I too am reluctant/determined not to take AA, despite being diagnosed with osteoporosis 2016 prior to diagnosis of PMR. My Rheumatologist and doctor advised and prescribed it. In 2009 I had a chest X-ray with report ‘Lungs are hyperinflated in keeping with obstructive airways disease’ comments: OK. Nevertheless have always had problems swallowing pills and liquids at times. The doctor has arranged a dexa scan, although I wasn’t due for another until 2019, but I will still feel reluctant whatever the outcome.
It seems to me that most people are reducing their prednisone at a much slower rate than me. I started on 15mg in January and reducing by 1mg a month and next month a 5 4 5 4, so that by Nov it will be 1 0 1 0. I feel I can cope with a degree of pain if it means lowering and dispensing with a few side effects. But which are side effects and which the PMR? I haven’t felt well for a few days, but the symptoms are very like the ones I got with diverticulitis, and I read that the two can be linked. It all seems confusing, but I appreciate reading the posts on this site, as most of my friends hadn’t even heard of PMR, so felt alone with this. Thankyou too to Sheffield Jane, who has been very helpful and I realise that as other people offer advice, they too are living with this condition to a greater or lesser degree. The recent post on stress and our DNA I could identify with. It was very interesting and apt!
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ClarkB
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It’s entirely up to you whether you take AA - I did, and it caused no problems, but it does for some. Are you taking Calcium/VitD supplement? Most find that enough.
As for pace of reductions, if you aren’t having problems then it’s okay, but some find once you get to single figures it does become more difficult, and they then reduce more slowly.
If you are down to around 5mg then you shouldn’t be getting side effects from Pred. What you may be getting is steroid withdrawal or a return of PMR symptoms because your dose is not high enough. I can’t comment on whether they are diverticulitis pains as I’ve never had them.
One thing I would say is do not assume that because you are 5,4,5,4 next month you are going to be 1,0,1,0 in November! Your PMR may not agree, and it’s in charge not you.
Minimum time for PMR is 2 years, more likely nearer 4 years.
Thankyou for your reply, Dorset lady-much appreciated. I have been prescribed Adcal-D3 effervescent tabs (calcium carbonate). Previously I had bought Calcium Magnesium with Boron in powder form, as I understood citrate was better. I am not very good at the whys of medication; I seem to have a mental block. I have read very bad reports on AA, not merely scaremongering but I also listen to what I want to hear! I had my dexa scan in Dec 2016 which diagnosed osteoporosis, and am now waiting for my appointment for another one which hopefully will enlighten me as regards deterioration.
As far as lowering the Pred dose, I am surprised that Drs and Rheumatologist recommend the almost quick fix, when reality shows otherwise. I wonder for instance why I am reducing from 6mg, to 5,4 rather than to 6,5. When I spoke to the doctor about dosage she told me to stick with what the Rheumatologist said. I have high blood pressure and take the tablets automatically. With PMR it seems a whole different story! I must try and get my head round being in it for the long haul, rather than gone by Christmas!
Yes AA does get a bad press, along with Pred, and I would say why take another drug if you don’t need to. But, if the DEXA scan proves you do need it, then you can but try it. As I said I took it for 4 years without a problem....whether it has caused any long term issues I don’t know! But you can only do research, take advice and then make you own mind up about most things.
I think my arthritis has escalated since I took both Pred and AA, but whether either or both or neither have contributed to that I know not, or even if GCA has had an impact. All I know is I had no choice as to taking Pred (already lost sight in right eye); I decided to take AA (prone to osteoporosis- hereditary and early hysterectomy).
You make choices in life every day on the info you have in front of you on that day......some are right, some are wrong, some are 50/50....but that’s life!
As for reducing Pred, as agreed by most patients slower is better, especially as you get to lower doses, and yes to us, 6 to 5, or 6 to 5.5 makes more sense. At those levels (below what your body would naturally produce) you are getting very little in the side effect line, and also (with a slower, smaller taper) helping stimulate your adrenal glands into working again.
If your GP and/or Rheumy are trying to reduce you too fast it might be worth you looking at these (if you have the strength!) and jotting down any relevant points to raise with them -
You can reduce fast as long as it works, you have no steroid withdrawal discomfort or flares - they are so similar it is difficult to know which they are. But many people DO have major problems reducing unless they do it slowly.
You aren't heading relentlessly for zero - but it may well be that 4 or 5mg is the dose you are looking for: the lowest dose that gives the same symptom control as the starting dose did. But remember - while you may be willing to accept some pain/discomfort for the sake of being on a lower dose of pred. if that lower dose is not enough to manage the inflammation the dripping tap of leftover inflammation will eventually fill the symptom bucket, it will overflow and you will face a flare. The pred has not "cured" anything, it is pouring oil on the troubled waters of PMR until the storm dies down.
