatments as well: http://mayocl.in/2jvI5Uj

Although I couldn’t find any members who’ve discussed Stills Disease specifically, I’d like to introduce you to a few members who may be able to provide their thoughts and recommendations as they have experienced similar symptoms. Please meet @janetdh, @lynettegable, @leonardwolfer, @zildjiangirl, @annie1393, @ginnyd, @billindc, @laurenesquivel @kareniowa, @gwenie, @shellsk24, @gene47.

@JustinMcClanahan, could you provide some insight for @kerri123?

@kerri123, I’m sure the pain must inhibit your movements; how have you coped thus far? Have you discussed switching medications with your doctors?

Kanaaz, thank you for tagging me.

@kerri123, although I am a Connect moderator, I do have very similar experiences of my own as yours. I suffer from severe Hemophilia, a genetic bleeding disorder that prevents my blood from clotting on its own. As a result, I had countless internal bleeding episodes in my joints growing up. A bleed is when blood pools in a joint caused by some sort of physical trauma. As a result, I developed arthritis in my right knee at age 9. I then overcompensated and developed arthritis in my left ankle by 12, then in my right ankle shortly after.

I had my right knee replaced when I was 19, and more recently I fused my left ankle in December of 2014. I still need to fuse my right ankle. I am an interesting case, because my recovery from the knee replacement was slow. I had aggressive scar tissue formation that made my knee lock up, resulting in two manipulations to break it loose. Ultimately, I gained 0 to 95 flexion when I played football with my friends, landed on it awkwardly, and popped it loose on my own (NOT RECOMMENDED 🙂 ). All that being said, once I got to 0 to 95, my knee pain has been non-existent for the last 12 years and the amount of misery I was in before seems like a distant memory.

Fusing my ankle was another story, much more difficult and a much bigger testament to my patience, determination, and resolve. Recovery is slow because you are in a cast and can’t bear weight or even have it rest on the floor for 3 months. The first 4-6 months is difficult, because unlike a knee replacement, there is no physical therapy to focus on. It really is a waiting game while your body completes the natural bone fusing process. Pain is relative from patient to patient, but I was told the pain I experienced was far more severe than any other patient they have had, possibly as a result of my Hemophilia.

Here are my questions/suggestions as fellow patient and not as a moderator or medical professional. If you are physically active, you have to weigh pain vs. mobility. I am an extremely active person, which contradicts my arthritis and Hemophilia but that is another story for another day. I waited until the pain and swelling that resulted from being active was so severe that I had no options left. By fusing my left ankle, there are things that I had to give up, like playing ultimate frisbee or even the ability to take quick steps or jog after something. Even though those activities hurt and resulted in swelling that may prevent me from walking after, I still found those activities gratifying. But I reached a point I couldn’t fight through the pain and swelling anymore. So, with your physician’s guidance of course, you need to ask yourself if there will be things that you have to give up in order for less pain and swelling. I can say now, that I have zero pain in my left ankle, and I actually have less pain in my right ankle which has end-stage arthritis because my left ankle can take some of the impact of walking. Prior to fusion I tried things like Celebrex, but ultimately when you have lost cartilage and are at end-stage arthritis, I found there is nothing that truly helps except moderation, adaptation, and perseverance.

Kerri123, I hope this helps provide a little about myself and some insight on what to expect with an ankle fusion. I am also a big advocate for finding ways to stay fit and active through adaptive exercise and sports. Feel free to ask any followup questions. I have plenty more to share but this post is already a bit daunting!

I had Stills Disease as a child, so my experience may not be helpful to you as that was around 1980. I was on prednisone for a short time only because they were afraid it would interfere with my growth (I was 12), gold shots helped and finally what helped the most was tolectin. This is an anti-inflammatory that I believe is still used. The disease died down as I went through puberty but it took about three years after that for me to feel like a normal kid. Today I don’t show signs of it but I do have lupus.

Welcome to Connect, @cathyh,

Thank you so much for sharing your history and for the information, as I’m sure @kerri123 will appreciate it, too.

