Last time I was on I mentioned headaches, problem with my eye kids and feelings of weakness.
On advice from some of you guys I tried to get the ball rolling to see someone. I spent half a day on the phone after calling 911 and in the end gave up with the only advice being that if things got worse I should go to my local A & E ( wait time up to 8 hours )
Of course it never happened and I am still dealing with the symptoms with an appointment at 9 am Monday.
In the meantime on another matter, as I posted previously I have been using a CGM for the last 2 weeks and have been rigorously following a diet to address the diabetic issue, but what I can't figure out is why WHATEVER I eat and whenever I eat my glucose goes through the roof ( 12%) +/- is this all down to the pred ?
My main consumption over the holidays was fruit and salads
Anyway would be interested to know your comments
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Bridekirk
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Probably the pred in addition to what you were eating - but it is meant to go up some when you eat any carbs. What are the actual figures you are seeing?
Beware of fruits - they contain a lot of fructose, still a sugar, still carb. And you are an American - what do YOU call salads? When I say I eat salads, I mean lettuce leaves, rucola, lambs lettuce, cucumber, tomatoes. I don't mean pasta salad, potato salad or the other composite salad dishes used in the USA.
Hi. thanks for reply. Salad for me is little Gem lettuce Tomato, Cucumber, Celery, olives with a little fetta, drizzle of Salad Cream and a few slices of chicken or Turkey, or sardines. 1 x slice of lightly buttered brown seeded Tescos bread followed by unsweetened apples flavoured with a few spices with Greek Yoghurt
Then I don't think I'd worry. Normal blood sugar levels 2 hours after eating are between 4.0 and 5.4 mmol/L. If it were much higher then yes, but that is fine for someone on pred. You can't know when there has been a spike of glucose due to the pred. Still plenty of insulin being produced, the cells are still responding - so not Type 2. As I say, that meal represented probably 50g carbs by the time you add it all up - bread, apple, tomato, salad cream and yoghurt. Even lettuce and celery has a bit of carb and they all count. And when your body has been eating low carbs for a while, then it reacts more when it meets them.
Not really astounding, just a lifetime in a science environment learning and picking up a lot of things along the way. Ask me about normal female interests and I haven't a clue!!!!
There are some quite surprising things that can result in raised BS - even missing breakfast can lead to higher post prandial levels later! It is very complex so just looking at individual absolute numbers isn't necessarily what you need.
I don't always retain all the details - but I know how to check on that little bell ringing at the back of my mind to be sure I'm remembering correctly!! And of course, things that are relevant here are in use fairly often.
Oh,so no female interests such as Bingo,pole dancing( perish the thought!) or hen parties?Glad I am not the the only one!You stick to your lovely walks etc,leave the girly stuff to the WAGS.!xxxx😂😂😱😜Woke up to snow,but now raining,just hope my great grandson gets back safely to Cambridge today.,xx
My daughter did poledancing - reckoned it gave her a better work out than the gym!! The thought of being put in a care home where the entertainment includes bingo is terrifying ...
Good for her!!The thought of a care home is enough to put me in a spin.Worked in a couple,shocking,but one that was for Dementia alone was superb.Run by 2 men who were caring,efficient and god help any member of staff who talked between themselves when a patient was present.Total respect they gave the patients and we all had total respect for them.To be truthful,I am still able to lift my leg right up on work surfaces to do toenails,steristrips etc,just the top half that feels like it is totally shot!Any suggestions?Just washing up or stick vacuum cleaner makes me want to howl!Snow clearing now,quite mild outside really but not time to get my bikini out yet! Stay warm PRO!xxx❄️🌨️😜💐
I have a dishwasher and a cleaner for 1 hour a week for the vacuuming. Anything between is swept to the corner ... I have already identified a tiny dishwasher for when I have my granny flat with the daughter 😜
Already have a dishwasher but still have washing up etc .Have to vacuum everyday because of animals but since having this damn disease have found that everything aches after little effort.Just hoping that it is the old adrenal s doing it and DOMS.Really could have wept yesterday,pain so severe in shoulders neck etc ,even took a spoonful of Oramorph given to me for back if it gets severe.Had a real Pity Party for myself!Not ready for that granny flat yet are you?xx💐😜
Depends how you look at it - it is only a replacement for where I live now that removes the need to run a place of my own in the UK - saving on council tax, sharing household bills and no maintenance worries of my own. I can still live independently, have a car and go off on trips to visit friends in the UK. Don't want to be in a position where they have to rush out here and scramble to get something sorted.
