Hi newly diagnosed PMR been on steroids about 10 days.
I phoned in to give an update with my doctor who advised re preds, but also prescribed allendronic acid to prevent bone resorption. I've read the side effects and my teeth aren't great (1980s dentists who were paid per filling) and I've booked to see the dentist before I take it.
But do I need it and should I have a bone scan first?
Also feeling bloated and nauseous in the evening which is probably pred.
Definitely ask for a dexa scan before you take it. I am a victim of the school dentistz drill em and fill em approach.
Have you had a simple carb loaded meal prior to the bloated feeling.
Thanks...I feel I should have a scan...at least know where I am...i haven't been offered it...and are doctors reluctant?
I'm trying to to be careful w diet...so no processed carbs. I did have a ginger tea which seemed to help. Pain mostly gone, but feel fatigued some days and other days almost 'normal'!
Ugh! that dentistry back then was criminal.
Yes and the dentist slapped my face as I couldn't sit still for a local I was frightened not awkward ...I have been needle phobic all my life. Of course I have to inject myself with insulins twice a day. 😃
Dr do seem.very reluctant. I would love to see what they do as they age. I asked Dr for first one...refused to take AA until.i took one. Currently waiting for the results of my second scan and xrays.
Fatigue has been my main problems.😴😴😴😴😴
Ugh...unbelievable...I remember my dentist telling my mum (i was about 13 and about to have a brace) that he was going to give me fillings to prevent me from getting rotten teeth and needing fillings...!!!!!! I had perfect, if a bit gappy teeth. They were paid loads by the NHS to do fillings. He drove a nice car and lived in a posh house, whose foundations were presumably crushed up enamel and dentine of teenagers' teeth. Anyway, rant over.
Thanks for the advice re scans. Sorry to hear of fatigue. I can't tell if I'll have a good day or not with fatigue...it kind of knocks you over when you least expect it.
My older sister had most of her fillings out as an adult. None required. What a scam!
Me too! Perhaps we should have a hash tag #metoodentists!
I call fatigue my slack jaw glassy eyed look.
Do press for a Dexa Scan prior to accepting Alendronic Acid. I did and was found to have very good bone density and therefore it would be pointless and unpleasant ( potentially). 2 years on and my second Scan was good.
My teeth aren’t great either, nothing to do with Pred. I remember nausea and bloating on my early doses of Pred. It was made much worse by bread/pastry that sort of thing - carbs basically. It improved as I tapered. Make sure you get plenty of rest, I remember feeling sick and tired, a nap often sorted it. PMR 3 years, 5 mgs Pred.
Thank you...that's good to hear and glad your bones are good and you are lowish dose pred.
My family doc and rheumatologist disagree on bone drug. Family doc says wait til next bone scan as first was great result. Rheumatologist says take ASAP. I am going with family doc as the bone drug is brutal.
Good plan , you can always use the bone health tips as part of a healthy 50+ lifestyle to help make sure results continue to be good so you don't need unnecessary medication.
Unfortunately , many Doctors don't have , or haven't kept up, with the information about alternative methods to drugs in areas like bone health and their success.
So they just robotically follow old guidelines when you present with illnesses that can cause bone or other issues.
They often get in a habit of treat first , test later.
But we have to take enough drugs with their various side effects , so any times when there is an option to try a known , medically successful drug free alternative first , I feel it is probably good for us to be given the chance to give it a go.
Hi welcome to the forum. You probably have loads of questions you need answering and our more experienced members will be along when they wake up. I was only diagnosed in Oct 18 do am still learning myself. I personally decided against alledronic acid because of the side effects. Are you able to discuss this issue with your gp or are they pressing you to take it? I noticed after a few weeks on pred I was very "windy"!! I have not experienced nausea with it though but we are all very different.
