Can Aledronic Acid cause headaches. : Hello... - PMRGCAuk

PMRGCAuk

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Can Aledronic Acid cause headaches.

Suffolklady profile image
25 Replies

Hello. First time of seeing a Rhuemotologist the other week she was very supportive gave me plenty of advice booked me for X-ray, shoulder scan and Dex scan and to see an endocrinologist (whatever they are) in the future. One thing she suggested the doctor put me on was Aledronic Acid I had the first one Saturday morning with no side effects. Come Monday morning I became increasingly tired and got an annoying headache. Went to bed thinking it will be gone by the morning but it just got worse and ended in bed all that day feeling pretty drained. Another two days have passed and no sign of it improving. This morning the blooming headaches still there. Do you think it could be the new med? Have any of you experienced the same thing? Be glad of any advice.

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Suffolklady profile image
Suffolklady
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25 Replies
PMRpro profile image
PMRproAmbassador

Headache is listed as a side effect - and on other forums people compare them to migraines.

Now I would have waited for the dexascan before agreeing to take them. I took 4 tablets before I had my dexascan and just disliked them - plus I didn't like the sound of them when I did my research. So I spoke to a different GP and he agreed with me - I waited for the scan result which was fine. I have never taken any more and my bone density had barely changed in over 7 years on PMR doses. Always took the calcium and vit D though.

Have you tried taking some paracetamol?

Suffolklady profile image
Suffolklady in reply toPMRpro

Hello PMRpro. It seems a sensible thing to do wait for the scan but you know how long these appointments take. I never gave it a thought just went by the advice I was given and if I’d not have gotten these headaches don’t think I’d have thought anymore about it. Out of interest what do they do for a Dex scan? No I don’t take paracetamol I’ve never found it useful for pain unless you are thinking of another reason?

SnazzyD profile image
SnazzyD in reply toSuffolklady

A DEXA scan is easy. Lie on a couch in the open, then it’s like an X-ray, over in a jiffy. I think they did it in two parts for me, top and bottom.

PMRpro profile image
PMRproAmbassador in reply toSuffolklady

PMR/GCA plus headache usually engenders panic! If it goes with paracetamol it is unlikely to be GCA... That was all.

SnazzyD profile image
SnazzyD in reply toPMRpro

Just a thought, can taking Bisphosphonates within a certain time of a DEXA scan affect the results?

MayH profile image
MayH in reply toSnazzyD

I was told not to take my bisphosphonates before my dexa scan 🙂

Suffolklady profile image
Suffolklady in reply toMayH

Thank you for that I’m seriously considering not to take the second one on Saturday I don’t need anymore pain than I’ve alredy got.

Chrob profile image
Chrob in reply toSuffolklady

If you put a/acid in search pmrgcauk at top right ,lots of posts pop up , I stopped after 4 tablets and reading about the effects.

Suffolklady profile image
Suffolklady in reply toChrob

Ok I will do that thank you. I don’t want to take something I might not need just for the sake of it, take enough medication as it is.

PMRpro profile image
PMRproAmbassador in reply toSnazzyD

In what way? They are a long term "solution" - once you are taking them you would hope the bone density increases - that is the point of the exercise. Stopping taking them for a single day/week isn't going to change anything. But it will appear your bones are denser - whatever other effect they may be having. There isn't a direct relationship between increased density and lack of fractures - people with osteoporesis don't have fractures, people with normal bones do.

Suffolklady profile image
Suffolklady in reply toPMRpro

You said you did some research on it and didn’t like the results what were the findings PMRpro, in layman’s terms?

PMRpro profile image
PMRproAmbassador in reply toSuffolklady

People with low bone density don't always have fractures, people with normal bone density still break legs! So why???

But the first indications that there might be the atypical fractures with extended use of bisphosphonates were just beginning to emerge and I also looked at the history of the marketing of Fosamax. There was a heavy sell on the part of the manufacturers and an insistence that this was a wonder drug that you could give to everyone as there were no side effects and you'd eliminate fractured femurs entirely - and when I hear "wonder drug" my sceptical antennae go into overdrive! And, slowly, it is turning out that maybe the bisphosphonates aren't quite the miraculous item it has been claimed...

Suffolklady profile image
Suffolklady in reply toPMRpro

Yes exactly if there was such a thing everyone would take it. Everything has some side effects we hope when we take a drug we are the minority that escapes side effects.

SheffieldJane profile image
SheffieldJane

I would be highly suspicious of the timing of your awful headache. Did your DEXA scan indicate that you should be on a a biophosphonate. ( sp)?

