MTX a love/hate relationship
Just an update, after careful consideration and discussion with my husband and 2 of his physician friends, who are not rheumatologists but other kind of MD’s, we have decided I will not stop the MTX this year, or maybe ever. The rational is that everything is going well, except for the minor flares that occur when I am overly exhausted, extremely fatigued. The reason is that after discussion, I learned that about 50% of AOSD patients never flare again, the other 50% have continued flares. Since I have flared in 2008, 2009, 2010 and twice in 2011, this could possibly be my situation. Every time I flare can possibly be different, per the Critical Care MD where I work. He told asked me not stop the MTX. He told me about several AOSD cases he has had over the years in ICU. I asked why he never refers consults the therapy department to provide therapy for these patients, since I see most every type of patient in the hospital? He said ” because they are dying, there is no need for therapy”. He said many of the continued flares can begin to attack other organs, lucky it only attached my liver these last flares, but next time…..? I can not risk this. We have decided to continue with MTX.
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I acquired AOSD in 2008. I have suffered so terribly and have found ways to help me regain my life. This my personal journal of this mystery illness to diagnosis. I hope that I can help others with my experience and information.
Adult Onset Stills Disease 
Greetings again. I saw my rheumatologist yesterday and he thought I was doing quite well, with inflammatory markers all normal. I continue on one (1) mg of prednisone a day. He doesn’t know if it is doing anything, but since it is such a low dose, he wants me to stay on it as I transition back to part time work. He worries about the stress and fatigue of starting the new position. He said once I am stable in the position, I could then try to decrease the prednisone slowly.He wants me to continue the NSAIDS at least twice a day. He emphasized slowly with stress and fatigue as my enemies. Oh where did the energizer bunny go?!
I asked him about the residual joint discomfort/ache I have in my wrists, left knee and hips, especially right buttock. Not all the time, but there. He said that the flare, even after a year, has left the nerves fairly sensitive and will probably always remain that way. He also said the occasional rash on my forearms and right check (no fever or other signs) should be a warning that I need to rest.
This is such a weird disease. I still struggle with the idea of this life changing thing can rear its ugly head anytime and once again change my life. Acceptance comes slowly…but it is coming.
I turn 60 tomorrow and feel so blessed to have been given this group to be with and share!
Hello Patty, Happy Birthday!!! I hope today you have zero pain and can walk with bounce in your step! Wishing you years of healthy and pain free days filled with joyful moments!
I completely agree with your Rheumy, stress, fatigue, exhaustion are the triggers that leap in action when we over tax our body. Im completely with you on the feeling that this is strange and nonsensical disease. I am hoping healing will come your way. It took a few years, but it did arrive. Sending positive healing vibes your way!
Have a lovely day, Happy Birthday Patty!!
Patty, I am slow checking my email this past week–I hope you felt well and enjoyed your birthday! I really appreciated you sharing the insight your doctor had on the nerve sensitivity in the areas of your body where the disease flared the worst. It explains so much of the trouble I have still with my wrist and knees (7 years later). And he is right about the rash being a warning. At times I have taken my shirt off at night to get ready for bed and in the mirror I see that rash on my chest and for a minute I just stare at it. I know I have done too much for the day and I need to rest.
I am so grateful we have a place to share and offer support to each other. Thanks for sharing. I see my rhuemy next Tuesday. I will let you know what happens.
I hope today is a good one for you!
Jennie
I, like Jennie, have been thinking about you and actually hoping you might reconsider your decision to try to stop the MTX. As I read your recent posting, all I heard was a lot of stress over these issues and you know, stress is one of our worst enemies, I went back and read through most of your blog starting in 2008 and was amazed at the progress you have made, but also the length of time it took you to get here. I just don’t think the holidays are a good time to try to consider making big changes in your meds, if you don’t need to. I really think you are wise to stay where you are and continue to do all that you are doing to try to maintain some normal life. I wonder if we with AOSD flare more in the winter/holidays than the summer? My flare came to a head in February this year. I realize I had the complication of the adrenalectomy in May, but I am amazed at how devastating the flare was and the time to recovery. I never want to feel that bad again!
I had quite the epiphany at my last rheumie appointment this month. Somehow, I thought since I was doing so well he would tell me I might never have a flare again or even he had misdiagnosed me. I guess I am dealing with denial ;-] Yes, he thought I was doing well and decreased my steroids, cautioned me about increasing work and getting too tired and said he would see me in three months. Really a good report–but I cried the whole rest of the afternoon, realizing my life really has been changed forever. I will never be that person I was last year.
I struggle with how a flare begins. I wish you could share some of that with me. I know we are all unique, but I dismissed and ignored so much until I was really ill with swollen, red wrists and knees, rash on arms and thighs, the horrid chills and fevers, and my liver and kidneys beginning to be effected and I was anemic. I just don’t know “the warning signs” if there are any.