As DL says, don't assume you will off pred by Christmas - the average duration of PMR is 5.9 years and fewer than 1 in five are able to get off pred in 2 years. If you plan when you will be off pred, it is a disappointment if it doesn't happen.
The bisphosphonate tablets are not the only option - there are injections and infusions. Even I would consider something of I was already osteoporitic. There are other ways of improving bone density - but they require consistent exercise and dietary measures. HeroNS is the expert there!
Thankyou PMRpro. Your comment on taking the lowest dose that gives the same symptom control as what the first did, made me question all my reductions since. The first dose of steroids acted like magic, in ‘curing’ my ‘immobile’ arm and shoulder. Gradually over the month, I developed other symptoms mentioned by most people.
As I have reduced, some of these still remain, but hopefully the tender head, and head aches seem to have disappeared. A CT head scan was normal, and my double vision hasn’t been attributed to PMR, although left eye more blurred, and have been told that I need to have prisms put on to my glasses!
Associated with my diverticulitis symptoms were weak legs, dizziness feeling unwell and bloating. I have these again but have also read that they can also be PMR symptoms! How can one tell if something is ongoing pain or an actual flare? My neck suddenly gave me pain for a couple of days and is easing off a bit, but I don’t know if this would be a flare. In April my Rheumatologist said I had no current symptoms that suggested PR was active.
You mentioned ways of improving bone density by consistent exercise and dietary measures, and have printed off HeronNS’s Osteoporosis journey. Walking has always been my exercise - whether for pleasure or instead of taking the car or bus into town. Advised to walk briskly, for osteoporosis, which I did. Now it depends on fatigue or dizziness which dictate what I can do. Have never been into sport of any kind, or exercise classes though probably should give them a go when I don’t feel ‘ill’. As for dietary measures, I am vegetarian almost vegan, and try and eat healthily. The problem can be when different diets can be suggested for different complaints as in my case, and they vary quite a bit!
I apologise if my posts appear long and rambling, but hopefully as I understand and make sense of it all, I won’t be so neurotic!
Your tender scalp and headaches do suggest you possibly had more than "just" PMR - they are 2 more GCA symptoms and should be borne in mind. A CT head scan won't show GCA - an MRI done with contrast might have done - but on CT it is difficult to distinguish between narrowing due to GCA and due to atherosclerosis.
I think a good way of assessing "Is it still enough?" is asking yourself "Do I feel as well now as I did at the beginning of this reduction?". By no means everyone is totally free of pain - but it shouldn't get worse as you reduce.
At least one thing has been sorted, I hope. I went to the eye clinic today, over my double vision and had a prism fitted over my glasses for my right eye. No longer double vision, but some distortion which I have to get used to. Hadn’t realised that there was a section specialising in double vision. At present my scalp isn’t tender, and no headaches, but symptoms vary on a daily basis.
Sorry that I didn’t respond earlier, but I get a bit muddled over messages, and ones referring to other people. Still have to become more familiar with the site!
When I got diagnosed with PMR my doctor didn’t know much about it; eg, he told me I would be on prednisone for 2 or 3 months. Of course I wasn’t but he kept pressuring me to get off it, so I went from 20 mg the first of January to zero in November that year. And then in December all my symptoms came roaring back, I discovered this forum, and I’ve been doing a more realistic pace ever since.
Just wanted to let you know my experience. Yes I could tolerate the growing pain as I quickly reduced the prednisone but as I look back I think that whole year was a waste and then I had a major set back and basically started over. Perhaps I would have taken way less prednisone overall if I had a doctor who advised me about a realistic reduction plan.
Each of us is different, of course, but my advice is don’t be in a rush to reduce.
So many of our stories are the same. Wish the medical field could get on the same page. I wasted last year, lots of pain. lots of fatigue. many side effects from pred. Then I found this forum and wow what a difference. I am learning so much here about how best to handle this miserable disease. Thanks to Everyone, the info is great and the comradery
Thankyou. it really helps to hear of other people’s experiences, especially as family and friends don’t really understand or know of the condition, as I didn’t. As for reducing Prednisone, I don’t know why doctors tend to go for the reduce quickly option. My doctor agreed with the Rheumatologist on the reduction by December, and I started on 15mg.