My daughter has one of the robot vacuums - not good enough on its own but finds that setting it off daily reduces the real vacuuming immensely.
Makes sense what you are saying about your own circumstances,well prepared I’d say!The robots are ok a friend of mine had it but probably not powerful enough for dogs hairs that resemble javelins from chihuahua and the long haired Shepherd.Just got to try and get into the mindset that all I am doing is hurting myself and making my life a misery!Easy day today,and hoping these damn pains ease up tomorrow?Trouble is ,always being houseproud for years ,it is hard to get out of that mindset.,!xxxx😱😢😜💐💐⛷️
She has a dog, a Podenco with longish hair, and 2 cats, one long haired who sheds EVERYWHERE. As I say, just takes some off. I think there is one that is designed for pets. I was forbidden to vacuum by my wonderful orthopod in Germany - because of the damage it does to backs. Mercifully I was never houseproud ...
Might be worth a look then,thanks for that!Could employ a cleaner but that would be admitting defeat to me.,and when I was a housekeeper for a gentleman ,he was amazed that I moved everything to wash or dust,so could not be doing with anybody like that.Guess it will be a robot until my poor old body recovers !xxx💐😜😢
Know what you mean about cleaners, I’ve had a couple who really frustrated me (didn’t mop loo floor, left light switches sticky, never did under anything.. ) but I’m delighted to say I’ve now found a wonderful lady who cleans like billio, is pleasant, reliable etc. She even got me marrons glacées (my favourite) for Christmas 😊
My point is, you’ve worked hard all your life, why should you suffer now that you could do with a hand?? I seriously couldn’t manage without my fortnightly help and I actually feel more in control now than I did when I was struggling.
Please don’t hurt yourself. Bite the bullet and get some help, whether robotic or a person or both!
Mine is far from perfect and if I wanted her for more, I doubt I'd choose her. But she vacuums and does one other job I struggle with - cleaning the kitchen properly, changing the bedding, cleans the bathrooms. I have had one wonder-cleaner - a friend who needed a small job but had small children and no childcare. So she brought the children and between us we kept an eye on them and I worked if I needed to. All of us happy.
Yes I’ve accepted less than perfect at times, but am just very lucky at the moment!
And my essential jobs are much the same as yours (bedding in particular I cannot do). Things like light switches, the lovely M does out of professional pride 🙏
Hi N,Thankyou for your lovely words.think a cleaner would be out of the question,hardly any near us and they are “ picky” in what they do I have been told.,Think I shall look into the robot thing and a window cleaner but because OH and myself are quite tidy ,minimalist people,think I can manage as long as I slow down and only do what is absolutely necessary.I have even stopped ironing duvet covers!!The shame of it!!Just take them out of tumble dryer,flatten them and put in airing cupboard.Too fussy by half I have been all my life,but have always been a bit regimentated when it comes to the home.My kids always call it “ the show home “ ( won’t tell you what I call theirs!) 😂😂😂😱Time to start thinking of my health a bit more as you say,got to realise that my 100 mile an hour life has gone!Hope you are keeping well N?Stay warm.xx☃️❄️💨💐😜
Frankly I never started ironing duvet covers!! Got my first autoimmune disease at age 29/30 (myasthenia gravis) and have been coping with weak muscles ever since, to one extent or another 🤷♀️
Glad you’re thinking of getting a robot and a window cleaner, that should take some of the pressure off 😊x
I’m okay thanks, muscles a bit unwilling today so am hoping I’m not going to flare.. 🤞
Now one thing I DO iron is duvet covers - love the feeling of freshly ironed cotton!!! Usually iron t-shirts too but haven't bothered the last couple of months. Always covered up in winter anyway.
