Update I can go x πŸ˜€πŸ˜Ž

Just come back from a visit to my rumatoligest, the first visit , my diagnosis was confirmed I have got GCA , but don't need a biopsy ( thank god ) not very good with hospitals, the good news is I can go on my birthday trip , I just had to upgrade my insurance, and it only cost me Β£10 so feeling a it happier than I did , it gave me the little boost I needed , the bad news is I have to stay on my high dose of pred , and painkillers , and have also been given 3 more meds to take , the only one lm worried about is called Alendronic Acid , to take one tab once a week , anyone out there that can give me any advice about it , I know it is only prescribed to help me but don't like the sound of it , I would be very greatful for help on this subject

Thanks carol x

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  • This one is a. Osteoporosis drug ,have you had a bone scan if not, you need to look into it . Go on holiday sort it all out when you return. What are the other two.

  • Hi olive,

    Thanks for your reply, the other two tabs are only aspri and Adcal-D , I haven't had a bone scan don't know if I will have one later will have to wait and see , like you said I will wait till I come back off holiday and then have a chat with the doctor x

  • I have been on Alendroic Acid for nearly two years now. I take it first thing in a morning with a glass of water and nothing else for 1/2 hour. It helps to retain bone density that is all. I have never had a problem with it.

    Good luck. Useful to see what the others say.

  • Im on my second week of the Alendroic Acid and taking it as your describe, also a tab called Accrete 2 x day.... No appointment for Rheumatologist has came through yet bit will mention the bone scan... thank you

  • HeyCarol,Glad you can go on your holiday, well protected by Meds.

    Aldenronic Acid is a medicine that protects us against Osteoporosis in the future. I have been told that bone damage from steroid doses is irreversible. The potential side effects are nasty. Maybe you could hold fire until you come home?

    I have resisted so far because I am reducing from a relatively low steroid dose and already feel pretty awful. I am due to see Rheumatologist for the first time soon, it will be the first thing he insists on, I bet. It could mean the difference between needing a wheelchair and not in 5 years hence, I've been told. Yet my bone scan was normal so it's just in case. I am hoping to reduce steroids first and have another bone scan, before I do as I'm told. So tired of feeling awful. May live to regret the delay. 😦 Devil and the deep blue sea. Good luck, go well, have a fab Birthday treat.( I only, only....have PMR.

  • Hi Jane

    So sorry to hear that your not feeling good, I have got to admit that I have good days and bad , the steroids have made a great difference to me , my mornings still aren't to good , but still don't fancy taking the bad boys , we will see , I feel so much better just being able to chat with people and know I will get support, the holiday was a surprise off my partner for my 60th , Las Vegas πŸ˜€ Not going to go mad , just going to enjoy the break in a nice hotel ,I run a club and sometimes work 65 /70 hours a week , how long I will be able to continue ??? That's the big question!! Take care hope your sorted out and are feeling better soon x

  • Hi Carol. I also take Alendronic acid for osteoporosis. I take one tablet once a week. You have to take it before food and must stay upright for half an hour after taking. Been taking it since 2013 and no issues

    Best of luck :-D

  • I've been taking Alendronic Acid for six months, because of the risk of Osteoporosis from taking both Pred and Omeprazole. I also take Adcal (Calcium and Vitamin D supplement) - I believe that the combination is meant to reduce bone loss (the AA) and increase bone calcium (Vitamin D aids absorption of calcium).

    I take the AA once a week (Sunday first thing). The directions for taking it - with a glass of water, half an hour before food, and staying upright - is to make sure the tablet gets to where it needs to go (partly to avoid irritation of the oesophagus).

    My GP included a handwritten note with the first prescription and later called me to make sure I was taking the AA and Adcal, and correctly, so I assumed it was important. IMHO, I'd rather avoid Osteoporosis...

  • Hi skibo thanks for the advice , not sure what I'm going to do yet , going to chat with my GP , maybe I will have to give in and take them eventually, still in quite a bit of shock about the whole illness, this has hit me like a bolt our of the blue , thank god for websites like this one X thanks for the support x

  • Get your bone scan first and see if it is necessary. Not everyone suffers from bone loss with steroids. I decided not to take it. My start of steroid bone scan did not show a lot of problems and I will be going for another one next year. If there is a deterioration then I will definitely rethink. I know lots of people take it without problems but my understanding is that it should not be used as a preventative, but rather as a treatment. The potential side effects are horrendous and I thought I had enough to contend with with the steroids. Then to have to take Omeprazole to deal with the stomach side effects of AA !!! And Omeprazole brings its own set of potential side effects! I thought No, not unless it is proven necessary. Do a lot of research before going back to your doc.

