Who is taking AA

[Harrywogan]

Would like to here your coments about taking AA.

[jinasc]

I was offered AA when diagnosed with GCA and started on 60mg.

I knew enough to say 'No thank you, not until I have been on Pred for 6 months and then a Dexa Scan. " There was no argument as I had read the Diagnosis and Treatment of both.

6 months later, Dexa Scan, bones 97%. Scan every two years, remission at 5years and last scan. Bones had never moved from 97%.

If I had needed bone protection, I would have gone to the Royal National Osteoporosis website and read up on all of the available medication and what you can do to help yourself.

BTW, it as a PERSONAL DECISION I did accept the two other 'just in cases' Calichew and a PPI. I did not take the PPI, reckoning that I would if I ran into problems. I did take the Calichew and six months later ran into Pseudo Gout caused by too much calcium.

From then on every three months I asked for a Full Spectrum blood test, just to see if the minerals were OK and not depleted. I know I am probably odd but I don't like 'just in cases' I only want to take meds I actually need.

[Petcut in reply to jinasc]

Hi jinasc can I ask please what is or are AA ? I’m a newby to all of this and trying to learn bit by bit.

[PMRpro Ambassador in reply to Petcut]

Alendronic acid, brand name Fosamax, a bisphosphonate which is offered to reduce the loss of bone density because of pred reducing the uptake of calcium and leading to osteoporosis. However - loss of bone density with pred is NOT inevitable, whatever doctors will claim.

[Petcut in reply to PMRpro]

Thanks for reply,I thought that was the tab you were talking about,I’m on my 5week of taking a 70mg tab once a week along with Prednisolone which was when my journey down this long road started,so thanks for info I may now challenge this at a later date.

[PMRpro Ambassador in reply to Petcut]

Did you have a good dental check-up before starting it? Any potential invasive stuff should be done before starting it. And good dental hygiene is required while on it.

[Petcut in reply to PMRpro]

No dental or any other check though at age 73yrs I only have a few own teeth at bottom

[DorsetLady PMRGCAuk volunteer]

I took it for 4 years (2012-2016) with my GCA.....no problems, then or now I’m no longer on it.

[Harrywogan in reply to DorsetLady]

Thanks DorsetLady have been taking it 31/2 years and have stopped it for a couple of month but will go back on it if it helps the bones.take care

[DorsetLady PMRGCAuk volunteer in reply to Harrywogan]

I came off it about 9 months before I stopped Pred - not that I knew that at the time- but GP & I decided after 4 years, bones were probably okay...and Pred was very low by then. As I’ve said before, DEXA in 2019 showed no issues, but suggestion was to continue AdcalD3 - which I have.

[Harrywogan in reply to DorsetLady]

Thanks that's very helpful want to keep bones as good as I can .

[PMRpro Ambassador]

No dexascan showing it is needed - no AA is my mantra. I was handed it nearly 12 years ago together with pred and I took 4 tablets before discussing it with a different GP. We agreed to wait for the dexascan result 3 months into taking pred - it was fine, only calcium and vit D recommended. I stopped the calcium a couple of years ago because I was having bladder problems due to it - but I had taken it religiously for the entire time until then and did continue with just vit D. I had my 4th dexascan last September, hardly any different from the first one, still no treatment required.

AA shouldn't be taken indefinitely and it is recommended there be a drug holiday after 3 to 5 years - opinions vary. But otherwise it is a personal decision - although I don't approve of indiscriminatory use of any drug "just in case".

[Harrywogan in reply to PMRpro]

Thanks Ambassador, good get other peoples opinions take care

[piglette]

I have excellent Dexascan results, in spite of that I have continual fights with my GP on him wanting me to take them.

[Harrywogan in reply to piglette]

Piglette, I dont understand that either.

[piglette in reply to Harrywogan]

I think someone has said that AA should be given to people on long term steroids and they have never questioned it.

[PMRpro Ambassador in reply to piglette]

Fosamax was very cleverly marketed to doctors: they could give this perfectly safe drug to all their elderly ladies and they would never have to see a patient with a fractured hip again. And they believed them. What a generation of doctors learns at a certain point in their training is very difficult to dislodge. They are also taught that steroids inevitably lead to loss of bone density and increased risk of fractures. The obvious answer is to give all pred patients alendronic acid.

[piglette in reply to PMRpro]

Good old Merck. I noticed they have had to withdraw their drug testing on the Covid vaccine.

[PMRpro Ambassador in reply to piglette]

Mmmm - noticed that. Interesting ...

[Arflane97G]

I was offered it but side effects sounded so dreadful I declined

[Harrywogan in reply to Arflane97G]

Artflane97G I cant say I've had any side effects,but have been on it a few years so wanted a rest from it. If it helps the bones think its 5years then you have to stop it.My sister is also taking it as she has osteoporosis.will be glad to get off all this rubbish we have to take . Take care

[Ranchero]

When first diagnosed with pmr I was prescribed AA. I read the leaflet about how and when to take it and the possible side effects - put the packet in a drawer in which it has stayed untouched for 2 years. I am now down to 6.5 mg pred and bones are fine.

[Harrywogan in reply to Ranchero]

Thanks Ranchero, my last Dexa scan showed I had ostoprainia but very slight so weigh things up, take care.

[SnazzyD]

I refused it unless I had a DEXA first. Although I had osteopaenia as opposed to osteoporosis I still refused it on the grounds that I will have to have major dental work when the chickens come home to roost due to my odd bite. I also have the BRCA2 cancer gene as did my uncle who died of oesophageal cancer. Add into that years of acid reflux I decided there were to many risks. The docs still treated me like I was an oddball and that the risks were too tiny to worry about compared to my bone that would surely crumble. Prior to diagnosis I was found to have extremely low vitamin D and I suspect I had been like this for years. Did my bones survive 4 years later? My DEXA appointment is pending.

[Harrywogan in reply to SnazzyD]

SnazzyD hope your bones are holding up well always think mine cant be to bad as I fell down 3 steps which had black ice on them was a very bad fall and nobody heard me scream,lol keep in touch and let me know how DEXA goes. Take care

[SnazzyD in reply to Harrywogan]

Oh yes, I’ve had 4 pretty bad falls onto hard surfaces spread scientifically even over the 4 years. My hip took a real whacker on paving but it was fine. I blame dogs, deer, stupidity, impatience and bad luck.

[PMRpro Ambassador in reply to SnazzyD]

They got really excited at one point when I was asked had I broken a bone. Until I pointed out it was 26 years ago in a high speed fall skiing - I got the typical break too: spiral break of the proximal tibia!

[Harrywogan in reply to SnazzyD]

SnazzyD so easy done iwas out shopping (that was when we could go to shops) and down I went and it was a grape someone dropped.Always tend to look down now lol.

[PMRpro Ambassador in reply to Harrywogan]

Should have subitted a claim to the supermarket ...

[Harrywogan in reply to PMRpro]

Never thought at the time lol

[Lowercwmtwrch]

I took AA for 3 weeks, had pains in my ears & jaw, i have had alot of tooth trouble in the past & have read that some dentist won't work on patients on AA as there have been some cases of jaw fracture & along with the chronic acid reflux I definitely won't be taking it anymore, best thing is to do your own research to make an informed decision! Take care & Stay safe!!

[Harrywogan in reply to Lowercwmtwrch]

Thanks Lowercwmtwrch good to know all this, at the beginning of my Pmr journey was told to take it and I did, and it's been 3 1/2 years with no side effects I know you can only take it for 5 years. Iv cut it down to 1 every second week now. Thanks for you input.