Just to recap, I was diagnosed PMR/GCA September 2014, started on 60mg prednisolone- pain free within a day. Down to 5mg August 2015. CRP and ESR slowly creeping up, so sent for a CT scan in October 2015, as this proved inconclusive I had a PETscan in November 2015. Results of that were large vessel vasculitis so back up to 40mg prednisolone. Rhuemy wanted me to start taking methotrexate and I had an appointment with a pharmacist to start me off on that the day before Christmas Eve. As I was seeing rhuemy again at the beginning of January 2016 I didn't start taking the MTX and told rhuemy when I saw him that I wasn't happy about it. He listened to all I had to say and I showed him the dead slow and nearly stop reduction method a copy of which he willingly kept. He agreed I could adopt this if my CRP stayed normal but if it started creeping up again he strongly advised me to take the MTX. He told me to reduce by 2.5mg per month until I got down to 10mg. CRP was 8.2 and ESR 40 before starting on 40mg pred and got down to 0.6 and 8 respectively by mid December. January 2016 saw CRP at 4 and ESR 14 (Christmas celebrations I guess) I then decided to cut out sugar, changed from white potatoes to sweet potatoes always with added tumeric, I had already stopped eating cakes and biscuits etc. Next I added ginger to some cantaloupe melon each afternoon and ginger to my teatime 0% fat free yogurt together with a tsp of manuka honey daily. February saw the start of a bad throat I then added extra ginger to a cup of ginger and lemon tea plus a tsp of honey and some cinnamon which I always have in my porridge each morning. February's CRP was 0.8 and ESR 9. March CRP 1 and ESR 10, up a touch due to bad throat I expect. I then decided to have fresh garlic each day, I add this to a small avocado and eat it with cucumber and red pepper - quite yummy! I also add it to soups and stews and any other appropriate meals. April CRP back to 0.8 and ESR 8. I saw my rhuemy on Monday and he was very pleased with my results and seemed impressed with my change of eating etc. BUT, I still have problems with my balance and fuzzy head which have increased a little lately. l mentioned this to the nurse at last weeks blood test and she took my blood pressure and then arranged for me to see my GP later that morning. He took my BP which was 152/64 sitting and 152/74 standing, he said he was not over concerned about it as I was due to see rhuemy 3 days later and to make sure to tell him. Rhuemy after my explaining how I feel said it sounds like VERTEBROBASILAR insufficiency. He wants my BP to be on a level in a 140/80 window because of my vascular condition, so I now have to have monthly BP checks with the possibility of introducing an ace inhibitor to help control it.
I am curious if anyone else has heard of and/ or experienced this Vertebrobasilar condition? I shall make an apt to talk to my GP about this in a couple of weeks time when he should have received a report from my rhuemy.
My rhuemy told me to stay on my present dose of 15mg pred for another 5 weeks, then reduce to 12.5 for 6 weeks after that reduce to 10mg staying on that for a year, if all is ok at that stage I can reduce to the dead slow and nearly stop method.
Sorry once again for a long post but I know that those who know amongst you like to have the details of the condition and medication etc.
Many thanks again for all the help and advice to be gleaned from the forum.