    Best of luck!

  • Ah, meant to say, Nordic walking is proven to increase bone strength and has no side effects...

  • Steroids can cause some weakening of the bones or osteoporosis so it is a wise step to take alendronic acid along with a stomach Protector. Enjoy your holiday

  • Thanks tops , still contemplating , holiday first GP later , I am sure going to try to have a good holiday , come to the conclusion that life is to short , I am one of the lucky ones , coping and still working full time at the moment , going to try and change my lifestyle, diet etc , maybe that will help X thanks x

  • Can you tell me please what sort of "stomach protector" is available? I have been on aldenronic acid for a couple of months and get occasional gastric reflux. I don't want to stop taking it as I am on a regular dose of steroids but wondered if a stomach protector might help. Thank you.

  • Try Ranitidine first. Less side effects and works really well

  • Thank you so much.

  • My understanding is that you should not take anything with aleondronic. I was told not to take omneprozole. I am taking aleondric acid even though my bone scan isn't too bad. I am in first stages of osteopenia but rheumy insists it is necessary as a preventative as I have GCA and am on 30mg Pred. Are you taking it first thing, before any food or drink, sitting up and with a full glass of water, nothing else to drink for half an hour after.

  • Hey Carol

    That's good you can go on you're holiday, make sure you take enough Meds & your repeat prescription with you. Are you flying? ie Time Difference as you need to think about factoring that in if you're going far. I flew to Singapore & then on to Australia so did myself a little chart & added in the half day, sounds complicated but it's not, my Consultant at the time was very keen on this & always insisted I took additional steroids when flying.

    Re the Alendronic Acid ~ there are very mixed views on it, I personally took it as my Dexa Scan showed oestopenia but unfortunately last year I had a diagnosis of Breast Cancer & following the Chemotherapy l was changed to an infusion of Zolendronic Acid, every six months. Due to recent research they've discovered that in post menopausal women the bisphosponates are helping to keep the cancer cells from reoccurring in the bones, so from my point of view I was kinda glad I was already on it!

    But everyone has a differing view, so take your time & enjoy your holiday, you can look into it further when you get back. 😎

  • Hi Mrs nails ,

    Going to have to get my head around my meds as the time difference is 10 hrs (I think) but I'm sure I will work it out , I'm so sorry to hear about what you have had to go through, you must be a very strong woman, my illness seems to fade into insignificance, it must be very hard for you X THANKYOU for your post I am sure we will talk again soon take care carolxx

  • Carol, Never under estimate PMR or GCA; it doesn't get the understanding or empathy that cancer gets, believe me! I have never seen so many flowers as when I was diagnosed with cancer!

    No matter how hard the surgery followed by the Chemo & its effects were, there was always an end date which sadly we don't have with PMR or GCA.

    I wish you a wonderful holiday & remember we're all here if you need us! Angela xx

  • Before you take the Alendronic Acid you would be wise to ask for a DEXA scan. If your scan is good you probably don't need to take the AA....but there are far more professionals on this forum who can advise you.

  • Thanks Ida , I haven't had any bone scans yet !! But I'm sure if I ask about them it will happen eventually, time will tell, will chat with my GP , and await the outcome , still got to get over the shock of finding out I have GCA , never been ill , but the support on here is a great comfort to me x

  • Like betty1943 I have taken Alendronic Acid for 17 months with no problems whatsoever. I take it every Monday morning with a large glass of tap water. I stay upright for at least 30 minutes and take nothing else to eat or drink until the 30 minutes has elapsed. At first I used to take my lansoprazole after that which meant I had to wait a further 40 minutes before eating and taking my steroids. For the past 6 months, I have taken my lansoprazole in the wee small hours (I always wake up at least once during the night) and that speeds up the process in the mornings.

    Have a great holiday!

  • I was put on Risedronate after a bone density scan. Side effects were awful, so was put on Alendronic acid whose side effects were worse, so am not currently taking any such bone strengtheners. I wish I'd had a scan as soon as PMR was diagnosed in July 2013.

    I hasd a bone density scan in late 2014 which showed I had strong hip and thigh bones but my back-bone was a bit porous. I'm down to 3mg of prednisolone, and will start dropping again soon. You need to get a scan before taking alendronic acid so that the effects of alendronic acid will be able to be monitored. Have a good holiday.

