GP has now confirmed PMR after blood test results last week and has prescribed EvaCal tablets and Alendronic Acid in addition to Lansoprazole and Prednisolone I am already on. Am now to taper Pred from 15mg to 12.5mg in next 4 weeks, then to 10mg in following 4 weeks, with blood tests at end prior to next review (I'm following DorsetL slow tapering plan; only started today as prescription wasn't ready till yesterday). Two questions:
I've not started to take the Alendronic Acid (not available at pharmacy yet) but have questions about whether to take this unless absolutely necessary due to side effects and some of the posts I've read here. Should I request review of this and ask for DEXA scan?
I'm a bit confused about when to take the various tablets (below includes notes from the recent GP phone consultation)- does this seem a sensible plan?
1. c.7am Alendronic Acid (if I decide to take this) with 200ml water/stay sitting up for 1/2 hour
2. c. 7.30am Lansoprazole 15mg x 2 tablets without food, then wait 30-60 minutes to eat anything
3. c. 8/8.30am Pred with breakfast
4. c .11.30am/12 EvaCal D3 1500mg/400u x 1 tablet (?3 hours after Pred) - no food necessary
5. Vitamin K2 Mk7 and Vitamin D3 - at same time as EvaCal (or better wait till lunchtime or later?)
Thanks!
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Preposterous
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Alendronic acid is only taken once a week - not daily. Unless you have been given risendronate with can be a daily form. However, a daily form is totally unnecessary, once a week is bad enough to mess about with if you ask me!
You can take calcium, vit D and K2 all at the same time - we used to say pred for breakfast, one calcium etc for lunch and the other calcium for dinner as you shouldn't take more than 500mg calcium at a time as more than that isn't absorbed and jsut passed out of the body unused.
My personal mantra is "No dexascan, no AA". And don't start taking it until after you have had a dental checkup, preferably with a panoramic x-ray, to identify any potential problems that might need invasive dental work done in the foreseeable future. They should be fully dealt with before starting AA and you should also have a thorough dental hygienist scale and polish before taking it.
SInce you SAID alendronic acid, it should be weekly, it is the only option. I think DorsetLady said she took her tablet and then sat and looked at the forum for the waiting time.
My dentist did the x-ray - shows up the potential hidden problems, just poking around in your mouth isn't really enough. You should also discuss with the dentist what THEIR views are on treating patients on bisphosphonates - some dentists are very reluctant to do anything and forewarned is forearmed.
A standard checkup might not be enough and you need more of an in depth check. Dental treatments more than a small filling can be more complicated and risky once on AA. One of a few personal reasons I didn’t take it is that I have a big dental intervention down the line and it’s a case of when not if. My dentist was relieved I wasn’t on it. This isn’t a reason not to take it but one’s personal risk assessment may not chime with the general one size fits all gold standard. Therefore, you need to really look into all the risks and apply your own factors. I used the FRAX tool and put in my DEXA scan results along with the other variables and the result backed up my argument. I lost 3% density after 3.5 years of Pred starting on 60mg Pred. Everyone is different.
In that case it is daily….and as PMRpro that’s makes it a bit of a faff… once a week much easier.. unless of course you have an existing gastrointestinal issue and the GP thinks it’s easier on that. ..and more expensive for a pack of 28 compared to a pack of 4…
I’m not aware of any gastric issues and until now have avoided medication unless strictly necessary- probably only taken antibiotics 7or 8 times in my lifetime! Have been very lucky with health up till now but I’m at that age I guess! So all this is a bit of a shock to the system.
I just want to draw attention to one thing in case it gets overlooked amongst all the other excellent advice and info already mentioned. Make sure you ask for and get a DEXA scan before starting AA. You may not need it and you need to know.
