Aclasta Infusion: It's me again! Having been... - PMRGCAuk

PMRGCAuk

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Aclasta Infusion

Lin-lou
Lin-lou

It's me again! Having been diagnosed with PMR at the end of 2014, my Rheumatologist prescribed an Aclasta infusion (bone protection) a year ago. The reaction I had to it was horrendous and lasted two days, far worse than the "flu-like" symptoms that had been mentioned. Now, as this is an annual thing, I believe, so due again soon, what I would like to know is, has anyone else experienced these infusions and do the reactions become less after the first one? Thank you.

18 Replies
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PMRpro
PMRproAmbassador

Do you really need it? I assume you had a dexascan done then?

Lin-lou
Lin-lou in reply to PMRpro

Thanks and sorry to be asking yet another question so soon after joining here! Yes, I think it was a Dexascan, ie measuring bone density, and the result was some wearing but not osteoporosis as far as I remember.

Lin-lou
Lin-lou in reply to Lin-lou

PMRpro P.S. to my reply. I haven't had a date for one this year as yet, but was told last year that it had to be done annually to give bone protection. My GP has written to Rheumatologist to ask if necessary again so I am trying to get the pros and cons now before a date might be sent to me soon!

PMRpro
PMRproAmbassador in reply to Lin-lou

If your bone density was OK (need the t-scores) there is an argument to say it isn't necessary. There are ways of improving bone density without more than calcium and vit D - and by no means everyone develops loss of bone density as a result of taking pred. Mine had only changed marginally in over 7 years so the alendronic acid I was handed automatically at the beginning was superfluous to requirements. I took 4 tablets, hated it, did my research and discussed it with a different GP - who agreed with me it was perhaps an idea to leave it until I needed it. After 8 years on pred I haven't got there yet...

Lin-lou
Lin-lou in reply to PMRpro

Aclasta infusion

Thank you once again, PMRpro! I'm hoping the answer from my Rheumy will be that I don't need another infusion as I don't think I could deal with the aftermath on top of other things going on in my life (besides PMR and being a full time carer for my elderly husband who has Alzheimer's and other health issues!) I won't just simply accept it anyway, not without some discussion!

I notice that you have helped a number of people on this website. May I ask if you are a health professional, if that's not being too personal? Your comments and advice seem to be based on genuine knowledge and I, for one, am grateful for your replies and for the time taken to reply, too.

PMRpro
PMRproAmbassador in reply to Lin-lou

I worked in the NHS as a technologist, labs and research, for a long time and in the middle did a physiology degree. The rest of my time for the last 30-odd years I translated, specialising in medical, pharmaceutical and scientific stuff. You have to have a very broad medical background to do it well. Then, over 8 years ago, I finally got a label and pred for the symptoms I'd had for 5 years - I spent a lot of time on the internet to find my own diagnosis. Doing that took me to the patient.info PMRGCA forum where I met some of the founding members of the PMRGCAUK charity who were just setting up the first English charity in the NE. There was already one in Scotland. Since then I've actively participated in the work the NE PMRGCA charity do as well as being a patient research partner with a research group in Leeds. I've read anything and everything I can access online about PMR and GCA as well as writing about it.

Lin-lou
Lin-lou in reply to PMRpro

Wow! What an amazing 'history' you have and thank you for sharing that. It sounds as if you have devoted so much of your time into research as well as successfuly carrying on a highly qualified career course! I think we are all very lucky indeed to have benefited from all the knowledge you have gained on the subject of PMR and GCA, no easy task, I'm sure, with so little information out there, particularly when you first started your researching! A heartfelt thank you again.

Hidden
Hidden in reply to PMRpro

Hi PMRpro, I would suggest, judging by my experience that your knowledge is better than any doctor I have consulted on the subject of PMR/GCA. :-( :-) and I don't think that it's just that I am unlucky.

Currently on 6mg/pd so far so good, still playing 'chase the dragon' but obviously DSNS with pred. :-( :-)

PMRpro
PMRproAmbassador in reply to Hidden

I know a couple of rheumies with encyclopaedic knowledge of the theory and the medical stuff. But even they admit they learn from me about the patients' side. But we've had it - they haven't.

Hidden
Hidden in reply to PMRpro

Too true :-)

SheffieldJane
SheffieldJane in reply to PMRpro

I am grateful daily for your input PMRpro. Especially as you still have the damn thing and you're still helping people to have a better relationship with this condition and the drugs we have to take. Thank you, you've taught me a great deal.

If you do not have osteoporosis, and some would argue even if you do, but your measurements are not dire, and particularly if you have never had a so-called "fragility" fracture, then it is not recommended that you have bone medication. Far better to make sure your diet, supplements and exercise contribute to bone health. Many of us are recommended this medication but probably very few of us actually need it, and few really benefit. Given your history with the infusion, would you seriously consider not having one this year and investigate other strategies to help your bones?

Lin-lou
Lin-lou in reply to HeronNS

Thanks HeronNS. That sounds like good advice. I wondered why it was thought necessary last year as bone results ok and no sign of osteoporosis. It may not be relevant but some months ago I had a really bad fall on the pavement with no broken bones resulting from it! If it is suggested again this year I will certainly ask questions!

PMRpro
PMRproAmbassador in reply to Lin-lou

Because many doctors think it is inevitable that patients lose bone density when on pred and they have been brain-washed to believe prevention is better than cure. It is now beginning to be seen that after at most 5 years of bisphosphonate treatment the bone formed is different and more prone to fracture.

I'd rather keep it on hold until I am shown I am losing bone density as a result of pred and it is going towards the red zone (which is actually purely arbitrary). And I can't find any explanation as to why pred is regarded as so awful when PPIs are used long term (which they shouldn't be) and cause similar bone density loss - but they don't hand out the PPI and the bisphosphonate together unless pred is involved.

Lin-lou
Lin-lou in reply to PMRpro

PMRpro You are such a mine of information! Wonderful reading your obviously very knowledgable posts. Thank you again!

Hi Lin-lou, sorry that you've experienced such a bad reaction to the Aclasta infusion. After a dexa scan about 4 years ago, I was diagnosed with osteoporosis. Since then I have had the Aclasta infusion annually. So when a few months ago I was told that I also have PMR my rheumatologist was happy enough that I was already on Aclasta. My reaction to the infusion had been quite different on each occasion. It has ranged from : first time, feeling washed out and a bit nauseous. Second time, not so bad just a bit tired. Third time, I felt fine. Fourth time, mild flu-like symptoms. Each time the reaction lasted for 2-3 days. No doubt everyone has a different experience. I'm not convinced however that you really need this infusion, it might be best to have another chat with your rheumatologist about it. Wish you well.

Lin-lou
Lin-lou in reply to Barnabus

Thank you Barnabus. I guess as is often said on here, we are all different! I'm glad your four experiences weren't too bad, that's great. I won't describe the reaction I had but it was enough to now make me almost convinced, never again! I have additional problems with being a full-time carer for my husband so can't afford to be so very "ill" for two days like that, especially if not absolutely necessary. So, as you and others have said, more discussion needed!

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