I was diagnosed in January 2024 with PMR and prescribed Prednisolone which helped. I contacted my GP this week because after reducing to 10mg my hips and groin have been getting more painful. GP said I must apologise we haven't seen you since diagnosis and you should have had Dexa scan, Calcium supplement, Vitamin D and Alendronic acid. They are requesting blood tests and xrays and referral to Rheumatology. I am easily tired by most activities. Doctor said I could be too young (61) for PMR. Lost confidence in GP and feel they are prescribing everything in a panic. Alendronic acid side effects sound quite nasty and I just wondered if everyone gets prescribed it.
Does everyone take alendronic acid?: I was... - PMRGCAuk
Does everyone take alendronic acid?
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Fifebornlass
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They should have prescribed calcium and vit D right at the beginning along with the Dexascan. The Dexascan should give some idea whether you need Alendronic Acid or not. Some doctors want you to take it irrespective. Box ticking in my opinion. I fought my doctor and won eventually. I had good Dexascan results.
I agree with what Piglette has said.
You are absolutely not too young at 61 to get PMR. I would advise you to now ask your GP to do his very best to expedite your rheumatology appointment on the grounds that follow-up since your diagnosis (which should have included regular blood tests) has been non-existent and your pain is increasing.
Please keep in touch and let us know how things go.
I got Alendronic acid prescribed for me,took it for about 3 months and decided that I did not want it any more.Dexa scan was good so I just make sure I take my I cal D3 daily plus plenty of calcium foods.Hated the idea of standing up for an hour or sitting up straight for same time,PLUS could not have my early morning cuppa!Your choice of course,everybody is different I just hate taking meds that I don’t really need.Good luck to you,x🌼😜
I was prescribed Alendronic acid & calceos about 4 months after my PMR diagnosis. I had a dexa scan after a fall the year before while walking the dog & breaking my ankle in 3 places. I was told it was fine for my age (62 at the time) Its 30 minutes sitting upright . But I was interested to hear the reply about not taking it as I wonder how important it is if the bone scan was ok . I was told steroids have a weakening affect on bones if taken for a long time . I have been on them since April 23 & I am now on 7mg after such helpful advice on this site & doing well 🤞
Glad you are doing well!You are right,it was half an hour ,sitting or standing after taking it.Maybe it just felt like an hour!🤣I have been yo yo ing on steroids since Dec 22 for GCA with sudden eye sight loss.Am now down to 5 1/2 mg due to start another 1/2 mg 7 week taper(DLs plan) next week.I have OA everywhere,the only place I don’t seem to have it is my tongue,but maybe some on this forum would disagree with that!As I say,everybody is different,some need it,some don’t but you must do what is best for you.Each drug we are given has its own benefits and drawbacks doesn’t iteh?Best Wishes to you.x😜🌼
As another member has discovered a good DEXA scan is not necessarily a free ticket to no issues…her story is quite extreme and upsetting… but is perhaps a wake up call to those who seem to be anti bisphosphonates
It doesn’t need to be an hour .. 30mins is fine -and you can have a shower or sit and read emails in that time..
.. and please don’t assume that a DEXA scan always gives the whole story. A bit extreme maybe, but a warning from tangocharlie-
healthunlocked.com/pmrgcauk...
Aaaw very true DL,will soon find out when I get my shoulder x rayed on Thursday.,Still am not going to take it though unless absolutely necessary!xx🌼😜
As said TC’s story is a bit extreme, but not unheard of-and of course we all have to make our own decisions based on our own personal needs/views.
Why shoulder xray? What’s going on there?
Said a while back that I had what I thought was a boney spur on right shoulder.I turned over in bed a few weeks ago and heard a loud crack ,pain was off the scale!Long story short,had to go to doc last week for steroid jab and MOT ,showed him shoulder and he thinks I have fractured it!No doubt nothing can be done now,too long but am in the belief that something must be impinged as the head and neck pains,mimic GCA .Never mind eh,there is always somebody else worse off,(I just want to meet the poor buxxxx!)🌼🤣😜
A shoulder x-ray won't show low bone density - totally different sort of x-ray.
