I broke out in a rash\hives all over my tummy, sides and back. On the leaflet's possible side effects it advised to see your dr if you noticed a rash. Rang dr's surgery and receptionist called me back that I should stop taking it for 2 wks then re-start and if I have have the same probs ring dr's rugery for an appointment.
Made an appointment with the dentist to make sure it is ok for me to take these horrible tablets as I have a dry mouth\Sjorgren's Sydnrome
As nobody has replied to your post, I hope you don't mind if I chip in. I didn't get an allergic reaction to AA myself, but had that happened I would NOT have risked taking it again. Although there's a small chance it was just coincidence and your rash/hives wasn't caused by the AA, that seems very unlikely to me. If you take another dose, although it's possible you won't react again, you equally risk having a worse reaction second time, such is the nature of allergies. If I were you, I would make an appointment with your GP and discuss it with him before taking another dose. I would actually choose to avoid bisphosphonates altogether following such a reaction, but your GP may be able to advise you that it's safe to try again. I realise the receptionist may well have discussed it with a GP (or possibly a practice nurse) before calling you back, but at that point she was passing on second hand information and may have missed out an important fact (for example, omitted to mention the hives).
Hi Met00, thanks for replying. As it is on AA's leaflet that if you have hives\rash you should see your gp. Rang the surgery and the duty dr didn't get back to me as she had passed it on to the gp that I had seen. The receptionist that did speak to me said gp said not take it for two weeks then re-start and if I have another reaction make an appointment with surgery. It seems that the gp didn't think it was that bad, maybe other patients have had side-effects. I don't know whether I should start taking the calcium/Vit D or not as she didn't seem to know. I am not to take both the AA and the supplement at the same time so they know which one is giving me side effects. I am going to the dentist tomorrow and I am going to ask her about it. I would prefer not to take any bisphosphonates and just up my calcium/Vit D if I could. Are you still on AA now Met00 or are you on something else, sorry if you have mentioned what you are on.
I would still want to speak directly to the GP if I were you, to be sure he was clear you had hives as well as a rash and how widespread it was. If you do decide to take AA again, make sure you have some antihistamines to hand (apparently the old fashioned ones like piriton are most effective) and aren't on your own, just in case you do have a worse reaction. Sorry, I'm not trying to scare you and may be out of order, but I suffer from allergies and, though I've never had a serious reaction to anything, I have been warned that sometimes repeat reactions can be worse than the first time.
No, I didn't take AA for long as it gave me reflux. I then took risedronate for a year, but gave that up eventually too due to side effects and am now relying on exercise (including with weights and resistance bands), diet and supplements. I have quite a poor spinal t-score, but haven't fractured.
Hello Met00, Thanks for your very helpful reply. I think my gp doesn't want to talk to me, she didn't want to discuss my bone scan report with me. I don't understand why she didn't ring me herself and had a receptionist ring me, who isn't qualified to give medical advice. I am seeing a physio this morning and hopefully she will be able to show me what I should be doing and what I shouldn't be doing, exercise wise. I am going to the dentist later on and I am going to ask her about AA, as my gp seems very reluctant to. As if we don't have enough problems without having a stroppy gp to deal with. I know you aren't trying to scare me, you have been there yourself and you know what could happen, and am grateful for your advice. How do you feel in yourself now? not taking medication and managing your condition with exercise and diet?
Hello truffled. So sorry your GP is being so unhelpful. Is there another GP in the practice you could see instead? Maybe you could make an appointment rather than try to speak on the phone, although I know how hard getting appointments can be. That's a good idea seeing your dentist. I didn't realise I needed to (my GP sent my prescription with my DEXA report in the post, so I had to ask for an appointment with her, but was very ill-informed myself at the time, as I now realise my GP was too!). Last year I went for private dental treatment, long story but ended up having a crown which my NHS dentist had said wouldn't be possible because I didn't have enough tooth left. While there, I asked about an implant as another option and was told I couldn't have one until I'd been off bisphosphonates for at least 3 years, and if I needed an extraction it would have to be done in hospital, I'd need to take antibiotics before and after, and would have to have the wound packed! Not all dentists are as cautious as that, but I gather many are, which is one of the reasons I'm now refusing bishphosphonates, as some of my teeth aren't in good condition (but I don't want them all taken out "just in case"!!).
I actually feel very positive about the way I'm managing my osteoporosis, although of course have no proof that things are improving. Apart from anything else, I'm probably the fittest I've been in many years and I'm eating more healthily than I've ever done. There's quite a lot of evidence that some supplements can help build bone (especially K2 and boron, probably magnesium, and possibly also Vit C, zinc and silica), but more important than all of this is that working with weights is effective for increasing bone density. I'm only really getting going with that now, after starting and stopping several times due to other injuries (not osteoporosis related and not as a result of exercising), so hope I'll be able to continue this time as I'm sure it will help. I think I said before, I haven't completely ruled out meds, but would definitely prefer to avoid them if possible.
