On Thursday, at the GP, I requested a print-out of my blood results. My gp looked surprised and commented that not many patients understood the results. I smiled, inwardly, knowing that what dr google didn't tell me, the Italian sage would definitely know!
Under ESR, above range=29. Comment reads' New method for ESR introduced 27/07/2011.Please exercise caution when comparing ESR values prior to this date.' I had no idea the range had changed. My Neuro led me to believe that under 35 was ok?
The enocrinologist told me I was pre-diabetes. The A1c level is 41. Comment= Review the patient's personal risk and treat as'high diabetes risk'.
The following are all stated as above range; potassium,urea, creatinine ,eGFR, WHITE BLOOD COUNT,NEUTROPHIL,BASOPHIL.
Are any of these a concern? My dr just skimmed through it, as that wasn't the point of my 10 min visit.
For my GCA, I am on 4mg Pred, and reluctant to taper, as 1/2 headaches, in my scalp, are returning.
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karools16
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Before you resort to Dr Google and herself come along - I would say that your ESR is on the high considering you are on Pred.
I think the more modern thinking is it should be in the low 20s (it used to be your age plus 10 for females, or 5 for males divided by 2) - so if you are 60 + 10/2= 35.
Being on Pred should keep it in or below normal range.
The only other one that I had comments on was the White Blood Count, mine was slightly high a couple of times but GP didn’t seem particularly bothered.
As for reducing, don’t if you have headaches - I’m surprised GP didn’t comment on that. It may just be a temporary blip, but obviously if they continue then you may need to increase your dose, so please keep monitoring them and action as necessary.
Thank you DorsetLady. Yes, I will delay the tapering. My GP knows zilch about GCA, and had some unkind remarks about it, when my lovely Neuro handed me over to him, after 12 years.
Thanks for the re-assurance about the white blood count.
Well I wouldn't accept under 35 as OK for an ESR - that is old hat. It's been back to above 20 being a sign of inflammation being present somewhere for ages. The equation DL mentions was to account for ESR rising with age in apparently healthy patients - now they realise it is simply because they (probably) had undiagnosed inflammatory arthritis. (by the way, 2011 is a long time ago! I imagine your results have all been since then?)
The endocrinologist obviously didn't bother to look at your history - pred will do that alone - and it would have made more sense to suggest you cut your carb intake where you can. The liver produces spikes of glucose into the blood randomly and they contribute to the Hba1c level too. The odd short-lived spike won't cause significant damage but too many from food added together will. One lady has reduced her Hba1c from 6.5% to 6.0% just by cutting carbs, no change in pred dose. Her doctor is delighted - and praised her! She lost some weight too.
Your white count is slightly raised because you are on pred, mainly due to neutrophils being increased.
I'm a bit surprised he ignored out of range potassium (in particular), particularly in conjunction with increased other kidney function markers. I assume he is repeating them next month?
Thank you PMRpro. I knew this report would make more sense to you than me. Nobody has ever mentioned cutting carbs. I am trying very hard to cut sugar. Tried 'cold turkey', and nearly went ballistic...talk about the air being blue, is an understatement.
Your assumption, and my hope, for repeating bloods, remain to be seen, and , probably only if I ask.Yes, before and after 2011, have had esr taken and always over 20.These results were from tests done a month ago, and the results only now.Takes a month to get an appt with my GP, these days. I dread getting diabetes.
Cut sugar in everything as much as you can - and switch white carbs to wholegrain ones which will slow down how fast you absorb them, as will always eating some fat and/or protein with carbs.
I know it is hard but it takes 6 weeks to completely lose the taste for sweet things - once al the taste buds have renewed! So I suppose the less cold turkey way is to reduce slowly - halve your sugar for 5/6 weeks, then half again then try stopping. My mother insisted to her dying day on putting sugar in my tea - but by that time I could smell it before tasting the cup of tea she'd handed over and thinking I'd been poisoned
I only have 1 hot drink, daily...black coffee with 2 small spoons brown sugar. I am constantly dehydrated. I am never thirsty. I do try drinking water, but not enough.
