Osteoporosis treatment: I have had RA for 38 years and... - NRAS

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Osteoporosis treatment

Evie3
Evie3

I have had RA for 38 years and taken steroids when necessary throughout this time. Had 3-yearly Dexascans, the last one showing I had Osteopenia. My stomach will not tolerate Alendronic acid or similar. I take Adcal but realise with 3/4” height loss I need to be on something that will increase bone density.

My question therefore is has anyone else been in a similar position and what medication are you on for this and any side effects? Thank you

35 Replies

I think this is best asked of your doctor as I have Kidney Disease and Alendronic Acid is not licensed for kidney patients it might be the same for other conditions which makes it such an individual thing. I also take Ad Cal D3 and its worry as my mum had Oestoporosis which was dreadful.

Evie3
Evie3 in reply to medway-lady

Thats what I will have to do,. Just hope she is sympathetic to my intolerances.

My Mum had osteoporisis too.......there were no medications available in her day

Thank you and take care

medway-lady
medway-lady in reply to Evie3

My mum had infusions of something but I can't remember what now. Someone else may well know but it really didn't do much as she had morphine patches and several spinal fractures. Her spine was cemented but she did still have problems and of course the broken bones. So far I'm ok my forecast for a break is very low and the only time I have broken a bone I fell over and down a steep slope onto my elbow. I had a DEXA because of the Kidney problems but my bones are reassuring good. I avoid steroids because of risk to my bones and hope your doctor does help. To me as it is a real worry and RA is no problem compared to Osteoporosis.

Evie3
Evie3 in reply to medway-lady

For my RA I have 6 monthly Rituximab infusions, without these I would b in agony and in a wheelchair. Now that is sorted I really need to address the osteoporosis. I have had a lot of steroids via infusions this year. Sometimes u just have no choice. 😞

medway-lady
medway-lady in reply to Evie3

So true, my mum had real pain far more then I'd ever want to have. I actually cried with relief when they told me I had RA many years ago ( at least 20, ) as it wasn't Osteoporosis. I'm lucky as been ''kept an eye on'' because kidney failure can damage the bones so was really pleased to have a good Dexa result. So must be doing something right or maybe finally some good luck. I do despite the RA and CKD try my best to stay mobile and active and healthy. But at the end of the day my mum was much healthier than me and very fit but as you say the medications were not that good really so it was an ever progressive downward spiral.

Evie3
Evie3 in reply to medway-lady

You learn things as you go along this journey.....I was told recently after an echocardiogram that RA can attack all organs....the gift that keeps on giving 😳.

Evie3
Evie3 in reply to medway-lady

Thank goodness your bone density is good. Unfortunately over the years for pain relief I have had to take whatever is suggested. Now my RA is under control I MUST get help re bones. Take care

Hiya Evie. I've had RD & OA 12 years. I'm osteopenic/borderline osteoporotic & have 2 yearly DEXA scans. As well as my other meds I'm on long term dose corticosteroids & I’m postmenopausal. I've tried alendronic acid & risedronic acid, I couldn't tolerate either tablet. I was seeing my GP for another reason but she saw how ill I was & asked if it was my bisphosphonate. She contacted my Rheumy & requested she arranged for me to have an infusion version. My Rheumy wasn't happy doing this as she thought I’d react similarly to how I had to the tablets, she wrote in her report that it was her considered opinion I would have an acute reaction. What we decided to try was increasing my daily Adcal-D3 1500mg/400iu to twice a day, from which I have no side effects, & include more regular dairy in my diet. It seems to have helped. At my last scan my FRAX 10 year fracture probability percentage was lower & my BMD had improved on the previous one, so it seems to be working for me but then next scan, due next year, will be interesting.

I don't know if this is any help to you?

Evie3
Evie3 in reply to nomoreheels

Thanks for that......very helpful. I am sure I will b the same. If I had the choice I would go back on to HRT which u doubtedly increased my bone density with no immediate side effects.......but ‘they’ wont let you at my age😟.

