Hi, just joined this very informative site, what a godsend!
I was diagnosed in July 2015, 15mg pred was like heaven after sudden, disconcerting onset of PMR - all my fatigue and aches and pains vanished. I've gradually reduced and am now on 8mg which I'll give a week to settle in although I now don't feel so very euphoric!
After reading lots of posts on this site I've decided to ditch the Alendronic Acid, it makes me feel sick and generally horrible: I was never advised to have a Dexa scan on diagnosis and on phoning GP today was told the NHS 'did not offer' this in my area unless/until I fall over and break something.... ?? GP recommended Risendronate as a substitute for AA so off I go to research this. Also refused Vit.D blood test on NHS, so I will pay for this privately although it is the same bit of blood that is being tested for inflammation markers!. I just want to investigate all possibilities and be pro-active.
Thank you to all who post here with their stories/hints and tips/personal experiences and advice - mostly it's a very comforting thought that this unseen community knows EXACTLY what it's like to deal with this unnerving condition - wishing everyone well, with some laughs along the way.
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Slowdown
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I'm shocked that you cannot get the scan. You could check around and see if that information is true for someone who is taking prednisone. I had a scan recently which led to a diagnosis of OP to my shock and dismay. I was emotionally "shattered" not to say "crushed" , but decided right away to refuse the offers of OP drugs. Have since done a lot more research and more convinced than ever that I made the right decision, at least for me. BUT I have not been idle. When starting pred I had already upped my game a bit regarding Vitamin D and calcium as well as more walking and starting tai chi classes. Now I have gone even further with those strategies and use more potent versions of the supplements as well as adding carrying extra weight around on alternate days and generally paying even more attention to my diet. I've also signed up for an OP clinic offered at my local hospital. The key to all this in my opinion is to understand several things: prednisone does put you into a high risk category and any strategies to combat OP are slow because bone grows slowly. The drugs do increase bone density but the quality of the bone is harder and more brittle and over time will put one into greater risk of fracture. They can only be taken for a few years, yet the condition is lifelong. Natural strategies are very slow to work, but work they do (I actually have two friends who moved themselves from OP to the osteopenia category, one continues to improve her status, the other has slacked off and become OP again) and the bone your skeleton is making is higher quality!
Thanks for your comprehensive reply HeronNS - funnily enough my first action was to look up Tai Chi lessons on YouTube! and the second will be to contact my NHS Trust hospital for more information. My surgery has just rung to confirm a Vit.D blood test at a cost of around £24, of which £16 is for lab, £8 for report. I'd much rather go for natural supplements, encouraging news re. your two friends...apart from the slacking off! Good for you with your action plan, keep up the good work
Hello Slowdown, I'm sorry to hear of your PMR diagnosis a few months ago but it's great to hear that you had such an immediate and successful response to the steroid starting dose with all your aches and pains disappearing. It is certainly no mean feat to have reached 8mg after just 4 months, so now you would be wise to slow those reductions down a bit to ensure that the inflammation remains under control.
A DEXA scan is recommended BEFORE instigating bisphosphonate drugs such as Alendronic Acid - if you are found not to have any bone loss, then you don't need such drugs. Hopefully, you have at least been prescribed a Calcium plus Vit D supplement which should provide sufficient protection on its own in the case of someone with normal bone density.
I was also refused a DEXA scan on the NHS, with both my rheumy and GP saying that there was a 12 month waiting list at the time anyway. I arranged the scan privately so that I could have a baseline reading, and the result was normal. Over the next few years repeat scans were agreed on the NHS and In spite of a 40mg Pred starting dose my bones only deteriorated very slightly into the osteopenia range (spine only) but not needing any treatment. Due to a misunderstanding between my rheumy and GP, I wasn't even prescribed the usual calcium plus Vit D, so it certainly isn't a given that all our bones will crumble whilst on steroids! I did ensure I had plenty of dietary calcium, including daily live yoghurt and lots of oily fish.
I notice that you are in the Cornwall area. Are you aware that there is a support group covering Plymouth, Cornwall and S Devon? More details are available at pmrgca.plymouth@yahoo.co.uk.
All the best for a continuing smooth 'journey' with PMR and steroids, and if your GP continues to refuse the necessary tests, then perhaps there is another GP in your practice who will be more knowledgeable about how to treat patients with PMR!
I am cross that none of my medical caregivers over the past few years ever suggested a baseline bone scan, even after I broke my leg about 20 months ago (typical ice-related tibial plateau injury, healed quickly and well but I was already 66 years old). Now I will never know how much if any effect the pred had on me. So my baseline dates from three months after I started pred, therefore the three highest dose months of that medication where the effects are most likely to occur. In my jurisdiction it is actually recommended that women in particular get a scan somewhere around the age of 60, and if there is no pressing need (prednisone for example) one doesn't mind having to wait for the procedure. I got my scan a month after asking for it. (Note, I asked for it, even at that point my GP was not suggesting it and when I expressed horror over the eventual diagnosis had the nerve - I think she was trying to be funny - to say one should be careful what one wishes for!)