Here,here!I hang mine up after washing them in bathroom and the heated towel rail and steam from my baths do the trick.,They are a bit stretchy anyway( elastane I think they call it!)No,king size duvet cover from my bed ,too much of a faff,only me in it anyway( and little dog perched on top with his blanket)As you say PMRpro it is winter so who is going to see any wrinkles in our clothes?More worried about the ones on my face!xx😂😱😜
I don't have a double duvet - we switched to 2 singles years ago when OH had cancer. He wanted a winterweight one in the hottest summer for years and I realised that I only slept when we were in German-style double beds which are 2 single mattresses in a double frame with 2 single duvets. Makes changing them easier but still difficult for me. And all I can manage to find in 100% cotton ...
Shame about only 100% cotton for you.Mind you,I think mine might be as wellbut the way I feel ,I don’t care a damn about the creases,couldsleep on sack cloth if it meant not changing beds!Will reply to you a bit later regarding my symptoms PRO,just dishing up dinner.,xxxMany thanks.mxx😜💐😖😭
Me too. And sheets and pillowcases .... I actually find ironing very relaxing. The warmth of the cotton after being skimmed by a steam iron, the folding of them and putting them in a pile in the airing cupbard. And the sheer delight of having them on the bed with all the ironed creases intact!
Absolutely - though mine cycle so to speak, no time for the cupboard! By the time I;ve washed, dried and ironed them it isn't worth it!! Next day back on the bed.
I'm seeing my doc tomorrow fir the first time since starting the meds. I can tell him that over the 3 weeks there is improvement, though more in some areas than other. His and calves and back much better. Tender spots vastly improved though neck and shoulders not quit as good an improvement though definitely better.
Headaches and eyes remain my main concern amd a general feeling if weakness in the muscles like jelly legs and arms and also I appear to have developed a tremor and find it's affecting my hands Not sure if that's the meds or what.
I will tell him I have been takin Calcium and Vit D and am working on the diet guidance
Be interesting to see where I go from here.
My 3 weeks of daily Ored at 15 mg coincides with the appointment
Such a minefield all this flare business ain’t it?I woke up the other night with sweat from head to waist,not had that since diagnosis of GCA.Last couple of days the fatigue has been shocking and shoulders and upper arms aching like hell when I woke up.Bloods are normal so my brain says I am overdoing things then inner me says a flare or adrenals playing up.On 5 th week of taper to 4 1/2 mg so really don’t know what it is.Just a case of watching and waiting I guess.God how I hate this damn disease…….Hope you are not flaring,don’t think the cold weather helps either does it eh?xxx💐☃️❄️😜😱
So sorry to hear of your current situation, I feel for tou !. It sure seems to be a game of Hide and Seek and knowing what to do and when doesn't it !
I will of course tell him I have started my own research on here and I suppose as a "newbi" to all this ( and a new doctor) I will just follow his advice abd suck it and see.
I mean yes I do feel better, though not as great as I did at the end of the first week, and this headache business is a worry, but all will become clear.
Hi PRO,had the funny tingling ,itchy scalp for quite a few days .On off temple pain but because of Straight Neck Syndrome,just put it down to that.The waking up with achey shoulders and forearms was a first,especially as Ihad been in bed all night!When I got GCA I had the chronic groin pain,hips etc,fullness in ear and pressure in head.Not felt great for a while ,just put it down to getting lower on pred and adrenals.Any suggestions as to wait and see or have I got to go up again?Bloods were about 3 weeks ago or more I think.SST test was last Monday.xxx😫😖🫨💐
Guess you can’t tell me what to do,but if it was YOU on 4 1/2 mg,what would you do,especially seeing as I had sight loss with my GCA?Could phone Rheumy tomorrow but guess the answer would be,……well your bloods were ok!!xxx😜😢
Me? Well first I'd stop the taper and go back to 5mg. If I had enough pred, I'd add 5mg for a few days and see if that made a difference, up to a week at least.