Ah,but this is just to see if I have fractured it!xx🌼
I take Alendronic Acid with my early morning warm water - by the time I have been in the bathroom and dressed and got ready for the day I am ready for breakfast - so no delays as I would not eat within 30 mins of rising in any case. My dexa was not bad, as far as I understand it, but I decided to try the acid and have not noticed any detrimental effects so far (2.5 years, a break of six months and now just started again).
Hiya,that’s great if it works for you,just wish that I was more body tolerant of drugs,everything upsets me .Think that is why I am loathe to take anything that I don’t have to.Luckily ,Pred I can just about tolerate,case of having to really isn’t it?And aren’t I glad that I can!Hope all is well with you,?xx🌼💊😜
Yes I tend to get upset by many drugs so wanted to use something other than AA - I happened upon Boron and also take Vit D3. My second Dexa scan was "normal" so I am happy with that. I have also used a Rebounder for VERY gentle exercise since the start of Pred all those years ago! Must get started again as I have had a break from it for a few weeks. 3 minutes a day seemed to be helping. One day I will take a video of the minute amount of effort that goes into the "Therapeutic Bounce"!
Hi Pippah,a rebounder,is that a sort of mini trampoline?Dont fall off will you?😱Never tried Boron,might be something to think about.Holland and Barrett I guess?Everybody is different with their tolerance of drugs,I just felt pretty awful on AA,it was bad enough coping with all the other stuff I had to take.which is why I made the decision to stop it.I take one Amyltryptaline most nights for nerve pain,plus it helps with sleep,and I look like I have had about 4 double whiskies about half an hour later!All over the place!Think I might have to wean off that as OH gets worse.Perhaps Pred makes it more potent!Dont think I need to do anymore exercise than I am doing at present,running around like a blue….. fly after menagerie and OH!Happy Rebounding and be careful eh?🌼😜
There you are everyone seems to see disaster in them. Yes it resembles a mini trampoline but not the way you use it. My feet never leave the canvas base unless I am "marching" so one foot at a time. I have a sturdy dining room chair next to it for weaker people to grab if necessary. The first time I went on one even barely moving I could feel the blood circulating at my finger tips. So it is wonderful for the lymphatic system amongst other things. I have definitely had amazing benefits from it but definitely no acrobatics or trampoline tricks!
Good for you!Great that you can feel the benefits of it as well.Perhaps you could get a big one for the garden next year!xx🤔🌼😜
No I have no desire to go bigger - it wouldn't be the same at all! Although they do put astronauts on big ones when they return to earth to compensate for the damage weightlessness does to their bones. Actually at my age (79) I would find it difficult to get on a bigger one I think.
Never say never girl!With your fitness regime you will soon be starring in the Cirque de Soleil!xxx😃🌼😜
Definitely not too young - all evidence is pointing to it happening to younger people. I am 60 - diagnosed in Feb/March 2024. I was given Vit supplement and another Dr sent me for a Dexa scan which thankfully was ok. I'm still waiting for a rheumatoid appt. Tiredness is my main symptom now too.
I do find the tiredness quite limiting. If I go to the shop in the morning, I can't do much in the afternoon. I try and help look after my 2 and 5 year old grandchildren and I am wiped out. I used to enjoy long walks but now I need to stop and rest on a short walk. It's hard to describe to my friends when they want me to socialise, I know I won't be able to keep up.
You probably need to have a good look at the posts re pacing - see here’s-
healthunlocked.com/pmrgcauk......
Maybe show this to friends -
DorsetLadyPMRGCAuk volunteer
As others have said all this should have been considered at the beginning.. guess someone new has just arrived at surgery who knows about PMR or another patient been diagnosed or they’re just read the guidelines!
You only need to take AA if a DEXA scan shows issues… and it would be sensible to get blood tests etc if offered, so many on here seem to struggle to get them… and if offered a Rheumy appointment likewise.
Your surgery may be a bit late to the party, but they are here now, so take them up on what should have been done previously. Better late than never.
Wait until you get results of DEXA scan before you make a decision on AA. It’s seems to be another drug that gets a bit demonised, but I took it for 4 years with no issues whatsoever - albeit for very good reasons.
If you’re that concerned about it look at ROS website -
Would just say if you are easily tired by most activities- are you sure your PMR is fully under control? ..and do you mean tired or fatigued, there is a difference - and fatigue is part and parcel of your disease..also maybe ask for your VitD levels to be checked.
