Alendronic acid question

[Lucky88]

Hi again, now after a very interesting and good (double) session with my GP (who is really getting on board with my case I am happy to say). I am given a pamphlet on Alendronic acid to read, plus a meeting set up for Monday when we will discuss further and see if I am committed to taking a once weekly dose in the prescribed manner.

I would value experiences from anyone.

Just btw, in 2 days time I drop from 10mg pred' to 7.5mg for the next month. I know this is faster than most here would recommend, though I will trust in my Doc who has assessed me specifically and see what happens. The reduction steps slow thereafter to 1mg. Watch this space!

[Rose54]

Hi

I do wish you all the best trying to drop that quickly by 2.5

I do hope its not asking for trouble as you do not want a set back

Its your choice but you are a bravery woman than I

Good Luck

Rose

[Lucky88 in reply to Rose54]

Rose, it's what the consultant planned out for me. 2 weeks on 15mg, 4 weeks on 10mg, then to 7.5mg for a month, then to 6, 5, 4 etc. He wants me off steroids asap (as do I). Deep breath and here we go in the next day or so.

BTW, I am not a brave woman, I am a muddled man!

[piglette in reply to Lucky88]

Hi Lucky88, your doctor may want you off steroids asap, but does the PMR agree?

[Lucky88 in reply to piglette]

Haha, there's the rub!

[PMRpro Ambassador in reply to Lucky88]

Quite - you will get off pred when the underlying cause of the PMR symptoms, an autoimmune disorder causing your immune system to attack body tissues, has burnt out and gone into remission. For about 25% of patients that may be as early as two years - but for another 50% it is up to 4 to 6 years. And there is nothing you can do to speed that up., however much your doctor or anyone else wants you to stop pred.

Anyone would think we LIKED taking the darn stuff...

[Rose54 in reply to Lucky88]

Sorry

I can only say that it took me 22 months to reduce from 15 to 8 went to low and now back up to 15 .

My GP said reduce 1 a week till back to 10 afraid I told her that she must be joking .

Please do let us know how it goes

Good Luck

[Lucky88 in reply to Rose54]

Thanks & sure thing

[Lucky88 in reply to Rose54]

Well, on the eve of the 3rd day in (down from 10mg to 7.5mg) I now do feel some slight twinges of the old pain in my left palm, opposite the thumb and a more pronounced weakness in wrists. If that is all that it's going to do, I am good with it.

It's worth noting that I have had 3 very busy / active days with insufficient sleep really (no day time rests) and some stressful issues to handle. Tab pattern is : 06:30 Omeprazole 20mg, 07:00 bowl of cereal then Pred 7.5mg, piece of toast then my BP tabs and a calcium (1000 IU) tab. Later in the day, after other food, a cod liver oil tab with either Vit D or Calcium and a probiotic.

In short, so far so good. Fingers crossed and maintain same.

[Rose54 in reply to Lucky88]

Hi

Your doing well

Long may it continue

Rose

[DorsetLady PMRGCAuk volunteer]

Hi Lucky88,

Before you contemplate AA, you need to be sure you actually need it. A DEXA scan will tell you that, unless you know the state of your bones already. Most people find that the VitD& Calcium supplement prescribed (Adcal or such like) plus a good yogurt - not fat free, organic and/or probiotic helps (as well as protecting stomach from Pred) is enough.

If you have a history of osteoporosis in family might be worth considering, but go through the options before saying yes to another med.

I took it no problem for 4 years, but many people don't get on with it!

Sure others will wade in with advice idc.

I won't comment on the reduction planned! You can probably guess, but as I said before, I think, men do seem to get through the whole palaver easier.

Good luck

[Lucky88 in reply to DorsetLady]

Thanks D Lady, my GP did mention doing a scan. This is not a step I will take easily having read the blurb on it.

[piglette in reply to Lucky88]

Dear Lucky88, what is wrong with a Dexascan? It takes a few minutes and will give you the results of your bone density.

