Have reactive arthritis in over 10 places - speed of spreading

GEORGIEB

Hello - In 2015 I very foolishly had a baby via C-Section at the [XXX]. I was let out of hospital riddled with infection and left with in-dwelling infected catheters for 8 weeks. I now have Reactive Arthritis in my spine, neck, sacro-illiac joints, shoulder, my sternum, either side of both of my clavicles, achilles tendons, fingers, hand, front of my pelvis, my hips, my bowel, and now have crohns and due a stricture surgery. I didnt get Bioligics until almost 5 years after the outbreak and the hospital I was treated in and the ward I was on was specifically named as "putting patients lives at risk" and the hospital failed its CQC and was put into special measures. I am just wondering now that I have the disease now in so many parts of my body how quickly it will spread to other places?. Being offered charming bedside manner as I get steered from one operation (hip/bowel/shoulder/achilles) to another is all very well, but I would rather understand more realistically how long before it spreads to my eyes (Uveitis), Heart (Aortic Valve) and Kidneys. I know that my life will never be the same again and want to try and best plan my time for my daughter. Any experiences you may have of this number of places damaged in 6 years and a realistic spread in the future would be much appreciated.

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Moderator Ellen.

Ellen

Hello @GEORGIEB

A very warm welcome to the versus Arthritis Online Community.

I can see you have had a really rough time following the birth of your daughter by Caesarean Section in 2015. An infection has resulted in you being diagnosed with Reactive Arthritis affecting so many parts of your body. I am so glad you have found this forum because you will get so much support from our members.

From your post I can see you are now on Biologics, but are very fearful about the future progression of the disease. We aren't able to give you any definitive answer as to the likely speed of the progression in your case, but would hope that the Biologic you are on will minimise this. If you would like to talk to a 'voice' you would be very welcome to telephone our helpline:

https://www.versusarthritis.org/get-help/helpline/

I am also going to attach to post from this summer which is relevant to you:

https://community.versusarthritis.org/discussion/54933/biologics-for-reactive-arthritis

I will leave you now to wait for some of our members to reply and just want to reassure you your are not alone everyone here will do their best to support you.

Best wishes

Ellen.

frogmorton

Hello @GEORGIEB

Gosh what a story! I am really shocked. You poor thing😕 What a dreadful time you've had, but you do have your gorgeous daughter safely here for which I am sure you are very very grateful. I hope the hospital in question has improved itself.

None of us will really know how quickly your condition might spread, (hopefully not at all now if your biologics do what you need them to), but we can offer you support and understanding. We have years and years of experience between us all with the issues we all face and don't judge.

I hope you'll decide to stay and share your experience with us and vice versa ((()))