I have been hard at reducing Pred by 0.5 approx every 10 days and was pleased I had got to 10.5. Having started at 15 , I found the 2.5 jumps the Rheumy had given me were too much. .. so after this site, I went to moving slowly...This morning having had a very busy time, I realised my today's pills were missing and I assume I must have taken 2 lots yesterday..? OPPPS.!! . .I have always had a short term memory being dyslexic and unfortunately being out of routine away from work it's hard to remember what day it is!
My cheeks have puffed up. I ended up taking 10.5 mg today. Have I done the right thing? Feeling a bit scared now ..
Thanks for any thoughts..
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TandemTime
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Stop panicking!!! Taking double is far preferable to missing altogether! And it is still a lot less than many GCA patients need to take.
Not sure what you mean by "My cheeks have puffed up" - that wasn't due to taking a double dose yesterday, it is a fairly usual effect of being on pred. Cutting your carb intake may help.
Oh thank you PMR pro. It seemed like the cheeks and pills all happened at once, its probably crept up and I had not noticed.
I read a post here that carbs seemed to be less of a problem for someone in the evening if eaten 6 to 8 hours after the Pred, so had been trying that..
I have tried to eat mainly just veggie carbs apart from the brown bread stuffing for Christmas which was surprisingly good with apricots and almonds! However sounds like I need to cut back harder. I have been using a Seedful ( Uk ) product called the heart of nature instead of bread which is meant for people with 2 diabetes etc. as just find I need to eat something say with eggs etc.
Personally I find it easier to forget the role of bread since nothing really replaces it! I eat the sandwich filling without the bread ... If you want a wrap - a firm lettuce leaf fulfils the role. Or cabbage with the fibrous stalk carefully removed. Are you vegetarian? Eggs need bacon unless you are!!
If my face or body suddenly blew up when on Pred it was down to salt intake. on Pred you are more sensitive to sodium retention and therefore fluid retention. Above 10mg, if I ate a meal with salt (even without adding any) my eyes looked puffy for a few days. If I had sudden explosion on body size, like over night, it was always salt for me. Regards carbs, no matter when I ate carbs I put on weight so I had to cut out pasta, potato, rice, flours, etc.
Thank you. It may be the adult kids who have been helping to cook....as I keep having to remind them... ! Okay going Stricker with carbs and salt .. what a journey this is.. thanks for the reply.
Oo good idea with the lettuce etc I am enjoying the seedy stuff but good to have more options.. Not a veggie but worried about the salt ( I am having the odd slice as I am no angel) . I have just had terrible Dexa scan results that I did not see coming at all. 😲 Another shock that I could have done without. Salt seems to be a ' thing ' with calcium uptake ?
I wish I had gone on HRT say 10 years ago as might have avoided these upsetting results, why do we not have Dexa scans as a matter of course at a certain age? It would have saved a lot of trouble. I am not ruling the men out of this conversation as I think some might benefit too, I am certainly going to get my brothers to have one. Parents died relatively young so never got round to broken hips...
I have since the age of 20 been aware of the 6g recommended limit as my mother had heart failure. I agree its so sad that ready meals tend to have such high salt etc. as a cheap enhancer to flavour and scratch cooking is safe. I am pretty good at reading labels when I have to.
Thank you for asking about my scan as I was going to put a post as its really upset me.
Lumber spine ( L1-4) T score -4.1 Z score -2.6
Femoral neck left T score -2.8 Z score -1.5
Total hip left T score -2.9 Z score -1.8
Femoral neck right T score -2.7 Z score -1.4
Total hip right T score -3 Z score -1.9
In each case it says Osteoporotic . For a 64 year old, it does not seem great. I have a small frame but are comfortably in the right BMI.
I would really appreciate your thoughts as its been pretty upsetting news over Christmas ... am I crazy to think about getting on that tandem again ?
It is a bit depressing isn't it - sorry. Those t-scores are very low. But backs my opinion that by no means all loss of bone density is pred-related - and when they didn't look before pred they don't know.
Have they already told you what is on offer for you? I don't think oral bisphosphonates are good enough but I'm no expert.
But given your apparently healthy lifestyle - they do really need to do more investigations. Have you had blood vit D and calcium levels done? There could well be another underlying cause such as hyperparathyroidism.
I was diagnosed with PMR in November 2022. I was always very active before that and never been on any medication. Just over a year ago I found myself in the same position as you regarding the Dexa scan. I have now have osteoporosis and I was offered a number of treatments. I opted for an annual infusion of Zoledronic Acid and have just had my second one. I have no idea how things are going as I am now 81 and I gather it is more difficult to get regular scans at this age but I felt that was the best way to go rather than taking small doses weekly or monthly or whatever… Like you, I was very worried at first but this way I am treated once a year then I can forget it.
It is said 1 in 5 get the flu effects but they only last a few days - mine took a few days to appear and persisted much longer. Not bad though. The worst bit for me was triggering a different arrythmia - just been cured of atrial fibrillation with an ablation but it started a very mild atrial tachycardia but that seems to be gone now.
I think it will depend on what your consultant will support. I think the -paratide drugs are kept as second or third line medications when others have failed or possibly as first line if you already have had multiple fractures that are likely to be due to osteoporosis. There is a hierarchy to be worked through - for various reasons.
Thanks for suggesting that I need more investigations and I think you are right I think I probably need something stronger if possible!
I have had the 3 calcium readings back this month and all seemed nicely in range, the vitamin D was 55 nmol/L which the local hospitals suggestion is ''adequate check lifestyle'', so all good there...
However I will mention that other medical sites on the internet suggest Vitamin D at 25-50nmol/L is fine but my local NHS suggests supplements recommended in that 25-50 nmol range...
Overdosing is an issue too it so I am very happy with my 55nmol/L
Thank you PMRpro for all your help today .. in helping to get my thoughts together.
"adequate check lifestyle" - what's that supposed to mean? More sunbathing? In the UK? They jest. Overdosing takes some doing - you would need the high dose supplements they use for combatting deficiency but taken daily for a year or two.
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Getting over Christmas 
the madness of PMR?
Christmas cancelled!
Post exercise stiffness - or not?
Disappointed 
