I am 67 and After three and a half years of having my PMR supervised by my GPs, I finally asked to see a Rheumatologist. I seem to have been stuck in 2.5mg of Pred per day for about a year now - no big flare ups - feeling comfortable - and I thought a second opinion away from my local Surgery might be useful.
The consultation turned out to be over the phone for 45 minutes. The Rheumy wants me to try to taper down to zero - I understand it is normal to feel aches/pains for first few days after dropping dose - then your body gets used to this lower dose.
BUT my greatest concern is he wants to prescribe Alendronic Acid. I suffer from a Hiatus Hernia so my stomach is not always good - I feel AAcid would not be good to take. I am quite concerned. I had a sort of fear put into me of not taking it and did query with the Rheumy whether it was absolutely necessary.
Can I ‘protest’ about this to my GP and refuse or should I just accept, what is, let’s face, the opinion of an expert. The results of My last two DEXAs scans have been OK, according to my GP but the Rheumy just wants to ensure I do not get Osteoporosis (and broken hips) when I am much older. I did break my arm last year - but this could also have happened if I was 21!
By the way VERY INFORMATIVE site - only found you few months ago.
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MaritimeMags
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Sounds like your Rheumy has been reading the same literature as my GP! It is ludicrous you should be asked to use bisphosphonates at 2.5mg and with a good Dexascan. Are you seeing the Rheumy again? How knowledgable is your GP on PMR? I often think these rheumies feel they have to recommend something and that is why they come up with these mad solutions. Personally I would protest.
I'm no medical expert but I wouldn't have thought that 2.5mg Pred is going to be a problem if you stay there for ever, if that is keeping everything under control. My Doc suggested me taking AA but I wasn't keen so I asked her for a DEXA scan and if the results showed a problem then we would discuss further. The scan results were very good and she's not mentioned it since. As Piglette says, probably feels he has to recommend something.
Like others have already suggested, if there isn't a need for the medication yet.....say no! My rheumatologist wanted me on amitriptyline (to sleep better) pregabalin (for pain dysregulation) & omeprazole (for gut protection).....all of which I refused as I felt I didn't need any of them at the time as there were other more natural ways I could alleviate these issues and I wasn't prepared to add yet further medication to what I already had to take.
I'm two years down the PMR line and still don't need any of them!
I do however take AA as my DEXA scan showed a significant degree of osteoporosis. Had this not been the case, there's no way I'd have agreed to take it just as a precautionary measure!......(no need....say no!)
I've been on it for 2yrs with no obvious adverse effects but I'm due another DEXA scan in a few weeks and if there's significant improvement, I'll definitely be insisting I come off it....... it's is not a particularly nice drug to take and can potentially produce some unpleasant side effects......I have been fortunate enough to not experience any of them yet!
I accept I may need to take it again in the future, but I'll cross that bridge when I come to it.
Also, there is much you can do yourself to help stave off developing osteoporosis and help build strong, healthy bones, through dietary changes, specific exercises, yoga for osteoporosis and taking Calcium, Vit. D & Vit.K2 supplements. If this doesn't work then you'd obvioudly have to re-evaluate your situation.
It's very easy for a medical professional to prescribe more and more medication....and sometimes this is most definitely necessary, but if there's no actual medical evidence to support the requirement then it can easily become a slippery slope of adding more and more tablets to counteract symptoms and potential emerging side effects of others. Before you know it you're on such a cocktail of drugs you virtually rattle!
I would advise you to continue as you obviously are doing....finding out as much as you can about your condition and meds and then you're in a better informed place to argue your case.
No one can tell you what to actually do, but hearing about others thoughts and experiences will help you to make a more informed decision based on what's right for your individual situation.
And plenty of related posts - (see either right of screen or scroll down to end of posts - depending what device you are on).
I was on AA for 4 years without issues, but if your DEXA scans are okay, don’t see the point, especially with a HH.
Presumably you have been taking a VitD/Calcium supplement all the time .... most find that sufficient protection for bones.
Would say that 2,5mg is what your illness needs at the moment.....and it’s such a low dose anyway causing no problems...Prof Dasgupta said in a webinar not long ago he keeps some of his patients on that dose indefinitely- so what good enough for the expert.........
If you have hiatus hernia , then AA is contraindicated. And that is something your rheumy should be aware of on both counts. If anything, it should be an annual infusion option.
Do you have the results of your dexascans? The t-scores are what we need to know, I have never taken AA (apart from 4 tablets right at the start), I have been on pred for nearly 12 years, much of it at above 10mg) and last autumn there had still been little change in my bone density and I still do not need AA or anything more than calcium and vit D according to the local osteoporosis guru - and until SHE had seen the two dexascans done 4 years apart with almost no change she had been keen previously. This time she expressed amazement at the result. I imagine this is something the fracture clinic will have considered when you broke your arm - and they said nothing about fragility fractures.
