Zoledronic acid

[JsDaughter]

I haven't posted on here since last year, when my mum was diagnosed with GCA. Since then it's been a stressful journey for her, with little support from healthcare professionals, seemingly due to their lack of knowledge of the condition. I've used this site for information for my mum regularly, so thank you all for that.

My mum is currently on 16/17mg of prednisone , although rheumatologist said this week that he's surprised as he thought she'd be down to 10mg by now! At no point did he take into account how her symptoms increased when she reduced. Apparently, she MUST, be down to 10mg when he sees her again in 12weeks. Incidentally, when she said she'd read a book about PMR/GCA (Kate Gilbert's) he said she shouldn't be reading about her condition???

She's had really hideous side effects from the bisphosphonates, sometime losing 2 days, feeling nauseous and dizzy. She hasn't taken the tablet for two weeks and the consultant has suggested her having an infusion of Zoledronic acid which has to be given in hospital.

My mum's quite concerned about having yet another drug, and the potential side effects of this and I wondered whether anyone on here had any experience of it. Apparently, it will last a year.

Also, has anyone else lost their sense of smell? My mum hasn't been able to smell anything for a few weeks. She forgot to mention it to the rheumatologist, I think because she was quite upset at his attitude. She still won't let me attend her appointments with her ... Too worried that I'll lose my temper, I think!

Thank you in advance for any information you might have 😀

[Annodomini]

I had the first of three annual infusions of Zoledronic Acid six months ago. It took no more than an hour in hospital under the care of a specialist nurse. I was warned about potential side effects in the form of aches and pains which didn't happen, or not immediately. About a week later I had pains in my hands and feet which lasted only a couple of days, so I assumed that these were the expected side effects. Since then, I have been able to forget it. Back for another dose just before Christmas. Your mum's rheumy is way behind the times and doesn't seem to understand the nature of PMR at all. That 'doctor knows best' attitude is positively antediluvian.

[Kay60]

HI

Sorry to hear you mum still not too good some of our lovely friends will give you all the advice you need

However as for your mum not letting you attend the appointment with her,I had this with my dear mum (now sadly gone ) she used to say the consultant was not very nice to her! So i just told her i was going as i wanted to look after her as she looked after me, and it worked she let me go with her. And he was horrible AND VERY DISMISSAL because of her age she was 75 and he said she was a bit to old for hip replacement. I did keep my cool with him and told him she was in a lot of pain and we would like the op thanks you 6 mts later she was walk around much better.( Although i now she had PMR untreated) so god knows what he would have said to her about that.

What really makes we cross is all these Drs say cut down your dose but they don't have to live with the pain stiffness as if we want to be on steriods !!!

Good Luck

[JsDaughter in reply to Kay60]

Thank you for replying. This is such a lovely, supportive resource.

My mum is 73, and is concerned that if I attend her appointments with her the consultant will think she's daft! I have said that if I'm not invited to her next appointment I'll 'gate-crash' it!

The consultant she's seeing now is the second one since her diagnosis. The first one phoned her at home after seeing her and asked what she'd prescribed for my mum as she'd forgotten to write anything down. Not exactly confidence inspiring!

[PMRpro Ambassador in reply to Kay60]

Funny how the Queen Mum had a hip replacement at 90-odd...

I know a lady with PMR well into her 80s who had her hip done. Then there was the 60-year old lady with PMR whose GP told her she wouldn't be considered to have a hip replacement for 20 years as she was far too young.

I would prefer to have that sort of assessment from the orthopod who really knows what they are talking about - because both of them had their hips done according to need, age is an irrelevance if you are otherwise well enough.

[shella]

I can sympathise - like you I had a very unsympathetic but highly thought of rheumy who did not like being questioned and was quite rude to me and anyone I took with me - after 6 months I managed to find someone far better who was willing to listen. We go through enough without dealing with someone who doesn't listen or who has no empathy. Maybe same person?? I have GCA/PMR and have managed to reduce from 35 to 5 but over a year on a snails pace!

Although still not brilliant my last dexa scan showed an improvement in spine and hips so will try more walking and keep on with high dose calcium magnesium and d - maybe that has helped plus lowering the steroids. I am going to try to avoid the medication until I see results of next dexa scan.

Good luck .....

[JsDaughter in reply to shella]

Thank you. My mum hasn't been offered a dexa scan. I suggested she ask about it, but she didn't feel she'd be listened to or her opinion taken seriously.

Good luck to you too..

