Hi Everyone,
I am a mother of two ault children who have struggled with TRAPS since the ages of 16 and 20. It took years to get a diagnosis. They were both diagnosed by genetic testing in 2008. My oldest daughter struggles daily with fatigue and muscle and joint achiness, but her flares are pretty well controlled with enbrel. My youngest daughter, who is now 28, lives at home and is disabled from TRAPS. She was on Enbrel and having episodes every six weeks that would last up to four weeks. She was switched to Humira weekly injections, but she had another episode after eight weeks. She experienced fevers that came and went for ten days, along with musle pain, severe headache with pain behind both eyes, skin pain, abdominal pain, nausea, vomiting, and chronic fatigue. Basically she hurt all over. She was started on prednisone and responded amazingly well. We cried to see her able to eat again. Her prednisone dose was slowly tapered down over the course of a month. She took her last dose two days ago. Her TRAPS symptoms returned last night. Prednisone , we understand, is not a good long term solution. Her doctor is talking about starting her on methotrexate. Does anyone out there have a similar story? We are searching for answers. It is so good to connect with people who understand.
marylouise
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Living With TRAPS
- By marylouise
- Posted May 9, 2009 at 12:03 pm · 2 replies
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- By Kare
- Posted May 16, 2009 at 12:36 am
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My son is six years old. He was on Enbrel for almost three years. We have just recently begun using Annikinra to manage his flares. So far, we are working on getting up to theraputic levels at this point. There have been many reports that if Enbrel does not work, Annikinra is a better choice. My son was managed fairly well on Enbrel. His fevers were stretched out much further apart. What was not managed was the joint pain, the periorbital swelling and the headaches as he was coming up to a fever. This could go on for two months. That being said, when he did have a fever he would only need i.v. rehydration and Tylenol, rather than using narcotics to manage the horrific pain that a fever used to mean he would have. He used to have fevers every four to six weeks. He would be living a completely different life if it were not for Enbrel. I hope this information helps, please do not hesitate to e-mail if you would like more information.
Take care,
Karen
- By marylouise
- Posted May 23, 2009 at 6:04 pm
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Dear Karen,
Thank you so much for the helpful reply. My daughter feels like she is beteen a rock and a hard place. She does not like to take the prednisone, because while it make her feel a thousand times better, the side effects exact a heavy toll. When she gets off of them the TRAPS comes right back. She is always very nauseated and has trouble handling food. The prednisone at about 20mg a day takes the nausea away. It also helps with muscle and skin pain. I know that they say TRAPS is periodic, and to be sure the extreme flares with high fevers is, but she daily struggles with nausea, musle pain, skin discomfort, and fatigue. Have you found that to be the case? Thanks for the Anikinara recommendation. The doctor did mention that possibility on her first visit. Maybe we should revisit that idea. I hope your son is doing all right. My heart goes out to him and your entire family. I will pray for all of you. Thanks again.
Mary
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