I don’t have to eat my hat!

[Soraya_PMR]

I think I said I’d do that if I was osteoporotic.

Saw consultant today and my T scores are 0 and 0.5 (spine/hip). So that’s my answer to the AAcid sorted 😀

Blood tests all normal, CRP less than 1. ESR 8 I think she said. Which is fine and dandy, as ‘the steroids have inflammation under control’.

We went through my records of pred dose, she agrees at 10mg I had a flare, via 15 now at 12. She told me to SLOW DOWN! 1mg per month, no faster, some people just can’t reduce as fast. (All my own fault NEEDING to get to 10, half of my starting dose!) Methotrexate was mentioned IF I can’t get lower, but she already guessed my reaction to that without asking.

On the down side I showed her my BP readings which vary from left to right arm, and she’s sending me for an urgent CT with contrast to check my aorta and arteries. Repeat ANA, ANCA and immunoglobulin today. Also a C3 and C4, shall have to look those ones up unless anyone can enlighten me? I know I had ANA, IG and rheum factor done in September, so assume they were OK then. So I shan’t panic, this seems like a responsible thing to check. She also asked about any GCA symptoms, fleeting temple pain and jaw stiffness, but not for months, no crashing headaches, so fingers crossed.

Oh and in passing she said that PMR is the mild end of the vasculitis spectrum, so all in all I’m impressed with her knowledge and attitude. Poor love did seem to be somewhat stressed/hurried, but did ask if I had anything else to ask her. No registrar working with her.

Back again in 4 months. Now to de stress!

[SheffieldJane]

That all sounds pretty positive Soraya. My blood pressure readings also had different readings of more than 10 points between the left and right arm. I was sent for an ultrasound test to look at my veins and arteries. The technician concentrated mainly on my neck and shoulders. I was puzzled by this because my Rheumatology Registrar had mentioned that the test was to discover whether I had Aortic Stenosis. However the very thorough Technician said that this was highly unlikely because my blood flow was normal. I am not 100% certain that I am out of the woods, but it looks like it. I postponed my next Rheumatology appointment because it clashed with a pre- arranged trip to Berlin ( Christmas Market etc.) Then I am going to Australia for a month. I hope I am not being foolhardy. I also have high blood sugar 45 I think. Do you think I am being foolhardy?

[PMRpro Ambassador in reply to SheffieldJane]

The most common cause of imbalanced BPs is subclavian steal syndrome - which involves (surprise surprise) the subclavian artery which is under the clavicle (collarbone). Hence head and neck...

Foolhardy? No idea - did you tell Sarah?

[SheffieldJane in reply to PMRpro]

No I’d better ring really. I was just concerned that something might be prescribed for Diabetes 2. Although I’d rather try diet - plenty of room for improvement there, I’ve been quite lax of late, I get away with nothing.

[Hidden in reply to SheffieldJane]

Is the blood glucose measurement mmol or the new measuring system on meter or hba1c?

[PMRpro Ambassador]

C3 and C4 are complement tests:

labtestsonline.org/understa...

Slow down????? Hallelujah! Who and where?

All sounds good. Four months is fair enough.

What a shame - you eating your hat might have been fun...

[Soraya_PMR in reply to PMRpro]

Same link I read earlier, but thanks for info. Seems an appropriate test for AI.

I’ll PM you who and where, might be useful for someone in this neck of the woods.

I may still have a hat to eat! Said to the vet I’d eat my hat if Doli wasn’t diabetic. She isn’t. Just Cushings.

Jane, can you reduce the blood sugar? Maybe message your rheum to let her know your plans? I’m sure the break will be good for you, are you on an even keel currently?

[SheffieldJane in reply to Soraya_PMR]

Yes I have a lot of scope to improve my diet. The GP’s letter mentioned medication. id like to avoid that if I can.

Just the usual fatigue and sticking at 7 mgs for now, any attempt to go lower produces shoulder pain and flu feelings.

[Soraya_PMR in reply to SheffieldJane]

If you lost a teeny bit of weight, there’d be less body for the 7mg to cope with? That might make you feel better without actually increasing your dose. That would start the ball rolling for the new year. Think positive Jane! YOU CAN DO IT! You don’t want even more pills rattling round.

[SheffieldJane in reply to Soraya_PMR]

I just wondered if it was safe to try a dietary approach for a while rather than go on meds? Raised blood sugar is a first for me but I have been giving in the sugar cravings in a kind of defeated way, like we do sometimes.