Please keep us up to date on your pmr journey, the highs and the lows. X
Thank you...I like my GP, but like all GPs they are so busy...so there's a lot of phone consultation after first exam...and I do feel a bit hurried. I have pressed to have a 6 month blood test for glucose and other things to monitor. I'll ring in the morning and ask for a scan....reading Kate Gilbert's book...suggests scans are important for all but esp younger end of the range (I'm 51) for baseline and rule out other diagnoses.
Welcome to the forum and keep coming back as often as you need to ask questions or get support whenever you need it , we all understand and are hear for you.
If you are at the younger age with PMR it really is advisable to politely but firmly tell your GP that you would prefer to have a scan before taking AA.
It is not obligatory to take that drug with PMR , and bone density if it is fine on your scan can be maintained with exercise at a level you can cope with and diet.
Your GP is only going to be reluctant about ordering a scan because of cost , but their budget concerns should not be put before your rights to know your condition before taking any medication.
You should request Calcium and Vitamin D blood tests , plus blood glucose so you know what you may need in terms of supplements . Calcium and Vitamin D are regularly given to PMR sufferers to prevent the damage and bone issues caused by taking steroids and inflammation.
PMR can be a long journey so getting the right working relationship with your Doctor at the beginning really helps. You both need to act like a team and you need to feel they will learn about the best course of action for you with the illness and listen to your needs and requests .
The most important thing though now is to give yourself time to adjust to the " New Normal" .
PMR takes time to accept , you can do much that you did before , but you also need to accept that you might need to adjust they way you do things.
You need to be patient and honest with yourself and take time to balance your needs with plenty of rest to stop the Fatigue .
Being honest with the people around you and educating them about PMR is important too.
You will need help at times and you will need them to understand that there will be times when you have to make last minute changes to what you planned to do .
You will also need help with things like household chores etc that you may have always done before . That is so that you can save your energy for the things you really want to do , not those you think you need to do.
Ginger tea and green tea through the day can help with the bloating feelings.
Cutting gluten and processed foods and sugar from your diet can help too, plus reducing high carb foods will also be helpful in stopping blood sugar issues and preventing gaining alot of weight because of steroids and changed in your exercise.
Taking a good vitamin and mineral supplement is also beneficial. And keeping well hydrated can help with many symptoms of inflammation and maintain your skin.
At the moment though just take the time to relax and learn about PMR through helpful advice and links that you can find on the forum, PMR is something you can learn to work with as you go along with our help.
Take care and remember we are all here for you , Bee x
Thank you for this v thoughtful piece...Yes...sounds all great advice...to start on this journey knowing as much as I can. I will ring my GP in a minute. and like all medical things...knowing as much as i can now will prevent possible further problems. I don't think my bloods were tested for Vit D and calcium.
I'm finding it hard to adjust yet, I know...and because I look ok it's not obvious that I'm not ok,,,but I guess I don't need to tell anyone on this forum that!
Many thanks again
Please push for a scan. I was told being over 65 I should take AA no need for a scan. When eventually I convinced a dr to give me a scan my bones were fine and I had not needed it. By then it was too late and now I'm waiting for a hospital appointment just to have a tooth out because my dentist won't do it.
Oh dear...sorry to hear that...yes...sounds like I should def ask for one.
Kate's book is great. I am lucky to have a good gp like you but getting to see him is hard. I am only 55 but there are lots younger than me on the site. I havnt had a scan but when I see my gp again I will suggest I get one. I.wont hold my breath though as some gp's dont seem keen to arrange scans!!. Hopefully you will get yours to agree.x
Yes it is definitely a budget thing not good preventative healthcare .
False economy as ever!!
My gp put me on alendronic acid as she gave me prednisolone. I took 3 doses and then had a phone call saying don’t take any more until you have been to a dentist. I gave up completely. 18 months later another gp sent me for a dexa scan and I went to get the results. They were good. Very mild osteopenia (I am 65) so not unexpected. Report said no alendronic acid, carry on with vitamin d3 and calcium and rescan in 1 years time when hopefully under 5mg of prednisolone. I am now on 4.5mg and hoping for another good result. I am so glad I stopped taking it early on.
