My heart
I was diagnosed with Minerva prolapse and SVT at the age of 12 when I was diagnosed with rheumatoid arthritis as well. I am a tiny person. I have been all my life not only does the rheumatoid arthritis affect my bones, but osteoporosis does too bones spurs are horrible to live with and very painful. I’m beginning to get them in my hands now I have them all through my neck and I’m bone to bone and four different disc in my upper neck.
Mitral Valve - been given the meds thru iv that I had to sign to stop SVT ( at times I’ve had this done my heart rate was like 189 , 183, 201 and have driven myself to the ER during these episodes instead of waiting on an ambulance
Hi
. I know you were diagnosed at a young age. Have you ever managed to find a treatment to control your inflammation? My wife, Kelly Mack (a contributor here) was diagnosed at age two, 47 years ago - before modern treatments, with the damage to show for it. She has used a wheelchair since childhood. I ask about the inflammation in your case because supraventricular tachycardia (SVT) in those with RA is caused by the inflammation and no attempts at dealing with the SVT are going to get far without controlling the inflammation. This recent article discusses the interdisciplinary approach necessary for treating SVT within RA: https://pmc.ncbi.nlm.nih.gov/articles/PMC12471337/. Also, are you being treated for the prolapsed mitral valve? I ask because whether connected to RA or not there are treatments if necessary.
Also, many here understand how difficult it can be to find an effective treatment through the trial and error method with RA. That said, about eight years ago Kelly finally found a treatment that brought her inflammation into the normal range for the first time. I know that my friend and fellow team member here, who was also diagnosed with JRA many years ago, has a similar story of finally finding a treatment. I mention all of this to illustrate that one never knows when the lightening might strike. Mind if I ask if you have ever been tried on an interluekin-6 or interleukin-1 inhibitor? i ask because research has found IL-6 and IL-1 to be major drivers in juvenile cases and the inhibitors more likely to be effective in slowing the disease (see here for example: https://academic.oup.com/mr/article/29/2/275/6300099). I'm not saying these medications would work for you, but the research indicates it is worth a discussion. Wishing you the best. Richard (Team Member)
