I’m hoping you might have time for this question, PMRpro!
Dx around 9/18. Reduced far too quickly, flared at 4, up to 20 for 7 days 9/19, reduced slowly to 13. Had changed when on 14 to bedtime tablets with good results. Changed to gastro résistant beginning of December. Aches and pains gradually increased - very surreptitiously ! Realised I probably wasn’t absorbing enough. I am a coeliac so goodness knows what my villi are like! Big flare now around pelvic girdle - walking very difficult. Slight improvement with paracetamol and have upped pred to 15 for the past 3 days. No improvement. Gathering info to see if I should go up to 20!
Thank you as ever!
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Whatgrange
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I'd say you shouldn't be on enteric coated pred - to be sure you are getting enough pred. Why did you switch?
I had a dodgy batch of 5mg enteric coated tablets and within a few days I had symptoms. If you are struggling with plain pred then maybe it is worth considering asking to try depotmedrone deep i.m. injections used as 120mg every month to start and then tapering by using lower injection doses rather than extending the period between injections:
Looks like you need to return to medications in the morning and a non coated variety .
Why don't you try upping to 18 mg first , and if you have no significant response in a few days then up to 20 mg.
Whichever dose brings it back in line stay on it for approx 10 days , then you can do a quicker reduction back down.
If it takes longer than a week to get it under control and for you to feel your PMR Normal again , you may want to stay on the higher dose longer , or just reduce back to 15 mg for a month before starting the Taper Plan again.
Using the coated pills , plus having coeliac which makes drug changes slower to react to , may mean you need to spend more time on a higher dose and it will take longer to get your system back in balance again than happens with people with non digestive issues.
The injection option that Pro suggested is really worthwhile discussing with your Doctor or Specialist for you , especially if the reason for you trying to change your dose to night time was because you were finding that you were struggling for most of the day with stiffness or Pain before Morning Pred kicked in. In your case , the reason could be because of slow absorption of medication rather than symptoms themselves.
Take care and get more rest than usual as you get back to normal again xx
Thanks Aunty Bee! I think I’ll probably go for upping it in a few days to 18. It’s been an interesting lesson in that I had never thought of malabsorption until now. Bit stupid when I’ve probably had coeliac disease all my life - it just took 50 years to diagnose! I’m so used to coping with it now that I never think about malabsorption of anything else! I have never responded quickly to upping steroids!
Thank you! Hope all your Christmas problems are over and done with!
Hello, I had to have enteric coated after nothing helped my stomach; I was just too sensitive. I had a mysterious return of my GCA in the first 3 weeks after a great response. Through experimentation I found that its absorption is drastically reduced, in me at least, by the presence of food. This was remedied by having it at least 2 hours away from food with a minimum of a hour before eating again. No idea if there is a link but I also cannot tolerate wheat, barley or oats.
Didn’t bother because I know what makes me ill and I’m not prepared to do the 6 weeks or so on a gluten diet in order to be tested. I only found out when I supported my daughter after a wheat allergy was diagnosed and she was facing the reality of a gluten free diet at the age of 13. A revelation.
Snap! That was the conclusion the local coeliac guy and I came to - I was sent for a biopsy to look for dermatitis herpetiformis as I had symptoms that fitted but hadn't been told to eat lots of wheat beforehand! Rather an unpleasant dermy got quite nasty and we came to the conclusion that if I really wanted a dx to get food on prescription it might be worth it. But if I could manage it with diet, why worry. I can eat oats, spelt, kamut and rye - so not gluten, just wheat starch it seems.
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