Fragments of episodes of
I have parted with my current Rheumatologist. He just seemed more interested in his residents that follow him. He is a nice man, however, just didn’t seem interested in my health, medication or anything, unless I flared, which is good and bad. So since I have been stable without a major flare since 2011, he demanded that I stop the MTX. I have had mini-flares these past few years with minor rash at my neck area, minimal teeth chattering, some minor joint swelling, but not to the point of high fevers and debilitating pain requiring steroids since 2011. So he said he would not continue to see me unless I went off all meds. Seems strange, I felt. I gues, I was becoming a boring patient, just not exciting enough. So,I have a new appointment with a female Rheumy next week.
I do not have a real problems at this point, but a couple of irritating fragments of yesteryear’s flares. I have 2 joints, in my foot that flare when Im very exhausted. The bone grows bight red, burns and I must stop my activities for the day. This same stupid bone used to be so painful when I used to flare. Other than this, my left knee clicks. When I used to flare big-time, the left knee would “lock-up” during a major flare and when I would try to bend it during sleep, I would scream from the pain. Left shoulder would also lock up. Only minor pain at strange times.
My desire would be to get off of the 2 MTX I take weekly, but my fear is the relapse. If Im doing so well right now, why risk it??
Just wondering if my old Rheumy was right…..should I take a chance to see if I can manage without it……the fear of relapsing paralyzes me. I heard a patient died of AOSD last month in the hospital where I work. Again, as the others, her Rheumy kept pulling her off her meds when she was stable and each flare was worse than the previous. This frightens me so much….
Stay healthy my freinds,
Claudine
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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 
Claudine, I know exactly the struggles you are going through. I tried to go down on my MTX last summer and it did not go well; the doctor had to raise my dose. I think we each suffer from post-traumatic stress syndrome when it comes to this disease. It has been 7 years since I was diagnosed and the memories of how sick I was and how much pain I was in is still so clear in my mind. Even now, the lingering effects of joint pain and limited energy control so much of my life. With that said, I also don’t want to live in fear of this disease. We don’t have a lot of control over this disease, but I bet we can control our fear of it. How do we do that? I am not exactly sure myself. But I try to not let fear be a guide in my life when I have decisions to make. You and your husband should make a list of pros and cons of going off the MTX. Patty also has a good suggestions–what does your gut tell you? Try to keep fear off your list of pros/cons. Fear is stressful. I would put “Negative reprecussions of a flare” on the con side–and that is not fear, but a legitimate concern.
I also have to practice what I preach (: I am glad we have each other to share our worries with (: I hope your new rhuemy is good. I believe even the best doctor though cannot fully understand a disease they have never had. They do not understand the full emotional and physical aspects of dealing with a disease that has no cure. That is why you really need to talk with your husband and make a decision together–take a step back and get a good look at the problem. You will know what is best for you. Chin up (: I hope the sun is shining where you are Claudine– It always lifts my spirits.
Jennie, thank you for your insight. And you are correct, fear of a relapse should not be the only reason to attempt stopping the MTX. I guess since I have had many relapses, I feel I should know what to expect. I wish this was true though. I must admit that the fear is the possibility that the next relapse will not be the same as the rest of them that we were always eventually able to reign in and control. As they say, a little bit of knowledge is a dangerous thing. Working in the hospitals has exposed me to more than I ever thought I would see, especially hearing of the cases that do not end well. I sometimes wish I never knew this possibility. I will have faith. I will discuss this with the new Rheumy this next week on Thursday. I will try to go off this one last time. If I flare again. I promise you, and everybody, that I will never go off the MTX again. Although I said this the last flare too. :-(. Thank you for being there Jennie. I truly feel connected to our circle to have the ability to share. So many years I kept this journal going never knowing if anybody read it or could understand this situation. Stay well my friend
Claudine, I think you are very brave, by the way! You are right–you have the added disadvantage of working in the hospital where you see outcomes that are not encouraging. You have learned a lot along this journey which means you can make a good decision about what is best for you. Staying on the MTX doesn’t have to mean you are doing it our of fear, but out of knowledge from what you have learned about how your body reacts without the meds. For me, I have to look deep down inside and make sure fear is not at the core of my decision. There are so many unknowns about this disease. It is a learning process for all of us (:
I just want you to know how grateful I am that you reached out to other Stills patients with this blog! We can share with each other–our fears and our successes! It is very theraputic for me! I will keep you in my thoughts and prayers this week!
Hugs
Jennie
Oh Claudine, My heart aches for you. I know it must have been difficult, but I am glad you have the strength and wisdom to do what you need to for your on going health. I understand being terrified to change what is keeping you stable. We are continually learning our bodies and understand how our bodies react when life intervenes and we do become under the naughty spell of fatigue and stress. As we learn the subtle signs, for you the pains and redness and other inconsistent pains; for me mild rash on my forearms/right cheek and joint aches in the joints involved when I flared–we begin to know we need to slow down and rest. Not sure when we are having subtle signs off and on that a change in meds at that time is good…..just to see. Maybe the wee dose of what ever is keeping things in check? Your labs are good? I will be interested in what your new Rheumie thinks. Maybe a very gradual taper with close observation of inflammatory makers like sed rate, crp, and ferritan, as well as checking for anemia, liver and kidney function, may help monitor and warn of a developing flare.
Living with a chronic disease that is only controlled and never gone is in itself a terrible stress. I find I check my joints when they ache, look for the rash and wonder if the chill is because it is cold outside and not something else. Getting off meds should not be the prize for the practitioner. Yes, sometimes people are taken off BP meds for example because their BP has been well controlled and they have made significant lifestyle changes–but those changes are done with close supervision. Not a see you in three months, sooner if you have a stroke or heart attack.
So, I guess I am saying–follow your gut at this time and when you feel the time is right, then you and your physician can plan a way to do this, with close contact that can give you confidence. We just have to be vigilant, because a flare is devastating and we don’t know the residual effects.
Thank you for my birthday greetings. This time last year I was in the hospital not sure I would be coming home. I am blessed in many ways including finding this blog. I will look into the Facebook page…I just don’t get on Facebook very much.
Keep in touch and prayers, Patty
On Wed, Feb 19, 2014 at 9:36 AM, Adult Onset Stills Disease wrote:
> stillsdiseaseblog posted: “I have parted with my current > Rheumatologist. He just seemed more interested in his residents that follow > him. He is a nice man, however, just didn’t seem interested in my health, > medication or anything, unless I flared, which is good and bad. So since I > “