Age 72, fairly fit and still playing golf once a week. Diagnosed with PMR here in Spain 6 weeks ago. I already have osteoporosis (T-2.5 in hip and osteopaenia in spine). I was given intravenous Aclasta 2 years ago without being given full information about side effects (language problem!) and it took me a month to get over it. I am now taking Ideos Unidia - calcium 1000 mg and Vit D 800 Ui - daily. I am very reluctant to take any alendronates because of my experience with Aclasta. Advice on when to take the calcium & Vit D supplement is at least 3 hours after prednisone of which I'm currently on 8.75 mg daily. The pill taking is becoming a bit of a nightmare. Spain don't do 1mg tablets, well not in my area, so I'm having to taper by 1.25mg at a time. I started on 10 mg, which I know is a fairly low dose but it was effective within 2 days. I have posted before that the Spanish GP wanted me to cut down to 5mgs after two and half weeks. I queried this but she insisted. After 2 days on 5mg the aching and stiffness had returned so decided to do self tapering and I seem OK on 8.75 mg! After explaining to my local pharmacist she sold me 2.5mg tabs (without prescription and which I cut in half courtesy of a brilliant Boots pill cutter!) so I am able to some extent to self manage. I hope to visit my old GP in England when over for Xmas and see if she will prescribe some 1mg tabs. In the meantime I'll stay on 8.75 until I get back to Spain in the New Year.
Secondly, I have read on here that some people have undergone Bowen Therapy. I have found a therapist here in Spain and so far have had 2 sessions. I'm not quite sure what to expect as it seems such a 'light touch' treatment. I lie on the couch and think to myself 'I wish she'd press a bit harder and give me a massage' ! I have a 3rd session booked for next week but I would welcome people's experiences of this.
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golflady17
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I'll just address one of your points. To really make sure your Calcium/Vitamin D3 supplement is effective you may wish to make sure you are also getting some Vitamin K2 (not K1 which has little help for the bones) as well as the usual suspects, much of which you can get from food - Magnesium, Boron (you can get enough Boron from a handful of prunes!), Vitamin A (retinol), mixed tocopherol Vitamin E. The idea is to make sure the Calcium goes into your bones where it belongs, and not onto the walls of blood vessels.
Golflady, that is a low amount of pred after six weeks, I am glad you are comfortable though. Are you taking Medrol as your pred? I am glad you are now able to cut the tablets.
I tried Bowen but sadly it did not work for me, but it does seem to be a godsend for a lot of people with PMR.
Bowen kept me upright for the first 5 years I had PMR - undiagnosed and untreated. Now it keeps my back muscles happy and seems to prevent the trigger spots that develop in myofascial pain syndrome. MPS is very often found alongside PMR and the trigger spots are concentrations of the same cytokines (inflammatory substances) that cause PMR when they are found systemically, leading to inflamed blood vessels. One lady on the forum was stuck in bed for 6 weeks, able to get to the toilet except with a zimmer frame, and one session meant she was able to walk out of the room on her own and leaving her walking stick behind! Three sessions got her to a better physical state than he'd had for some years although she had GCA and never had PMR symptoms.
Despite my personal enthusiasm for the use of Bowen to try to find a way of dealing with the "add-ons" of PMR (not PMR itself, that's different), I do also always emphasise that if it will work for YOUR problem you will know in 3 sessions. If nothing has changed in that time (though it may be only a start that requires more) it is unlikely to do so and for that particular problem you can stop spending on it, it isn't an open-ended commitment. I enjoy it for the uplifting and relaxing effects as well as the pain relief and for me it does work well.
which means that a 1.25mg drop isn't as much a shock - I used it for 1mg drops as I can't cut my tablets because of their coating and it has been used, slowed even further, for 2.5mg enteric coated pills that can't be cut either.
I too face decisions about medication for osteoporosis, having already not done well on the oral bisphosphonates (fosamax). I know we are all different, but please tell us about your bad reaction to Aclasta.
I was given IV Aclasta immediately following a consultation with a rheumatologist here in Spain and within the Spanish Health Service. I went straight from the appointment to the day hospital where chemo etc is given. I was not given any information about the drug apart from the nurse who set it up asking me if the doctor had told me to expect a headache!! I also had to drink a glass of water before and after the infusion - although I understand the advice is to drink copious ammounts of water before the drug is administered. I felt fine for the rest of the day but woke during the night feeling as if I had flu and had been kicked by a donkey. I had a temperature, spent 3 days in bed and had muscle aches and headache. It took me nearly a month to feel normal. This drug stays in your body for a year so bear that in mind if you are considering having it. There is well documented information on the side effects available on the internet. On a positive side my T scores had improved slightly at a follow up DEXA scan a year later. I am not advocating not having it - just make sure everything is fully explained, you follow the guidance re: hydration etc beforehand and you may well be OK.