[shella in reply to JsDaughter]

It's your health here so you have to be polite but very firm I'm afraid and try not to feel intimidated! Maybe a change of Doctor who is more sympathetic??

[Annodomini in reply to JsDaughter]

I asked my GP about a dexa scan and within a week I had an appointment. GPs are dealing with so many cases day in, day out, that they may overlook certain details. I expect to have another to see how I'm getting on after the first infusion. I am older than your mum and have no trouble talking to doctors who then usually treat me as an equal.

[JsDaughter in reply to Annodomini]

I agree with you that in an ideal world my mum should feel able to speak up about her illness when she sees the rheumatology consultant. However, everyone is different, and my mum is very reserved and doesn't feel she can question what the dr says because 'he's the expert'.

I've suggested writing a list of questions before her appointment , as this is something I've done myself, but she hasn't done this so far.

I obviously won't really insist on attending her appointments if she doesn't want me there, but I do feel extremely protective of her. After all, I know she'd do the same for me!

I'll see how she feels in 12weeks time, when her next appointment is due 🙂

[Annodomini in reply to JsDaughter]

I understand that some people still feel that doctors are 'the experts' and, in a sense, they are, but we know our own bodies better than they do and with access to the web, we are able to have information about our conditions. My GP doesn't mind this at all, but some of them do feel a bit insecure when confronted with well-informed patients. I have to admit that having a sister who's a doctor has given me a healthy scepticism about their infallibility.

[JsDaughter in reply to Annodomini]

I feel the same way as I'm married to a doctor! 😃

[JsDaughter]

Thank you for your reply..

I'm not sure how many rheumatologists are in the department but she's on number 2 and I think the previous one was even worse!

I'll try to go to next appointment with her.. Safety in numbers, and all that!...

[paddyfields in reply to JsDaughter]

Do tell your mother that if you can it is advisable for anyone of any age to have someone with them who can monitor what is said. When I see my Parkinsons nurse her write-up is always headed up with the fact that that I came alone. No one questions a husband and wife attending together

I certainly wish I had someone with me as the account of consultations are often alarmingly inaccurate.

My very independent mother put up with me being in on a consultation about her leg often giving way unexpectedly but I was supposed to keep quiet. I only ventured to speak when it became obvious to myself and my mother that she was not getting anywhere with the consultant and was about to be dismissed with no solution offered. I then put her case very clearly resulting in an operation to tighten something above her knee with a subsequent return to reliable mobility.

[JsDaughter in reply to paddyfields]

Thank you.. I have given her the option of me being in her appointment and promised not to speak, just listen and take notes. I'll see how she feels in 3 months when the next appointment is due.

[Gosingen]

Hope this helps. I refused to take the tablets and I have had two annual infusions. It's fairly quick, done at my local hospital and luckily I've had little side effects - only just feeling like I've got flue for a day. Wish your mum good luck with the decision.

Strange comment about what the gp said about not reading any info. I would dispute this myself, but we are all different. Better informed, better decisions.

Regards.

[JsDaughter in reply to Gosingen]

Thank you. I agree that it must be of benefit to everyone - Dr included - if the patient is better informed.

I'll tell my mum how you got on with the infusion. It's helpful to hear. At the moment she's thinking she might just take the tablets again, and lose 2 days a week feeling poorly.

The rheumy she saw last week has made her feel that she should be reducing the prednisone far more quickly so I know she's going to try to rush it, which will undoubtedly cause her problems.

[Doralouise77]

Re your mother's reaction to her weekly biphosphonate, mine is ordered once a month, then she would only lose 2 days a month, still not ideal but maybe a better option. I don't have any reaction to mine but I forget to take it regularly probably just because I'm not convinced I need it. I have regular bone density scans and there's been no change in them, always good. My age is 68 next month. FYI my prescription is Risedronate 150 mg. The package info emphasizes that it be taken first thing in the morning with plain water on an empty stomach (before any food or other medications), you're to be sitting up when you take it and remain upright, sitting, standing, walking,...but are not to lie down for 30 minutes, after which you may eat too.

Cheers

[JsDaughter in reply to Doralouise77]

Thank you . I know my mum's tried 2 different bisphosphonates, and reacted badly to both. She's followed all of the instructions, but still felt terrible. I'll ask her to check her prescription, because, as you say, once a month would be better than four times. Maybe she could change to this.

[Doralouise77 in reply to JsDaughter]

CsDaughter,

You're welcome. I hope your mum finds something that agrees with her.

Cheers