Flare? Or has biologic stopped working?

[Gilliancheche]

I am on COSENTYX and MTX and had been doing ok. The consultant said I needed to start Alendronic acid as my bone density borderline. Within a few weeks my arthritis symptoms started to flare. I had a depo injection, but little or no effect. I have been taking celecoxib which wasn't doing enough so now doubled the dosage, but still struggle sone days. I am so depressed and tearful now as well as in pain. I also have melanoma so cannot use anti TNF biologics. What happens now ?

[AgedCrone]

Discuss with your consultant the likelihood that the Alendronic Acid is causing your flare. There are other. Biophosphonates you can try for Osteoporosis.

I take AA, & at first decided it was making me nauseous…but it turned out not to be the culprit (nausea was caused by opiate pain patches);

I have been taking it for three years now with no side effects.

It’s always worth asking..because you don’t want fractures. I fell & fractured two vertebrae & they don’t heal fast….if ever.

[Artfanatic]

Be careful about Allendronic or Ibandronic acid as it has been proven to have the opposite effect on 15% of women making their bones brittle & I'm one of them! I have a broken thigh & ankle to prove it! Just question the need to take it. I don't know if they can check if you would react adversely to it yet. Hope youre pain & depression improves. Were all thinking of you.

[MJSlide1958 in reply to Artfanatic]

Hi Artfanatic, I am trying to get a clinic appointment as I too have osteoporosis. I know that I will be put on some type of meds for osteo problem, but I have a very weak stomach and feel the med will upset stomach more. I don't know what to take? Any ideas where I can get more knowledge of meds available? My GP surgery is so bad and so behind with everything for patients unfortunately. At the moment I think GP are concentrating on cancer patients. Grateful for any advice please?

[Artfanatic in reply to MJSlide1958]

I actually don't have Osteoporosis but do have Rheumatoid Arthritis & Osteoarthritis. My last bone density xray was ok so hoping that continues! The Allendronic acid was identified as the culprit for my broken bones.But I'm only taking 2x Calcichew tablets a day now so I'm hoping that will be enough. Its interesting to hear what other people are on. I'm sure a chat with you're Pharmacist would be informative as to what alternatives are available? But of course the cost of the meds & what they can supply due to that will be factored in! Sorry I can't help you further on that. But I will be interested to see if anyone else has an answer. I'm 70 next year so a bit worried about Osteoporosis as I was on Steroids for my RA for 20+ years & after that trying everything else for RA & ending up on Abatacept biologic injections+Methotrexate. I am worried that the Calcichew isnt enough to protect me from Osteoporosis & further breaks!? Good luck anyway, hope you find a solution, let us know if you do.

[MJSlide1958 in reply to Artfanatic]

thanks, yes I have read a long time ago that these meds can cause fracture and breakage to bones! this does seem pretty strange that the effects are going against what the med is supposed to do??

[Gilliancheche in reply to MJSlide1958]

Exactly I have read the same. Am hoping to discuss face to face with consultant as I am due and appointment soon. Am more upset about pain with symptoms at the moment and I also take Thei Cal D3 🤞

[Artfanatic in reply to MJSlide1958]

Well I've been told that Nice now say you can take either Alendronic or Ibandronic acid for 2-3 yrs then must have a 2yr break! What amazes me is that I was left on them for 20 odd years with no check up. Now they realise the side effects. But why isnt this more widely known & do they warn you when starting you on them of the 15% it will work completely in reverse for & cause you're bones to be brittle & break easily?? Why hasnt this been made more public & highlighted- I'm flabbergasted this still seems to be a secret????

[Gilliancheche in reply to Artfanatic]

I suppose these things come after people have used for years. My consultant had said she was putting me on it for 2 years then another scan to see what was happening.

[JGBH in reply to Gilliancheche]

Incidentally, has your consultant informed you that once they stop you from using such drugs you will need to take another similar type of drug in order to prevent any improvement in your bones density/mass you might have gain from the former treatment to deteriorate and return to Square one, risking bone fractures? Once one takes these drugs (some still rather experimental, although « approved «  for treatment) one has to take them for life! Unfortunately it appears there are no drugs yet that actually rebuild bones whereby the bones remain strong post treatment. Quite a dilemma. If only a decent drug that doesn’t create more problems further down the line could be discovered.

[MJSlide1958 in reply to Artfanatic]

You should be entitled to compensation, 20 years is no joke!

