Stuck on 8mg

[Slosh]

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.

[DorsetLady PMRGCAuk volunteer]

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?)

Are you using a slow tapering plan - such as - healthunlocked.com/pmrgcauk...

Your adrenals need to start thinking about firing up as well - so that may be an issue as well.

[SnazzyD]

Have they tried the antihistamine route yet rather than relying on Pred to damp the response?

[Hidden]

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.

medicinenet.com/prednisone_...

[PMRpro Ambassador]

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.

[Slosh in reply to PMRpro]

Thanks PMRpro - good advice as usual.

[SheffieldJane]

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.

[Slosh in reply to SheffieldJane]

Oh ok. When you symptomatic - what symptoms do you mostly have that you know are PMR

[SheffieldJane in reply to Slosh]

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).

[Slosh in reply to SheffieldJane]

Oh ok. Are you staying on the Hydro or back to Pred?

[SheffieldJane in reply to Slosh]

Better the devil I know, so Pred 4 mgs . Adrenal function was deemed normal a few weeks back. I have another Synacthen Test when I reach 3 mgs.

[Slosh in reply to SheffieldJane]

That's great

[HeronNS]

Have you done anything to recreate a healthy gut microbiome? And why not antihistamines?

[Slosh in reply to HeronNS]

I reacted to antihistamine.

Am on a special diet to help with that.

Started herbals to deal with candida and 2 pathogenic bacteria in my gut - and reacted to them.

Will introduce them again one by one to see culprit

May start a low histamine probiotic too.

[HeronNS in reply to Slosh]

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.

[Slosh in reply to HeronNS]

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.

[HeronNS in reply to Slosh]

Right. I just looked it up. healthline.com/health/low-h...

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!

[Slosh in reply to HeronNS]

Thank you - will do.

[PMRpro Ambassador in reply to Slosh]

Reacted to histamines surely?

[Slosh in reply to PMRpro]

Some meds / chemical / additives / colourings also lead to an increase in histamine - as the either suppress DOA or are histamine liberators.

[PMRpro Ambassador in reply to Slosh]

But not ANTIhistames was what I meant

[Slosh in reply to PMRpro]

The reaction that I had and actually had to go to A&E was classic of the 'allergic' reactions listed.

I'm not sure of the chemical make-up and the additives in addition to the active ingredients in the tabs - but it was most unpleasant.

I may well try a different one when I'm a bit more stable and not reacting to everything.

[NursePeggy]

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.

[Slosh in reply to NursePeggy]

Hi NursePeggy - yes I live near Crawley.

I'd love to chat and catch up.

I am also seeing a functional doctor and nutritionist in Wimbledon. Just at the beginning of seeing them.

Am about to try DAOsin.

Had to do some herbals to deal with yeast overgrowth and a pathogenic bacteria - but have reacted very badly to them.

What do you think triggered yours?

What are your symptoms?

Are you also sensitive to chemicals - fragrances etc?

And additives in foods and supplements?

I was diagnosed Jan 2017 and not sure when I developed HI but it became problematic December 2018 and has just got worse.

I avoid histamine foods and liberators and fragrances and additives.

I have tried to go lower than 7 a few times. I am now stuck on 8mg and too scared to move from there.

Yes - would love to catch up.

[NursePeggy in reply to Slosh]

Hi Slosh, I am in Wimbledon. I think we have been seeing the same functional lady doctor. Will try and PM you

[Slosh in reply to NursePeggy]

Great

[Kellthebell in reply to Slosh]

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!

[Slosh in reply to Kellthebell]

Hi Kellthebell - I see Dr Mo and nutritionist Lynda Mallinson at Functional Medicine Wimbledon.

Tel: [phone]

[e-mail]

[e-mail]

14b Merton Park Parade.

[Slosh in reply to Kellthebell]

Messaged you