[Hidden in reply to SheffieldJane]

Sorry it's a confused post. I have used mmol for years then a couple of years ago Nhs went to %. Three me and Drs into confusion.

[PMRpro Ambassador in reply to SheffieldJane]

Of course it is safe to do diet first - that is what is always done first here. And odd BS values are less significant than the Hba1c.

[SheffieldJane in reply to Soraya_PMR]

That is an interesting killing too birds with one stone idea. My HbA1c is at 45. If I started a sensible diet, hopefully it would combat that too. Do you mean that if I become a smaller person, I would need less Pred. I haven’t thought of that Soraya. Mind you I suppose Pred would do more harm at lower doses to a smaller body I expect. It is confusing, what PMRPro calls the nesting on this site. Not sure who is responding to what sometimes.

[SheffieldJane in reply to SheffieldJane]

Sorry Soraya. That is not what you mean at all. We are in the world of blood sugars duh!

The advice is sound though.

[Soraya_PMR in reply to SheffieldJane]

Yup! I’m confused by the ‘nesting’ too 🙄

This to Jane: yes I think you get what I mean. Many drugs are given by weight (think of anaesthetics which are finely tuned; or meds for children) Pred is not included to my knowledge, but might sensibly be included. I doubt that an 8 stone petite lady would need as high a starting dose of pred as say a fifteen stone male. Therefore if you lost some weight it’s possible that you MIGHT reduce the amount of pred your body requires; or conversely receive more benefit from a static dose as the body:pred ratio has changed. Does that make sense? I am of course lifting this idea direct from my brain with nothing scientific to back it up, but I bet PMR-Pro can!!😉

So while you’re addressing a potentially high BS, you could benefit two fold, less weight, and less inflammatory sugars in your system. Then you begin to feel more energised as you eliminate the sugar peaks and troughs, you get more ‘sensible’ energy at an even rate, you can do more, leads to more weight loss.....crikey if this works you’ll be a new woman come Spring Jane!!!

I absolutely get that ‘defeated sugar craving’. It’s not really defeat, it’s weariness from the constant battle that is PMR (pred dose; pains; fatigue; diet; depression; trying to be ‘normal’ for appearances sake...I win here because I don’t think I’ve ever been normal 😎) if you build in small treats daily then you can WIN! For me two squares of dark chocolate at bedtime. Yum. Worth waiting all day for as you know it’s on its way 👍🏼

Did you see my link ?2 days ago to The Lancet article? Reversing type 2 diabetes by weight loss? Thus you can certainly lower your BS and prevent the use of medications. According to The Lancet this can all be done in Primary Care. If you’re struggling ask for a dietitian referral from your GP. Although you know it’s simple really...ditch the carbs.

[SheffieldJane in reply to Soraya_PMR]

I did see your link, thanks for posting it. I do like your logical, instinctive thinking here. I think it is motivating to me to think this way. I gain a lot from your posts.

With most diseases one expects the recovery to be linear, improving all the time. With this disease it seems to go through many incarnations until you are not quite sure if you are better or worse. Pain and lack of flexibility is the least of my problems now. I seem instead to have a kind of general debility, exhaustion, headaches, soo cold, sugar cravings, strange nights and odd shifting symptoms.

Medical advice seems pretty one dimensional at a primary level,, symptoms being treated in isolation with yet more drugs being offered. No joined up thinking or making links at all, no treating of the whole person as an individual.

Of course my cure is little Theo aged 3 currently residing on the East Coast of Australia.

Talk about motivation!

[Soraya_PMR in reply to SheffieldJane]

Bone cold, exhausted and headache was me pre-pred. 3 in the afternoon would find me wrapped in blankets, stuffed with heat pads and unable to do anything but sleep.

No not linear, not that easy! Cyclical, with peaks and troughs, and an odd googly bowled in for good measure is more like it.

So your PMR could have elevated itself above your pred dose???

I’m glad my waffle has been of benefit to someone!

Now let’s imagine Theo’s little face when he comes home and finds his granny (?grandma ?nanny) so much more energetic and ready to play 3yo games 🙃

[Hidden in reply to SheffieldJane]

I think it's what my old aubts etc called flitting disease. Flits from one part of body to an other on a whim.

[SheffieldJane in reply to SheffieldJane]

Too birds! For goodness sake Jane! 🤨

[PMRpro Ambassador in reply to SheffieldJane]

SJ - One way of looking at Type 2 diabetes is there being too much body for the pancreas to manage. Reduce the body - pancreas gets better control.

