I haven't posted for a while, but have been reading posts and finding out lots of useful information.
I posted a few months ago, having been diagnosed in late December with PMR. My GP hadn't been particularly supportive at my first visit as he seemed to imply I was asking too many questions. I saw him in March and he was better, tho still said I didn't need 2.5 mg tablets as I could alternate doses of 10/9, rather than 9.5. He suggested taking 4to 8 weeks to taper the dose , so I am going with the simple taper suggested on this site , taking 7 weeks to go from 10 to 9 and so far is going ok , and have gradually managed to get back to doing some dance/stretch classes.
My problem now is I went for hospital appointment with dietician. I was referred in September after dexa scan showed osteoporosis at -2.5 , and a different GP I saw felt I would benefit from putting on a bit of weight. The appointment came through last week, and I explained I had increased my calcium in diet and took supplements of calcium, D3 and K2. I have been trying to eat more healthily with nuts, fruit and whole grain bread/cereal. I had put on a few pounds and bmi now only a little bit below the "normal" at the lower end. The dietician felt I have a good, healthy diet, but I explained am now on steroids , so likely to put on more weight, and as my dad had diabetes , perhaps I need to limit my carb intake? The dietician felt I was low risk and to keep on with what I'm eating, still OK to eat some fruit, bread, pasta etc.
Am wondering if I could request a HB1AC? to test my blood sugars and see how it goes. Is it reasonable for me to request this blood test , and cholesterol, when I next see my GP, or could he say it's not needed.
Sorry for the long post
Candydog
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Candydog
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I think it is a perfectly reasonable request for a patient on long term pred to have their Hba1c checked at least every 3 months - if it starts to rise then more often would also be reasonable. That is all you need initially really - no point starting on random BS levels until you look at the Hba1c. If it is OK, no worries.
If you can cope with alternating the doses like that it is fair enough - but someone commented the other day they had really struggled with their GP's instruction to alternate doses but it was 5mg changes. 1mg is usually fine. If you have 1mg plain tablets you can cut them - all chemists will sell as pill cutter.
Thanks for your reply PMRpro. I'll ask my GP for the test on my next review. I'm a bit nervous of asking for information/tests etc as he can be a bit "off". I have a pill cutter, which I used to go from 15 to 12.5 , rather than 15 to 10'as GP suggested as was struggling with that.
I'll use that in the future for slow tapers. I want to take it gradually, rather than risk a flare.
Hi candydog going slow taper is a good idea. They should be checking your hba1c as routine, especially with a close family member having diabetes. I would still be tempted to monitor how many carbs I was consuming. Just so you have the correct information to hand. That way you don't have to put weight on. I have lost over 2 stones over the past 2 years.
Pmr DX 2016, currently at 6mg having been up and down a few times.
It's good to get advice that I'm not being a nuisance, but should be having a hba1c.
Yes, I don't want to put much weight on, but GP and dietician would like me to put a bit on to increase bmi.
I don't think I'll have a problem putting weight on now am taking the steroids, but will keep an eye on the carbs so I don't put too much weight on. I have cut down drastically on cakes, biscuits, sweets, crisps etc and just getting carbs from food that also has some "goodness".
It's all about how you feel. Getting BMI higher would help your bones Vis a Vis weight bearing. I know there are a few members in a similar position to you BMI wise and like you eat healthily. But I think they should be checking hba1c...steroid induced diabetes is its own category of type 2 diabetes so everyone on pred should be checked - and while they are at it vit d might as well be checked. 😂
Yes, I definitely need to have the test to check for steroid induced diabetes and feel much more confident about asking for it now that I know it's not just being a nuisance. Will ask about vit d as well. If I am in danger of becoming diabetic I could then reduce carbs more, but as you say am trying to increase bmi to help with osteoporosis..... It's a balancing act!
I know it will not be necessary for you Candydog because you are going to ask your doctor, but just by the way, in case it helps anyone, in the UK, Lloyd’s Pharmacies are offering blood sugar checks, ( and I think cholesterol as well, but not sure). I don’t know what the charge is but I’m sure Mr.Google will know. I’m at the high end of pre diabetic, partly caused by being overweight, which I am addressing, also had severe vit D deficiency which is being addressed. My surgery has specialist diabetic nurses and clinic. Candydog, you will feel happier when you have had the blood check. Good luck and let us know the result. Best wishes PosyP
Hi Candy dog. Another ‘skinny’ here. I’ve always been a tad underweight, and before diagnosis lost another half stone. Being on pred and finding an appetite was a new experience, so I was quite happy to let the steroid fatten me up 😉 I gained a stone, and decided that was probably enough, so cut out carbs and promptly lost weight 😶. I have to eat carbs to maintain, but stick to brown carbs to lengthen digestion and prevent glucose/insulin spikes. I’m down to 5mg now and have to work at it a bit to keep my weight stable. My GP has never tested my blood sugars, but rheumi does before every visit (4 times in 2 years) and they’ve all been normal. I still have a tiny bit of sugar in my tea, eat fruit and potatoes (because I like them!)
It’s very reasonable to ask for the blood test, your body after all, and you’re the one that will have to live with the consequences. You are only empowering yourself, and PREVENTION is supposed to be the new buzzword in health!
