Expert advice requested please: Hi PMR experts... - PMRGCAuk


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Expert advice requested please


Hi PMR experts. Hope you can help. I have an appointment to see GP on 11th July to discuss the results of my 1st DEXA Scan - some areas of osteopenia & some areas of osteoporosis - all in the hips (worse on the right), spine ok at the moment. I posted a bit about this a few weeks ago, so got some good advice from forum members then, but want to go into the consult with all my ducks in a row, so I’d be grateful if you could read my ramblings and let me know if I’m on the right track, a bit off the target, or just plain wrong - no offence will be taken 😜

Just as a quick reminder, I’m almost 61, female, retired from nursing January this year, had had a huge amount of stress in my life for many years, otherwise active, pretty fit and well, diagnosed PMR Nov 23rd 2017 after 3 weeks of symptoms. Started on 15mgs Pred straight away - good response. Tapered using standard method. Got to 8mgs in April and didn’t do well after a month on 8, so went back up to 10mgs for all of May. Started DSNS method this month going down by 0.5 mgs increments. I’ve done 3 weeks and apart from a couple of days where my mood went a bit low I’m no worse, so I’m looking at 4 days of this week taking 9.5mgs & 3 days 10mgs. Fingers crossed.

I found out at my scan that at I’m in the high risk category for osteoporosis (early menopause, parents both had NOF fractures, I’ve had a few broken bones in adult life [secondary to high risk sport though!] , on steroids obviously). Wasn’t put on bone protection when diagnosed, but started taking Osteocare 2 tablets a day containing Ca 850mg, Vit D3 10mcg, Mg 300mg, Zn 10mg, Ma 0.5mg, Se 50mcg Bo 0.6mg. I was taking my Osteocare with my Pred & Omeprazole, but after reading the great advice on the forum I take them at opposite ends of the day now. Also the Osteocare now taken at night seems to have stopped the odd night cramps I was getting. Yippee!! I’ve now graduated to the Osteocare Plus which gives me another 10mcg of D3, Soy isoflavones 100mg, DHA 175mg & EPA 35mg & Vit C 100mg. I eat 1 tin of salmon with bones twice a week, drink 1/2 pint of s/skimmed milk a day, minimum 100gms active yoghurt a day, eggs, cheese, fish, chicken, red meat only once a week, loads of fresh fruit & veg, 1 serving whole grains a day (rice,lentils,bread that type of thing), a couple of handfuls of unsalted nuts & dried fruit a day, max 3 cups tea/coffee a day, herbal teas, water, occasional smoothie/fruit & or veg drink. Plus I’m not a saint, so a couple of large glasses of wine or fizz when I go out or at the weekend - might have had a bit more at Ascot on Saturday. Well, it would have been rude not to 🤪. Really don’t want to start on AA (not that one 😜) bisphosphonates unless really have to, again based on what I’ve read on the forum.

Does this regime sound ok to you guys/girls? I have thought of asking GP if I can switch to Ranitidine rather than PPI Omeprazole after reading the info about preventing absorption of calcium. As Ranitidine is taken 3 times a day, I could take the Osteocare with my evening meal, so well away from the Pred and then take last dose of Ranitidine at bed time. I could probably get away with not taking the middle of the day dose of Ranitidine as well, but I’ll see how I go swapping from the Omeprazole first. Again, thoughts welcome.

Exercise wise, I average 2.5 - 3 miles walking with dog per day, but I do have to watch the spoons, as I definitely don’t have the energy levels I used to have before PMR or early bouncing off the walls Pred dose. Really not sure how much to push myself yet, and believe me, I can push so again all advice appreciated.

Look forward to all wise friends advice. Thank you

12 Replies

Add in some prunes

Nerak12 in reply to Soraya_PMR

Thanks Soraya_PMR. Very partial to them, though can have interesting consequences!! 😜

Dizzy with all these supplements etc. But Ascot made me soooo jealous! Sounds like an exciting life. No expert here, but I have all that ostopenia & osteoporosis going on. I just ignored it and do PT - with lots of strengthing exercises and push myself physically. Move a lot! But your choices sound good too.

Thank you. Yes, I’m very lucky to be able to enjoy such lovely events as Ascot and also having the opportunity to meet some very interesting people too. It helps to counterbalance the days when the PMR aches, pains & blues hit and I don’t feel like getting out of bed. Fortunately the wonderful weather at the moment is keeping them down to a minimum - long may it last! 3 walks yesterday, so carrying on marching 😀

They will try to get you to take AA. You could point out that you have sufficient calcium in your diet & with the supplement you are taking, & are certainly doing the weight bearing exercise. After your 2nd DEXA scan you will know if all of this is sufficient & if not may be in a better position to make a decision re AA.

If available near you, you could try low intensity vibration training which I understand was developed for astronauts who lost bone density in space.

Nerak12 in reply to Janstr

Hi Janstr. Thanks for your reply. It would have been great if I’d had a previous DEXA scan after my hysterectomy like SnazzyD did when she had her ovaries removed. The advice from my GP at the time when I asked about calcium supplementation was to suggest I ate a matchbox size piece of hard cheese every day. With knowledge & hindsight this was clearly insufficient, but hopefully armed with a summary of what I eat and supplement with now I can persuade my GP to hold off on the bone meds.

Not sure I’m going to find much in the way of vibration therapy around where I live, but I will research it anyway. I suppose I could try sitting on the washing machine when it’s going through it’s spin cycle 😜

Janstr in reply to Nerak12

One brand of washing machine in NZ can be setup to play the national anthem so you could have that going at the same time! Best of luck with your appointment.

Nerak12 in reply to Janstr

New Zealand anthem is a little more upbeat than ours 😀

PMRproAmbassador in reply to Nerak12

You're in the UK? Bannatyne's gyms have them (or did). Other gyms are no doubt available...

Nerak12 in reply to PMRpro

Thanks. Will have a look. X

I guess if you had been doing all that and still had osteopaenia/porosis then it might be worth considering AA. I had a DEXA done before I had my ovaries out 13 years ago and the second DEXA 15 months ago before Pred showed a drop of 10% to osteopaenia. However, my argument was that I was found to be very low in Vit D and probably had been for years if I think about it. Therefore I am able to change what was before and improve my bone health nutrients, so i have said that I want to be given a chance first. If I’d done everything I could have done before and still had osteopaenia, I might have thought about AA.

Hi. Thanks for the reply. It would have been very interesting to have had a Vit D level done previously. When I was working I used to go to work in the dark & come home in the dark with almost no natural light when I was there for almost 6 months of the year and I think it’s beginning to be recognised that that’s a real problem in Uk now. Hopefully the supplements along with the walking will start to rebuild some of the damage, but I’ve only managed about 5000 steps today as having a quiet day after trying to lop branches of a tree yesterday left me with jelly arms. ☹️

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