So that suggests that the basic checks weren't done either - calcium and vit D levels (which must be correct), renal function and a full dental check and anything done that required to be done BEFORE it was given. The data sheet also says very clearly that in patients above 65 years adequate hydration before and after the infusion is essential - and a glass of water isn't what I would call adequate!
As for the post-administration effects, it says:
"The overall percentage of patients who experienced adverse reactions were 44.7%, 16.7% and 10.2% after the first, second and third infusion, respectively. Incidence of individual adverse reactions following the first infusion was: pyrexia (17.1%), myalgia (7.8%), influenza-like illness (6.7%), arthralgia (4.8%) and headache (5.1%). The incidence of these reactions decreased markedly with subsequent annual doses of Aclasta. The majority of these reactions occur within the first three days following Aclasta administration. The majority of these reactions were mild to moderate and resolved within three days of the event onset. The percentage of patients who experienced adverse reactions was lower in a smaller study (19.5%, 10.4%, 10.7% after the first, second and third infusion, respectively), where prophylaxis against adverse reactions was used."
It also indicates that if you have problems with oral bisphosphonates it must be clear what they are due to - zolendronic acid (Aclasta) is a bisphosphonate and if you are intolerant of alendronic acid (Fosamax) there are reasons why you might not tolerate others.
I took oral alendronic acid for 3 months after being diagnosed with GCA and starting on 60 mg. prednisone. I already had osteoporosis prior to the GCA and had yearly Dexa scans. (I am a high risk profile: small, white female aged 67) My blood was checked for calcium levels, and the other relevant factors before starting the alentronate. After 3 months I stopped it (with GP's recommendation) because I was experiencing increasing tightness and some discomfort in the center of my upper chest. It seemed like my esophagus to me although there was no difficulty swallowing. I always took the pill the recommended way. That was 3 yrs. ago and my BMD scores have only slightly worsened since. Both the GP and Rheumatologist have said I should try the injected bisphosphonate because that bypasses the ingestion problems, but I remain too fearful of the side effects of jaw necrosis and/or atypical femoral fractures to agree to trying it. The WHO 10-yr. fracture risk for me is 7% for the hip and 21% for other osteoporotic fractures. But there are no statistics about my risk for fractures from taking bisphosphonates, except that it increases sharply after 2 years of taking it. How do I weigh benefit vs. risk? I see my choice as between risking a hip or vertebral fracture without the drug, or risking a femoral fracture with the drug. And I'm hearing more and more about how difficult it is to heal the atypical femoral fracture and the jaw necrosis caused by bisphosphonates. I am currently inclined to choose to continue without bisphosphonates.
cdenoncourt - are you doing any other things to help with your bone density? I've been posting quite a lot of stuff here lately about my own efforts as I am too afraid of any of the OP drugs to accept my GP's rather insistent offer of them. Having two friends who successfully moved themselves from osteoporosis to osteopenia range I know it can be done. (One of them has slacked off and become osteoporotic again, the other continues with her self management and continues to improve. It does take work.) Prednisone is a complicating factor as it actively interferes with calcium absorption, but I am becoming more and more convinced that with the right diet and exercise we can treat our bones as effectively with natural methods as any of the problematic drugs currently on offer, without risking any side effects.
Yest I have followed with interest the things you are doing to treat osteoporosis naturally. I'm very health conscious and pursue a healthy diet faithfully, including almost no refined carbs since starting prednisone, no alcohol, no coffee, no sugar, (and no gluten and dairy for me after elimination diet testing). I do get plenty of calcium in my diet without dairy. I also have taken calcium citrate and D3 and the right K and magnesium citrate for years. I live in FL and go sailing and get plenty of sun. I do load bearing exercises 4 times a week wearing weights on my wrists, etc. About the best I can say about the results of my efforts are I might have been worse without it But like you, I still believe in it and won't stop trying.
Wow, you are better with your diet than I am! I wonder can anyone answer this question: I read recently that we should eat 2 cups of vegetables at both lunch and supper/dinner. I can't think how one would get that quantity of veggies on a daily basis without eating a lot of salad. As I dislike having to cook I can't think of anything more dreary than having to prepare platefuls of cooked vegetables for two meals a day. I am okay with making big batches of vegetable-bean soup or big salads sometimes, but every day? BTW not into "green smoothies."
