Has anyone been administered with this, or similar? I believe this is a once a year treatment for those suffering from osteoporosis, or at high risk. It would be interesting to hear anyone's experience, good or bad. Thanks
Reclast taken intravenously to slow down bone loss - PMRGCAuk
Reclast taken intravenously to slow down bone loss
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In the UK Reclast is known as zolendronic acid.
Thanks PMRpro. I have a friend who has just been prescribed this. We both live in Cyprus so the medications often come from the US. Would love to hear from anyone who has taken it.
I put it in as anyone in the UK wouldn't recognise it
Thanks
I had my first infusion on 1st September last year and will not be having another , had A dreadful reaction and to be honest don’t really remember much of the month at all , have reported my reaction to the yellow card website and after speaking to my Rheumatologist we agreed to stop them x
Thanks for your reply.
I had reclast and was due to have another infusion last month but due to covid pandemic appointment cancelled. I have been concerned at reports that these transfusions can exacerbate problems with the esophagus as I suffer from GERD I am extremely concerned as to whether to have another infusion.
The whole point of the infusions is to avoid gastric problems which are a contraindication for the oral format.
If you look for adverse effects with google I notice it tends to lump them all together for "bisphosphonates".
Hi, I too have just been prescribed this and am undecided whether to proceed, especially whilst still on Pred 3.5 & PMR symptoms still lurking.
Does it make a difference, having the infusions, if we are still on Pred? I am in a similar position to you and they want to give me an AA infusion once a year. I am resisting like mad!
The whole point is they believe you need it BECAUSE you are on pred which is claimed to cause loss of bone density. It won't be AA - it is probably zolendronic acid - they are both bisphosphoantes but AA is a weekly oral dose only.
What is important is to find out your bone density status - with a dexascan,
That’s interesting - thank you. I could have sworn that’s what he said. Maybe he was trying to trick me - or maybe my hearing was on the blink like the rest of me!
Or maybe he was dumbing down for a mere patient ... It infuriates me - at least use the correct terminology even if you think we are all thick 
... I believe you are TOTALLY right. 🙃
Me too Portobello, I have just received my dexa scan figures Total hip T score -1.1 & Z -score of 0.4. Femoral neck -1.6, Z-score 0.2 (moderate osteopenia) spine normal. Am talking to my GP on Tuesday & Infusion will take place very soon unless I refuse it I guess. Am thinking of speaking to Osteoporosis Society re the numbers as I don’t know what they mean. Happy to have it if really necessary but really unsure x
Your scores don't look too bad to me- mine are much worse. Guess I'll need to go ahead but want to delay till after 2nd vaccination so my poor body doesn't have even more to cope with 😏
That’s understandable xxx
My scores are. about the same as your scores. I had my first Reclast injection on Tuesday, February 16, 2021. I only felt a pinch when the IV needle was injected into my vein. I had no side effects. Hopefully, I will not have any side effects in the future. In November, 2020, I had a compressed fracture in my lower back. It was very painful. I am hoping that the Reclast injection will help prevent another compressed fracture from occurring.
That's good news Kathy and thanks so much for the feedback. I'm having my teeth checked on Friday but am not confident an extraction won't be required over the next 3 years! Keep smiling.
Those figures are very similar to mine originally and I have never taken a bisphosphonate. They are a bit better than mine were in October at the last dexascan after 11 years on pred - and I did actually expect the local osteoporosis guru to want me to take it again. She looked at the results and expressed amazement having never seen such good results in a patient on pred - and no, just carry on with what you are doing (plenty of vit D and dietary calcium). In other words - I wouldn't be having the infusion!
GP just rang with my latest Dexa results showing osteopenia. She started to give me the results T score. -0.6 then decided to give me a print out so picking up tomorrow. To continue taking Adcal and dietary calcium. I’ll run it by Sarah next appointment - will she have a say in it once she’s seen the results?
A t-score of -0.6 is normal - one of -1.1 is osteopenia, so is -2.4 but there is a BIG difference! Look forward to seeing all the numbers on their place.
Now have the lab results re my Dexa scan which says:
Osteopenia
Lumbar spine: T-score: -0.6 z-score 1.6
Degenerative changes in the spine may artificially elevate the values in this region.
Lt Femoral Neck: T-score: -1.4
z-score0.6
Lt Total Hip: T-score: -0.2 z-score: 1.4
Clinician’s comment: Osteopenic
Femoral neck BMD = 0.696 g/cm2
(Hologic scanner).
What does BMD mean?
Bone Mineral Density You are osteopeneic - just. But very good results for someone who has been on pred and in her 60s! They are better than mine - I'm jealous! They have to pay me to take anything more than calcium and vit D.
Mmmm I wish but not in my 60s!
Any further tips on what I should do? Currently getting plenty of walking (rather stair climbing - many times daily).
I feel much better now, thank you Doctor!
That’s really interesting & helpful, as always. My rheumy said a year ago she thought my Vit D & dietary calcium was good but booked me in for the Dexa scan as it was 2 years since the last one. As I am on pred indefinitely due to AI she was keen to keep an eye. Sadly, due to covid, I didn’t see her this time it was a very young SHO which is why I am prepared to query all this.
Have you got the dexascan results?
Yes, as above in my reply to Portobello this morning. Which you said were very similar to yours. Sadly I dont have the figures from 2 years ago until I speak to the GP.
Brain fade - they would have to hold me down to give me an annual infusion at those readings.