I don't know the reason for this, but apparently eating protein at the same time as you consume carbs will help even out any potential blood sugar spikes. I'm in much the same boat as you, still underweight, but my blood sugar went quite high when starting pred so I eliminated nearly all carbs from grain, particularly wheat. Would like to put on a few pounds but that doesn't seem likely to happen, so try to eat really healthy food and a fair amount of healthy fat, as in nuts, for the calories.
Thanks for your reply, HeronNS. That's a good tip about eating protein with the carbs. I'll just have to monitor any weight gain and adjust carbs accordingly. I am going to ask GP for the test next time I see him.
I would say that was a good preventative approach.
Knowing you are not at risk of diabetes or cholesterol problems at the moment will help you make healthier decisions about what you can include in your diet to help the osteoporosis concerns that you have.
You could tell your GP that is the motivation behind your request especially with your Family History.
( Even though it does annoy me that we feel the need to justify requests for tests that GPs should realise are of benefit to our recovery anyway!)
The GP should be happy that you are being proactive about improving your recovery and therefore the speed you can continue to taper your steroids.
A healthy nutrient rich body is a better place to continue tapering from , it improves your ability to keep going down without flares.
Your diet sounds healthy , and as you are below your ideal BMI , even with steroids ( some of us do stay that way or lose weight as a side effect) , keeping a moderate level of wholegrain carbs in your diet and vitamin and mineral packed fruit ( like banana , blueberries , red berries, coconut and citrus ) will improve your overall condition too.
Eating healthy carbohydrate foods is not bad for those with low BMI , or diabetics as part of a balanced diet. Nuts are also great , oats are a good carb , slow burning source for nutrients . Probiotic yoghurt with honey , nuts and fruits with your meds is a great way to protect your stomach , add calcium to the diet and reduce need for a PPI in the future .
There are lots of protein rich carbs too like chick peas , buckwheat , lentils , quinoa and barley that you can substitute things like pasta , rice and white potatoes for later if you really want too.
Keeping off the processed sugars and foods is the most important thing really in your situation.
Hope the GP is helpful , but if not perhaps you can let him know that you will ask the dietitian if they can sort them out instead , the GP may just step up . Or if not , the dietitian and Nutrition Department at the hospital may do it for you if you call for help to give you that peace of mind.
You sound like you are doing really well , so smile and be proud of what you have achieved xx
Have a look at the NICE guidance on managing PMR at cks.nice.org.uk/polymyalgia... - See particularly the section which refers to 3 monthly reviews and the sentence: At 3 monthly reviews, assess blood pressure and glucose, which may be adversely affected by corticosteroids. If necessary, give the GP a copy! Good Luck.
Thank you for that link, I will be referring to it at my Gp appointment, my Gp said she didn’t need to see me unless anything changed and I didn’t need bloods taking regularly, I am almost 4 months since diagnosed. I have arranged appt with a different Gp in May.
As others have already said you should be having a regular HBA1C when on steroids and particularly as diabetes is in the family too.
See how you go this time with your GP but if he refuses, which he should not, ask him why - tell him you would like it done please to ease your mind. Don't think there are many of us not having this test - it's one of the first thing my GP says when he gives me blood results your glucose levels are good.
Best wishes and don't worry, you're doing well with your diet - you know what to look out for.
So sorry to hear you have an "unfriendly" MD. Mine is not a rheumatoid specialist, but has had experience with PMR patients and very easy to talk to. A couple of days before I see him, at his demand, I go to a lab., have blood drawn and the lab send him a complete blood profile (also urine test) Then at my appointment he goes over the lab. report with me. Do either go to different doctor or be assertive with this one
My rheumy saw me as numbers/markers. Not as a person who knew their own body and that something was terribly wrong. When I developed serious symptoms of GCA, I called him frightened. His response was more blood tests. Two days later, my sister took me to emergency. An hour later I was on 60 mg of prednisone. 7 hours later I started to feel better. That was 9 days ago. My rheumy never called back with results of labs, never wanted to schedule an appointment to see me earlier than the end of May.
The reason for my rambling? This was hard for me to learn and I left many of you frustrated for not listening to you earlier. But here it is....be your own advocate and you have to have a rheumy you feel safe with. My GP already knows that my rheumy is fired and he's taking care of me and my pmr/gca and tapering until I find a new rheumy. I have an appt at a very prestigious learning hospital here in Oregon but it may not be until Fall. That's okay because I trust my gp for now. He also made room for me to see him next week!
We weren't really frustrated - just very worried because it really was obvious to us there was something really wrong. Once your vision has gone it is a bit late.
So sorry for your troubles, pollymarierose. I sometimes wonder why some people go into these jobs if they don't want to listen or help. Best of luck with your new rheumatica.
Thank you, Candydog! I feel I'm on the right track now. There's so many who've went undiagnosed for too long like me. There's so many new young "hit shit" rheumy's out there that I'm pretty sure their egos tell them they have the answers to life, that they've forgotten the most basic thing. The most important .....the patient. Mine was willing to gamble my life over numbers instead of listening to and observing me.
Just glad to hear you finally got the right help , although we are always sorry to hear how people have to fight for it and how long it takes a doctor to listen.
I am still in limbo on diagnosis of my other condition , although confirmation of all the various horrible symptoms are progressing , and at least they have conceeded to me increasing my steroids if required until they make a decision and have given me a new one too to help with the ulcers and skin breakouts ( just can't use it until the next breakout pops up again).
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