My family and I are heading down to The National Amyloidosis centre in Londonon Monday and I am keen to know what is likely to happen when we are there. How quickly are we likely to start a treatment after that appointment? We have not yet had the formal diagnosis but we are 99% sure that will happen on Monday.

Dear Sazzy, Good luck! They will likely do labs, and other things then set up a plan. I am not sure how fast they will start treatment, but I really hope that things go well for you. There are some excellent doctors at that centre. How many of you are suffering from symptoms in your family? If you are interested, there are some patient groups that you may find helpful that have some people from the UK in them. There is a periodic fever syndromes UK facebook group, and rarediseasecommunities.org has a great CAPS community too. We also have some private facebook groups for patients on facebook-one for CAPS, and one for Autoinflammatory Diseases. There are lots of links for these groups on our website,on this link http://www.nomidalliance.org/connect_links.php Let me know what else we can do to help. There is a guidebook about CAPS to download on the site too, and info about many other autoinflammatory diseases. Best of luck on Monday! Karen Durrant-The NOMID Alliance

Hi Karen, There is myself, my sister, our mum and aunt. My Grandmother was also affected but is no longer with us. We have been trying to find answers for such a long time that the idea of a dx is actually quite exciting - sad ay? My sister has been diagnosed so there is the 3 of us who are yet to hear. My gran died from kidney failure so we are keen to get our amyloidosis tests back too. My sister's were 10 during a period of feeling well (which I believe is a the top of normal levels) None of us have any signs of hearing loss - however we are also being sent for hearing tests just to be sure. I will post again after Monday but thank you for replying.

Dar Sazzy6, So sorry about the loss of your grandmother from kidney failure. There is another family in Canada that sadly had the same thing happen a few years ago, right after medications were becoming available for CAPS. Their grandmother worked so hard for so long to try to get them help and a diagnosis, and we were able to help them, but it was too late for their grandmother, as the kidney damage was too severe by the time they got help. I am hoping that you all can get the help and treatments soon to prevent this. It is possible to stop the amyloidosis, and sometimes even see the levels and buildup reverse over years once on medication, as long as you can start it before it has gone to cause permanent kidney or liver damage. That is good that you do not have the hearing loss, and not everyone has that, depending on their degree of inflammation. I hope that things go well tomorrow for all of you! You are on the the right path, and the doctors you are seeing tomorrow will help you greatly. I will be thinking of you, and wish you all the best! We look forward to your post. Thanks for joining this group. Karen

Well today went better than expected! We were seen by the center all now had a dx AND they even gave us all our first dose of Ilaris! I don't know if it is because I am still on a high from this - but I am sure symptoms are already getting better! After travelling for 4 hours I have no rash - which is unheard of. I would normally be really suffering right now. Fingers crossed for a whole new way of life! Woo Hoo!

Sazzy6 That is amazing news! What a wonderful Christmas present. My son was on anakinra for 4.5 years, then switched to Ilaris in 2008. We were told that it takes 4-5 hours to start working, and by 24 hours it will be in full effect. So, I am sure that the rash going away is due to the medications. I am so happy for all of you! Many patients have said that "Now they know what normal feels like" after starting medications for CAPS. Some finally can feel up to going out in the evenings, as so many are feeling tired and having symptoms every day before medications. We have some artwork on our nomidalliance.org site, and quotes from patients with it on various areas of the CAPS information that show how people feel. Thanks so much for sharing your news. Feel free to contact us anytime also at site_manager@nomidalliance.net too if you need anything. Karen nomidalliance.org

Thanks Karen, It is indeed great news. I keep checking my arms every 5 minutes and I am amazed that there is nothing there. We are looking forward to a merry merry Christmas and hope you have one too x

Sazzy6, The first day my son went onto medications, he started feeling better within hours of the first dose, but the rash was finally gone when he woke up the next morning. It was a miraculous moment, as we had never seen him rash-free I was staring at him, and his milky white skin in awe, and it was a "pinch me I must be dreaming" moment. I am so happy for you! More importantly he was not suffering from the headaches, pain, fatigue and more severe symptoms within the first few days, and started to walk and even jump and run a few days later. it was to us, a miracle and tears of joy were flowing. He has NOMID, so before he went onto medications he was very weak, and could barely walk without pain and fatigue on most days,plus was anemic, and had stopped growing for over 1,5 years on top of brain inflammation, headaches, fevers, red eyes and pressure on his optic nerves too. He was one of the lucky ones that he started early enough to halt, or reverse some of the most concerning symptoms, including his hearing being saved (it was at the start of being affected, but that was halted). May you all have a blessed and most joyous Christmas ever! I had the opportunity a few years ago to meet the scientists that created this drug, and I was with another patient on the medication that has MWS, and she is on this drug too. We were teary eyed thanking him for his efforts, and he was so amazed to get to meet people that their lives were blessed by this drug, and was deeply touched. It was a nice moment, and we are so thankful that doctors and researchers are working hard to help people with autoinflammatory diseases now. More needs to be done, but these drugs are really amazing! Best wishes, Karen