And if you are doing really well at 2.5mg, why rock the boat? As has been said, a top UK expert is happy to keep some patients at 2-3mg indefinitely as it reduces the risk of relapses - and so keeps the patients at a low dose rather than risking going back to the higher doses that CAN cause adverse effects. Whoever this rheumy is, I'd continue with your GPs - to be honest I susepct we'd probably have warned you that the rheumy isn't always a better option, especially when you are doing well.
Obviously, you DO keep trying to reduce - but 1/2mg at a time and VERY slowly. You might get lower and every little is better - but I don't think it is essential at this stage. 4 to 5 years is a very common duration of PMR and you have achieved a low safe dose which is the aim of tapering. Not sure where his problem is ...
When I had a DEXA scan that showed I didn’t need AA the hospital doc still said I should take it. I refused saying that I had had long standing acid reflux, a major dental issue waiting in the wings due to the way my jaw formed and a cancer gene with my uncle with same gene dying of oesophageal cancer. The docs said, well they are all unlikely to happen so I should still have it to which I showed showed some surprise at their ability to say that with such confidence with 4 iffy issues. They then said, “yes, but it is the gold standard to prescribe AA with Pred”. I suggested that they write in their notes that the patient demanded not to, so they can appear blameless should I succumb to bone problems.
But gold standard doesn't mean what they think it means!!! It doesn't mean it is the best thing since sliced bread, it means it is used ubiquitously and so all other things are compared to it. Not the same thing at all. The same applies to the use of methotrexate in RA - most used, not the best ,,,
I've actually only had one doctor muttering about it and that was the local osteoporosis guru who I was seeing for approval for physio. She decided she would spend the weekend looking at my dexasacan results so I just said that while I would take something if and when I thought it reasonable but she needn't spend time on it, I'd just say no, not yet. The last time I saw her she was amazed by how good the dexascan result was. I'm sure it depends on which way the wind is blowing
What is it with GPs and Rheumy's prescribing AA as a 'just in case'.
If you do have osteo problems there are other bio-phosonates and the Royal National Ostoporosis website explains them all.
Personally if I had to take a bio, then yes I would consider all the options and hope that AA was the least best.
I had GCA and had my first Dexa scan six months into high doses - bones 97%, scan every two years and still 97%. 5 years remission, last scan taken and still at 97%.
Yes now 12 years later, yes Osteo has come along in knees. Manage it so far with Flexiseq.
My rheumatologist wants me to take zelondolic acid as dexascan taken in 2014/15 showed no RA but osteopenia..was diagnosed withPMR in 2015 started 10mg PRED not seen same GP twice for approx 3 yrs until one suggested I see a Rhuemy as I was upping and lowering and not getting anywhere near to a low dose..during all this I was diagnosed with gall stones so Rhuemy nurse put off discussion of ZA till that was sorted...I also have a hiatus hernia + mild oesophageal inflammation so don’t think it’s for me either I think I’ll pass on that one...methotrexate has also been mentioned last week by a more interested Rhuemy I saw who actually wrote by hand all my PMR history from start to present day in much detail which made me feel all the previous face to face and phone appts with previous one didn’t give his full attention as appts were done and dusted in 10 min phone call he wanted me to keep lowering which I did at my pace not his and never mentioned ZA again or had any bone scan taken since and when asked what about my bloods all said was all ok..had temporal arterial scan 2 weeks ago because of long lasting headaches and tender scalp don’t know results but GP pushed my Pred from 5mg to 40 as soon as he did tests in surgery.took my blood pressure 3 times I was so stressed being told come to surgery straight away thinking the worst..so at mo I’m on 40mg for 2 more weeks and then who knows...... I suppose I’ll lower but not told as of yet....I’m also taking colcalciferol 800ui and 30mg x2 lansoprozole my stomach has been in a tale spin since the higher dose of Pred but is calming down as the days go by.. .aspirin to thin blood while on high dose Pred to ward off possible stroke and just starting to feel less wobbly today since taking higher dose....
It isn't an unreasonable thought in his part that osteopenia you had 6 years ago is possibly worse now - but you need another dexascan to see if is has progressed and if so how bad it now is. That will also inform the choice of medication since with your history AA is contraindicated but because zolendronic acid is administered as an infusion it is assumed that will be fine. However, amongst the less common adverse effects are:Acid or sour stomach
belching
heartburn
indigestion
red streaks on the skin
stomach discomfort or upset
so even with that, severe gastric problems may be a problem in using it.
If I were you I woud call the ROS Helpline and talk it through with them:
It would be intravenously taken once a year if I go ahead but I do want a new scan but none has been offered to date..I’m hoping to get an appt with GP tomorrow and discuss things further if the bulldog receptionist has one available as nothing available today and patients have to phone 8:30 am and join the queue for appt book to open for the day....
Wow - you certainly have been through the mill. I consider myself very lucky, compared with some of the users of this very useful site. I know what you mean about seeing a different GP each time, even though you try to see the one you saw at the previous appointment! They change so fast at my Surgery - so varied opinions on PMR.I think I was ‘disappointed’ with the Rheumatologist experience (my first one in three and a half years) so would not suggest again to my Doctor that I see one.
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