"Haemoglobin A1c (HbA1c) testing to diagnose diabetes. An HbA1c of 48mmol/mol (6.5%) is recommended as the cut off point for diagnosing diabetes. A value of less than 48mmol/mol (6.5%) does not exclude diabetes diagnosed using glucose tests."

So you are not diabetic yet - you are pre-diabetic. Someone has reduced her Hba1c from 46 to 41 just by cutting carbs drastically.

There is some relationship between weight and pred dose - but the bioavialability (the amount you absorb) is more significant. You could be a small person and only absorb 50% - so need more than the bigger person who absorbs 90%.

[Soraya_PMR in reply to PMRpro]

I’ve gained more than a stone, could that be a contributory factor in my reducing pred? There’s 10% more of me now, I assume my personal bioavailability won’t change (excluding tummy upsets).

It’s not straightforward is it.

[SheffieldJane in reply to PMRpro]

Thank you that’s clear. Operation shrink has already started. ( PMRPro)

I’ve been a fool lately. All the recent comfort food can go!

My husband is rather a nurturer. He cooks for us mostly really, really, well. I need to get him on side. Trouble is he and my son are tall and slim. They get thin really quickly.

I am going to have to do my dismal meals myself I guess. 😕 🥗🥦

[PMRpro Ambassador in reply to SheffieldJane]

My meals aren't dismal - there is wonderful stuff we can eat (scrambled eggs and smoked salmon for brekky for example).

And that is a mindset that is set to fail: don't think about what you can't eat, think about what you CAN eat. You will find there is more of the latter than the former! And because you are looking to lose weight and your portions also will be smaller - you can afford the goodies that you perceive as expensive!

[SheffieldJane in reply to PMRpro]

You are quite right of course PMRPro I have to stamp my feet a bit before I make a change. That breakfast sounds good. Off to Berlin tomorrow. That may be hard - sausages-.

[PMRpro Ambassador in reply to SheffieldJane]

Currywurst... No carbs in German sausages you know!!!!

[SheffieldJane in reply to PMRpro]

Really? Things are looking up. I guess there is a lot of sugar gluhwein though.

[PMRpro Ambassador in reply to SheffieldJane]

Usually yes! I can't drink commercial stuff although most cafes making their own hand out sugar so I don't use it - usually make my own when I do drink it.

Re bangers - they are meat, fat and herbs/spices. No breadcrumbs or cereal at all so they are usually over 90% meat.

[SheffieldJane in reply to PMRpro]

Thank you. 🎄

[Hidden in reply to SheffieldJane]

Just checking again. Is that figure 45 in % or mmol? I suspect it's % which gives you mil of 7.4.. "normal" range is 4-8. Just minor dietary changes can lower it to 6ish. Less milk, halve bread or other carbs from current level.

If it's your own meter rather than hba1c the timing of test everything..is it morning fasting test pre pred? Or post pred.

Just on way to have regular bloods for hba1c. Last one 54. No idea what it's doing ni w. Was 114.

[SheffieldJane in reply to Hidden]

That’s useful Poopadoop so I can get myself out of the woods quite easily at this level?

That is a good incentive. I am bound to get the sickness and diarrhoea associated with the initial drug - I get everything. I’d rather avoid killing my appetite that way.

I always lose weight in Australia, it’s too hot to eat much.

Thank heavens for nurses and other medics on here. You are down where it matters.

[Hidden in reply to SheffieldJane]

It should be relatively easy. It's only because of pred they are suggesting meds I should think. Mix any carb with good fats and high fibre if you can.

It's fantastic having people who can help at your fingertips!

[DorsetLady PMRGCAuk volunteer]

Who do think you are - Carmen Miranda! Might be quite a tasty hat! 🍒🍇🍓🍊🥝👒

[Soraya_PMR in reply to DorsetLady]

Tasty it might be, but I shall first have to check the carbohydrate content 😉

[SheffieldJane]

I object to being told that I can’t have a banana when I haven’t dealt with cake yet.😤

I don’t think Pred deals with the flu type symptoms and the exhaustion of the autoimmune disease. It is just good at the pain and stiffness. I think that’s why we don’t feel that great even though inflammation levels have normalised. Or that’s how I rationalise feeling like er not good.

[Hidden in reply to SheffieldJane]

My diabetes nurse has said some fruit fine but must confess I try not to have bananas as they seem to mess me up. People tend not to.worty about cow's milk but I have used it to tackle hypo in past and worked quicker and better than glucose for some reason.

[SheffieldJane]

Thanks for the tips!