May I ask, when were you diagnosed with lupus? We have a few groups and Connect members talking about lupus; let us know if you would like to join in with questions, insights, or suggestions, and I’d be more than happy to introduce you to them.

@kanaazpereira

Welcome to Connect, @cathyh,

Thank you so much for sharing your history and for the information, as I’m sure @kerri123 will appreciate it, too.

May I ask, when were you diagnosed with lupus? We have a few groups and Connect members talking about lupus; let us know if you would like to join in with questions, insights, or suggestions, and I’d be more than happy to introduce you to them.

Jump to this post

Hi, kanaazpereira. My name is Cathy Hutcherson. I’m very new to Mayo Clinic Connect. Not sure where to go or how to jump in. Any help is appreciated. I also participate in the Lupus Foundation’s Message Board and occasionally on the My Lupus Team website. I find I have some information to share, but my case is different in many ways from those who share on My Lupus Team. The Lupus Foundation’s has dedicated members who have severe lupus as I do.I’ll share some of my history and where I am now. As you know I had/have Stills Disease. My symptoms from that were pretty much over by the time I reached 16. When I was 17 I was diagnosed with bipolar disorder II. I went through many years dealing with depression and mood swings. I went back to in my late 30s. I finished my bachelor’s at 40 and my master’s in Social Work a few years later. I was having fatigue and chorea at that time but the symptoms weren’t strong enough for a diagnosis. In 2013 I was diagnosed with Parkinson’s Disease due to the chorea. This was incorrect. My rheumatologist diagnosed me with SLE in December 2014. I was almost 45 at the time. I was only able to work as a social worker for ten months in 2013. My memory problems, confusion, chorea and fatigue made the job impossible. I tried a few other things that didn’t work either, so here I am. I haven’t been able to work in over two years. I have a very supportive husband who works for BJC. BJC owns Barnes-Jewish Hospital, affiliated with Washington University. I’m fortunate to have all of my medical care through them. They have been wonderful.My diagnoses include asthma, Stills Disease, depression, bipolar disorder, GERD, fibromyalgia, sciatica, scoliosis, DDD, SLE and lupus cerebritis. The cerebritis is my main problem. I have been on the oral form of cyclophosphamide since last June for that. Mycophenolate and azathioprine did not work well, so cyclophosphamide was next. It has helped but it took seven months before I could tell a difference. My rheumatologist is weaning me off of it now, with the idea I will be off of it totally by the end of June, making it a one year treatment. Since it has helped I have mixed feelings about that. He has told me he will use prednisone for any lupus problems. Of course it is unknown what will happen with the lupus in general and the cerebritis. The cerebritis has been confirmed by several brain MRIs and a lumbar puncture. I have a brain MRI every six months. I have had neuropsychological testing three times. Most recent was February of this year. They have shown a trend of verbal short term memory decline and brain speed. Another thing that is unusual about me is that I am ANA negative. I have always carried a positive dsDNA and that is what my diagnosis is based on. I have studied lupus and in particular cerebritis. Many people think I have a medical background, and I do have some training and experience as a foundation but the rest I have learned on my own. I joined the Brain group because right now it’s therapeutic for me to talk about my cognitive problems. Almost no one in the lupus group has this and many think they have it because they experience brain fog but this is not brain fog. It is permanent scarring on my brain caused by inflammation due to lupus. My rheumatologist says the best we can hope for is to slow the damage. I find that very scary. You can introduce me to the lupus group/s but I don’t promise to join in the conversation very often. Right now I’m more overwhelmed with the brain part. Thanks for listening.Cathy Hutcherson

Hi @cathyh,

I am so amazed by your strength, and motivation to pursue your health, despite some hefty challenges; thank you for sharing your story.

You’ve posted your message in Connect perfectly, and if you would like to learn more about how to use Connect, you will find detailed information here: http://mayocl.in/2gkzikX
It has everything you need to get started, and to help you navigate through groups and discussions.

We’re glad to have you here, @cathyh, and I know that @colleenyoung, Connect Director and moderator of the Brain & Nervous system group, will be happy to introduce you to other Connect members so that you can share experiences, and know that you have a community here to support you.

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