A story of success/hope
We’re often understandably focussed on things that aren’t going well, so here’s a positive story intended to share some good news and hope to keep us all going.
I’ve had moderate but well controlled PSA for c6 years and skin psoriasis for c15 years.
I’ve been on methotrexate, various doses and sometimes in combination with other drugs. Recently my libido had mysteriously disappeared and methotrexate was suspected to be the cause (it’s an uncommon side effect with long term use). Anyway, to test the hypothesis and in agreement with my rheumatologist I reduced and then came off my methotrexate. She also said we could take a meds free period to do some MRI scans and see how my joints are looking.
The first week of being meds free was really tough. Lots of joint pain and stiffness which was very dynamic and seemed to change from moment to moment + fatigue. But from the second week meds free, everything just seemed to clear up. I’ve been meds free for a month or more now and feel like I’m in remission (& my libido is coming back). I realise that this is a short timescale and things might change but I am having so much joy in not taking loads of meds. Occasionally I think I can feel a bit of stiffness in some joints, but it’s not an issue, not even enough to make me want to take an ibuprofen.
In the last 6 months or so I’ve really tried to clean up my health a bit. So more exercise, weights, cycling and yoga type stretching, have almost completely cut out alcohol, most weeks I drink nothing but still have an occasional few drinks for a special occasion. I’ve also tried to focus on gut health, drinking kefir every day, eating fermented foods, mainly sauerkraut and kimchi, trying to get 30+ different types of fibre a week. Doing some fasting (usually one fast of between 24 and 40 hours per week) and trying to minimise any UPFs.
It’s hard to tell whether any of this or if so what parts have made a difference. I’m not a scientist and my body’s not a laboratory! 😂
I’m waiting for the MRI results to then plan what the next steps might be with the rheumatologist, but I’m hoping that I might continue like this for a little while at least. Even a short period of meds free remission feels like heaven.
I realise I’m very lucky and am not taking it for granted.
Good luck to everyone who is currently suffering. Maybe you’ll get lucky next. There have been times when this disease has made me really down and I’d never imagined I’d be writing a post like this. Keep going with my best wishes.