I did give you a link to my info post before, but maybe read it again and especially the links regarding fatigue -
healthunlocked.com/pmrgcauk...
I emailed the surgery and I said I had been following the advice on this forum and was worried about the possibility of either osteoporosis or steroid induced diabetes. I felt like fatigue and muscle weakness were stopping me from activity and making me less fit. Also when i reduced to 10 mg, the pains in my hips returned. I went back up to 11mg but i am still sore. The doctor said to stay on 11mg til i felt better. I am thinking i maybe need more to get this possible flare under control. I am due to get a cataract operation in2 weeks and want to be in best possible condition for eye to recover.
Actually although the advice is often to go back to previous dose to see if that helps, it rarely does…unless you can catch it really quickly. Pity you didn’t ask us at the time.. we would have recommended using the flare protocol - as linked here - that usually sorts things out -
healthunlocked.com/pmrgcauk...
Maybe try it now - if you stay on increased dose for 7-10 you will be in time to drop back down to, say 11mg not 10mg as that was where issue was, before procedure. Good luck with that.
Once you get below 10mg reduce more slowly - guidelines do say 1mg everyb4-y weeks…many find that o.tmg per month works well. Plain uncoated tablet can easily by cut with pill-cutter.
Hi there Fifebornlass (I’m in Clacks), it’s a lot to take it but the Dexascan is important to understand your bone density and whether you actually need Alendronic Acid. I’ve taken Adcal-d3 right from the start (and prednisolone of course) but never Alendronic Acid as my bones are doing pretty well without it. I’ve had PMR since 2013 and although it’s had its moments I have a good life - now aged 67. This forum has been a godsend. PMR pro and Dorset Lady and others have really helped. Their advice is sound. 😊
I have started the Adcal D3 but I think I will wait for dexa scan before deciding about the Alendronic acid. Thanks xx
Push for it asap - if you have a car and say you can travel you might get it sooner. I ended up going to Stobhill instead of FVRH.
PMRproAmbassador
"Doctor said I could be too young (61) for PMR"
What drivel - where on earth did he get that idea from? ALL guidelines say "over 50" and that doesn't mean it doesn't happen younger, just it isn't as common.
You DO need calcium and vit D - but wait for the dexascan result before making a decision on the AA. I had a good dexascan a couple of months after starting pred and agreed with a different GP not to start the AA. The dexascan result hardly changed over the following 13 years and AA was never mentioned again. In fact, the local osteoporosis expert actually said she'd never seen results like them in a pred patient.
Then last Christmas a spinal x-ray identified a possible compression fracture and I started a course of 3 annual bisphosphonate infusions, I had had severe pain and back muscle spasms for the previous 2 years and the most common cause of that is a spinal fracture - but no fracture had been seen on an x-ray then. Since the infusion the back pain has improved dramatically - who knows, it could have been due to a fracture. But I had delayed the bisphosphonate for 13 years.
However - as DL has mentioned I'm not the only person to have not taken AA because of a good dexascan result and nevertheless developed a spinal fracture. tangocharlie 's story is quite a warning and I recommend you read it before rejecting AA out of hand. As my rheumy said when we found the fracture - it is all about the quality of the bone, not just the density.
Hi, it sounds as if your GP has been a bit dismissive of your diagnosis and neglectful in following through with appropriate care advice. You have been well advised here and I would add that good weight bearing exercise like walking is good for bone quality but that you do need to moderate your physical activity after a diagnosis of PMR especially when you are tapering the dose through the early months to find out what works for you.
I was just approaching my 60th birthday when diagnosed after many months of pain and determined to keep active with my pony. A Dexa scan indicated good bone condition so I discontinued AA and kept up the Calcichew/Adcal supplement until frequent bladder infections seemed to be caused by calcium build up so I now take Vit D3 and K as a spray.
The early days of PMR are a steep learning curve, well the whole of PMR is a learning curve but is more like a roller coaster than a constant steep slope. Welcome along for the ride Fifebornlass.
