My wonderful daughter has become disabled from TRAPS

My daughter, who is now 28, seemed to be on a fast track to success. She was 24 and finishing up her masters degree. She was simulataneously taking doctorate level classes and teaching undergraduate students at the University of Texas in Austin Then one night she suddenly became very ill with a 104.5 fever, severe headache, nausea, vomiting, and excruciating muscle pain. The University sent her to the hospital by ambulance fearing she had meningitis. The test was negative for meniningitis, and the hospital diagnosed her with a severe virus. It took weeks to recover, but the headaches and leg pain persisted keeping her awake at night and making school extremely challenging. Identical episodes occurred every few months always requiring hospitalization for severe dehydration and pain management. My daughter was forced to leave school in Texas and was unable to return because her health has not been good since.
She was diagnosed at the Mayo Clinic with a periodic fever sydrome. They tested her for FMF because that is the most common periodic fever syndrome. Two months later the results came back negative for FMF. In 2008 she had positive genetic testing results for TRAPS. My daughter lives at home and is unable to work because she suffers from frequent fever, chills, nausea, abdominal pain, headaches, and muscle pain especially in her legs and feet. Also her skin hurts and the friction of her clothes on her skin is very uncomfortable. She had excellent response to prednisone at 60mg per day, but when she was tapered down to about 30 mg her TRAPS symptoms returned. She was on Enbrel before starting prednisone. Enbrel made her symptoms less severe, but she was having episodes ever 6 to 8 weeks which would last 2-3 weeks at a time. Now she is on Humira and Methotrexate. She weaned herself off of the prednisone because of the long term side effects, even though it is the only medication that brings true relief. Humira does not stop the episodes,but they are not so sever that she needs to go to the hospital. She has been on Methotrexate for four weeks. The doctor says it is too early to know if it will help.
In the mean time she lives a life of daily suffering. She feels like her dreams have been stolen from her. It breaks my heart to watch her go through all of this. You never stop being a mother no matter how old your children become. Is anyone else out there coping with the heart break of a young adult child who loses their health? It sure puts things into perspective.
ML

By bonnielynn
Posted July 24, 2009 at 10:14 am
Report post

I'm sure my Mother feels the same way you do about your daughter. I am a 46 yr old mother of 2 young children and I have recently been diagnosed with TRAPS. I have been suffering from an un-diagnosed disease for 3 yrs now and finally they think they have a diagnosis. I start enbrel next week but I have been on prednisone for 3 yrs and I find I'm fine as long as I don't go below 12 mg/day. I get an episode every 8 or so weeks and I'm always hospitilized for pain management, low potassium and dehydration. I find that since they put me on colchicine 1.8 mg /day my muscle pain has almost been eliminated during parts of the episode and definitely between episodes. Your daughter should discuss this drug with her group - it's not only good for gout (which I do not have).
As for her future - careers etc. with TRAPS - I have a different take on life now I live with a chronic illness - I incorporated my own company and I take on contract work (small projects) and work from home only when I feel well. I basically write documents from home and go into the client sites for short meetings/interviews etc. and make an excellent amount of money doing so. I also write executive level documents as a volunteer for local hospitals and this makes me feel like my contribution continues in the healthcare industry but if I don't feel well I don't feel stressed about stepping out of the activity for a few weeks. After all, no one gives a volunteer any problems when they phone in sick for a few days .... weeks.... etc.
I find a routine is very important to the chronically ill patient like myself - I wake up each morning and the first thing on my mind is "I wonder what my contribution to the world will be today". I assess my pain situation and then off I go to the gym to workout even for 15 minutes - it's worth getting out of bed and getting going. Then I get home and the rest of my day starts - planned out and always includes interaction with others - family, friends etc.
In summary, I'm trying to tell you that life is what you make of it and even with a chronic illness like TRAPS you can still have a healthy mind and a wonderful life.

By marylouise
Posted July 24, 2009 at 2:50 pm
Report post

bonnielynn,
I want to thank you for responding so quickly. I am so glad that you were finally able to get a diagnosis. Now you can put a name to your symptoms, and some how that is a comfort. It makes you feel more in control. I think that there is a very good chance that Enbrel will have a very positive impact on your TRAPS. It definately helped reduce the severity of my daughter's episodes, and for some people it puts them in a pretty good remission. I pray tha you will respond with a sustained remission. With two young children you need every break you can get. You have a very positive outlook. Hang on to that. It will take you a very long way. Your mother must be very proud of you.
Your mention of colchicine for muscle pain is an interesting thought. It would be amazing if after five years her legs could finally stop screaming at her. I have heard that the side effects can make you quite sick. Have you found that to be the case? My daughter struggles every day with nausea and it is a challenge to keep food down. Aggregating the nausea is a concern. Also she has extreme fatigue. Perhaps , though it would not be a bad idea to try the colchicine. She can ask her rheumatologist what he thinks.Thanks for the suggestion.
I wish you the very best. I am here for you if you ever need to discuss any TRAPS issues or if you need an understanding ear. Take care and God Bless You and your family.