Stir fries are good and you can get a good mix of vegetables - if you can bear all the chopping and slicing. I have some kind of home made vegetable soup most days that I'm at home for lunch and try to have a salad with some protein for supper but the cold weather weakens my resolve (never that strong) and it's so easy to reach for the bread and cheese after soup or a salad, justifying it by the need for calcium - though I can't justify the bread, it just tastes good! As for eating out - better not to ask......
Well, that's the thing. It is so much work. I do stirfries quite often, but that is more of a main meal thing. I don't want to spend major prep time on the midday meal. I do not eat bread for lunch anymore - no more sandwiches. Looked this up on the internet and the site I read suggested eating a lot of fruit. Well I wouldn't have a problem with that if lots of fruit were actually a good thing which it isn't.
The idea behind all the vegetables is that it is a better way to get your carbs than from grains. A good book on the subject is "Whole30" by Doug & Melissa Hartman.
So what do you eat if you have already given up the easy to prepare grains (slice a piece of bread) which I have, but now I am faced with buying, washing, chopping up and possibly cooking, two damned cups of vegetables for my lunch? Every day. I guess this is my PMR/pred fatigue kicking in. Sigh.
I admit it is more work, but as you continue trying to get most of your carbs from vegetables you will find convenience items that work for you -- possibly deli-prepared dishes, packages of pre-cut fresh vegetables at the supermarket, and frozen vegetables can be OK too. I started the "Whole30" diet 8 mos. ago out of desperation to see if I could discover any sensitivities that might be contributing to my 4 relapses in 4 years even with very slow tapers (PMR/GCA). But I'm sure I only make the effort to stay with it now because it makes me feel better and gives me more energy and less hunger. For me it's not a "cure" for autoimmune disease or osteoporosis, any more than prednisone is a "cure". But it is a tool to help me live better with my condition while waiting for it to fully resolve some day.
You can find lots of tips and recipes on the Whole30 website and its many links to related sites.
Well, cdenoncourt, thanks - I guess! I have pretty much already given up grain based carbs, although I do eat a small amount. I really need to gain weight, not lose it. I'm mainly worried about blood sugar levels as they are bit high for comfort, and I want to avoid full blown diabetes which is another of pred's charming side effects.
" I am currently inclined to choose to continue without bisphosphonates." - me too! I might consider it if a dexascan showed I was down to the osteoporosis level but even then...
Some years ago work was published that suggested AA increased the incidence of atrial fibrillation so it was recommended care was exercised in giving it to people with existing cardiac problems. I have atrial fibrillation - and the cardiologist is confident it was caused by the autoimmune part of the PMR damaging the electrical cells in the heart. I took 4 AA tablets - but the a/f was there long before that or pred, but it started after the PMR appeared.
"The findings, presented at CHEST 2008, the 74th annual international meeting of the American College of Chest Physicians, show that between 2.5 and 3 per cent of patients taking bisphosphonates had atrial fibrillation"
I do know there are a few patients on the various forums who had chest pain after taking AA - and were told very firmly by their doctors they must never take any bisphosphonate. On that basis I'd be sceptical about Aclasta too - avoiding the gastric aspects doesn't remove the cardiac aspects. You may only take it once a year - but what does it do to your heart? You can't stop taking it.
Thanks PMRPro for that statistic from the American College of Chest Physicians about atrial fibrillation. Another concern for me since my mother had AF without taking any bisphosphonates. I also appreciate knowing that at least some doctors think the chest pain reaction means the injected form should not be tried.
When I was diagnosed I sent the question to a PMR-orientated rheumy in the UK. The only response they came up with was "There's a higher incidence of a/f in that age group anyway". Which didn't answer the question I asked which was "Is there a higher incidence of a/f etc in patients with PMR?"
It is known there is a higher incidence of such things in patients with RA - so you might expect the same thing with any other autoimmune arthritis or vasculitis.
The incidence of a/f increases with age, so, yes, we ARE more likely to have it than someone who doesn't have PMR, because apart from any other consideration, we're older. But I'm sure there may well be a higher incidence in our particular sub-group.
No-one on this forum is qualified to answer your questions, all anyone can do is say how it affected them or provide information that anyone can access online. However - Aclasta is an infusion, given directly into a vein, so you don't "take" Aclasta and it avoids gastric problems, otherwise it is the same as any other form of bisphosphonate.
This is an easy to read article from the National Osteoporosis Society in the UK:
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