I took two doses of AA and hadn't seen the warnings and stopped simply because I couldn't swallow the "devils" ! They were an oval shape and flat and they would get stuck in my throat and I know how dangerous it it is to get a tablet stuck in the throat, Almost as if I was being warned not to take them and then I read on here the amazing HealthUnlocked the warnings .I have also been asked to take Denosumab (Prolia) and poster Piglette advised me to have a Dexa Scan first and I remembered I had one two years ago which was good ( Thanks again Piglette for jogging my memory ) After all my bad experiences recently with medications I am now very wary of all new medications and just yesterday I was given the wrong ointment for and itchy sore eye lid even though I explained very carefully to my doctor, and I got something for Acute bacterial conjunctivitis !
Thank you - it's so useful to get this advice from the horse's mouth (as it were!!). I still haven't picked up my AA prescription so don't know the size of these beasts yet - but I am definitely not going to take them until I've had a Dexa scan, which I'll ask for at my next GP review. Hope your eye gets better, and you get the right ointment for it!
Hi, I take all of the tablets you mention plus others but I no longer take Alendronic acid. I take my tablets in the regime that PMRpro has recommended to you.
When diagnosed with PMR I asked for a DEXA scan on the NHS but was refused (not their policy to do it!) I was told that I must take Alendronic acid weekly and did so for 1.5 years but it played havoc with my gut so my Rheumatologist changed it to once a fortnight. I was fed up with the side effects and worried about any future dental treatment I may require. In March 22 I decided to pay for a private DEXA scan called REMS. The results were ok and on the advice of the consultant who did the scan I stopped the Alendronic acid. I’m now paying for a scan each March to keep track of my bone health. It has worsened over the past two years and I’ve been told at my last scan that the next 12 months are critical and I must try and increase my weight bearing exercise. I’ve got Osteopenia verging on Osteoarthritis. If you can hopefully get a DEXA scan then at least you will be aware of your bone health and make an informed decision about the Alendronic acid. Good luck 🌸
Hi Tiggy70. "I’ve got Osteopenia verging on "Osteoarthritis." I guess that's a typo for Osteoporosis. Not sure why some doctors state it's not NHS policy to have a DEXA scan. It's never been a problem at my surgery and I get them every two years.
Hi, yes sorry I should have typed Osteoporosis. I was about 3 months into my PMR when I found out about DEXA scans from this forum. I asked my Rheumatologist and was told “you have been on steroids for a while and it will skew the result. You can only have a scan when you are off steroids.” They would not budge on this hence my going privately for scans. I think getting one is very much a postcode lottery in the UK. I live in Northampton. 🌸
I think your Rheumy is a tad confused. The NHS guidance is as below
When a bone density scan is recommendedA DEXA scan may be recommended if you have an increased risk of developing a bone problem like osteoporosis.
Your risk is increased if you:
have had a broken bone after a minor fall or injury
have a health condition, such as arthritis, that can lead to low bone density
have been taking medicines called oral glucocorticoids for 3 months or more – glucocorticoids are used to treat inflammation, but can also cause weakened bones
are a woman who has had an early menopause, or you had your ovaries removed at a young age (before 45) and have not had hormone replacement therapy (HRT)
are a postmenopausal woman and you smoke or drink heavily, have a family history of hip fractures, or a body mass index (BMI) of less than 21
are a woman and have large gaps between periods (more than a year)
Thanks Bcol for the info. I should have researched it myself when I was first diagnosed. At that point I was a bit bewildered by everything and did exactly as I was told. After 4 years with PMR and the invaluable advice and info. gleaned from this forum I am much better informed and able to stand up for myself a bit more. Maybe next year armed with this information I can persuade them to give me a DEXA on the NHS!
*At that point I was a bit bewildered by everything and did exactly as I was told*I think that sentiment probably sums up all of us when we were first diagnosed with something that we had never heard of. Without the help, practical knowledge, experience and and expertise of the members of this forum I think many/most of us would be continuing to struggle with the vagueries of these diseases.
like you I like to space out the various pills, but a while back I had a med review with a pharmacist linked to the surgery who said the only one to take then wait half an hour was levothyroxine.
Incidentally, were you prescribed K2? I’ve spoken to several doctors and they say they don’t have training in alternative medicine.
No- I bought Vit K2 Mk7 myself on recommendation of this wonderful forum. What was prescribed was EvaCal which has instruction leaflet saying not to take it at same time as other tablets.
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