[Lucky88 in reply to piglette]

Oops, misread there . . . I mean that the taking of the AA is not a step I would take lightly. No problem with the scan.

[PMRpro Ambassador]

I have been on pred for 8 years - after 7 years on pred, much of it at above 10mg and only taking calcium and vit D there had been only a very small decrease in my bone density. They were very keen I should take AA at the beginning - it would have been totally superfluous to requirements as it has turned out.

Nothing would persuade me to take it without a dexascan result that suggested there was a need. It is advised you should not take it for more than absolute max 5 years - and the latest recommendations are for more like 2 years. I will wait until I see my bone density falling and at a level suggesting it will become a problem.

"I will trust in my Doc who has assessed me specifically" - and exactly how did he assess you will manage a 25% dose reduction without problems? It doesn't come written on our foreheads. More's the pity...

[Lucky88 in reply to PMRpro]

Agree the best is to do the scan up front and assess from there. I certainly do not want to take superfluous steps.

Touch wood, the consultant has been right on the dosage to date (what, 6 weeks in) and despite some trepidation, I will take the next step, ready to snap back if needed.

[Margaret1951 in reply to PMRpro]

I stopped my AA after a year as I read up on them, not made no difference as on calceos from doc anyway.

[Hidden]

"Watch this space" I think many of us will. I was prescribed Alendronic Acid and took it as described. I found that it caused additional back ache and pains in lower abdomen. I tried it on thee consecutive occasions with the same result. I told my Rheumatologist who said I really should be taking it to protect my bones whist on prednisolone. I told him that I had read that a combination of vitamins and minerals in a study conducted my some researchers had found that it gave similar protection without turning the bones to concreate and without all the nasty affects. He was not very happy with me and said it was my choice.

Other people can take the AA without any noticeable side affect, but I felt terrible on it, so I won't take it. Big Pharma think that it is good stuff but I beg to differ in my case. I am sure others will be along to tell you how wonderful it is.

Sorry this was blunt, its only my opinion and I am not a doctor!

Peter

[Patience47 in reply to Hidden]

PeeTee70, I appreciate your honesty. Edward

[Lucky88 in reply to Hidden]

Blunt is good for me . .. . it saves time. All input appreciated and the side effects I read about are potentially awful.

[DorsetLady PMRGCAuk volunteer in reply to Lucky88]

Yes they can be, but that applies to lots of medication - including Pred. As we always say, not everybody gets all, or any side effects, but the Pharmaceutical companies are legally obliged to list every possibility.

You need to weigh up pros and cons for you personally.

[Hidden]

I was prescribed AA last year when diagnosed without scan. I was very sceptical as a drug that you have to stay upright for so it doesn't knacker throat etc seemed bad. Confess my late father who took steroids for lung problems and elder sister who has mastocytosis both prescribed AA(she has had yearly scans). I took 5 times across the 12 months mainly because I saw my father's body shape change from.his illnesses. But each time I had terrible hip and leg pain in left side. I Havent had hip problems before and Havent had such pain since I stopped. I stopped until I have a scan that says I need it after good advice on this group. Osteoporosis is a scary thought but I don't see anything good in the drug so far for me. Scan will tell.

[HeronNS]

I thought the people following this thread might be interested in the conclusions of this article:

ncbi.nlm.nih.gov/pmc/articl...

[Hidden in reply to HeronNS]

Thank you for that. Slowly reading on mobile....might have to start using tablet as my brain can't cope withit all at once. I have it to my sister who is on AA

[Hidden in reply to HeronNS]

Thank you HeronNS, that was an interesting and revealing read

Peter

[Lucky88 in reply to HeronNS]

Woof, a lot of reading there. Interesting stuff.

[BonnyQuine in reply to HeronNS]

Thanks for this. It confirms what I already thought and, in my case, reduces anxiety.

