Suspected PMR & Prednisolone dosage query

The "proof" test would be a very short course for about a week or two the time you can take pred for and stop it without tapering.

My wheat allergy also faded to nothing while I was on higher doses - comes back below 10 though 

Thank you, Anhaga.  This forum is a great help to me, and your input, along with Eileen’s and others give us an intelligent perspective on what this PMR is all about.  

My previous MD started me on 40 mg pred when I was finally diagnosed with PMR. (Yes 40.  She also told me that I would be over this in a few months.  Not really her fault, I’m very likely the first PMR case she had encountered.  Long story short, I rushed to cut back on the pred and hit a road block at 2mg.  I learned from this forum that slow and steady wins the race, but being a competitive type, I thought I knew better, and raced more like the rabbit than the tortoise.  Had to go back to 12mg before I felt relief, and now back down to 10mg.  Although I have the personality and competitive temperament of the rabbit, I now know that the tortoise wins this race.

Dont like the side effects of pred.  My biggest problems are profuse sweating when active, and thin skin. (On higher doses of pred even my glasses resting on my nose are painful.)  But, considering the alternative, I’ll stick with the prednisone and stop complaining.

 

Agreed! Knowledge is power and this platform has provided me with solid evidence-based information — citations often included and with links to the research no less!! This has allowed me to be an active partner in managing my PMR experience.

The info here is conveyed frankly and intelligently, providing direct support for my identity as an active  and knowledgeable advocate — not a victim — throughout these years.

I’ve said it once and I’ll say it again: it is a goldmine and I am grateful. 

Your account is just what new to PMR patients need. Information ( but not too much);  advice ( don't kick too hard against the pricks);  encouragement and hope. 

I'd like to think that PMR has made me a better person, too. I'll ask my friends and family!

Ha - the Energizer Bunny.....I felt just like that Bunny in the beginning - I had never had sooo much energy or enthusiasm before - stripping off and washing sofa covers, painting my kicthen cabinets with no fatigue but plenty of  insomia - I felt great but need to cast my mind back to what dose I was on then....it was a brilliant feelng but it all went to pot when I reduced to 10 mg......and even more so after stopping the 10 to zero - Did your energizer bunny feeling diminish as your dose went down....just curious, as I would put up with all the sweating, insomia and weight gaining side effects if I still had that energy...it really gave me a boost and I hadn't felt ike that for donkeys ears ! As it is now, I could sleep for England and can't get any get up and go in the mornings at all....and haven't completed my depressing kitchen mess......x

I can't say I felt unusually energetic, but I was happy I could do things without pain.  My husband was the one who thought I was very energetic.  When I got to 7 I hit a wall of fatigue and I have to say that the times of feeling on top of the world are very few and far between, and usually only last for a couple of hours.  I may be in a bit of denial about adrenal sluggishness.  I've been at such a low dose or so long with only a couple of short lived hiccups that I really think I should have more energy now.  Today I feel unusually exhausted.  It's like my legs weigh a ton and I can hardly move.  And I have so much to do.  My current dose is 1.5 with the occasional day when I poke the dragon and take 1.  Can't say I'm even on a proper DSNS regimen right now because whenever I try that I start to flare.  

Ay yi yi!! Is this what I still have to look forward to? I'm on 15mg (just down from 16.5 two days ago), and I can barely keep my eyes open NOW! What happens next?? Complete coma??! Ughhh

The fatigue with the drop from 10mg to zero would have been adrenal function lagging a long way behind. I can't remember - what dose are you on now? To be at 10mg after less than 4 months is fast, far too fast whatever some of the medical literature may say - and has probably outstripped your PMR disease activity. Although the starting doses do give a pred boost that does fade as you reduce - but the disease is still very active making you fatigued - and that must be managed by pacing. Pred helps a bit, but it doesn't stay like that for most people. I could sleep for England with pMR and being so fatigued now is usually as sign the inflammation isn't properly under control.

I can't easily find the post about this on patient - but here is a link to the same post somewhere else:

https://healthunlocked.com/pmrgcauk/posts/135650532/fatigue-pacing-spoons-and-a-gorilla...

Ha Ha - that's ok Anhaga.....for some reason I wasn't getting notifications through my email and thought I had been desserted and then I saw all the 'misunderstanding' messages and thought WTH.....it is so easy to not get the internation but at the same time I expect people are very susceptible to mood swings and be upset easily.....I know how easy that is but always take a step back and re-read before I respond to anything as once that return button is pressed, it's out there! Wished I had taken more notice and re-read my docs letter about my dosage though - ha!