  • Heycarol,

    Good news. As you see there are varying opinions on AA, but getting DEXA scan is wise. No point taking tablet if you don't need to, and certainly quite of few people seem to have problems when taking them.

    I was on them for 4 years, until I got to really low dose of Pred (1mg) as prone to osteoporosis - plus they shouldn't be taken for more than 5 yrs.

    Took on a Sunday morning, then sat down or showered to pass the time before you can eat or drink. No problems, but thought that 4 yrs was long enough as I was down to 1mg would hopefully be stopping within a few months anyway - GP agreed.

    You do need ADCAL for extra calcium, and small dose of aspirin is recommended for GCA (assists in blood circulation) was already on with blood pressure tabs.

    Enjoy your trip!

  • Before you take AA, the BSR in their guidelines ay the PMR & GCA patients should have a Dexa Scan soon after starting pred and then checked at 2 yearly intervals.

    That scan will show your bone density if it is good you do not need medication yet.

    Many people stil have good bone density after 5 years or more. I am one of them - 5 years with GCA - Dexa Scans every two years and bones still at 97%.

    AA must not be given to anyone with a history of gastric reflux (heartburn), hiatus hernia, or any surgery for such problems. It can cause muscoloskeletal pain which can be severe. (PMR patients have enough pain)

    It must not be used with chronic renal failure, nor if your Calcium or Vitamin D levels are low - they must be checked first and put right.

    Some dentists will not extract teeth for patients who are on AA because they believe there is a risk of jaw not healing.

    The FDA advises no-one should take AA for longer than five years.

    All of the PMR&GCA forums have threads discussing the side effects patients have suffered. Use the search engine (top right hand corner) type in Alendronic Acid.

    In the booklet 'Living with PMR&GCA', there is an article on Alendronic Acid.


    It is a personal decision taking it or one of the other biosponates may be justified. There are others which work in different ways. So take a look at the National Osteoporisis Society website and read up on all the information relating to AA and the alternatives available if your Dexa Scan shows you need one.

  • AA and similar meds are no longer recommended for people with "osteopenia". You could look into non-drug methods of maintaining and improving bone strength as several on this thread have already suggested. Diet, supplements, weight bearing exercise (walking, Nordic walking, tai chi for instance). Supplements and nutrition beyond the requisite D3 and calcium include Vitamin K and Vitamin K2, magnesium, and a number of other things, much available in the diet although K2 is one which almost certainly will need to be supplemented. It wouldn't hurt to follow a regimen including these things even if you are on medication as it will improve your general health anyway. :)

    One of the things about the bisphosphonates is that you should make sure to have any necessary dental procedures before starting, and maintain excellent dental health. Check with your dentist if your doctor seems unsure.

  • I resisted taking AA when I was first diagnosed with PMR 4 yrs ago. I was lucky enough to be offered a scan which showed osteopenia in my spine but ok in hips. I still resisted medication as I wasn't convinced with taking another tablet " just in case ". My last scan two months ago showed I now have osteoporosis in my spine according to the results. I must admit to having severe lower back pain at times, but that tends to be when I have done jobs like shifting a tonne of garden waste or helping my husband re-lay some paving πŸ˜…πŸ˜…πŸ˜…πŸ˜…. So I have accepted the AA to treat the bone density problem but am not convinced that the PMR and the steroids are to blame for my back problem. Rather more caused by the fact that I have always done my share of the heavy DIY jobs and even more during the last four years since my husband had a stroke, so I am now his extra arms and legs!!!! A scan is essential so we can make our own decision about taking more medication. Lifestyle, medical history, personal choices as well as the blessed steroids and luck all play their part in whether or not we will develop osteoporosis. Insist on a scan. It really is the basis of what to do about taking AA. Hope all goes ok with you. You have been diagnosed with a scary medical condition and it can be very frightening at first. Keep smiling and try not to get too overwhelmed by too much information on this PMR/ GCA/steroid/osteoporosis/will it, won't it journey. πŸ˜„πŸ˜„

  • After 4 years on pred at above 10mg my bone density according to dexascan had not changed at all - I took calcium and vit D supplements which are really necessary (unless you have problems with high calcium levels, but they should check that). Less than half of patients on pred develop osteoporosis and many of us have not taken AA. If you can take it and have no side effects, fair enough, but I would not take it without having had a dexascan to show I needed it to start with and a follow-up one after 2 years or so to see if it is changing.

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