About 4 years ago, I gave up wholegrain bread, pasta, etc, and changed to white, because I had'over-production' bowel problem. So many veg and fruit set me off, but the white change has been good thus far. However, I will revert to wholegrain if that's what it takes to lose weight/keep diabetes away.
No - even simpler and more effective is to avoid carbs as much as you can - and it will help the over-production problem too! I thought you meant you struggled to give up carbs and was offering ways of helping that. The trouble with white carbs is that the carb is metabolised to glucose very quickly, wholemeal is much slower - but then you have the fibre problem. You can eat proteins and fats - and small amounts of carb if you find it too much of a deprivation not to and that will also slow the production of glucose.
I meant to say that a high fibre way of eating wasn't suiting me, googled low fibre diet, wrote it all out, stuck it in the kitchen cupboard and memorized it. I gave up bananas because of a bloated tummy. However, at present I have an unflattering belly.
I have just returned from my weekly grocery shopping at Lidl. Cringed at the stollen and baklava and other continental goodies.
I have found, in the past, that when I gave up sugar, I turned to carbs. Methinks it's a bumpy ride ahead.ps I bought wholemeal bread, so will see.
No, I realised why you'd dropped the fibre intake. And it is natural to want carbs when you cut sugar - but after quite a short time you DO stop missing them. And it is that craving carbs you need to sort out because that is in response to a raised BS which triggers insulin and results in your BS falling too low - and craving for carbs to raise it, causing a vicious circle. Once you have few carbs your BS doesn't fluctuate as much and the cravings fade. It is the left-over insulin that causes the unneeded sugar to be deposited as fat stores.
If it's any help, my daughter, a dietitian, told me when I was concerned that my blood sugar shot up when I started pred that whenever I ate carbs I should also have some protein. One thing I did was start eating a lot more nuts and pretty much cut grains out of my diet entirely for a while, although I do eat some now: low dose of pred, blood levels fine.
The lady that PMRpro referred to that dropped her A1C to 6.0 is me. I was diagnosed with diabetes (6.5 A1C) in February; however, it wasn’t until I received the diagnosis of GCA the end of May that I got serious about changing my diet. With advice from this forum, I went low card/no sugar. I received the good news that I’m no longer diabetic just two weeks ago. So, in 5 months I was able to turn it around. Was it easy? NO and YES! I was a carb-oholic: bread, pasta, pizza, cake, pie, cookies, candy, etc. So, it was a big shift for me and not one that I wanted to do. But the thought of weight gain and shots for diabetes, etc. scared me to make those changes.
As PMRpro said, it takes the body time to get adjusted and in the beginning I did feel a bit like a junky wanting her fix. But I kept telling myself to keep on path as it would get better – and it did much sooner than I anticipated. And I haven’t looked back. Ok.that’s not quite true. I recently broke down and had a small piece of cake at a retirement party but after a couple of bites, I realized that either that cake was super sweet, or my tastebuds had changed. No one else commented on how ungodly sweet it was, so I’m going with my sugar tolerance is lower. (What a blessing!) And once every 2 – 3 weeks I go out for Korean. I’m afraid to look at the carb count (fresh food but oh those sauces have to be problematic for carb counting), but I tell myself it’s one night and then I’m back eating well.
I cut out almost all processed foods and try to eat ‘whole foods’: those food that you can point at and tell what the ingredients are. (I may have just plagiarized another member’s wording.) And I’ve been reminded that I really do love vegetables. I just got in that rut when you want something fast and here in the States, there’s a fast food place at every corner - sometimes on each corner. Now, I’m not even tempted to drive in. And I’m not tempted by the donuts, cakes, etc. that my coworkers bring to the office to share. Which I think is so weird as I would have been the first to ask for seconds.
I also added 2 twenty minute walks per day (good for the weight and also for the bones).
Please do consider the low carb/no sugar change. It really will help you in so many ways. And once you get the initial cravings controlled, it’s a bit empowering. And that’s a wonderful feeling especially since so much of these diseases feel out of our control.
In the last few weeks, this topic has been discussed quite a bit. Other contributors have given wonderful advice on meal planning, how the body processes food, etc. They explained all of it much better than I possibly could. I just know that it worked for me. Scroll back through past posts in the last 3 weeks and I think you’ll find them.