By melinda17
Posted August 8, 2009 at 9:23 am
Report post

Hi. My 30 year old daughter has come to stay at home until(hopefully) we get to the bottom of her symptoms. She also cannot work because of extreme pain in her elbows, radiating down into her wrists and swollen hands. She is also experiencing some symptoms in her knees, ankles and feet. The lack of insurance is a problem, but hopefully she has qualified for NYS medicaid. She has had some relief from accupuncture treatments, cold laser therapy(in California) and we can't seem to find the same thing here(Buffalo, NY) Plus of course it's not covered under insurance. It is heart wrenching though, and she cries every day, just wanting to get back to her life. Who wouldn't? Do you have friends that listen and try to help? You just never think that something will happen to your children. I don't sleep well any more. She's only been home for 2 weeks, but has had the symptoms for 6 months. Good luck to you. I walk and run every day to keep my own sanity-she is able to go sometimes.

By dana_naomi
Posted August 9, 2009 at 11:10 am
Report post

This letter sounds as though it could've been written by my mother.

Last year, I moved back home (at 22), finally nearly completely disabled from my mysterious illness that - though was being treated with four immunosuppresants, ivig, prednisone, pain medications and nervous system depresants, and dxed with never ending alphabet soup of acronyms - was never, never controlled. The symptoms periodically flared, worsened, and the ratio of bad days to good ones was getting larger and larger. It was clear between the unreliability of my health and the fatiuge that caused me to sleep 12 hours a day I could never, ever have a job, much less a life, so I moved back in with my mom.

Looong story short, after 23 years of being a medical mystery, I was diagnosed with the periodic fever syndrome CAPS (likely muckle wells), but on colchicine and kineret, and have never felt better in my whole life. I'm happy to report I just moved out of my mother's house this weekend - back to new york city where I used to live - and start work this wednesday. It's so very scary, because I know I'm never going to be "healthy" (not that I ever was), but I do feel well enough to try again. I know kineret isn't used for TRAPS, but if colchincine is indicated, I whole heartedly suggest you push for it.

I hope my story gives you some hope - take it from me, a girl who lost all hope of a decent life, that it can and does get better. Good luck to you and your daughter!!

By marylouise
Posted August 9, 2009 at 6:09 pm
Report post

Thank you for your reply. I am so sorry to hear that your daughter is dealing with such debilitating symptoms. It can take a very long time to get a diagnosis, but don't give up. I am glad that she has found accupuncture to be a help. You are right. Insurance issues are challenging and medical care is costly. I pray that your daughter gets the medical help that she needs very quickly. I also pray that answers come. Your daughter, like mine, is far too young to be disabled from illness. For a mother, it is like a knife through the heart. Nothing hurts more than seeing your child suffer, even when they are adults. I hope that this illness leaves your daughter as mysteriously as it came. You are in our prayers. Please keep us posted.

By marylouise
Posted August 9, 2009 at 6:29 pm
Report post

I am so happy for you! You have found a combination of medications that finally controll your illness and give you back your life. Thank God!
Interestingly enough, my daughter's rheumatologist has just ordered Kineret injections for her. It is still going through insurance, and we are waiting for approval. It turns out that Kineret has been very helpful in treating TRAPS patients that did not have a good response to Enbel or Humira, but who respond well to high doses of prednisone. There may be some kind of shared inflammatory mechanism with TRAPS and Muckle Wells. I just pray to God she can begin treatment with Kineret and that she also has a good response. As it is now, The humira and methotrexate are not adequately controlling her symptoms. Without large doses of prednisone she is constantly sick with fevers, nausea, vomiting, headache behind her eyes, muscle pain, bladder pain, etc. We are very encouraged about the prospect of Kineret. I will let you know. Wishing you great success in New York.

By melinda17
Posted August 9, 2009 at 9:13 pm
Report post

Maylouise-you are such an exceptional person-I can tell. We just never know what will befall us do we? I get a little annoyed because her dog has come as well(a tiny chuauaha- and no idea how to spell it.) But he's been doing his business in my room where I've given it to my daughter since the bed is bigger and more comfortable. I just want her to get well. She is in the grief stage, and the what did I do to get this stage and cries often. So hard. We see another neuro dr. tomorrow. It's just so mysterious. Good good luck with your daughter too. We just want them to have healthy, fulfilling lives, don't we? I'll write soon.

By jacksonba
Posted September 5, 2009 at 3:55 am
Report post

Hi Mary Louise,
I am 25 years old also diagnosed with TRAPS at the Mayo Clinic. I had to leave after my first year of medical school so my mom and I truly know what you are going through. Which rheumatologist did your dr see at the Mayo Clinic? I did not respond to enbrel. I am currently on a daily injection of kineret. It manages the fevers pretty well but does not do much else to help with the other symptoms which keep me disabled. I hope we can speak more.
Angela

By marylouise
Posted September 6, 2009 at 9:47 am
Report post

Hi Angela,
This is so amazing! Your story sounds so similar to my daughter's. She, like you, is now on daily Kineret injections.
She also did not respond to Enbrel or Humira. The Kineret seems to be helping a great deal. She is still dealing with symptoms, but the feverish episodes that would keep her pretty much in bed for weeks at a time have not happened since her last episode on July 23rd. She has been on Kineret for three weeks now. We are elated at the improvement. My daughter is anxious to communicate with you. Could you please e-mail me at mnmderrick@gmail.com so that I can put you in touch with her? I think you two could be a good support for each other.
Mary Louise

Welcome to Inspire!

Explore topics in this discussion:

9 replies

Add to the discussion

Group leaders

You