Will ring the Doctor next week. Take care

Speak to your rheumatologist ...there are biophosphonates you can take by infusion that may suit you,

Evie3
Evie3 in reply to AgedCrone

Yes I saw those........worry about intolerance, although the blurb says they bypass stomach. Thanks

AgedCrone
AgedCrone in reply to Evie3

They are the same procedure as Rituximab...I think your only have them annually...I wa going to have them, but luckily I swallow Alendronic Acid like Smarties.

Evie3
Evie3 in reply to AgedCrone

Strong stomach! Ha ha

Thanks

Hello. I have had RD for 46 years and in 2008 was diagnosed with Osteopenia following a fractured tibia. I was recovering from a left ankle fusion when I had the fracture of my right tibia. Struggled but persevered with Alendronic Acid for 4 years and bone density scans returned to within normal limits for my age. Lost a couple of inches in height but scans continue to be OK. Wish you the best of luck with your treatment and be assured the condition can be treated successfully with medication and good diet. Biphosphonates are effective and I wish I had been offered the infusion option. Take care.

Pam

Evie3
Evie3 in reply to Pam-51

Really pleased to hear your bone density has recovered. I must contact Dr next week, mustnt delay as Covid might get in the way. Thanku

I have had low bone density for years due to very early menopause and years of hormone treatement, e.g. medically induced menopause. Funnily enough, I recieved no treatment for the bone densitiy loss until this year. I have been on steroids for over 6 months. I tolerate the alendronic acid but like another contributor I take Adcal twice a day and a PPI to support the tummy. If I didn't I would be in a pickle as I can very easily get strong upper abdominal pain by just eating something acidic like an orange. I also try and do some weight bearing exercise - very gentle ballet which also strengthens my muscles like no other exercise, it literally gets every muscle working even if you are just moving your arms, if you stand correctly the only muscle not working is your tongue!!! (What an image!) . All hoping it helps a little. x

Evie3
Evie3 in reply to RosieA

Interesting. Thank you

I have osteoporosis too. Actually diagnosed before RD but fortunately can tolerate Alendronic Acid. I take Adcal twice daily and also omeprazole to protect my tummy on Alendronic acid day. There is something called Prolia but based on what I have read I would not be keen because once you are on it you can't come off. It is scary and I would be in a quandary too. A discussion about the pros and cons with the doctor is my only advice.

Evie3
Evie3 in reply to Biofreak

Thank you. I do take Esomeprazole but Alendronic really played havoc with my stomach. Going to research infusions

Hi, I can't tolerate Alendronic acid but I go to the BRI once a year for an infusion of zolendronic been doing this the last three years no problems. Make sure you are well hydrated before you go, they put a canula in you it takes about 15 mins and off you go. Not had any problems with it due, this month for my next one it does the trick.

Evie3
Evie3 in reply to Egpa

Thanku...will google that

For the last two years I’ve had a once yearly zolendronic acid infusion without any side effects as the tablets disagree with me. It’s very quick and straightforward but I think the the secret is to be very well hydrated. I start drinking lots of water 2 days before, on the day & the following day! Hope this would work for you.

Evie3
Evie3 in reply to Artfan

Thanku......at least when i speak to GP i will b informed thanks to you guys

Ask your Rheumatologist for an infusion of Zolendronic acid. I have had one every 12 months for the last 3 years. Simple 30 minute procedure, better that Alendronic acid as straight into the vein.

Hello, I have had rheumatoid for 30+ years. I was diagnosed with osteoporosis late last year and prescribed alendronic acid. Unfortunately I have a problem with my stomach and have a hiatus hernia, also my brother was treated for oesophageal cancer about 2 years ago so I didn’t want to take it. I asked my GP, I was referred to a specialist in osteoporosis but due to COVID haven’t been seen yet. I do have an appointment next Friday to discuss what can be given so there must be other things out there. Sadly right now I can’t tell you what but it’s worth discussing with your GP, hopefully they can then give you an alternative.

Evie3
Evie3 in reply to dippyd09

Yes....I have a hiatus hernia, amongst other probs.

Be interesting to hear what they decide to put u on.

dippyd09
dippyd09 in reply to Evie3

I had my telephone appointment today. The doctor has decided to give me a once a year infusion of Zoledronic acid given once a year. As with any drug it may have side effects but the problems with my oesophagus are being addressed. I do have to get checked by a hospital dentist before starting this treatment but that’s fine, I saw my own dentist a couple of weeks ago. I feel much happier to try this. I do think there are other treatments available so I would discuss this with your GP or Rheumatologist. I really hope you can get some help. Take care.

