Hi. I am a 65 yr old male diagnosed in December 2015, although I believe I have now had PRM for about 18 months. I was pre diabetic controlled well by weight management and daily exercise including mountain biking , walking and exercise classes at the gym.
I was diagnosed by the rheumatologist after seeing the GP over many months and constant blood tests. Rheumy put me on 15mgs of pred reducing to 12.5 on which I had a severe flare and put myself up to 30 mgs which put a lid on it after 3 weeks. However since then I have reduced down to 7.5 and felt pleased with myself. As I have a 6 monthly review with Rheumy on Wednesday I asked for a blood test at the surgery, the following day I had a telephone call to see the Dr , which happened yesterday. She told me my CRP was high at 10 and to increase pred to 10 which I have done. 6 weeks ago I had a cataract removed, which was accelerated by the steroids, and since then my mobility and energy/strength have been affected/reduced, but I went on reducing the pred albeit slowly and by point 5s only.
The Dr seems to be concerned about the diabetes aspect, she added to my meds by including Metformin which has counteracted my blood sugars being affected by the pred, and has taken it down to below diabetes level.
She wrote a letter for the Rheumy asking if he would use an alternative immune supressant named methotrexate.
Has anyone any experience of this as a steroid sparing agent?
I have a feeling that I should have listened to my body more closely and increased the pred when the eyes were operated on and should have actually stopped reducing for longer.
Thanks for any advice and best wishes to all sharing this journey.
Dave
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OrwellMan7
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Methotrexate may or may not work - you can only find out by trying. However, it does not replace pred, it only, hopefully, may reduce the dose of pred you need. I know a couple of ladies for whom it has resulted in a lower dose but I know others who used it and ended up with major flares which they are sure was due to reducing too far because of the mtx and it then allowed the flare in under "cover of darkness" so to speak. If it worked reliably they would use it and the guidelines would recommend it. They don't because it doesn't - and the latest guidelines mention the possibility of using it but do not sound particularly enthusiastic!
I think you are absolutely right about having erred in having continued the reduction over the surgery period - apart from any other consideration, at this dose your body is having to make its own cortisol again and the stress of the op will have led to an increased requirement - which your body probably couldn't cope with yet.
Has the increase in pred made you feel better? Generally it is felt that a single increased CRP or ESR should NOT result in a knee-jerk reaction of increasing the dose, especially if there are no symptoms (in your case that is debatable) but the CRP should be monitored to see if there is a trend upwards since other things will raise the CRP besides PMR and the lab result may not have been reliable - it does happen so a dodgy result should always be checked. Most experts also feel that an increase of 5mg over where a flare occurs is generally enough - 10mg has taken you back to a starting dose for PMR and may not have been necessary.
How much have you reduced over the last 6 weeks? Apart from the fact I wouldn't have reduced at all, in 6 weeks I would only have done 0.5mg anyway - at this stage any faster is possibly a bit much just from the adrenal glands return to function aspect. The slower the better from here on in.
I personally would be inclined to cut my carbs rather than using metaformin (but it is one of my hobby horses) and you may have seen this story in the Daily Mail - not the most reliable of medical journals I grant you but there is a solid basis to this! The Newcastle trial has been widely published in the medical literature
I really cannot see the logic in telling patients they MUST eat a relatively large amounts of carbs - which then require more medication to prevent raised blood sugar levels. It's fairly basic physiology!
I guess I am dense as what carbs are u staying away from?
I try to eat complex carbs but not refined ones trying to follow Dr John McDougall .... which is tough as I don't agree we should avoid nuts, seeds or all oil.
Really confused on the carb thing.
Avoid bread, potatoes, carrots, etc?????
Really appreciate your comments Pmrpro!! You have helped so many of us as has so many others on this forum.
Thanks for helping define cutting carbs.
Hope I am not the only one confused in this regards. 🙃
I eat almost no products made with flour, whether whole grain or not - I'm allergic to something in wheat so it isn't too much of a hardship, I got used to it long ago when the only option in the UK to be wheat-free was gluten-free! No baked goods, pasta, rice, potatoes (and that includes sweet potatoes) except a couple of very small bits with a roast chicken. No convenience foods, they all have added sugar and flour somewhere.