I pray that you are comfortable with your decision. Your husband’s friends advice and stories are reminders of how devastating our disease can be. Lest we forget…
Patty
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Patty, thank you for thinking of me. It means so much to me that we can all share our experiences here in this forum. I am so very sorry you cried and felt that way after your appointment. It took me a long time, as you have read in this journal, for me to get to where I am today. I pray, that you will arrive at the same place where you will not need the steroids any longer. As I began writing your response, I felt that my blog was missing a detailed outline of a relapse episode. Unfortunaely, as you read through it, once it starts, I can not stop the progression, and I must continue through the pain. I wish, I wish, I wish, that once I saw the signs they could be stopped with high steroids but with me, for some reason it can not, it must run its full course. And this is the reason why it is so devastating to me. So, my next post will be about this horrible ordeal. Thank you for the inspiration. I feel that since I have done well now for 2 years, I have somehow almost forgotten the devastation it does on my body, mind and soul. I will be writing the next post about the signs of a relapse, the way my body starts. I will post the sequence of my relapse. Maybe it will also help others recognize they are not alone. Thinking of you. stay well.
It is sobering to read this blog. I was diagnosed in October of 2006. I was in pretty bad shape as they had been trying to figure out for 4 months what was wrong with me. All my symptoms finally hit a crescendo with chills, fever, rash, swollen joints and muscle pain that made it hard for me to even breath. I laid on a nice hard gurney that night as all the hospital beds were full–very uncomfortable when you are shaking so bad from chills, yet have a fever of 103 and every part of your body hurts. I did want to kiss the rheumatologist who came in the wee hours of the morning and asked if I had ever had a CT scan of my abdomen to which I replied “Yes. It showed that my spleen was enlarged.” Her reply–I know what you have…ASOD. It took over a year to get my meds adjusted to a level that kept the rash, chills and swelling away. I took Enbrel for probably 18 months. I eventually got off that and the prednisone and now take 8 MTX a week, plaquenil each day and then folic acid.
I seem to average a bad flare every 2 years. It usually starts with a rash across my chest. It is so clear in my mind when it happened 2 years ago–I was taking off my shirt to get ready for bed and there was that awful rash across my chest. I just stared at it in a bit of shock. Always in my heart, I hold out hope that I am all better. When I see that rash, the trauma of the disease rushes back over me. The doctor had been talking about stepping down off the MTX, but that was quickly nixed.
In July of this year I had a more serious flare. After 7 years, I have learned to rest daily–every day about 12:30 I sit and read and catch a nap before the children come home from school–but have found it hard to get enough sleep at night or to control every stressful situation. I had 6 children at home when I was diagnosed, my youngest was 1 1/2 and has Down syndrome. My oldest 2 are out of the house now and those remaining are 16, 14, 11 and 8. My family is a great support and my husband and children recognize when I am having a bad day and are great to make me sit and rest while they take over what may need done. It was bad timing that I thought I could step down to 6 MTX over the summer because this summer our family dealt with a very stressful situation and I knew it was going to take a toll on me. At the end of July, the chills and fever started and I had difficulty walking. For at least a week, I felt like I couldn’t get warm–like ice water ran through my veins. I had to put the heating blanket on my bed in order to get warm. My joint problems are always my knees and my right hand/wrist. I have a cane I used often in the first year after I was diagnosed to help me walk and maybe once a year I have a day I need it again. But this time I use it several times a week to get around the house. Here it is November, and though the debilitating chills and fever have stopped, and only a couple spots of rash are on my chest, my joints are not recovering.
My rheumy quickly put me back on the full dose of MTX. My legs just aren’t doing very well. I have a theory–let me know what you think. My joints were in very bad shape by the time they diagnosed me, my right hand was “frozen” in a half cupped position and I couldn’t move any part of it. My knees were so bad it took 2 months for me to even be able to do a couple of stairs (thank goodness our master bedroom is on the ground floor!) I feel over the last years, that even if they are not swollen, they just don’t work as well as they used to. I feel like I have an “old war wound” as my hand hurts if I chop too much in the kitchen or scrub the tub (my husband has taken over cleaning the bathroom:) I find myself stretching my hand and knees out when I first wake up and several times during the day as they stiffen up when I am not using them. This last relapse seems to have taken a real toll on my legs. It worries me. Do you feel like your joints have never really recovered from the initial onset of the disease? This last flare has finally helped me realize I will deal with this for life. My body will never be the same again. Patty, it makes me cry too when I realize this is not going away. I have to take this seriously, even when I get past this latest flare. I have always thought I could beat this disease. But it looks like my best approach is to assume it will never go away and I need to plan my days better so as not to get so run down.
