What foods, if any, disagree with Pred?

[Janll]

I'm wondering if there are any foods that disagree or conflict with Prednisolone?

Anyone have any experience they would like to share?

I'm trying to discover why my pred. are not doing their job. Process of elimatation for me.

Thanks!

[SheffieldJane]

Hi janll,

I would be questioning my diagnosis if Prednisalone was not doing its job. In my experience it loves all food as my bathroom scales testify.

That is not to say we shouldn't support our systems with a low carb. Low sugar diet.

[piglette]

If the pred is not doing its job, I think I would question whether you have PMR or you are at too low a dose. My rheumie told me to cut out salt. I have become a total nerd as far as food and nutrition are concerned since PMR. I cut out gluten and simple carbs to stop the moon face, it worked but it may have been luck of course.

[Janll in reply to piglette]

My diet is pretty good and I have kept the extra pounds away by greatly reducing cards and sugar. I had the moon face 1st time around (13 years ago) but I was started with 20 mg. This time I was started on 15mg and it seems to not be so obvious.

[PMRpro Ambassador]

"I'm trying to discover why my pred. are not doing their job"

Without a bit more detail it's difficult. But the obvious question is: "Is it really PMR?"

But there can be a big difference between the effect of 15mg and that of 20mg.

[Janll in reply to PMRpro]

The pain this time around has not been at terrible as the time before. However, the markers were pointing to PMR so I started with 15 mg last April. At that time, the pred seemed to be dealing with my symptoms. By Nov. the Rheumy decided it was perhaps NOT PMR, as my blood work was not looking so promising and suggested to come off pred fairly quickly, and then rethink the situation. I think perhaps too quickly. From 8mg in Nov to 3.5mg mid January. I survived for a few days on that and then felt I had been run over by a train. Everything hurt. But leading up to that my shoulders and neck had been pretty painful the proceeding month. Mid Jan. I increased to 9mg and my train wreck seemed to be more of a car wreck. Depression was less as was the fatigue. I very slowly managed to reduce to 8mg but shoulders are complaining, loudly in the morning and I gradually get relief around lunchtime. The next day, I start all over again, same story. Only now, I'm feeling frustrated and low. Probably tired of seeing little progress. CRP is normal and ESR is high, 74. I've had tests for all the other conditions and nothing bad has shown up. Would I feel better in the afternoon if I didn't have PMR? The yoyo effect of feeling good then feeling bad every day......is that typical of PMR?

Sorry PMRpro, is this all too much?

Jan x

[PMRpro Ambassador in reply to Janll]

I think it may be time for your doctor to get a reality check about PMR - 10mg is not an unreasonable dose for many people after 9 months. It took me a few years to be able to get below 10mg reliably and I am not alone. There are NO blood tests that exclusively "point to PMR". ESR and CRP being raised only show you have inflammation SOMEWHERE in your body and they can be raised in a lot of things. Your ESR is VERY high - so if you have PMR you are on far too low a dose of pred, you need to get that ESR down to normal range and then find the dose that manages the symptoms.

You have a big reservoir of inflammation in your body, it is tipping over the edge of the dam every morning and your rheumy is allowing you a teacup to bale it out. Every early morning a new batch of inflammatory substances is shed in the body and that is why you feel so bad. The sooner after 4.30am you take your pred, the less it has to do in mopping up the inflammation caused each day. The optimum time to take your pred is about 2am - then the blood level is highest just as the inflammatory substances are released and they never get to take hold. Many people who can't be bothered to wake in the middle of the night and fear they may not get back to sleep take their pred early and settle down for another couple of hours to let the pred start to work.

But at present, with all that unmanaged inflammation left rampaging you will never get that dose any lower without symptoms - it all needs a good clean out first. Leaving that inflammation there is doing damage to your blood vessels and other parts of your body - and this week's cheery medical research news is that unmanaged inflammation in autoimmune disease makes it more likely you will develop dementia/Alzheimers. So it needs looking at.