Evie3
Evie3 in reply to dippyd09

I put off phoning doc this week...such a coward. I MUST next week.

Pleased you feel ok about trying it. Think the other drugs out there will attack my stomach, but will review the options. Take care

Will let you know what and if anything is decided.

Hi Evie

Snap - I've had RA (JIA) for 38 years too! (Since I was 14) 1982 must have been a vintage year for it! 😳

I have been in your position and tried other treatments. First off, 20 years ago I started ADCAL. Once a day initially but increased to 2 a day in 2007 following a small pelvis fracture. (Still take this now). That wasn't doing enough so in about 2009 they added Risedronate/Actonell. Stuck it for about 4 years, but couldn't stand the tummy upsets any longer. Next I tried Prolia/Denosumab injections - one every 6 months. Stuck those for about 4/5 years too. First couple were ok, but after that I started having side effects. About 48 hours after injection I started to feel generally ill for a week or so, and also got increased bone/joint pain. The pain increase seemed to last longer after each injection to the point it only stopped about 3/4 weeks before next injection due. Eventually I asked to stop it.

My consultant wanted me to go Zolendrate infusions next, but I wanted a break. That's where I am now. My density has decreased a bit, and I'm waiting for an up-to-date dexa scan. I suspect I'll have to start the infusions then. I hope I get on better with them.

I've been on steroids constantly for 27 years so that hasn't helped. Also, my right ankle became very deformed over time. Due the bone weakness this meant I had 7 stress fractures in my ankle and tibia between 2009 and 2018 when it was finally fused. I spent a lot of time in and out of plaster casts!

Unfortunately, as always with this disease, there are no easy answers. We are always having to weigh up difficult decisions. As you can imagine, fractures are painful and unpleasant and I carried on having them despite treatment, but this was in part due to the deformity. Despite everything, I would probably advise you to try whatever is suggested, as you may not get any unmanageable side effects. Also, you do want to avoid fractures at all costs. Although I would prefer not to have the Zolendrate infusions, if it is recommended to me again, now I've had a break from the Prolia, I would take their advice and try it.

I do hope this helps! Best of luck with whatever you decide. 🤞x

Evie3
Evie3 in reply to Kags1068

Oh poor you.....I was diagnosed at age 30 .....I do feel sorry for you suffering so young. I had Didronel at first, then HRT which showed to increase the bone density but they wont let u stay on that over 60. Had Adcal during that time till present day. Think my only option will b the infusion. My stomach cant take the tabs.

Hope your journey is easier. 🤞🤞

Kags1068
Kags1068 in reply to Evie3

Aah, thanks for your kind reply. Didn't know you could only stay on HRT until 60. I'm going through dreaded Menopause now, so that's another reason I'm expecting to have to go back on treatment too.

Yes, those tablets really play havoc with the tummy don't they? My tummy is reasonably hardy, but I couldn't stand that one any longer! Sounds like the infusions probably would be the best option for you then - only once a year I think too. As I said, I will try it if it's advised again. Let's hope that does the trick for us!

BTW, I don't imagine being diagnosed at 30 was much fun either!😳

Take care x

Evie3
Evie3 in reply to Kags1068

Just hope I can have that infusion alongside Rituximab....will pluck up courage and ring surgery this week, cant keep putting it off.

Wasnt too bad in early days as just took steroids. Thank goodness I had my children when I was young.

Take care ......another lockdown without the sunshine this time 🤨

Kags1068
Kags1068 in reply to Evie3

I hope you can get everything arranged to suit you. I understand you putting off contacting the docs to try and sort it out, such a hassle isn't it?

I'll just wait and see if I get an appt for a DEXA scan. I imagine it will be a while.

I expect I'll muddle through lockdown again - as I'm sure will most others! I keep reminding myself that I've been stuck in the house following operations many times and at least if it's not post-op I can get to the loo etc without any problems!!😁😁

Hope you get through the lockdown OK too! Take care x

Yes we are used to it now! Might have to get the jigsaw puzzle out! Lol

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