Thank you all for this advice...sounds v good...I haven't been offered Vit D and calcium...is this on prescription?
It is for me.
Yes accrete d3 is on prescription. I was on d3 before my diagnosis as d3 deficiency was diagnosed and after my dexascan the doctor changed my prescription to the combined d3 and calcium.
Yes , with this condition you can get the medically approved doseage and type of Vit D and Calcium on prescription .
Many people are also able to get VitK on prescription from the more holistically minded , sensible GPs , but it isn't a standard to offer it.
My GP said take it if you want but it can't be on prescription , but they do try to save as much as possible under the Welsh system as it comes out of the free prescription budget.
Until I " educated " my GP on PMR they gave the usual month supply of Vit D that they give for vitamin deficiency then said that I'd had a month and that's enough to solve the problem . They also knew nothing about the benefits for using Calcium and Vitamin K to help prevent later bone issues.
One thing you do learn as you go on with a illness like PMR is you do need to get well informed and be prepared with the polite requests for what you need , you basically have to be patient with the " little dears " as they learn about it as they go along just like you and sometimes you need to give them the training!😋😁
You also learn that if you go to a GP or Consultant who doesn't listen to your questions or gets annoyed if you tell them about things you learnt about your illness and what you would like to try to help yourself , you best move to improve your stress and recovery is to move on and find another GP or Specialist that does.
Big hugs x
I am a pretty fit 71-year-old. I, too, was immediately prescribed Alendronic Acid, Calcium/Vit D3 and Omeprazole (to prevent stomach problems or acid reflux), all on prescription, as soon as I was put on Prednisolone for PMR in April this year - it seems to be standard UK GP practice, probably as defined by NICE guidelines. I was willing to take the AA - my mother and my younger sister both had/have bad osteoporosis and suffered breaks after falls. Both have used AA without problems - some people get more side-effects than others. HOWEVER, I also DEMANDED a DEXA scan, which I am due to have next month. Given my family history, I feel this should have been offered as standard, but the NHS does try to cut cost corners where it can...…….. Anyway, most GP's will agree to the scan IF YOU ASK.
I wasn’t prescribed Omeprazole but have no problems taking the prednisolone with food
Absolutely , even without PMR or other diagnosed joint or bone diseases I think people who have a family history of Osteoporosis should get a Scan automatically to spot a potential problem earlier , and allow you to begin preventative measures that stop things getting harder to treat.
Just like the earlier breast cancer screening for people in families with previous breast cancer sufferers.
It shouldn't be thought of in terms of costs , but as a priority , as in reality doing the simpler screening tests early on is a great preventative measure for lots of illnesses and reduce the costs in the long term when you don't end up having to have more costly treatments by not having early screening.
In fact better education of people wouldn't hurt. I somehow picked up information that we start losing bone mass around age 35 - but I was well past that age, past the time when I should have been building as much bone as I could.
Dexascan first - my bone density was fine and had barely changed in over 7 years of pred, much of it at above 10mg.
That is the recommendation from the BSR - and especially important for younger patients since bisphosphonates should only be used for a maximum of 3 years at a time. If you get into the realm of Prolia/denosumab that becomes a life sentence since if it is stopped there is rebound excessive loss of bone density - so more Prolia or switch to oral bisphosphonanates, intolerance of which is usually the reason for using Prolia.
Just requested bone scan...my GP very reluctant but submitting request to local hospital. She is reluctant because she thinks I need AA because I have had a break in my arm in 2010 which suggests she would prescribe it even if a dexa scan came back as normal..as she foresees a risk there anyway...(I pointed out it was a hairline break and a spectacular fall and have fallen off bikes and been quite bumped about since without problems)...but said I would really like a baseline to know where we are to compare in the future should problems arise. She said scan would only be done if the results would change the treatment, but that she would treat with AA anyway. She also strongly suggested that she foresees me only needing steroids for about a year, which seems contrary to what I read on this site.