[Janll in reply to PMRpro]

Thanks PMRpro. I'm the one who has to take Thyroxine 1/2hour before any other meds, so waking and waiting in the early hours to take T. wait and then Pred is most unappealing. Especially as I don't sleep well after getting up to visit the loo. I will try and make an appt with my Rheumy this morning. Interesting how the body works, 2am you say? I'm really grateful for your advice.

[PMRpro Ambassador in reply to Janll]

You might be interested in this thread from another forum:

patient.info/forums/discuss...

It is something that has come up before about thyroxine and AA or pred in the early morning - and this turned out to be the answer. But simply a 2 hour gap for thyroxine from other things is also recommended.

It is all such a balancing act!!!

[Janll in reply to PMRpro]

That is very interesting, taking Thyroxine at night. As long as it doesn't keep me awake. Good idea, thanks pro!

[dinhal in reply to PMRpro]

More good news

[Sparfy in reply to PMRpro]

I read about the connection to Alzheimer's this week also!

[Megams]

~Thank you for this interesting thread - going to try taking my Synthyroid with my meal at night (never been able to take on empty stomach) & gauge what difference this makes. Any sleep issues with anyone who may have tried this method?

My sleep has often been challenging but dreadful of late. Not made any easier by using my CPAP machine but have the latest mask which is better than the previous ones.

PMR pro - can u tell me if I am creating problems by shifting the time I take my 2nd dose of Hydrocortisone from 10pm. For the last 2 days have taken it at 2.15pm on recommendation of Chemist - tried ringing Rheumy's rooms but he is away on a course.

Anyway spoke with a chemist about my sleep issues especially from my difficult week last week ( in hospital 3 days with rapid onset gastro plus the loss of my beloved cat in awful circumstances). Feel the stress on the body has set me back a little & so listless today - have eye infection & developed light cold.

Chemist suggested that by taking 2nd dose @ 10pm at night is not good insofar that the body is wide awake & rearing to go (7 hours on it takes to reach the bowel as mentioned). I awaken every hour some nights, other nights every 2 or 3 hours. Doing all the right things but desperately seeking at least some sound sleep.

Any thoughts most appreciated please?

[Janll in reply to Megams]

What a rough week you've had Megams and with little sleep just makes everything worse. I've been recommended Boswellia by my hearbalist. She swears by the purity of the brand she uses. Since taking that I have slept beautifully. I tried NOT using it for two days just to see if it made any difference. Yes, it did and my sleep was very interrupted. About your Thyroid medication .... all that I read about when to dose it always recommends to take on an empty stomach and at least 30 minutes before any food or caffeine type drinks. Can't imagine how you must feel loosing your cat. They are such good companions!

Jan

[Megams in reply to Janll]

~Thankyou Janll for your response & kinds words - my TRUFFLES was my best buddy especially during my low moments of PMR. I have her ashes back home now which is comforting after all she went through in her last hours.

Know Boswellia well but can not take since being on my Hydrocortisone. Also my gut does not tolerate it one bit either.

Ashwaganda has always been a favorite of my pre PMR & was able to tolerate with great success. They do not mix whilst on our meds (steroids) & will interfere with the work the steroid is trying to achieve.

Tried taking thyroid meds (about 6 years ago for hypothyroid) on empty tum, no go for stomach one bit - taken with breakfast & a little fine tuning the balance is OK as my bloods eventually revealed.

I do take a range of other natural supplements but only after research with my "other Functional GP" who guides me.

Take good care & thank you for your kind response

[HeronNS in reply to Megams]

Megams, I am so sorry to hear you have lost your pet. I remember when our old cat had to be put down and I saw her little body just before we interred her in our backyard I felt a wave of gratitude towards her for having been in my life. Pets are very special.

I intended to remain cat free for a while but made the "mistake" of reading a sign posted in the vet's office and next thing I knew I had rehomed two delightful (but initially tremendously obese) creatures whose owner was moving to Europe. In the ensuing five or six years we've managed to reduce their weight to a healthy level and they give us a lot of pleasure. But I still miss tiny old Roo and her huge purr!