It doesn't hurt initially, but besides the increased risk of broken bones you can also end up with a stooped posture & in chronic pain. Wikipedia has a bit about it. My mother had osteoporosis & ended up on really strong pain killers ( which have their own side effects).
Thanks! It seems it doesn’t hurt unless you break something (Wikipedia). Not much of a relief that! I’m not likely to throw myself around but “tripping” could be a problem.😏
You don't have to do much to break a vertebrae. I have osteopenia and all I did was get up from a sitting position and I fractured my L1. Don't know which pain is worse breaking a vertebrae or PMR pain. Pretty equal.
I went to a lecture on osteoporosis last year & with falls it can lead to broken hips & resultant hip replacements & complications. I too had decided not to take AA when diagnosed with osteoporosis 15 years ago. I instead took a much less effective drug as well as doing alot of walking & vibration training. For 15 years my bone density increased. When it started to decrease pre PMR & prednisone, I decided to take AA as didn't want to end up like my mother, who ended up with a bent over posture. I consider myself lucky that I stayed off AA for so long, but also lucky that I was diagnosed with osteoporosis so early, so that I could do something about it. I also think that we are fortunate to have drugs like AA that can help.
That is fair enough - but there is too little emphasis on doing it naturally first. Even I have nothing against it when it is really required. But not "just in case"
It’s really odd, does the OP actually hurt some people? If one is bent other things would be “squashed” and of course breathing would be difficult, but is it the ‘bones’ hurting?😏
So far (although dexa scan was 2 1/2 years ago) only got OP in hips t-score -3.4. I’ve been on Bonviva since so ‘should be’ better now. Must go again!
Hi ClarkB
I’ve taken AA since being on Steroids for PMR & am now on Zolendronic Acid, only one more to go! I was changed Post Chemo following a recent Trial, I realise that is not of any help to you but thought l would explain why.
However, the Unit l’ve been to for my Dexa Scan is actually an Osteoporosis Unit, l don’t know if they are few & far between, we drove 45miles for my Scan on the NHS & as it was in Llandudno made an afternoon out of it.
As you have Osteoporosis ask for a referral to get the most up to date information, treatment & advice. Also look at the Osteoporosis Website for Info.
I’m sorry Mrs Nails, for not replying sooner. I still get in a muddle over posts - if I don’t see them straight away, and others come up I can lose them!
Is Zolendronic acid an alternative to AA? I have trouble swallowing, and I know there are dissolvable tablets, but I have had problems with my chest and breathlessness. I don’t want to make the situation worse. I have read some very negative articles on AA, not simply in newspapers, but when I’ve looked at scientific reports (internet!) intended for colleagues! My scan is with an osteoporosis unit at the hospital.
Thankyou very much for your advice and suggestions.
No worries, sometimes threads disappear only to reappear at a later date.
Both Alendronic & Zolendronic Acid are bisphosphonates, the Zolendronic is given by an infusion over about 20minutes to half an hour once every six months, so if you do have gastric issues it bypasses that.
Bisphosphontes do have a bad press & they are given out routinely when people are put on Pred without considering a Dexa Scan first to see if it’s really necessary.
There’s quite a lot of articles on this forum about alternative ways of improving bone density.
From my point of view I’m very glad that l was on it as l developed breast cancer 3 years ago then following my Surgery & Chemo my Oncologist explained about the Zolendronic Acid being used as a treatment to prevent Breast Cancer Cells passing through to the bone where it’s very prone to spread, so l have a totally different view to most people.
The Osteoporosis Unit will have lots of advice & information to help you make an informed choice, especially if you already have Osteoporosis.
Good Luck with your decision & I’m the exception rather than the rule.
To be fair MrsN - I'm not against bisphosphonates being used properly! In BC is one very positive place for their use - and if someone DOES have low bone density I feel it may be appropriate. What I REALLY object to is them being handed out like sweeties to all and sundry "just in case" because they are to be on steroids. They should not be used prophylactically without good grounds. Dexascan first - and then try non-pharmaceutical approaches if suitable.
Mrs N, I can quite understand your reasoning for taking bisphosphonates, and think under those circumstances I would do the same. I hope that you are in the clear now, and it’s unfortunate that you also had to have PMR too. Apart from osteoporosis, I was diagnosed with Diverticulitis in 2013, and some symptoms overlap with the PMR. I have read there can be a connection. The trouble with reading is that you can become so engrossed, it’s like doing a degree in the subject!
I will look into other ways of improving bone density. Thankyou Mrs N. I could do with putting on some weight as I am down to 7stone13, yet have a huge appetite! I feel so bony! Brenda C
I’m back for my three year review on 5th July, always good to get that done & dusted. x
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