I cried when I read your post Insight329. I so identify with the carb-oholic tendencies. Fortunately, the nearest shop is about 15 min walk away, but unavailable, at present, due to my breathlessness.
I find it extremely encouraging that you fought off diabetes, after only 5 months. I didn't know a person could be non-diabetic. My nurse, at our surgery told me that when I read the word sugar, I must replace it with the word poison.I will make it work as I, too, am scared of the actual diabetes and all that entails.Yes, it is empowering when you conquer something like you have done.
Ilike all veg. My sister, in S.Africa says I am a veg-oholic. I also like fruit, and am aware there's a lot of sugar there.
Thanks ever so much for all your advice. I have had GCA for 12 years, and only found this life-saving forum last year.
Karools16, I'm now considered pre-diabetic, but I'm on the edge of that. Looking at the chart that is in the link that PMRpro sent you earlier, if I can get below 6.0 where I'm now at, I become 'normal'. Which strikes me as funny.
One of the other things that this style of eating helps with is it keeps those crazy steroid cravings away. I haven't had a single one of those "OMG, I could eat a horse" moments. And at those times when I think I would like a second helping, I think "Am I really still hungry, or do I just want to taste more of that?" If not hungry, I tell myself, 'Don't feed the Pred'......which is another piece of advice that I'm sure I got here. This forum is run/occupied by angels, I swear!
You can do this! I know you can!!!
Thank you for the well-wishes and right back at you!!! Take good care!
It is important not to make distinction between sugar and carb. They are all carbs. Fruit, flour based products, root veg etc. If fibre not tolerated easily that makes carbs spike even more. I have had type 2 diabetes for 18 years and did "cheat" but managed to keep it well controlled until pred. I am a carboholic too so I don't find it easy giving up 90% of them. I do actually eat fruit as whole fruit with diabetes nurse blessing. I replaced sugar in porridge with xylitol. Takes a while to reduce to make sure good not too sweet. It is also supposed to be ok with teeth.
I have seen lots of people panicking on here but I am still around after 18years and whilst I am having to have insulin whilst on pred...it hasn't scared me that much and I have a thing about (other people) injecting me.
You will be amazed at how quickly you can control hba1c by just cutting simple carbs out and replacing with more complex ones. If you don't have knowledge of which is which just check nutritional value on packs.
Sorry about the lengthy ramble. I am on hols in Wales for first hol in years😷 and of course my body started with first cold since PMR. Boo hoo. Living from paracetamol to paracetamol and starting to cough for England.. .or should that be Wales. 😷
Why does anyone put sugar in porridge? Thank goodness for my Scots heritage - I only have salt on them!!!! (The oats that is)
We're in Malta - OH has developed a cold which is obviously of Maltese origin (too long after the flight to be Italian or from the flight) and he thinks he's dying...
I remember golden syrup! Now I have salt on my rolled oats aka porridge. When at a B&B in Scotland many years ago I told the server I didn't need any sweetener, just salt. She looked at me askance, as though I didn't know what I was talking about, or perhaps I was lying, pretending to be cool, and I know she watched to see if I snuck sugar onto my oats. Hmmm, think I know what bedtime snack will be tonight.
Very good point about sugar also being a carb. When I think of sweets as carbs, I erroneously think it’s because of the flour. It’s good to be corrected/reminded. Thank you. Hope you have a wonderful vacation and that your cold symptoms disappear.
Believe it or not no one mentioned carbs for first 10 years. I just realised that white bread and pasta and certain fruits made my post meal sweats start. I can't say I am great at it now. Every so often I have to have my cheesy onion homily pie style mashed potato and ride the sweats out!!
Thank you Dorset lady. My ESR, WHEN incan get it measured, which is a big task as our local NHS no longer fund it (!) has been 30 and that is higher than my age plus 10. Have now tries spreading the dose of prednisolone ove x3 per day than one lump at bedtime. Is this wise? Still needing aspirin to kill the pain in my thighs, which has been much worse since a fall at the end of July.
Noticed not mention stress. Having had to deal with a husband who collapsed at the beginning of July with a pulmonary embolus has not been easy. He has now recovered, but not as he was.