I’ve been fortunate that my husband has always had a great job and I have chosen to stay home with my children. I love caring for my family! Cooking/baking is my favorite and I not only do it for my family but love doing it for my friends as well. It is my passion and I love reading cookbooks and trying new recipes. But being a mom is demanding and hard on me–I can’t always control the stressful situations or get the rest I need. Our youngest son has several other diagnosis that complicate having Down syndrome. The doctors at Cincinnati Children’s Hospital always comment on how unique our son is. Those kind of situations stress me out! Do any of you have some good relaxation techniques that you use to help you?
I am so grateful for this blog. It is theraputic to share (: Thank you for letting me share and for the support it provides to me–I am not a lone. I hope you all have a wonderful Thanksgiving! Take care of yourselves!!
Oh Jennie! I feel so terrible for you. I read your message twice, absorbing the emotion I feel in it. I wish, I wish so much I could make your stills go into remission and stay there. I have been stable 2 years , no steroids, just the MTX. I only use steroids to rein the whole thing back in after it rears its ugly head. I then start on high steroids and high amount of MTX then taper, taper, taper to where I am now 2 pills each Sunday eve. (5mg). To your question regarding my joints, the only area that I feel a stinging pain is in my right hip. When I get stressed, overly exhausted, emotionally overwhelmed, my right hip will feel painful for 2 days, once in a while my right foot. Strange, though that when I would flare before, the hip region is always the last area I would feel joint pain. It seems backwards, but not much makes sense about this disease. It sounds like your emergency department experience was similar to mine. I am sorry you had to go through that too. I was admitted around 11:30 but the tests started right after that. On the gurney down to the CT Scan dungeon, then the blood draws every 4 hours, then lumbar puncture, etc etc,etc… It was horrible. It was so cold and I was already shivering, all they gave me was a sheet. I cried that I was so cold. You have a lot going on at home. I listened to you when you said you take a nap and rest each day. I am making myself rest each day for 1 hour. I can not imagine how you keep up your pace with the small kiddos at home. You are truly a power horse! I am glad that your husband is helping you at home. Maybe a part-time house helper in trade for your baking skills?! Just an idea to ease your house keeping chores!
Before I ever had stills, in my other life, I was a power horse. I worked 6-7 days a week for the sheer love of the hospitals, I would run 5 miles a day each day after work, skip ripe for an hour afterwards and go out with friends. That was 5 years ago. I know that age also creeps up, but I know deep down that I could never endure the work schedule alone that I used to crave. Whenever I work more than 3 days in a row, I need 3 days to recuperate or I begin a rash, that ridiculous rash, like a flare gun staying stop everything. Along with that the teeth chattering. When I first started recovering from my illness, I was naive. I picked up the jump rope, held it my hands, flung it over my head and I stepped over it twice. I cried for several hours afterwards realizing how weak I was. I started to walk down the hall of my house a goal of 3 times in 5 minutes, eventually 6 months later I walked to the pool in the facility in our community. I walked across the pool twice. It took over a year before I could endure 15 minutes on the stationary bike. I am at a point that I can take a yoga class, I have been jumping rope, I take zumba. I work out too aggressively sometimes. I am at point stable with the MTX (5mg a week) that i feel more or less normal. I come home elated from the gym and I feel great. But sometimes as soon as I walk in the door, my husband points out a rash on my neck and collar bone and sends me to the couch or if I start to teeth chatter I must go to bed with a heated blanket. But I know this only means that a fever is in progress and I will drench sweat in about 4 hours. I know the routine. I hate this. I keep hoping that I will somehow regain the stamina I used to have. I miss my old energy level. I hope so badly that you will soon stabilize, and we can celebrate your well-being and wonderful health! Wishing you a wonderful Thanksgiving holiday!
I have been thinking about you this week wondering how you have been doing. I think you are doing the right thing by staying on the MTX! I tried to step down off mine over the summer and had a terrible flare in July of which I am still trying to recuperate from. The doctor put me back on my full dose of MTX and then I had 6-8 weeks of nausea as my body readjusted to the dose again. When things are going well then stay the course. I am glad you and your husband consulted other MDs and made a well founded decision. I am afraid I also fall in that 50% that will deal with AOSD for the rest of my life. It brought tears to my eyes to read about those who do ultimately die from this disease. I have heard that before, but haven’t thought about it for a while. And I am with you–why take the risk? Despite all, we have so much to be grateful for this time of year (: Especially great husbands and families and friends who love and support us, I hope you have a wonderful Thanksgiving!
Jennie I agree with you, we have so much to be thankful for. I was wondering what year were you diagnosed? I was given the diagnosis 2008 and flared each year several years after wards. How many times have you flared? Has your md tried to wean you off MTX several times? Im curious be a use I was wondering if an Indy has had success being in the other 50%, as we appear to be. I’m not thrilled about staying on the meds but I am eager to do my best to never flare again. It’s hard to describe to people what a flare entails. I try to explain to people who don’t have an auto immune disease, let alone AOSD,but it always pales in comparison to the real torture we endure when it happens. I’m so thankful you are there to understand. Have a lovely Thanksgiving Holiday my friend. Please stay healthy 🙂