Alendronic acid

[Sheila39]

Well ,here it am another week on AAcid,cannot sleep,pain in my neck unbearable...have been ref.to see a Rhumy,also entomology dept,whatever that implys?

I'm now down to 15mgPred from 20mg..if I'm honest I feel worse,now ,than I did before starting on Pred ...will I ever get to weed my garden again? I was so active before this vile complaint struck me down...now I cannot turn over in bed,the pain in my neck/ head makes it impossible...husband still has to help get me up!dr says she doesn't think it's usual to suffer with this amount of pain...the Physio who is treating me for Piriformis Syndrome ,think that it's worsened by the fact that our 53 yr old son has come home with relationship probs...also booked in for a Mindfullness course,any suggestions on how I can coupe would be appreciated.

[Dobermanlover]

Sheila - I am no expert, but surely you need to increase your preds to a more comfortable level for you. Did you go down gradually? I have taken the wonderful advice on this site and never decreased by more than 10% and so far, so good. I do not know what Piriformis syndrome is, maybe that is why you have more problems.

Please do seek urgent advice as it has been said so many times on this site that pain in head, neck indicates GCA, which must be treated urgently.

I do so hope you feel better soon, I also have led a very active life and still have a 3 1/2 acre garden, and the frustration I feel at not being able to do very much, reduces me to tears sometimes. I didn't think anything could stop me, maybe slow me down a bit. Will be thinking of you and hope someone with far more knowledge than me will point you in the right direction. xx

[PMRpro Ambassador]

As a start I would tell the doctor that, for the moment at least, you are stopping taking the alendronic acid to see if that helps at all - it does have side effects that are most unpleasant, bone, joint and muscle pain is one and it can be severe. Have you had a dexascan done already? If not, refuse to take AA or any such medication for bones until you have had one. Not everyone needs it.

Were you OK at 20mg? How long were you left at 20mg before reducing to 15mg? When did this all start again if 20mg worked? Are you on any other medications? And please tell us more about the head pain - and any related symptoms in your head and neck.

I have no idea what "entomology" might really be in the hospital since entomology is the study of insects! Endocrinology maybe?

[Celtic PMRGCAuk volunteer]

Sheila, your symptoms sound more like those of GCA that 'just' PMR, in which case your pain may be so severe because you haven't been taking a high enough dose to control it. Whereas the starting dose for PMR is 15-20mg of Pred, the inflammation of GCA needs a much higher dose of 40mg upwards. Have you considered getting a second opinion? If you haven't had a DEXA scan that has revealed low bone density then you don't need Alendronic Acid which may just be aggravating your condition.

[lesley2015]

Hi Shiela,

So sorry to hear you are struggling, I have been on this forum many times in a similar frustrated situation. The AA, never agreed with me, my GP changed me to Risedronate Sodium, taken in the same way once a week, 30 mins before food etc. I have no side effect to this at all, where the AA made me ache, depressed and poorly for at least 2 days.

I am 56, and up until I had PRM/CGA, was walking, regularly riding and doing the daily care on my horse - and working full time. I had found this difficult over the past 5 years as the PRM progressed undiagnosed and eventually the CGA kicked in also. I started on 40 mgs pred in June, reduced too quickly - down to 17.5 (because of the side effects of the preds, made it even harder to work) and am back up at 25mg now and am in my second week of being off work sick - but the rest is really helping.

We all understand how frustrating this condition is, I like you, wonder if I will walk on the forest, ride my horse or even muck her out again - but I try and keep positive listening to all the others who are further down their journey.

I am no expert, but if in pain, do not put off going on a higher dose of steroids - I was reluctant, I thought determination could beat this condition, it appears not! I am a lot comfier - I have the tremors and insomnia worse - but and definitely in a lot less pain.

If you have GCA it is really important to get the preds right - I had a smacked wrist from my GP with this.

I wish you well.

[Sheila39 in reply to lesley2015]

Thanks for your support,it's a great help...this disease makes me feel very lonely,it's comforting to know that you all share my problems, to varying degrees.

[Sheila39]

Sorry folks in miss leading you ...of course I did mean endocrinology ...come to think of it I do feel as low as an insect some days ! Don't laugh it will hurt!!