Hi, my name is Sandy and a I am fairly new here. First of all, for the past 4 weeks I have found this site a lifeline and thank you for setting it up and all the good advice.
I was suspected of having PMR when I was 48. To be honest I didnt want to believe it so I managed without steroids and got onto a cocktail of painkillers and antidepressants that, although took the edge off, left me in pain and I struggled on for a good couple of years. My ESR levels were always elevated but not horribly so and I kept a good look out for any GCA symptoms and always checked with doctor. After about 2 years it didnt seem so bad and up until Nov 2014 I was reducing drugs and working almost full time.
I am a self employed Extend exercise teacher for over 60s and anyone with a disability and chronic illness and also have back and shoulder injuries which over the years have turned into arthritis. Teaching exercise helped me to keep mobile, flexible and stop me gaining more weight. In Nov 2014 I injured my right knee whilst working, had an Arthroscopy in Feb 2015, made a slow recovery and managed to work again but only about half as much as I did. In about Sept 2015 I started to feel more and more pain and stiffness and had trouble getting up, getting dressed etc. Nov my GP tested my blood again to find elevated esr. I reacted the same way. Steroids! No I am far to young! However, I got worse, depression set in. After Christmas I went back to work but then got flu, well I just got worse and worse. Then I started to get headaches and visual disturbances and tongue pain so back to GP straight away.
On 18th March I started on 30mg Prednisolone, 19th March could reach up to get something out of top cupboard, 20th March could wash my own hair and get myself dressed. As instructed by GP I reduced after 7 days to 25mg and went back to see her 7 days later. She was really great and I know I have been stubborn but no judgement.
Saw her today and latest esr results have fallen, she didnt mention the actual number. Wants me to try 20mg now for a few weeks. I have had to make lots of drug changes as was on gabapentin, prozac, diclofenac before but the effect on my stomach was bad when starting Pred so had to go "cold turkey" on the drugs, come off of coffee (serious ciffee addict) and I used the kind advice found on here to change my diet to help control this together with Pantoprazole and Ranitidine. Fuzzy head, headache in centre of forehead and pain behind eyes, extreme tiredness coupled with withdrawal has made for a fraught few weeks. Jitteryness thought by gp to be the prozac so we came off that too and now trying sertraline which seems to just be starting to work. On paracetamol too to help the other pain and gp has just given me some more co-proxamol (been taking that for 30 years for my back as nothing else works). So I have an option of something stronger if I need it. So you can see at the moment I dont know whats a side effect of what at the moment or what is actual symptoms. I do know the pain and stiffness has improved by about 80% though.
Suffice to say I am not working at the moment and coming to terms with all that that changes. In a way I am lucky, I have a brilliant gp and found this forum. I do still have a couple of things. I seem to be peeing so frequently, its not an infection, gp has checked. Says its an irritated bladdar. Anyone know anything to help with this? On the good side all those loo trips are keeping me moving! Also I see there are support groups around the country, is there anything in Mid Essex?
Got a kindle copy of Kate Gilberts book and that has been really useful too.
By the way, I dont want to go to see a Consultant Rheumatologist yet, my GP seems to be well up on pmr/gca. I hate hospitals and suffer from anxiety and panic attacks so dont feel up to that unless I really need to. I am having my eyes checked next week though.
This is some journey, seat belt fastened, glad I finally decided to try the steroids. Sorry for the long post but its the first time I have felt like putting it all down.