[Artfanatic in reply to MJSlide1958]

Well I've not heard of anyone getting compensation for long term prescribing? I don't think NICE were in existence when I was put on it. I was 34 when 1st got RA in 1988 so things were a lot different then!!?? I will be 70 next year so had it for many years & tried practically all medications in my time! I now have Osteoarthritis in my knees & hips & theres no treatment as such apart from gels & painkillers. I'm scheduled for a knee replacement in 6mths time hopefully! Not looking forward to it but want to be able to walk again without sticks!! I may mention the longevity of my prescription for AA when I see my RA Consultant next!?

[MJSlide1958 in reply to Artfanatic]

Good luck, I wish success for you.

[Artfanatic in reply to MJSlide1958]

Thank you MJSlide1958.🥰

[MJSlide1958 in reply to Artfanatic]

Please let us all know how you get on. Good luck

[Artfanatic in reply to MJSlide1958]

I will thank you.

[AgedCrone in reply to Artfanatic]

It apparently only came to be realised that AA should not be taken “forever” as it used to be prescribed, when so many patients, mostly women, were admitted to A&E departments after a fall with a fractured femur.

A&E Orthopaedic surgeons started to ask each of these patients if they were taking either Biophosphonates or AA by name ..I can’t remember the exact wording. But that was how it was realised it was not the wonder-ever-after drug it was thought to be…..when they realised they were seeing these results so frequently.

I started taking it in 2020 & on my prescription it says “Prescribed by .Dr X…to be discontinued Month 2025”

I have had 2 Dexa scans since I started taking it….& they do show a little improvement, but at my age it won’t work miracles.

[Artfanatic in reply to AgedCrone]

Yes I was approached after my broken thigh & told it was most probably the AA that was the culprit because my fall wasnt catastrophic or bad enough to break my thigh. In 2019 I got out of shower & leant on my wash basket (stupidly) & the lid fell in so my left arm went down into it up to my armpit & I had my right hand on my right thigh which resulted in me pushing it to the left as I fell. I heard the crack but couldn't believe I'd broken it just by that move? But it was obviously the AA. I wonder now if my broken ankle in 2000 (broken in 3 places & dislocated) was a result of the AA but wasnt identified at the time unfortunately. If it had been it may have saved me the broken thigh!!??

[AgedCrone in reply to Artfanatic]

For how long did you take Alendronic Acid?

Now it is only prescribed for 5yrs, because as you say taking it for longer has proved to have undesirable effects.

[Gilliancheche in reply to AgedCrone]

I only took for 3 weeks before I started the reaction of flare or whatever is causing me so much pain at the moment

[AgedCrone in reply to Gilliancheche]

So it seems unlikely that only three tablets would be the cause of your pain doesn’t it?

Ask your doctor for a blood test to check your inflammation levels. They can be checked against your last results to see how they compare.

[Grumpyoldmare]

One of the side effects of Alendronic acid can be joint and muscle pain, so may not be a flare.

[Gilliancheche in reply to Grumpyoldmare]

We decided to stop the Alendronic but flare has continued 😥

[wilbertjellyfish]

Speak to your GP. It could be alandronic and there are others I'm on risendronic. Also it's a longer term thing so a stopping it here and there may not have adverse affect. It would be good to know.It's normal enough to feel down when your so sore but if it started after a new meds I'd definitely stop it and see.

[Bails67]

I don’t take anything for my bone density as the treatment was giving me heart burn. I have had 2/3 density scans and mine hasn’t got any worse. I was just given diet advice. I have osteopenia/osteoporosis.

[MJSlide1958 in reply to Bails67]

That is good. Who sent you a diet? I would like to get a diet sheet too. Any tips please?

[Bails67 in reply to Bails67]

My rheumatologist just told me to eat plenty of dairy full cream milk etc but I have read on line that it makes no difference🤷‍♀️I only know mine hasn’t got any worse. I am also taking HRT.

[Doodlereggie]

I could not take alendronic acid as felt sick.Had 2 years of infusion in Barnet hospital but day after both times had such severe neck pain that could not lift head off pillow next morning.Am now having Prolia injections every 6 months at g.p.surgery with no side effects.Had second one yesterday in fact,but no reaction at all.Been on steroids for over 20 years,am nearly 80 and have osteoporosis,so essential to protect my bones.Have only been in hospital twice,once to give birth,and once for knee replacement 6 years ago,and do not want to repeat the experience!!

Good luck.

[Klc2ict]

I have been on two Consentyx injections per month for about a 1 1/2. My blood test have dramatically improved. I still have a low white blood count but it has improved. My inflammation has improved. I still have flare ups but use a small dosage of prednisone for those. I can’t tolerate oral arthritis medications due to severe upset stomachs. I am happy with the injections so far.