Why am I being made to feel guilty about not decreasing the steroid dose?
The advised way to take pred in PMR is once a day all at once and preferably in the morning.
But I think your GP needs a bit of a kick - because if you need an ESR done, you need it done. If they aren't funding it it may be because they use CRP or PV (plasma viscosity) instead. They must do something to replace it - or your GP is telling porkies to polish his budget to his benefit.
If you are on enough pred to manage the PMR you shouldn't need aspirin and taking aspirin alongside pred is not advised as they both can irritate the lining of the stomach and cause bleeding.
The thigh pain needs to be investigated - it may be something else.
Thank you, will ask again for an ESR. It may be that it did not help me situation in having a fall at the end of July which knocked my right sacroiliac joint our of kilter. Have been doing the physiotherapy carefully and that has helped.
Seeing the other people who have had problems with type 11 diabetes can report that I have managed to control mine for the last 30 years by low carb diet. It is a struggle, no sweets, crisps in the house. But, yes, the taste buds do change , and even bought white bread now tastes sweet. Potatoes rarely in the house (once a week treat) ditto root vegetables. Beware of crispbreads, they oftern have misleading labels, eg., carbohydrate content 47 gm per 100gm, or which sugars 5gm. This is nonsense, all carbohydrate breaks down to glucose and/or fructose units. Makes life very when out/food outlets.
I know from bitter personal experience: sacroiliac problems can lead to a worsening of myofascial pain syndrome - and that can make muscles pinch and irritate the sciatic nerve leading to referred pain in the upper leg. A good physio will find it - but physio exercises often don't work fully until the spasmed muscle is relieved.
Ah, how did you manage to get the spasm relieved? A warm bath helps, but I cannot spend all day lounging in there! Massage with Deep Heat Ointment also helps, but pongs a bit.
I have access to a wonderful hospital physio department in a country that believes in alternative approaches to such things! Therapeutic massage is preferred by the doctors here to handing out the painkillers!!
When I had a very severe sacroilac spasm a few years ago I was admitted and got infusions of painkiller plus steroid in the morning and of diazepam as a muscle relaxant at night - worked fantastically well but unfortunately I developed a nasty drug reaction to the i.v. diazepam So I was handed over to the pain clinic people who used manual mobilisation techniques on the trigger points. It is basically very targetted deep therapeutic massage. Not entirely pleasant with PMR as it is painful at the time and you may feel you have a flare as the inflammatory substances are released into the circulation to get rid of them. But the relief after is worth it! Now I get twinges every so often - and get back to the physio department. I had a good lot last early spring and am waiting for another lot now - this is now very much a pre-emptive strike!
I also used Bowen therapy when I was in the UK and one friend who had been in bed for weeks as the result of spasmed back muscles went to my lady. She crawled in from the car with her friend supporting her on one side and using her walking stick - there wasn't room for the zimmer in the car! After an hour's treatment she walked back to the car unaided - and then realised she'd left her walking stick behind! It wasn't perfect, she had another 2 sessions to get as good as it gets and now has a session or two every few months. But it keeps her upright and fairly pain-free - she is nearly 80!
If you get a good and accredited Bowen therapist they will tell you that if it hasn't helped after 3 session it probably won't. Usually you can feel a difference after one. It doesn't work for everyone - but is worth a try I think. But look for one via one of their sites, not just someone who claims to do it. For a few years the Pain Clinic in Durham tried it out for intractable back pain - and continued funding it as they found it did help patients with back pain they couldn't help. Unfortunately that has stopped because of the state of NHS finances but it costs about the same as a massage session - and has a similar relaxing effect in addition to the pain relief it may bring.
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So I was handed over to the pain clinic people who used manual mobilisation techniques on the trigger points. It is basically very targetted deep therapeutic massage. Not entirely pleasant with PMR as it is painful at the time and you may feel you have a flare as the inflammatory substances are released into the circulation to get rid of them. But the relief after is worth it! Now I get twinges every so often - and get back to the physio department. I had a good lot last early spring and am waiting for another lot now - this is now very much a pre-emptive strike! 
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