I hope you can find a more supportive GP and get some answers.
Hi Met00, When I tried to get make a dr's appointment on-line there was no other available appointments except with this particular dr and I had to wait three weeks to get that appointment. There are a couple of nice gps at the surgery, but it is trying to get an appointment with them.
The dentist said to me that you need to have all dental work\extractions done before you go on AA because of the long healing process. She said I was lucky that I had had my implants done before I took AA., but AA wasn't so high risk as having the injections. Although I've got loads of fillings, a couple of implants she said I could continue on AA but she got it that I didn't want to continue on AA because she has so many patients complaining about the side effects they have on it. I don't think people starting AA know what a problem it is about having dental work done, I certainly didn't. Couldn't see the physio today as he was sick so I have to wait until next week to see someone else.
It is very heartening to hear that you are managing the condition through exercise and diet, especially after you've had AA. Well done you.
Sadly that's now the state of most of our GP practices. While you wait to see a physiotherapist, here's a link to the ROS website where they have some online info and videos about safe exercise: theros.org.uk/information-a.... Also, be aware that not all physiotherapists are as knowledgeable about osteoporosis as we'd expect them to be. It's important to be very cautious about bending the back forward and twisting, particularly when lifting.
Hello Met00, I rang the ROS and asked if they could help me find a physio who dealt with our condition. I thought they would probably have some sort of register of registered physios but they don't have and referred me to their videos. The physio I am seeing deals with musculoskeletal physiotherapy, and she is at the gym I go to. So hopefully she will be able to tell me what I should or shouldn't be doing.
I still haven't got my head around having this condition. Did it take you sometime to accept your condition Met00?
Hello truffled. Sorry you're having such a hard time finding the information you want, but you'll get there in the end. It is a bit of a minefield to start with, and can feel quite overwhelming, with most of us going through some degree of shock and fear initially. I was certainly very shocked when first diagnosed as I thought it was something you only got in your 80s or older (I was 58), and the DEXA report I received implied that I was at severe risk of breaking my back in the next 10 years! (That was nearly 5 years ago, so far so good ....) Having a friend who had slipped on ice and done just that, ending up immobilised in hospital initially and then having to wear a brace for about 6 months, didn't help! However, I've since learnt that compression fractures, although nasty and potentially life-changing, aren't usually the same as breaking your back in a way that can result in paralysis, so that reduced my concern (but I'm not meaning to play down the very real pain and disability that can result from compression fractures). I also found out that bone density isn't necessarily the same as bone strength, so having low density doesn't mean I'll definitely fracture. Once you've had fragility fractures it's a different matter, because they prove you're at high risk. I've also learnt that bone density can be improved without meds, even starting from a very low point, through resistance and weight training, which is why I'm now trying to build that up. I'm still aware of the condition and try to take suitable precautions, including avoiding lifting whilst bending and/or twisting my back, and through working on improving my core strength and balance.
I see you've now had a reply from someone else who's experienced hives, and hopefully others will also chip in with their experiences. We're all different, so even if the response to this particular post of yours is limited, do read what others post on the site and keep posting your own questions. I've learnt so much from here and other similar groups!
Hi Met00,
I, like you, thought osteoporosis was something you got late in life so it must have come as a real shock to you, like it did me.
Last year my gp (another gp at the surgery) referred me for an x-ray of hips and a physio. I have joint hypermobility (some people refer to it as being double-jointed) and my hip goes out. I didn't know whether the exercises I was given then for my lower back/hip would be suitable for me now I have osteoporosis, so when I saw the gp about my bone density scan, I said I didn't know whether I could carry on dong the same exercises as I didn't want to hurt my back with now having osteoporosis and she just looked at me blankly.
Hi there. I too had hives and also contacted the GP about it, as the leaflet advises. She was not really convinced the the AA was the cause. I had excluded any other cause. The GP wanted me to rake an antihistamine which I declined. I had a steroid cream which I applied and they seemed to slowly disappear.
So, back on the AA and seems ok with no more side effects. On a positive note I can feel that the bone in my left arm, which used to feel like a chicken bone, now feels a lot more solid.
Hello Savbing,
Had you just started taking AA or had you been taking it for a while? My gp told me to stop taking it for two weeks. Did you just carry on taking it even though you still had the rash/hives?
I have been on it for 9 months now. So just kept on it. Hives were about 6 weeks ago.
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