Entirely agree that not having a baseline scan leaves you in a 'was it the pred or not' situation - I'll be in exactly the same situation but it's worth having it done just for knowledge. I think your GP has had a humour bypass
Hello Celtic, thanks for your reply, and for the link to my local support group - another piece of the jigsaw!
No, I wasn't prescribed Calcium and Vit. D, the GP seems keen to get me onto Risendronate but I am going to resist this and ask for the natural supplements. I'll also arrange a Dexa scan privately, I think that should be a given. Maybe it's my age (72) but when I queried why I can't get an NHS funded scan a whole lot of checklists were mentioned. I'm also trying to incorporate as much calcium in my diet, I'm pretty health conscious!
This is a whole new language to become familiar with - some days it's exhilarating and I feel 'in charge', at other times it's daunting but thanks to all the support and kind words here it is 'do-able'. Thanks so much!
I looked up the recommended drug and interestingly it is one that is more effective at slowing bone deconstruction than some of the others. In the big picture this is not good, because the skeleton is a living structure and must break down old bone as it builds new bone. It is prevention of the old bone deconstruction that first of all gives positive results in improving bone density BUT eventually causes the brittle bones that are a result of the OP med. We absolutely must make sure that our bodies don't break down the bone faster than it can build it. That is why pred is such a danger here, because it interferes with the body's ability to absorb calcium. I only found out a day or so ago that I should not take a calcium supplement at the same time as my daily pred. Which means that since June I have literally been throwing away 50% of my calcium supplementation. But no more!
Heron, just to put out the right message here, you have not been "throwing away 50% of calcium supplementation."
The reason for the recommendation to take calcium supplements a few hours apart from Pred, is that the calcium supplement can interfere with the absorption of the Pred. So Pred for breakfast, calcium supplement for lunch and supper.
Dietary calcium is good at any time.
The Vitamin D component of the calcium supplement helps with the absorption of calcium.
Moreover, if a Vit D blood test shows deficiency, then the usual calcium + Vit D supplement will not be sufficient on its own to increase levels to normal - in that case, a 3 month course of pure Vit D3 (Colecalciferol) is needed to achieve that.
Actually, Celtic, I have read that the pred does interfere with calcium absorption - hence the likelihood of bone thinning when on pred. So quite possibly they interfere with each other. To complicate things further apparently Vitamin D can interfere with sleep, something to do with its relationship to melatonin. Makes sense as Vitamin D is the sunshine vitamin! So the calcium supplement I had switched from breakfast to bedtime and includes 1000 IU D3 may or may not interfere with my sleep. Didn't last night anyway. The supplement I'm on is to be taken three times a day.
Pred makes you excrete more calcium through the kidneys, taking extra makes it more likely it is taken up into the bones. To my knowledge there is no interference in the same way calcium interferes with the pred uptake by binding with it. Either way - don't take them together!
Heron, yes Pred can cause calcium to be excreted from the body, thus possibly causing it to be lost from bones, but what I was pointing out in my reply was the reason behind the recommendation that calcium supplements should not be taken at the same time as Pred but a few hours later otherwise the supplement itself can interfere with the absorption of Pred.
Celtic, it is only in retrospect that I give her the benefit of an attempt at humour. She is so much better than a GP I had for a few months after my old one retired that I'm willing to cut her a lot of slack. At least she diagnosed the PMR and got me onto the 15 pred with an initial reasonable reduction plan. But on that day a metaphoric hug would have been better than a dismissive joke. On the day of the OP diagnosis I went home and spent maybe the next week or so weeping every few hours. I was so sure that I had done everything right during and after mid life to keep my skeleton strong.
Keep up the Tai Chi, Heron - like walking, it's good weight-bearing exercise. It worked for me, seeming like nothing short of a miracle when at one class I managed to hold my arms straight up above my head again for the first time without pain. I found Nordic walking to be another excellent exercise once I was down on the lower doses - it not only helped to restore my balance which was all over the place, probably as a result of spending so many months in bed before diagnosis, but walking with the poles also helped to restore my confidence after several falls due to PMR legs! I also heard of someone for whom it had actually reversed her osteoporosis diagnosis.
Nordic walking is one of the things that my friend who is on her way to bone health does. The other thing she does in parkour, but then she doesn't have PMR, or OA in her spine, as I do. I need to find someone to Nordic walk with as I think it looks foolish and need company!
Heron, Age UK run Nordic walking classes across the country. I was lucky in that I got on the last of free courses in my area, and you're right it's great doing it in the company of others. If you can't find an Age UK course, click on the following link for another avenue: exercise-anywhere.com/?page...
