18 months along

[Louiseiw]

I started on Prednisone November 11 2021. The diagnosis was probable GCA. I remember writing a post on here detailing how crazy/busy my life. 101 things on the go at the same time. I received lots of replies about needing to slow down etc. At the time I had no idea just how much I would need to slow down. From January through to July 2022 I had recurrent throat and chest infections so went round the circle of antibiotics so having to come off the meds etc Eventually the Nurse Practitioner realised it was recurrent oral thrush due to the steroids.

I started reducing the Pred as early as February but once at 25mg my symptoms all returned. I was then put on the oral Methotrexate,, Folic Acid and Alendronic acid which affected me dreadfully I think I went through 6 weeks or so off diarrhoea every day. So the Methotrexate was switched to auto inject and I stopped the alendronic acid which improved things greatly. I still get oral thrush on a regular basis but I have found that if I overdo it I really suffer the next day. Oh and I just had to start diabetes meds because of long term steroid use. So now I plan rest days and if that means not getting dressed and sitting on the sofa that's what I have to do. It is extremely frustrating nit being able to do everything I used to do. Last year I ran a 4 day holiday club for primary school children I am not even thinking about this year.

So if your diagnosis is new as everyone told me make sure you rest and look at things in life that you find stressful and see if you are able to change them.

[SheffieldJane]

So sorry that your time has been so difficult Louiseiw. I hope you can get on to an even keel from now on. 🌷

[Louiseiw in reply to SheffieldJane]

Thank you.

[123-go]

You’ve been through an awful time! Sometimes we learn the hard way. Maintain your resolve towards pacing yourself which can only be a good thing.

[PMRpro Ambassador]

It is rough when you are so young and it affects your career. I was 51 when the PMR started but it wasn't diagnosed for 5 years so I lost a lot of my 50s to PMR and by that time I had lost a lot of fitness. I also think you have been messed about with unnecessarily which hasn't helped - I'm so sorry.

[Jackoh]

You’ve had an extremely difficult time - let’s hope with your new regime and with all that you and all of us have had to learn re pacing and taking care of ourselves- your remaining journey will be a smoother one. All the very best. 💐

[Louiseiw]

Thank you everyone for your support. It has been along slow journey but I am getting there.

My 50th was last year in May but I spent the whole time unwell.

Onwards and upwards