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Hi
I am a 28 year old woman who has had TRAPS for 8 years. Is there any women who have any information on pregnancy/conception issues and suffers from FMF/TRAPS/periodic fevers?
Hi
I am a 28 year old woman who has had TRAPS for 8 years. Is there any women who have any information on pregnancy/conception issues and suffers from FMF/TRAPS/periodic fevers?
Joby
I do not have TRAPS, but I have Muckle-Wells syndrome which is another periodic fever disorder. I believe that TRAPS is autosomal dominant like my syndrome meaning that you only have to get the gene from one parent, not both. That means that you have a 50% chance of passing the gene on to your child. I an not sure about pregnancy complications though.
Thanks Jendeefur
My specialist explained there is a 50/50 chance. At the moment I am on prednisolone to try and contain the fevers, I am wondering if anyone out there has tried to conceive whilst battling fevers.
DEAR JOBY; I REPLIED TO YOU A COUPLE OF DAYS AGO BUT I PROBABLY DID NOT SEND IT PROPERLY CAUSE WHEN I CHECKED MY MESSAGES I SAW THAT REPLY TO YOU WAS NOT ENTERED. I HAVE TRAPS AND WAS DIAGNOSED IN 2000. I HAVE HAD 3 CHILDREN AND AM NOW GETTING REMICADE. IF YOU HAVE ANY QUESTIONS YOU CAN EMAIL ME AT graceanf@hotmail.com and i can answer any questions or compare symptoms. i have been looking for anotherfemale with my disease that i can actually compare. if you have webcam we can chat. grace
Dear Joby, I have FCAS/MWS which are part of the periodic fevers syndromes. I had two boys. One with and one without FCAS. My oldest came out with the rash and he leads a pretty normal life style. He has three boys all who have FCAS and I think the oldest may have some NOMID overlap. Not so good. You have a 50/50 chance of passing the errant gene and the pregnancy at least for me was not any different than with the child that did not get the mutated gene. There are a lot of trials for this disease through the NIH clinical trials. Some meds to help with the symptoms none to cure but those who have tried the meds such as Kineret, Rilonocept and now Novartis has a new one, have had good results. I don't know which periodic fever you have or if these drugs would pertain to you. If yu have any questions, I can provide you with web sites that can help answer your questions. I have been searching for an answer for what I have since I was a young girl. I am now in my mid fifties and most of the info about our diseases was not available until 2001. Good luck.
Susan
Thanks Susan. I have read a bit about the new Novartis drug. I am yet to try Enbrel and see if that works but I guess planning a family is the aim at this stage. Were your fevers regular when you fell pregnant with your FCAS and did you get fevers whilst pregnant?
It is great there is more information available now - lets hope in the future there will be drugs to stop and eventually cure all symptoms!
I have had this since birth that is what the difference is between FCAS/MWS and some of the other periodic fevers. As far as it getting worse with pregnacy no it is the same. Weather differences and humidity and air pressure and stress all are triggers for a flare. It can be 100 degrees outside and I can go into a room that is air conditioned to 80 degress and have a flare. I also have hypothyroidism which makes my normal temp only 97.7 so if I get to 98.6 I am having a fever. I could deal with this disease a whole lot better when I was younger and was lead to believe that moving south would help with the flares. It didn't. I was misdiagnosed from early childhood as well as my two sisters who also have it. Complications can come later in life as I have come to find out. I'm not sure what traps is other than it is part of the peridic fevers as is FMF. Have you had your grnes tested? Have you had this since birth? Dr. Hoffman in San Diego has been a great Champion for us and didn't give up until he found the gene responsible for this affliction. Some people have varing degrees of this so it is hard to say exactly how hard it will be for you. And if you will be able to take the drugs after you become pregnant as all of the drugs on the market so suppress the immune system. Sometimes the disease is better than the drug. The fevers should not affect the fetus. My sisters and I all had normal births and no complications. Hope this helps.
Susan
I have read a few people talking about Dr Hoffman, as I am in Australia thought so I'm not able to see him. I have a good specialist here who although took a few years to diagnose after being referred to him, eventually took a dna test and discovered the TNF issue which lead to the TRAPS diagnoses. No one in my family has TRAPS that I am aware of and I only had my first 'flare' at 21.
I am interested in your talk of fevers not effecting the fetus as my worry is not falling pregnant due to extreme fevers (my immunologist explained fertility is hugely based on being healthy and having TRAPS your body actually things it has a serious illness). Also there is so much talk of fevers causing miscarriage/defects during pregnancy. Interestingly enough I was told by a top specialist at a maternity hospital that it would take days and days of exposure to extreme heat levels to cause issues to a fetus and that managing fevers during pregnancy from trying to cool your body as best you can should be fine! He said that the research on fevers during pregnancy is speculative and not 100%. Lots of positive information out there. Did you suffer fevers all through pregnancy then?
Yes sometimes I agree that just allowing the fever to take its course is better than the weight gain I get from taking prednisolone constanty but it is great for a break when I need it.
I hope your complications are not worst as you get older - that is my biggest worry & a sad reality for some people. You can email me at trapsme@yahoo.com.au if you would like to chat anyway.
Thanks greatly for your information!
I do have periodic fevers, however, I don't have TRAPS. We thought I had it for sure since my two boys have it. (R121Q) I do get fevers with high CRP and Sed Rate, but I have put so much focus on getting my boys help (2 year and 4 years) that I have not done much for me. Anyways I have had A LOT of miscarriages (11) and the only way I was able to carry my two TRAPS boys to term was with steriods and hormones. The problem is getting with MD's who know much about TRAPS and MD's who are willing to work with you. My boys just started Enbrel so I'm not sure if it is working, but I was reading that it is a class B drug and they don't believe it can hurt the baby. I know how frustrating this is. Since your onset of symptoms was latter in life, I assume you have the R92Q as well (or another low penatrance varriant). I think we all need to start a support group. I know I could sure use it!
Hi there 'momofthree'
So sorry to hear your boys have the fevers, have you had dna tests to check if you have the TNF to determine you have TRAPS? I guess periodic fevers is much the same thing, I have read so many different symptoms from other people who have TRAPS & I guess I'm lucky enough just to get the fever attacks.
Good to hear from another person who has managed to have children with fevers even though you have gone through such a struggle - I knew it would never be easy as I know my body struggles with the TRAPS alone & isn't healthy. I am actually with the yahoo support group for TRAPS which has a lot of advice & support - please have a look for it as you may get a lot of help.
I am just commencing fertility treatment (tracking) with hormone injections at the moment and awaiting approval for Enbrel. I tried a year of using high dose prednisolone & had weight & infection issues and with my issues conceiving I'm now trying something else. I get really stressed worrying about never having kids because of this and the doctors here have no idea about any of it and what the problem is. I haven't tried it yet to know if it will work but I am really hoping Enbrel will help me as the risk vs benefit is something I've researched a lot on. I'm not sure about the R92Q but I will ask my specialist. It does make me worry the inflammation caused from the disease which makes you have the fevers can prevent starting a family. Do your boys have symptoms exactly like yours? What hormones & dose of prednisolone were you on during pregnancy?
Thanks so much!
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