[Megams in reply to HeronNS]

~Heron - thank you very much for your kind thoughts. She was an intuitive gal, only 3 & a bit years old, incredibly entertaining with a huge personality - an SPCA rescued special who fell on her feet with us. That's her now taking pride of place with the change of pic. Her tail was familiar to a toi toi if you know what that is - a glorious furry tail that she held up with pride & when she walked it swayed & swished side to side.

I too want some space to grieve but will no doubt make the same mistake as you & find a new companion fairly soon. Can't stand the quiet house plus autumn is now upon us so nearly time for me to hunker down once temps drop & snuggle up with a warm soft purring friend.

Bless Roo - you will never forget her & what a great job you are doing for your new darlings since Roo departed this world - we never forget those wonderful memories.

[PMRpro Ambassador in reply to Megams]

This (a pretty good resource by the way)

pituitary.org.uk/informatio...

says

"The usual dose for hydrocortisone is 15-20mg by mouth, split over two or three times daily, and depending on your individual endocrinologist’s recommendations. For example: 10mg before getting out of bed in the morning, 5mg at mid-day and 5mg no later than 6pm. Hydrocortisone should ideally be taken with water and is better absorbed if taken before food. The usual dose for prednisolone is 5-7mg by mouth, split over two times daily."

So obviously it is a personal doctor-thing to take it at 10pm. I presume though yours is working on the time he says it takes to get into the blood - are they enteric coated or something for 7 hours because the normal stuff reaches its peak in the blood after an hour? Or have I misunderstood what you said?

Whatever - if it gets to the blood in an hour and you take half it at 10pm - no wonder you can't sleep!

[Megams in reply to PMRpro]

~Thanks PMRpro for this link which I will study in more depth after I can absorb the information - got one eye open right now.

You might remember we discussed this quite some time ago. From memory you made a suggestion to take my 2 split does to coincide with the body's own release of cortisol plus the inflammation - forgive me for not getting this right as my brain is on another planet, its 4am & have been awake 3 times, 9 times restless (according to my Fitbit app) so thus far managed 4 hrs 23 mins sleep.

I am the lady with the terribly sensitive gut (made worse again recently with gastro issues) & my Hydrocortisone is made in an acid resistant capsule which takes 7 hours to work through my system to reach the large bowel leaving small bowel & stomach alone. Has worked well for last 2 and a bit years. Initially pred eroded my gut (no enteric coated in NZ) & a range of PPI's to protect gut left me worse off with side effects.

I am presently taking 10mg at 10am & was taking the other 10mg about 10pm - am into day 3 of having changed time of dose but after reading your response to Janll I don't want to unleash more inflammation whereby creating a flare in PMR.

Due to the force of the vomiting I could not get my breath & note on my discharge summary that the hospital is referring me to Cardiology but will take months for apptment - I wonder if this is added to the mix?

[PMRpro Ambassador in reply to Megams]

Yes, remember now - it was there at the back of my mind! But the chemist's instruction confused me - unless I'm missing something?

To fit with the timing in the article you would take one dose immediately before bed to give the early morning boost and the other also 7 hours before you need it in the afternoon - so why did the chemist suggest 2.15pm? I'd have thought that was far too late and your high blood level of HC is going to happen in the late evening, just when you don't want it. Had he registered the 7 hour delay?

If you are taking the HC twice a day anyway I honestly don't think the inflammation is too much of an issue.

[Megams in reply to PMRpro]

~Thanks again PMR pro - this chemist did not know my history nor did he seem to know much about PMR. He initially suggested taking both doses in the morning but I told him that it must be a split dose so it was suggested mid afternoon.

I was taking at 10pm as suggested by you - should I pull this forward to before bed as you suggest & maybe still stick at the 10am for morning dose still?

Also really relieved to read your last sentence re inflammation.

With all that has been going on I have been meaning to do a new thread about another topic as mentioned weeks ago - might just do this now & see what response I get from any others.

My kindest once more PMRpro - you are an asset beyond words to this community

[PMRpro Ambassador in reply to Megams]

Nooo-ooo - think I might bodyswerve him in future! And they are so keen in the UK that patients should ask their pharmacist for advice!

I find it very difficult to take them seriously about a response to "what do I take for x..." when I look at some of the utter junk they stock on their shelves...