I hope all the misunderstandings have a line drawn under them now and we can get back to helping each other - it's a godsend for me as I Ilve alone and have no sounding board.......

SO, getting back to my last thread.....weight gain....I will try a low carbs diet - though not easy when I think about it......but I can't gain all the weight I lost before my knee replacements...I will be devastated as it was hard work and as I said before, my diet hasn't changed since being on the Pred, so I don't kow why but it is a massive gain in such a short space of time, so if anyone has a format I could follow please let me know........

Be happy everyone, as best you can under the circs...x

Oh and yes - feeling much better thank you......x

BTW - all my email notifications went into my SPAM folder.....rectified now...x

Hey Missy (if I may be bold as to shorten and nickname your username),

Wrt the weight issue, may I suggest that you try a 21 day sugar detox? If you can make it 21 days w/out sugar your body will stop craving it sweets and refined carbs. They’ll actually start to taste icky (to use the technical term) I see sugar the way I saw smoking. And I saw getting off sugar as I saw quitting smoking: a 21 day project. It didn’t work the first time but I learned a lot and when I tried it sugar it took. 

Best of luck...and one word of quoting advise: no guilt/tomorrow is another day.

I agree with Harrie.  You may be surprised when you examine your diet just how much sugar and/or carbs you are actually consuming.  I don't have a weight problem, thankfully, but I did get elevated sugar when I started pred.  I was astonished how much wheat I ate in those days!  Replaced it with more protein (eggs, pumpkin seeds and an orange for breakfast instead of a big bowl of cereal) and almost eliminated "white carbs" including potatoes and pasta.  I am quite thin so I did continue with other root vegetables and I eat a small amount of rice.  Wheat has become a treat!  I now crave leafy greens.  Blood sugar is normal, but that was in conjunction with pred taper as well as strict diet.  And I don't eat much fruit, an orange, my bone-friendly prunes and usually one other helping of fruit during the day.  No juice, no fruit flavoured yoghurt, nothing with added sugar.

Good Luck!  You can do it!  

Anhaga and Harrie...wow...that's some ask...my original weight loss was low fats/sugars following the Slimming World regime...it worked eventually but was very slow - I lost over 3 stone in as many years it seemed...ha !.....about the only program for weight loss that ever did work though as I have always had a battle with it since my 50's but you didn't cut out any food groups - just limited some i.e. carbs...still nothing ventured nothing gained (!quote!)....will give it a go....shame i have just got back from a food shop...lol....is there any reading on-line i can do to help with it properly ? Much appreciated.....Maggie xx

It’s by no means easy, Maggie. You’re playing the long, long game. So the worse thing you can do is ever beat yourself up on this path. But as Anhaga confirms, it is shocking how your very perception of food will change. You can also start by cutting out all sodas and juices/snacks with glucose-fructose before you try the 21 day sugar detox. This is all about showing care and yes, love, for yourself by eating foods that love you back. It’s slow but worth it. It’s taken me years and I still have more work to do but I just keep chipping away. I promise you’ll see and feel better with every new clean-eating habit you add to your life.

Take care, sweetie!

When you crave sugar it's not because of your own personality.  It's because the little critters which populate your gut love sugar and are begging your brain to give them more.  It doesn't take very long to change the balance of that internal environment but you will have to be very stern with the creatures and deny them completely, as Harrie says.  I no longer crave chocolate.  I can take or leave a sweet, a piece of bread, a cookie.  But I now crave leafy greens.  Go figure!  But it's because my internal microcosm has been altered.  

It's soooo hard to relate to that happening, but I'm going to give it a go! Leafy greens over a baked potato??😱!!....hmmmmm

Well....def will give it a go...I take a very good probiotic for gut bacteria - helped a great deal with my IBS.....I find if I stop drinking the odd glasses of wine my craving for chocolate increases...so there's method in this madness assooo much sugar in the vino....my overall diet isn't too bad since SW - I don't drink soda's - mainly water or tea without milk, I eat plenty of fresh veg with mainly chicken and fish (mostly salmon) - i could cut out pasta and rice which i don't have often...but will miss my small whole meal sandwich for lunch or the odd jacket pot.....I found it hard to break that mould before and almost started clucking.....plus hard boiled eggs got a bit much......but hey ho...will give it a go and let you know how I get on......thanks to you both - Anhaga and Harrie and everyone for your support on here.....watch this space.....but give it a week or so before I report back with my first finding....now I'm off hunting for my discipline......I know it's around the apartment somehere .......lol x 

You can go back to a glass of wine with dinner now and then after the 21 days detox. God knows I couldn’t live in a world without wine. Even though now about 1/2 a glass is plenty to feel social and toast the day.