[Caggie60 in reply to HeronNS]

Just joined this site and posted. I found your article very helpful. Thank you

[HeronNS in reply to Caggie60]

If I get a DXA scan this fall (three years) I'll share. Hope things have stayed good!

[SheffieldJane]

Yes do share what you learn about the dreaded AA, it's stalking me too and every bit of me says NO! Even more than steroids in the beginning.

[Lucky88 in reply to SheffieldJane]

OK Jane, will do

[Pam47]

Hi everyone,

I've been on AA for 5 months now. I too dislike the idea of taking any drugs unless absolutely necessary, and this one is a scary one! I asked my GP if I could have a bone scan to see if I needed the AA, but she said that the scan would not be helpful- the AA prevents bone thinning so the scan would show that all is well. Have others had a scan?

[Marcy47 in reply to Pam47]

Hi Pam47,

I was put on AA when I got PMR in Sept 2015, I was not offered a bone scan at the time. After reading about the dangers of leg fractures on AA , about a year later, I managed to get a Dexascan and was told I had Osteopenia and should stay on the AA. I have been getting pain and weakness in the left hip and thigh since last Nov when I went back on it (coincidence?) . I have upped my dose of Pred recently to 10mg which has helped with the pain, but am thinking of stopping the AA for a while to see if that has been causing it.

I think you should insist on having a bone scan, you don't want to be taking AA if you don't need it.

[Lucky88 in reply to Marcy47]

Right on Pam.

[PMRpro Ambassador in reply to Pam47]

It is recommended a scan be done within the first 3 months of pred - and I doubt that a mere 5 months of AA would have changed things drastically.

I have osteopenia - but very slight. It is the degree that is significant, not the word.

[Lucky88 in reply to PMRpro]

I have now read / discussed AA quite extensively and have decided to avoid it like the plague, whatever. In the meantime trying to get a scan done as a benchmark so as to keep an eye on bones in future.

I have now been told (for the first time) that a recent blood test gave ESR of 16 and CRP of 32. When I can manage to get an appointment with my GP I will ask him the significance of these levels. Do most PMR sufferers track these for themselves?

[piglette in reply to Lucky88]

Dear Lucky88, I have regular blood tests and always ask for a printout of my results from reception. The printout also shows the doctor's comments. The surgery are now offering the facility to look up basic patient records on line, which will make life easier. It draws graphs of ESR etc over time even! Being a bit of a nerd I have complex spreadsheets of my results.

[Lucky88 in reply to piglette]

Thanks. I am also big on using graphs to track data. A clingon from corporate days running businesses.

[PMRpro Ambassador in reply to Lucky88]

You also need to know your lab's normal range for the ESR and CRP. The ESR reading you quote is technically "within normal range" - but if your personal normal is 4 it is raised. Serial readings should be maintained or fall - if they rise, it is a sign there may be something going on. But they are very non-specific, others things cause them to rise besides PMR/GCA.

[Lucky88 in reply to PMRpro]

Thanks. As I have had tests aplenty these last months, I will squeeze my GP for back readings and go from there.

[PMRpro Ambassador in reply to Lucky88]

Sounds like a plan!

[Gillymar]

Please talk seriously with your GP. AA (bisphonate) taken weekly for 6 years by me caused fractures in both femurs. It is now known that this is par for the course. My records show "bisphonate related" for the fractures and it has now been known that AA must not be prescribed for more than 3 years. I have had osteoporosis for many years now and also have a fractured vertebrae which is painful. Let us know how you get on lucky88

[Lucky88 in reply to Gillymar]

Will do

[Pam47]

Many thanks.

[Dimplevegus]

I would agree with gettin a full review of the DEXA scan. I broke my wrist, just your normal fall. I am on prednisolone 10mg and they wanted me on the bisphonates. I asked to see a professor in bone metabolism he said the bones are what you would expect in a female my age. So I don't actually need anything except surveillance of the bone density.