Many,many thanks PRO,got enough stock to treat a little army.Will start 10 mg tonight for a week and see how it goes .Then if I feel better will get back for more advice on tapering again.Do you know what,wish I could stay on a high dose for ever,the lower I got,the worse I felt!Wonder if DL had all this trouble after 2 years?xxx💐💐💐😜
Two years is relatively early days - even in GCA. We regard anything up to 4 or 5 years as "normal" and nothing to get in a panic about. Especially for people with heavy responsibilities as you do. What was the last dose where you felt good?
Can’t really remember but at a guess I would say 10mg.or a little less.The fatigue has been the main thing,but as everybody says on here ,they all get it,but of late just going to 2 shops and a cuppa and I am laid low for about 2 days.Everything is an absolute effort ,even after a reasonable nights sleep.Just cleaning out the parrot cage of a morning ,I have to lay on the sofa for half an hour afterwards.Was not like that on a higher dose that’s for sure.?Shocking ain’t it?x😱💐😜
I never had any issues once on Pred. But then I did have a very slow taper -and certainly wasnt as low as you in 2years.
For 2 reasons -hubby was very ill for about a year before he died so I hardly reduced at all during that time -and GP was ultra cautious after her misdiagnosis.
Thanks so much DL.Will start 10 mg early hours and stick on that for a week and see how I go.Did you have the deathly fatigue when you hit about 10 mg?Mine has been constant and just thought it was the norm and had to just plough through it.Will be interesting what the new Rheumy has to say when I speak to her at the end of the month but I don’t care,I just can’t carry on feeling like this.Plus the sweating and scalp issues were a worry.Happy days!Hope you are having a great time with your loved ones abd are behaving yourself ( or not!) xxx😜💐
Have been doing your 7 week taper from 7 mg but guess I am just unlucky.Never mind,onwards and upwards.Glad you are enjoying yourself and Thankyou again!xx💐💐😜
At a guess - above 7mg!!! But how much above - still to be established. It doesn;t mean you won;t get lower - just not yet. But you can't fight it, you need what you need.
Ok,trying to get my stupid head around it all.,had a flare at 20,another at 7 so not sure really if I have flared at my present 4.5 or before seeing as I have felt so rough for ages.10 mg sounds good ,looking forward to some relief.hopefully.Thinking I should Stsy on the 10 until after we see Oncologist for OH end of this month eh?Havent studied DLs plan yet!xxIsnt it past your bedtime PRO??xx😜😴😴😴😴
If I was still writing it must have been before my bedtime!!! I am quite disciplined about that!!! I'm only an hour ahead of you.
You do need to take notice of when you stop feeling as good at the new dose as you did at the last. And to try to distinguish between PMR and other things.