If over the counter painkillers have an impact then perhaps you can discount your central condition and much maligned Pred.

I have had phases of chronic headache during PMR, nothing helped but it disappeared at lower doses of Pred. Good luck, it is very wearing.

Suffolklady profile image
Suffolklady in reply toSheffieldJane

I haven’t had a Dex scan yet I’m waiting for an appointment. No I haven’t tried paracetamol. It’s not very effective on me as I’m on higher types of painkillers so paracetamol is like taking a sweet to me of no help. It’s worth a try though.

MayH profile image
MayH in reply toSuffolklady

I started on bisphosphonates only after a dexa scan showed I had severe osteoporosis in my hips. I personally would wait for a scan before starting any meds. A few months shouldn’t make that much difference anyway

Telian profile image
Telian

I didn't get on with AA, gave me the biggest headache and I felt terrible, never took another one as BP went through the roof as well, changed to Adcal. ATB.

Suffolklady profile image
Suffolklady in reply toTelian

Thank you for your input Telian it was very helpful to hear. My headache for the first time since Monday has nearly gone, I felt terrible this week. I am due to take the second AA tomorrow morning but I’m not going to. A few of you think until I have a DEX scan, which I’m waiting for, it’s best not to add to my medication list and thinking about it you are absolutely right especially the way I felt this week. I’m on Adcal and have been for 18 months. Whether it was a flare up I don’t know but I had neck and head pains and my shoulder muscles were tender and sore this week. So is this a flare up or the results of AA I don’t know. Since I’ve had PMR I have had good results from pred but have never been below 7mg due to feeling quite ill not necessarily in pain so this weeks pain has taken me by surprise. I’ve upped my pred to 10mg for three days, today being the first day and tonight I feel much better. Fingers crossed I’m doing the right thing?

PMRpro profile image
PMRproAmbassador in reply toSuffolklady

AA also lists muscle and joint pain as a side effect. TBH - I wonder if there are ANY of the drugs they try to push us onto that don't have side effects that are as bad as or worse than PMR itself!!!! Though as far as I'm concerned, that doesn't include pred and it at least does relieve the PMR symptoms!

Telian profile image
Telian

I'm not sure why you were put on AA if already on Adcal and without a dexa scan to say you needed it, sure someone will say. It's not unusual to have problems on or around reaching 7mg either as that's when the adrenals start to kick in again and could be why you feel so bad - it seems to fit in with the increased pred improving your symptoms. I would wait until your symptoms have stabilised now and only then reduce slowly by 1mg to 9mg for as long as it takes for symptoms to stabilise, then same again and when/if you hit 7mg reduce by .5mg. I have to do that. Listen to your body and don't be in a rush to reduce or you'll keep yoyoing. ATB.

Suffolklady profile image
Suffolklady

It was a first appointment with the rheumatologist she said booked an appointment for X-ray and scan on shoulders and a Dex scan and advised the doctor to prescribe AA, not know anything about it I just complied. On 7mg I’d had a good month with some energy but it was only on taking AA things changed but it may have been just by coincidence. No one day day is the same as the other. Thank you for your advise.

PMRpro profile image
PMRproAmbassador in reply toSuffolklady

I am very much of the opinion that if something changes when you change medications in any way - blame that until proven otherwise!

My rheumy was saying the other day he has a patient he had started on methotrexate and the guy had a swollen mouth and problems breathing. They stopped the mtx, problem went away, tried it again, problem came back. So then they tried leflunomide - exactly the same. Nothing of the sort was listed for either drug.

Suffolklady profile image
Suffolklady

Yes I think your thoughts are right. If I do need something for my bones then I will deal with it when the time comes. The Dilemma is I am on the cards for an appointment to have my Adrenal gland checked, when I don’t know, the Rhuemotologist said to stay on 7mg until this test is done so it’s a catch twenty two situation. I don’t want to be too high otherwise it’s a waste of time. At the point of seeing her I was very stable with this level but you know how quick things change.

PMRpro profile image
PMRproAmbassador in reply toSuffolklady

A lot of doctors won't do it at above 5mg as they say there is little point and even feel that at 4.5mg is far better than at 5mg. Obviously personal opinion - but I do see their point.

Suffolklady profile image
Suffolklady

I can’t tell whether it’s at the point or not. I’ve never had oodles of energy ever so it’s hard to determine. I will go with the flow with that one. At least I’m getting listened too and things are monving along that’s something to be grateful for.

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