Perhaps it's easier to say what I do eat. I eat full-fat plain Greek yogurt - no additives, vegetables that grow above ground (as an easy way of distinguishing) and asparagus (in season only, I live in Italy, very seasonal people!), salad vegs and leaves of all sorts. I do eat the occasional carrot but not a lot. Virtually no fruit - doesn't bother me in the least. I use butter and olive oil, for cooking and eat meat/fish/eggs/dairy ad libitum. But that doesn't mean large quantities - I'm never hungry enough to want a big plateful. I snack on nuts - a bowl of almonds and hazelnuts is always there - or cherry tomatoes.
There are plenty of sites online which define carb content - and I aim to eat less than about 50g utilisable carbs a day. A favourite blog of mine is the Diabetic Mediterranean Diet blog by Steve Parker, a doctor. The Atkins site is also very good with defining what is good or bad in the context of carbs - the new version is far better than the original which excluded carbs altogether which is difficult for many people. Now they include low levels of carbs from the start.
I'm not that virtuous - if I want a plate of pasta or a pizza, I eat it. Or a bread roll - we have wonderful spelt, kamut and rye products here and I can eat them without itching. But one roll does 2 lunches for me, I freeze the other half for next week - and they are not large dense things like the UK and are made of flour, water and yeast - no added sugar or "stuff". At a meeting a couple of weeks ago I ate the cheesecake desserts - the gluten-free option was fruit and melon ad nauseum (it always is) so I decided I'd itch! I put on 5lbs in 7 days, but lost it again almost as quickly. Phew!!!!
For example, I make "lasagne" using sliced courgette/zucchini instead of pasta for me (not always though) and instead of a white sauce I beat an egg in a Total 5% fat Greek yoghurt as the topping - the same topping I use for moussaka made with only aubergine/egg plant. I sweeten nothing - no added sugar, ever. Except on Pancake Day - but you don't get fat from one day's sins! I don't thicken gravy, I adapt sauces, but I have done for years because of the wheat allergy. I cooked a lot with cream/creme fraiche. I actually find it hard to work out what I do that is different because it's been going on so long!
Hope this helps - it is quite easy these days in that everything has a far better contents list but I find it easier to cook from scratch - then you know exactly what is in your food. I use good quality ingredients - which sounds expensive but it isn't really because it has more flavour from the start and then you don't need stock cubes and sugar and "stuff" to make it taste of something. And that then reduces salt content which is also better for you - herbs and spices are very useful.
Hi thank you for that. I have reduced from 10mg to 7.5 mg since 6 may, seeing that in print tells me too much too fast. I felt too confident I guess, my symptons were some back stiffness in the mornings which wore off but some serious fatigue through the day too, so while I have usually done some gentle exercising prior to the eye op, in the 6 weeks since very little if any, with a subsequent increase in weight. My dose is currently 10 mg, first day today and I dont feel very energised yet. I think I will resist the mtx and try the low carbs solution. Thanks again and best wishes, Dave
That's 2.5mg in a month - yes, far too fast! Next time take at least a month for 1mg - maybe even longer. it isn't a race, go slowly and you are less likely to have a flare and have to go backwards.
It's always more difficult to reduce when you have other things going on as well isn't it?
Hopefully the Metformin will help with your diabetes, although it's not a particularly nice drug - my late husband was on it for many years.
I'm surprised if the cataract operations were responsible for a flare, if so, I think you were very unlucky, most people, myself included, seem to cope reasonably well. I think your feelings of fatigue etc are more likely to be connected to you getting to the dose where your adrenal glands need to start working again.
Not sure what dose you are actually on at the moment, but you need to give your body a chance to stabilise. You may find staying at the dose you are on for a few weeks, or more, may do that. But don't think about reducing if you are still in pain - the fatigue may just be the adrenal glands - mine took about 9 months to get into gear!
I always try to explain to somebody that it's like a car - it's fine running along a flat road, but when you push harder on the accelerator to go uphill, or to speed up to overtake - there's nothing there!
As PMRpro says once you get to single figures you need to do little steps, as you are, but also either stay at each level for a least a month, or use a slow reduction plan that takes a few weeks to get from one dose to the next.
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