How right you are,,trouble with me because I have neck issues and lower left back just thought because I was getting lower on the pred that all these issues were getting worse and the Pred had been masking it.Took the 10 mg at 10 pm last night rather than waiting until 2 am.Woke up shoulders felt quite a bit better ,tingling barely there in head ,back to just having left side lower back pain rather than bilateral.Still feel pressure in head but guess just have to wait for Pred to do its stuff a bit more!After reading DLs taper plan etc,will try not wait until after the oncology appt for OH,I know the drill on that score with him now,will do as suggested which is up to 2 weeks then lower to 8 mg if you think that is wise ?Thsnkyou so much again O Wise One,an easy day for me today,and feeling quite weepy AGAIN!xxx💐💐💐
Agree with PMRpro Angelsmummy- symptoms trump blood results! I’d say if rest doesn’t improve matters, and you continue with such pain and fatigue, you may need to seriously consider that you may flaring 🤔🥹😦xx
I’ve sat down by the fire this afternoon and I feel better - so I’m still hoping I’m not flaring…. 🤞x
Mine was a very quiet Christmas,no bigdinner to cook for anyone,just a normal day really for us but maybe news of OH s cancer returning and hospital appointments was enough to tip me.Who knows!Anyway,the WISE ONES to the rescue and am going to print off DLs link.Feel happier knowing that I can up the magic pills tonight!xxx😜
Hi, your blood sugar will rise even if you just look at food or chew it but don’t swallow it. If it stays up for more than 2 HOURS, then you MIGHT need treatment. I’m fully diabetic Type 2 and my blood sugars regularly go up to 12 but return to near normal within 60/120 minutes, therefore my hba1c is almost perfect. I use insulin which Is very easy to control.
Thanks for the incite Bramble. Slowly starting to build up a picture of what is going on here.
I cant believe that other g whatsoever was discussed with me when I first presented at the docs with this.
Because I didn't know what this disease was I just pk thanks and took the prescription.
I had no idea what questions to ask.
Thanks to this brilliant group here you are slowly giving me the enlightenment I need to enable me to adjust to it.
I have noticed ( jumping g back to the Pred) that forum members often refer to adjustments in their tapering.
In this respect I seem to get the feeling that is often left to the individual to decide. Am I right ? Or is tapering always done under the direct orders of your doc or Rheumatologist.? and that we should never adjust without permission ?
Adjustments should really always be discussed with your doctor - but some of them just go at it hell for leather to a timetable - and that doesn't work. Many of us have discussed it with our doctors and have a good trusting relationship - which is the way it should be, Slowing the taper should never be a problem unless you have a obsessive doctor who only prescribed just enough for a particular dose. Returning to a higher dose because of a flare may mean asking for more pred so it pays to mention it to your doctor. But that depends on you being able to SEE that doctor!! Or at last speak to them about enough pred. Much better to ask a doctor the question in advance "What do I do if I flare up?"
I’m afraid I’m not the one to ask about tapering as I only took the Pred for 3 weeks initially to prove this was PMR. Since then I haven’t taken it, it’s been 2/3 years now. I was recently given a medication for a bile absorption problem but they didn’t tell me that it could lower my blood sugars so I started having severe hypos. Not fun at all!
It seems to be almost normal for people first diagnosed with PMR to be given very little and very often incorrect information. Doctors seem to resort to the standard guidelines which WE, the people who live with it, know aren’t flexible enough to deal with the condition.
It wasn’t long after my own diagnosis in January 2017 that I found this forum and began to understand how to live with PMR, and here I am now still needing advice and support to live with MY version of PMR. It’s a long and winding road, and sometimes you feel like you are the only one on it, but you are never on your own with this forum and the patient, kind, informed people here.
With the best will in the world, doctors can’t know as much as the combined knowledge and experience of the folk here who live with the PMRGCA spectrum. But the forum cannot replace medical advice so you have to learn to juggle what you learn from the different sources and find your own route through the chaos going on in your body.
Thanks Zebedee44, what you write is even in this shirt time becoming evident as I orogress through the learning curve.
Thank God for those who really engage with us on here. I do not know hiw I would have been able to nake any sence if this condition without you all !!!
it’s good that you found us early on in your journey and are learning quickly. Sadly many people have followed their doctors or even specialists advice and fallen foul of the guidelines.
Luckily there are clever people researching our condition and coming up with better protocols but it will be a long long time till local GPs catch up and as for Rheumatologists, we can but Hope!
Probably not related but I am trying the FODMAP diet. It severely limits carbs. Apples and many fruits have a lot of fructose. I have Sjogren's Disease and an overgrowth of bacteria in my small intestine which is why I'm doing this along with a naturopathic supplement.
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