I feel stuck on 8mg Pred (four months) which I take at 09:30 with breakfast now. Either the PMR is well controlled or is in remission - I have no stiffness. My symptoms when reducing are increased histamine intolerance / chemical sensitivity.
Functional doc thinks that I may have DOA deficiency (the enzyme that degrades histamine) and so the histamine just builds up. This can happen when you gut integrity is compromised. My gut has probably been impacted quite a lot by the Pred.
I really want to go down - I feel like not only my gut health but also my immunity and bone health are at risk - but obviously I am dependant on the steroids. Does anyone know the difference between Pred and Hydrocortisone in this kind of situation - and could swapping be an option / better?
Thanks.
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Slosh
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Can’t answer the question regarding Pred/Hydrocortisone - but I know a woman who will - although the latter is used for many things, PMR doesn’t seem to be one of them, certainly on a regular basis. Plus I think you need to take a higher dose of Hydrocortisone to get the same effect as Pred - but I may be wrong.
As for comment - either PMR is well controlled or in remission - I would say “well controlled” - you cannot know for sure it’s in remission until you have got down to zero with no symptoms!
Not sure I really understand why in particular are you stuck at 8mg - what exactly happens - sorry if I’m being dense but can you explain your comments re histamine/chemical sensitivity (are these being treated by another drug?)
Have they tried the antihistamine route yet rather than relying on Pred to damp the response?
Hi Slosh
The difference between Hydrocortisone & Pred is, HC has a shorter ‘Half Life’ & so has to be taken three times a day, Pred however lasts for us up to 24hours so can be taken once a day, though this is not always the case & some people split their dose.
Pred has more Anti Inflammatory Properties, Both PMRPRO & l have written on this subject before.
8mg is a safe dose - and you will only know that the PMR is gone when you get off pred altogether because 8mg is a considerable dose in that context.
Hydrocortisone is still a steroid but has a very short duration of action so you need 2 or even 3 doses a day. Some people find the adverse effects are worse than pred and at least a couple who were switched to HC for adrenal function reasons went back to pred as they couldn't cope with the adverse effects they experienced.
What makes you think that your gut integrity has been compromised by pred? According to the local coeliac expert when my PMR seemed to lead to a wheat intolerance, it was most likely the a/i part of PMR. It certainly wasn't pred - I'd never taken it in my life - and pred lets me eat things I can't otherwise without itching madly! And in fact, the histamine problem I had was also long pre-pred. Probably pre-PMR too.
I was offered Hydrocortisone (15 mgs) by my Endocrinologist to help my Adrenal function to recover, as a substitute for 5 mgs of Pred. My Rheumatologist didn’t think it would help with PMR symptoms. I am still symptomatic.
Very characteristic ( for me) pain in both shoulders, extending down the arms, much milder than it has been in the past, and truly debilitating fatigue for the last month, which may or may not be Adrenal related ( I can feel lively at 3 am).
You can help good bugs overpower bad ones by gradually introducing healthy fermented foods. Gradual is the key as your gut needs time to adapt. Like one tablespoon of fermented vegetables, two ounces of kefir, that kind of thing. Then slowly increase amount. Fyi there are many more types of bacteria in kefir than in yoghurt. If you are sensitive to dairy you may be able to find water based kefir, or a kit to make your own. I have been drinking a little kefir when I have my bedtime calcium for the last few months, replacing a small helping of yoghurt I used to have.
Can't do anything fermented - very high histamine. Sad - do my kimchi and sauerkraut just in fridge unopened - may as well bin it as my housemate thinks it's disgusting.
It kind of looks like something which takes a little time but also which I hope you should be able to recover from. Let us know how you get on. Good Luck!
I have had PMR since September 2014 and am now on 6.5 mg Pred. I always have trouble tryimg to go lower than this. I also have Histamine Intolerance. I was diagnosed with it about 18 months ago. My diamine oxidase in a blood test was well below normal. Also diagnosed by a functional doctor. I take a probiotic made specially for HIT and also Daosin before lunch and dinner.
I have to watch my diet very carefully for Histamine and Histamine liberators and so my symptoms have improved dramatically. I am trying to pluck up the courage to eat a small amount of avocado or banana. These are the two foods I miss the most !
I would very much like to talk to you as I dont know anyone else with these two specific problems. Do you live in England ? I am near London. I look forward to your reply.
Ladies is it possible you could PM me your functional dr details please? Im local and HIT is so misunderstood even by most professionals, I've been under immunology at Guilford hospital and have gone as far as I can with them, I'm sure HIT + hormone cycles are causing all kinds of mayhem!
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Wish Me Luck! Update #4
Seem to be stuck at 7.5mg
Allergic-type reactions to some foods/meds/smells/ heat - it's actually common with AI illnesses
Tapering and effect on corsitol