I take Calci D & my doctor has started me on Alendronic acid after being on Prednisolone for about a year now. I am waiting for a hip replacement & he says he wants to ensure the bones are strong. I take it when I get up & then by the time I have had a shower & dressed, half an hour has passed & it is time for breakfast then the rest of my pills.
i was diagnosed in june 2024, and immediately given calcium/vitamin d supplement with prednisolone and advised to take light exercise if possible. No alendronic acid yet and no dexa scan yet, only i think a calcium levels blood test (so many blood tests at start!). Im thinking about it due to other peoples experiences .... but not taken so far.
I was 61 when first diagnosed with PMR and my GP, who is not a fan of supplements (although she put me on iron pills for anaemia) gave me a diet sheet on calcium which I’ve used ever since. After a year another GP out of the blue prescribed Alendronic acid and supplements. I requested a DEXA scan immediately and found I did need them. I still prefer to get calcium from dietary sources (checked by GP) and take vit d and k2. The scan was a shock as I’ve had quite a few over the years from being part of a Bristol university medical research cohort looking at changes to do with the menopause and I had been well above average for bone density for my age. Now it showed what a year on steroids could do. Many people are fine. Some of us are not so lucky. I’m guessing that’s why GP’s often take the precautionary approach.
I’ve been taking alendronic acid for five years without a problem
it made me ill, so refused to carry on taking it and about 15 years later bones are fine x
Hi. It's all very confusing isn't it? I was diagnosed 12 months ago with PMR and my GP put me on Prednisolone, Omeprazole, calcium + Vit D and Alendronic Acid. I'm 62 and I was diagnosed with osteopaenia 10 years ago so it made sense to put me on Alendronic Acid as soon as I started Pred. Luckily I have had no obvious side effects and waking up half an hour earlier, once a week, isnt too arduous.However I was due a routine Dexa scan in January but my GP said there was no point in having it as I was already on treatment. I have only seen a GP face to face once since diagnosis with PMR and I have had no follow up blood tests. I'm a retired nurse and often feel my GP surgery is happy for me to titrate my steroids as required. I'm currently on 3mg and doing well. However I do wonder if they have just forgotten about me.
I hope you get sorted soon 🙂
However I was due a routine Dexa scan in January but my GP said there was no point in having it as I was already on treatment.
Thought it was normal practice was to monitor the patient to ensure the treatment was working correctly….or am I living in a parallel universe😊.
I’m sure as a retired nurse you are very capable of titrating your steroids, but as you say it would be nice if they showed an interest sometimes. You could get a private DEXA - but you shouldn’t have to do that.
Thank you Dorset Lady. I'm going into the surgery today for my flu jab so will try to make an appointment for a review. It is easier if you can actually look your doctor in the eye!
It is easier if you can actually look your doctor in the eye!
There’s a novel concept, wonder if it will ever catch on! 😏
I’ve seen many a nurse, HCAs, receptionists and pharmacy staff - but a doctor? Fortunately don’t need to nowadays… but
Alendronic Acid is a Biophosphonate used to treat Osteoporosis & it sounds as if your GP is testing for that…which surely is a good thing? Not everybody has a bad experience on Alendronic Acid…I found the only downside was waiting the required 30 minutes after taking it before I could have breakfast.
If you are worried try calling the Royal Osteoporosis Society, they have specialist OP Nurses who can explain AA & any other OP treatment to you.
Morning, regarding AA, I wouldn't take the AA until I had a DEXA scan which came back absolutely fine and the doc and I decided it wasn't neccessary, had a scan every two years, automatically arranged by my surgery, which has always come back good. However, if I knew what has transpired from TC's post I might not have been so quick to refuse it. It's certainly worth reading the link she supplied and then making a more informed decision.
I just want to chip in with this as there may be some ideas to help you look after your bones. It's a pity we aren;t all given good adivce about care of the skeleton from a much earlier age, but it's never too late.
healthunlocked.com/pmrgcauk...
Also:
osteoporosis.ca/medical-con...
Don't agree without questions to any bone medications no matter what your DXA scan show, because the various medications have different side effects and not all of the meds are good for everyone, and not everyone needs medication, Before you agree, do a lot of reading. There are also a couple of bone health forums in HealthUnlocked where you can ask lots of questions, just like here, and learn about real life experiences. 🍀
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