That is very interesting.  Could the balance of our gut bacteria be the reason for some of us seeming to be naturally slim while other pile on the pounds?

I saw a programme on BBC television about it a while back.  The researchers didn't recommend the drinks that contain bacteria as they said most of the bacteria get killed by stomach acid plus it may not be the bacteria you need.  A university (sorry I can't remember which one) developed a substance that fed your own individual bacteria.   It is marketed as Biomuno and is made from lentils. It did seem to work wonders on my IBS!

That’s very interesting Anhaga.  I’ve found out my blood sugars are raised by Pred so am going to try low carb. My problem is when I cut out cereals constipation becomes a problem. Any suggestions? I drink lots of water. Also I never knew prunes are good for bones, that’s good to know. Thank you

We get Trust Me I'm a Doctor a few years after it appears in the UK and one of the doctors went to another country, I think it was Israel, to have her response to certain foods recorded and her gut microbiome measured.  Afterwards she was prescribed a certain diet which was supposed to rebalance the microbiome.  A change was noted within days.  I believe this was fairly early days of a research project which has probably resulted in products like Biomuno.  It does seem that feeding the right kind of microorganisms, and starving the ones which are making us fat or diabetic, is the best way to proceed as we really don't know how many of them survive the journey through the stomach.  

Oh I hate that.  There's this perfectly innocuous word which gets filtered and I forgot and used it.  And forgot to copy my text.  Sigh.  

It is, apparently, the boron they contain, although other foods also contain boron.

Things Take Time. by Piet Hein

T.T.T.

Put up in a place

where it's easy to see

the cryptic admonishment

T.T.T.

When you feel how depressingly

slowly you climb,

it's well to remember that

Things Take Time.

 

Not a problem for me.  I don't eat meat, maybe that's why?

This site

https://www.dietdoctor.com/

has very clear and easy to remember info - they have photo collages of various fruit and veg and other foods with carb contents so you see that asparagus has far less carb than a potato! 

When you are on pred it changes the way your body processes carbs and makes the blood sugar spikes higher and more frequent, even without having eaten carbs. By reducing the carbs you can, the other spikes caused by the liver just releasing glucose become less significant. And it is the insulin produced in response to them that makes the sugar land as fat deposits on midriff, face and neck. That why low carb helps immensely.

Um - preferably NOT over a baked potato if you are trying to eat low carb!

It is very probably our get-out clause!

Prebiotics are as important as the probiotics - prebiotics provide the base for the bacteria to thrive on.

This is all about how researchers at Reading Uni developed it:

https://impact.ref.ac.uk/CaseStudies/CaseStudy.aspx?Id=37248

Thanks for this Eileen.  I will read it properly, I find it very interesting.

TTT

I've only recently persuaded myself to believe that.

I read somewhere that we have personal  speeds. Forced out of them and we no longer function optimally. Mine is on the fast side as far as I can tell by comparing myself with those around me so old age is not something I have found straightforward.

Earlier this year I had a lot of pain, maybe from OA but who knows? Wondered whether PMR was back but markers were low. Too much gardening? Minor injuries and strains are inevitable. Knee hurt, hip ( the unreplaced one ) hurt. Shoulder hurt. Went on for weeks but last week or so all seem to have resolved.

I'l make myself a large TTT notice and put it on the back door.

At the place I go swimming, they have a cafeteria with healthy, skinny food, every sort of milk you can think of. It always amuses me as they have a board advertising skinny baked potatoes! I try and fool myself that the panini I have with chicken and mozzarella cheese is skinny too, I suppose it does have pesto. 

What are they - small ones?????????

Eat the filling, skip the panini.

Have you tried dissecting a panini with melted mozzarella? I would be left with virtually nothing and I happen to enjoy a panini occasionally. 

Haha, I was just joking!  

Good joke.