It is no wonder doctors have such a hard time with this disease. My journey started in 2017. I have not been off steroids since then. Twice now I have got down to 3 before experiencing a flare. The latest last weekend. Admitted to hospital on Sunday and home again today. Each time my symptoms have been totally different. The first time I lost sight in left eye for a number of seconds before it thankfully returned. Last year I had temple pain and blurred vision. 5 Days in hospital then. Last Friday my eyes felt sore. By Saturday night I could not put the left side of my face on a pillow because of the pain. Sunday off to hospital again and home today. This time they are trying a very quick reduction. 3 days on 50 then I am on 25 for a week, reducing 5mg a week until my appointment.
The only thing that is the same is my ESR rises. Juggling medications is not easy as I have become steroid induced diabetes. My blood pressure is uncontrollable. With all this I feel quite well just at the moment
Written by
shazstep
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That all sounds really unlucky. Poor you. So is this your third time? How do you feel about their reduction plan? Have they thought about TCZ for you? You must be a candidate with how much bad luck you seem to have had.
It is a pest of a disease! But a lot of rheumies take it far too lightly
Have you tried cutting carbs drastically? That really can improve pre-diabetes and diabetes significantly even on higher doses of pred.
I assume your BP is being treated? Is this a recent factor since the GCA has raised its spectre again? The vascular inflammation can narrow the arteries enough to increase BP quite a bit.
I have been on actemra again since last October. In Australia there is a limit to how many injections you can receive in a 12 month period My blood pressure has been going crazy for a few years. My gp changes doses and tablets regularly. Even while in hospital it will be over 200 at night and maybe 125 during the day.
I have seen a cardiologist just recently and he said my heart is good after tests
I have also tried different diets but it makes no difference. The last one I tried was fodmap for 3 months
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