Hi,
I wanted to share my wife's story with RA, and the surprise remission, in order to investigate if anyone else has heard of a similar case, and has any suggestions on how we can prolong her remission.
She developed RA in early 2013 following a stressful pregnancy and the birth of our first daughter. We can clearly remember the night she had this searing pain in her shoulder that came out of nowhere. Over the following weeks she developed swelling in her hands and feet and intense shifting pains in her joints. After a doctor visit, they arranged blood tests, observed a high RF figure, and referred us to a rheumatologist. We saw three, each of which proposed the same treatment - start on MTX, and prednisone as required, and reassess after a few months.
The MTX took her to a low point in her life, being continuously exhausted and in pain, whilst looking after a 6mo baby. After a few months it did relieve the symptoms moderately, but she was still in pain and fairly disabled. She read about concepts such as leaky gut, and decided to pursue a diet-based plan instead along the lines of the Paddison Programme, although not actually subscribing; she cut out all meat, dairy, gluten, alcohol, and nightshades, stopped taking MTX and any medication, except Prednisone for bad days.
Her fatigue reduced, and her condition improved. She was still in pain, but not as bad as before - she also started doing Bikram Yoga in the mornings, which was excruciating, but gave her more mobility to get through the day. We debated long and hard about when to have a second child, then nature took its course and she became pregnant again.
Now - any RA sufferers who get pregnant are probably familiar with the experience of having your pain switched off as if by a switch. She went through nine months of pain-free bliss, we had our second daughter, and then she enjoyed time with her whilst waiting for the RA to return.
But it didn't…
Our second daughter is now 11mo, but she still hasn't experienced the same kind of pain and disability as she did two years ago. We're unsure why this is - she bumped into her rheumatologist, who she's refused to see since she stopped the MTX, and he said he had never heard of such a case of RA remaining in remission more than a few weeks or months after pregnancy. She still has one or two swollen knuckles generally, but she can get up off the floor, jog, and many other things that were impossible two years ago.
We did theorise that perhaps it was due to hormones prolonged by the breast feeding - and sure enough, as she's gone down to two feeds a day at present, she had a strong pain in her shoulder, just as the first time, following a rich dinner and cocktail. She has stopped eating meat and dairy generally, but she's nowhere near as strict as she was originally, and is still much more mobile.
I've encouraged her to go back to some rheumatologists to investigate the cause of the remission, and whether it can be extended. It could be that she originally experienced severe flares and this is the latent level, or it could be that it is genuine remission; we're not sure. She is extremely reluctant to have any more tests or appointments - I suspect in case they confirm this is temporary and it will return.
I read a lot on the internet at the time, and there seemed to be studies around new mothers *getting* RA, usually years or decades later in life than childbirth, but nothing covering *remission* from existing RA.
(eg. breastfeeding.support/breas...
ard.bmj.com/content/68/4/52...
ncbi.nlm.nih.gov/pmc/articl...
)
Seeing as the rheumatologist seemed to think this was a rare outcome, I wanted to ask the community if anyone else has heard of a possible remission like this, particularly in relation to late post-natal or breastfeeding, and whether there's anything we can do to keep this going as long as possible.
Thanks!
Damian