Kay, I think there are classes. I feel I need to get a bit further along with the tai chi first. I am also taking a class in drawing, attending a series of lectures at the local library, volunteering with the genealogical association and local museum, member of a writing group and in a community choir. Couple that with my ridiculous schedule for absorbing pred and supplements and getting in a couple of longish walks every day....
Kay: desperation and loneliness post-retirement. It's not as great as it looks. But at the drawing class yesterday our small group seemed to be very funny and I realized I was laughing more than I had for a VERY long time.
In my case, re taking medicines and supplements - it's not so much WHERE I am, it's trying to remember WHAT to take WHEN so that I don't take iron and calcium too close together. It's actually not very easy to manage, and I am hoping to ditch at least one of the iron doses after next bloodwork, although I don't expect to see GP again until pred Rx runs out in about three months.
Heron and Celtic, thanks for all the suggestions, I've found a good Tai Chi site (no local groups) and will warm up this afternoon with 5 simple exercises. The info about not taking calcium with pred I only found after downing my lunchtime 3mg with a glass of semi-skimmed, so guess that's half today's calcium gone... All this info is wonderful, helps me to find a way through the maze. And it's such a triumph when you achieve that next step in an activity - good luck to you both!
I don't know if there is an issue with food based calcium or if the problem arises with supplements. And there is so much other good stuff in foods that contain calcium I wouldn't worry about that. I'd be more concerned about relying too much on dairy for the calcium. Did you know that the countries with the highest incidence of OP are also the ones with the highest dairy consumption? Unlike iron, which is more easily absorbed from animal sources, calcium is more available to our bodies from plants, like broccoli and kale, as well as the soft bones of canned fish. When people question me on that I quote from one of my sources - did you ever see an elephant with osteoporosis?
Hi Slowdown, I have been taking classes but need lots of practice and have found on YouTube "The BEST FULL 4 Hours Tai Chi Tutorial for Beginners" which is great because each move is demonstrated several times, slowly, and happens to be the exact form of the classes (Yang style, short form).
This looks really good, thanks so much for that Heron So when I've girded my loins to tackle the local hospital re. scan I will head for this site in my baggy joggers for some calm! I used to practice Qi Gong and am looking forward to experiencing that focus on breath and concentration again.
I thought I'd put my tuppence worth in for information............I am on denusomab (brand name Prolia) a twice-yearly jab for OP. I have been on it for 3 years (just into my 4th year). So far I have no discernable side effects.
I have been lucky because I've had DEXA scans consistently although the first one was some time into my Pred-taking life, but that one showed normal anyway. Another one two years later showed osteopenia in the spine and the next one showed I had spinal osteoporosis.
I think I should say that I have been on Pred for 14 years and will continue to take it for life as I have secondary adrenal insufficiency. When I was first diagnosed (and that is another story) I was tried on every single biphosphonate drug available at that time but each one gave me horrendous side effects so I was left with the calcium and Vit D alone, which obviously did the trick for some 8 years before and after the first Dexa showed normal.
I now have very limited mobility due to other causes and while walking always came naturally to me, I now need a walker while out and my speed is reduced to that of a snail with clogs on. However, I do persevere with a daily walk outside whatever the weather. Whether it helps with OP or not I have no idea, as it it hardly the recommended 'brisk' walk, but it does make the rest of me feel better!
The latest DEXA showed that my spine is now well out of the osteoporosis range and to quote my rheumy I am now considered 'normal' and the OP diagnosis has been removed from my (long) list of conditions. One down and about 10 to go.
Hi Polkadotcom, thank you so much for sharing your story - I am constantly amazed at the the courage and fortitude of people on this forum and your tuppence worth regarding Prolia is another piece of valuable information which I will follow up. So glad you can remove OP from your list, one triumph well deserved - and getting out for walks is definitely good for mind and body regardless of clogs and weather.
I'm relatively new to all this, think I was in denial (or blissful ignorance) when first diagnosed 4 months ago, after taking the magic 15mg pred I felt invincible! Am now on 8mg but with a few aches so may up to 9mg after next bloods. I found this forum in the last few days after a bad patch and it's given me lots of hope, information, chuckles and a sense of community; I'm grateful to all who get in touch with their hard-won wisdom. Thank you, and best wishes with the (hopefully) ever-decreasing list!
Slowdown, so sorry to hear you have been diagnosed with PMR. Pred is a miracle though. You have done really well at reducing but don't overdo it. You are getting to the point where your adrenal glands have to wake up and do some work for themselves instead of relying on the pred to do it for them.