Ha Ha brilliant picture has popped into my head !!😉😉
Have just had a conversation with our Rheumatology nurse (an hour hanging on but it was worth it). She revealed what the SHO neglected to say; the Dexa scan dept feel that as I have been & will be on steroids long term & the scan showed clinically significant change in bone density from 2018 I should have some sort of bone protection. As I haven’t tolerated AA in the past Zoledronic Acid infusion for 3 years was recommended by SHO. Will have bone profile checked out at each infusion. The nurse did pick up that my bloods showed slightly low calcium levels. Would you recommend Calcichew or Adcal, if I can tolerate them? My Vit D levels are fine. It was so good to talk to someone who was knowledgeable & helpful, shame it’s taken 3 days to get through. She’s obviously a much needed resource!
Oh well, at least there is a justification! You need calcium and vit D supplements when on a bisphosphonate or it doesn't work. I didn't have any problems with Adcal originally but I did have recurrent cystitis with some others and eventually gave up and ate more cheese I think you just have to try them and see how you get on - some people don't get on well with calcium carbonate, it upsets their stomach. My husband has awful wind and bloating - none at all with calcium citrate but it costs about double and we have to pay for it.
Thanks so much, helpful as always!
I’ve had Zolendronic Infusions (but for a different reason - adjuvant to Chemotherapy) l found it surprisingly unremarkable but had it every six months for three years.
That’s so good to hear as my daughter is having the infusions for exactly the same reason. I had been worried about her having them but you have made me feel more comfortable with it. Thank you!
I’ll PM you x
You are so lucky , I had my first infusion on September 1st and don’t remember much about the rest of the month , never felt so unwell , Rheumatologist has decided I’m not to have any more .
Sorry to hear that, was yours for Osteoporosis? My was following Chemo so that may have impacted on how l responded.
Best Wishes
MrsN
Interesting. I didn't get that after my chemo. Adcal was the only thing. Not even tamoxifen? because of my cancer type. It was a while ago so maybe they hadn't thought of that then 30 years wow. Seems a lifetime ago
Hi, no it’s a relatively New Protocol, ie 5years ago, l was the 6th Patient at my Hospital.....
They ‘discovered’ some Post Menopausal Women developed Metastasis into their bones & some didn’t? Particularly in Triple Negative BC when it was studied it was discovered that the women who DIDN’T get Mets were already on a bisphosphonate treatment for osteoporosis......
So a Trial was done & then it was rolled out as an adjuvant therapy particularly in TNBC as there are no other options after Chemo & it is the most aggressive of the BC’s.....
My Consultant was actually part of the team running the Clinician Trial so l was enrolled pretty quickly.
I had the zolendronic infusion about 14 months ago and am due for another, but because of covid risks that outpatient clinic is closed. so it's all postponed..... I already have osteoporosis, long before PMR came along, - years on daily adcal, then weekly AA which suddenly started to give a bad reaction. That is when the infusion was suggested and I was happy enough (ignorant enough?) to agree.
It's all a matter of weighing up priorities isn't it? Don't let us down play the serious effects of osteoporosis if we let it develop. My own concern is more about the steroids and possible greater loss of bone density, but we don't all think the same.
Best!
Which is the reason for dexascans at regular intervals. I had my 4th in 11 years in the autumn - hardly any change in bone density in 11 years on pred, mostly above 10mg/day. Bisphosphonates really should not be handed out like sweeties without knowing the patient's bone density status - if you don't need them it is silly to take them because they do have some nasty potential adverse effects too and many dentists won't touch you for dental work if you are taking them. If you already have osteoporosis that is another matter altogether,
HiMy husband has had this, he has myasthenia gravis, organising pneumonia and common variable immune deficiency, yes I know quite a few things to be getting on with. He has been taking pred for 11 years and has just started taking these inj, he gave it himself as it is subcutaneous, he has to do this for cvd, infusions weekly, he’s had no problems from it.
Go for it.
Xx
Denosumab 60mg /1ml subcutaneous inj, don’t know if it’s the same thing?Xx
Yes that right.Xx
Due for my second infusion on Monday. A year ago I'd had a dexa and thought it was time because i knew I'd be on pred another year....this last year I've lost bone density in spite of the Reclast, Dexa scan -2.2 femoral head-but may have lost more without it. Who can say? I have had a bone fracture in my foot that took a year to heal and am currently waiting for a complete healing of a boxer's fracture of my hand. Which I got whilst simultaneously turning the wheel of a Gator and hitting a bump in the field. Doctor said ithe action was the equivalent of punching a man in the jaw. I believe I need the Reclast. You must faithfully get plenty of calcium and vit D or it wont work at all. I've kept my calcium levels high by drinking low. Calorie almond milk every day- 3 cups minimum. I had esophagus spasms 3 years ago while on pill forms of these medications. I refused them since.. No issues with the infusion. I will tell you though that I've had 2 minor spasms after eating highly spicey foods about two months ago . Very warm water stops them for me. I hope this helps you. If my numbers had been in the moderate range, I would not have gotten the infusion. I would have gulped down milk like a wee baby and added weight bearing exercise to my life. I would have watched the numbers of the dexa scan for movement though . I accepted the reckast infusion when I got to -2.
Calcium is more easily absorbed via food, rather than pills. My rheumatologist said I'd never be able to maintain it with almond milk, but I have. The calcium in plant milk is more accessible to the body than animal milks. ( no, I'm not a vegetarian) I highly recommend plant milk. I have always taken a vitamin D supplement every day. That being said, what I was doing wasnt enough to outweigh the damage by prednisone therapy.
I am so sorry! I meant calcium. Thank you for correcting this. Calcium.
I have always taken vit.D supplements. Calcium via the nut milk.
Thank you again.
I edited my reply. Didnt mean to say vit D was best from foods. Thanks PMRPro
Yes if you think I've corrected it appropriately. I defer to your judgment.
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