Well done, just keep sticking to your guns. Falling off a moving bike a reason for AA. Pft. They can't argue with a baseline, well shouldn't.
I am glad you know that 1 year is a pretty rare animal indeed. As you know the evidence suggest 2.9yrs. at least mine said 2 years minimum.
Thanks..I don't want to antagonise her and want to work with her...and it frustrates me when surely good medicine is to get baselines and gather as much knowledge as possible to prevent further problems, or know what beast you're dealing with. If I'm still with this in 3 years time and they do a bone scan, I will have not comparison to what might have changed.
Exactly.
Exactly! My GP ordered a dexascan within first two months of diagnosis to get a baseline. No problems with my bones.
He also mentioned recommendations were to repeat every two years but said he will order a scan annually instead given I’m on pred.
As many others have posted here, scan first then respond accordingly based on results.
Welecome!
And if you don't mind me asking...have you ever been prescribed AA?
Nope. The results of my first scan were good. My GP gave me instructions to take calcium and vitamin D daily when I began taking pred. Since then I’ve added K2 after reading related posts on this forum.
Thank you...I think I really need to press for this approach...here the NHS have to try to keep costs down...but i think it's false economy not to do early baseline tests. And I don't think I want AA unless I really need it. She suggested I'll only be on preds for a year and so won't have need for a yearly scan because I'll be through this condition by then.
Most of us live with condition much longer than 1 year!!
I know! That's what I said to her. I mean I hope it is short, but in the likelihood it's going to be a while longer, I think i need scan.
medpagetoday.org/rheumatolo...
is from a top name in the Mayo and PMR world. They found fewer than 1 in 5 were off pred in under a year. I'll take Eric Matteson's word over hers any day!!!
Not sure what world SHE lives in!!!!
Good lord - I broke a leg in the early 90s. My bone density was fine - even after 7 years of pred and no AA.
New mantra: No scan, No AA ...
I know...I mean even the strongest of bones is still breakable.
And I even forgot I'd ever broken my arm...maybe that's the pred!
I think I forgot a leg broken in Motorcycle accident when I was 17 when I had my first scan.
Hi Daisyfield. There’s a lot to take in when you’re first diagnosed. I remember being overwhelmed, trying to get my head round a condition I didn’t understand and for which there’s no single route to recovery. This site has been my saviour.
My gp phoned me following rheumatologist letter to say she was adding AA to the script, along with AdCal, a Vit D and Calcium supplement. She said I should have a full dental check before starting Alendronic acid tabs.
In a nutshell, after speaking to the dentist, pharmacist and doing further research, I decided not to take the Alendronic acid. I found this book very helpful:
amazon.co.uk/Your-Bones-Pre...
I’ve taken the chewy AdCal tabs, with no problem, but it would take a lot to persuade me to take Alendronic acid. But that’s my choice and we’re all different. Don’t be afraid to ask or challenge your dr. They follow guidelines to cover their own backs and what’s best for them may not suit individuals. Good luck on your journey with this unpredictable and challenging disease.
Thank you,,,yes...lots of very useful advice and info....i have requested bone scan...and waiting to hear back. Lots to take in...I don't want to to AA unless necessary...and would prefer to have monitoring rather than throw all the drugs in. Good to hear on this that people have maintained bone density without AA.
No rush on the bone drug. Get the test then think about it. You just started Pred. Also need all your dental work done before you start bone drug.
Yes...my GP didn't check this and my teeth do need work.
You've been getting great advice here. Just want you to know about this post I made in case you want to be proactive about maintaining your bones:
healthunlocked.com/pmrgcauk...
Thanks Herons , perhaps it could be a link in the side bar , so many of us have need for this bone healthcare information , with PMR or in general at 50+ , it would be really useful for an easy access read. Xx
Well, that's not for me to decide.
Thank you...I\'ve had a quick read and will have a longer one over the next coming days...all v useful as i do want to keep up exercise. Walking may be the way.
Stopping Alendronic Acid 
Newly diagnosed PMR
Alendronic acid