I am horrified about the Dexascan. How stupid to give you Alendronic Acid when they don't even know you need it. My GP gave me a pink form on which PMR was listed along with about ten other conditions that passed the test for a Dexascan on the NHS. As I helped fund raise for the machine I felt entitled to it. My bones were fine so I just take vit D with calcium supplement. In fact I feel all you really need for PMR, if your bone density is OK, is pred plus vit D/calcium supplements. I was not given a vit D blood test but managed to get one on the NHS in the end. Are you saying your surgery is offering you a test if you pay for it? It is awful the way we have to fight for everything. My theory is that the NHS is slowly trying to get people to go privately for things to save money.
Hi piglette, thanks for getting in touch .. yes, I think 8mg is a little too low (bit achy) and I've found the Dead Slow and Nearly Stop method which I'll follow after going back up to 9mg. I was also surprised (in hindsight) not to be offered a Dexa scan on diagnosis and to be presented with AA as though it was normal.. I hadn't a clue at the time so just took GPs advice as the only option. Maybe I should request the magic Pink Form and see the reaction! And yes, I have to pay £24 for a Vit D test when I next have bloods done on Monday. The calcium and Vit D option is what I'm aiming for, so it's cheering to hear your success!
I've had a lot to do with hospitals over the past year (I was looking after a friend with oesophageal cancer) and I have so much sympathy for the caring staff who are completely over-worked - but I agree with you that the NHS is slowly and craftily being privatised to our disadvantage.
I believe that the British Society of Rheumatologist guidelines say if you are vulnerable which includes being over 65 give Alendronic Acid. I think a lot of doctors follow the tick off list rules. Of course the magic pink form may be unique to my area, it was quite tatty looking!
I have had to go private for things including seeing a rheumy, I find at least I am in control. The trouble is the way NHS can't do this for you is so peacemeal. A friend who is a nurse has a ganglion on her foot and has been told the NHS no longer deals with ganglions, yet my cleaning lady's husband who is celiac gets free gluten free rolls, pasta, bread etc on the NHS when he could buy them down the road in the corner shop.
Call your GP's bluff - you are at high risk for osteoporosis because of the pred so should qualify for a scan. Find out where they are done locally and call them to ask.
Thank you for that advice, it's a shame the system is in such a shambles that we have to find back doors into it, or just pay for what used to be our wonderful NHS. Will be on the phone to them tomorrow!
I am so grateful for all the good thoughts, information and humour - thank you all
Hi there Slowdown. When I asked for a dexa scan, my rheumy turned me down saying that they are not always accurate! Yet both her and my doctor are emphatic that I will be losing bone density and keep on trying to push me into taking AA, even though I have suffered for many years from reflux, etc after taking anti inflamatory drugs. I am still refusing to take it and will continue to so, it sounds like such an awful drug to take unless absolutely necessary!
Whilst on this site, can anyone tell me at what level of preds does 'moonface' go? I have been very fortunate that I have not had any other bad effects from taking them, don't feel hungry, so haven't put on any weight, eczema gone, painful knees gone (though I know these things will probably return), but scare myself every time I look in the mirror!
Hi Dobermanlover, thanks for getting in touch.. this AA pushing as a preferred option is ticking boxes for GPs I think (and I have thrown mine away); the refusal of a Dexa scan seems to be a budgetary consideration for surgeries. I'm trying to get hold of the Imaging Dept at my hospital to enquire about their eligibility criteria but so far, as they say on Radio 4, 'no-one was available for interview'
Dreaded moonface.. and you're lucky not to have put on weight, I feel as though I'm about to give birth to a giant (bloating) but on my lower dose of 8mg and eating small amounts 6 times a day it seems to be easing... I also have the added bonus of those lovely red-flushed cheeks (not) but find that Bare Minerals make-up tones it down to an acceptable glow!
Dobermanlover, side effects such as moon face can usually start disappearing once below 10mgs but it can vary from person to person - meanwhile, perhaps don't look in the mirror....well at least I tried not to!
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, but decided right away to refuse the offers of OP drugs. Have since done a lot more research and more convinced than ever that I made the right decision, at least for me. BUT I have not been idle. When starting pred I had already upped my game a bit regarding Vitamin D and calcium as well as more walking and starting tai chi classes. Now I have gone even further with those strategies and use more potent versions of the supplements as well as adding carrying extra weight around on alternate days and generally paying even more attention to my diet. I've also signed up for an OP clinic offered at my local hospital. The key to all this in my opinion is to understand several things: prednisone does put you into a high risk category and any strategies to combat OP are slow because bone grows slowly. The drugs do increase bone density but the quality of the bone is harder and more brittle and over time will put one into greater risk of fracture. They can only be taken for a few years, yet the condition is lifelong. Natural strategies are very slow to work, but work they do (I actually have two friends who moved themselves from OP to the osteopenia category, one continues to improve her status, the other has slacked off and become OP again) and the bone your skeleton is making is higher quality! 
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