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Zolendrate

Posted , 7 users are following.

suffolkmo
suffolkmo

Could anyone help me please with the long term side effects of Zolendrate?  I have had severe muscular pain when taking alendronic acid.  I have been offered an annul infusion of zolendrate but I really cannot cope if the side effects are the same and last all year.  If they wear off in a couple of months I can cope as long as I know the pain is going to end.

that is all I want - an answer to this question!

thanks

suffolkmo

 

0 likes, 17 replies

17 Replies

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  • alison28608
    alison28608 suffolkmo

    Posted

    I hope you hear back from people who have had this experience and not just what people have read on the internet. I took AA for a few months but it made me sleepy all day. I changed to Risedronate and have had no problems. Although most of the meds do pretty much the same thing, some are better tolerated by one person and not by another. I personally know someone who has been on AA for 9 years!!! She has had no side effects and although she walks with a stick, so do a lot of 87 year olds. Unfortunately no one can predict how we will react to any meds. Its a bit of trial and error. If you have other medical issues, your specialist should be able to advise you which one is best for you. I have suffered fractures and considered if I had some pain with the meds, it would be better than the pain and disability that can come with fractured vertebrae. Good luck.
    • suffolkmo
      suffolkmo alison28608

      Posted

      thank you lots.  I tried Risedronate when I came of AA and it was no better.  I agree that anything is better than a fracture, but a whole year of pain and not sleeping is not a good prospect when I'm still working!  thanks for the reply

      though.

    • alison28608
      alison28608 suffolkmo

      Posted

      Lack of sleep is truly awful. At least when we can sleep our body repairs itself and we can cope with everything life throws at us, so much better
  • elizabeth85938
    elizabeth85938 suffolkmo

    Posted

    I took Alendric Acid for nearly 8 months but it gave me severe gastro-intestinal problems and I had to stop. Last October I had the Relondrate Infusion and although I do suffer some muscle weakness and pain in my arms it has been bearable. I have no other side effects - but this is me and as I didn't have the muscle pain on Alendric Acid as you did it is almost impossible for me to answer your question. I am seeing my Rheumatologist this Friday for my 6 month check-up and will ask if these muscle pains are likely to continue and what percentage of patients suffer this. I will let you know what he says if you like.

    Have you tried a calcium rich diet and weight bearing exercise to help your T-scores? There are two wise and helpful women on this Forum, Anhaga (not sure of the spelling) and Kathleen who know a lot about this and I hope one of them pop up with some helpful advice for you. If your Rheumy has told you to take Ad-Cal or similar you also need to take Vitamin K2 (with Natto) to direct the Calcium to your bones and not to other parts of the body like heart and veins. Google this if you can. 

    I originally kept my T-scores stable this way and did not want to accept the Relondrate Infusion at all. Unfortunately I had Breast Cancer this time last year and was put on Tamoxifen to strip out the female hormones responsible for the cancer. I was not able to stay on this though and am now on Anastrozole which as well as dealing with the hormones unfortunately also leaches the calcium out of my bones. I felt I had no choice, but you do! Perhaps if you do a search on previous posts of Diet and weight bearing exercise some useful information will come up.

    I hope that you are able to make the best decision for yourself and wish you well.

    • suffolkmo
      suffolkmo elizabeth85938

      Posted

      thanks Elizabeth.  I do try and keep up with all the other health regimes and have been skiing for years without mishap so I do tend to bounce!  It's just the muscle pain that worries me - and no-one seems to have had any experience of taking this particular infusion, which lasts a year!  Ho hum.

      smiles

      suffolkmo

    • elizabeth85938
      elizabeth85938 suffolkmo

      Posted

      Well, as I said I am 6 months into the Relondrate Infusion and so far I would be happy to have the second yearly infusion this October. The side effects are tolerable for me. Perhaps the only way you will know is to go ahead and try it - the side effect I do have has not got any worse 6 months in, if anything it is less now than the first 2/3 months. Hope this helps cool
    • Anhaga
      Anhaga suffolkmo

      Posted

      Just to add to Kathleen's suggestions I've recently read a little more about boron, which is often said to be helpful for the bones.  A study has been done which shows it does indeed have a positive effect on bone density, so good to know.  However it was found that one had to have at least 5 mg per day, through diet and/or supplement for it to be significantly useful  I think this is relatively easy to get through diet, and a bone supplement which includes micro nutrients besides the requisite calcium and D3,  Quite a lot of common foods are good sources of boron, not just the well known prunes, but there's always the caveat that plant foods are only as good as the soil in which they are grown, so eating a wide variety grown in different places is a good idea.  

      You have a complicated medical history so I can't say one way or the other whether zolendrate is a good idea in your case.  But I think I can quite unequivocally say the other things you are doing, the activity and the attention to diet, are absolutely right and may even help you discontinue OP drugs altogether, eventually.  

      A study was done a few years ago which followed a number of people as they took certain supplements and exercised which showed that they were able to improve their bone density as well as the drugs can do, without side effects.  If you google combination of micronutrients osteoporosis you should find it.  I haven't followed their exact protocol, but took heart that the methods worked, and did improve my bone density in one year.  I only have osteopenia, my t-score improved from -2 to -1.6, although I have been taking prednisone for polymyalgia for some time.  I have a friend who improved her score from an osteoporosis level to osteopenia, and continues to improve, as shown in her successive DXA scans.  There are others we encounter online.  So we know it can be done.  

  • kathleen65757
    kathleen65757 suffolkmo

    Posted

    Hi suffolkmo! First of all, what are your tscores?

    Secondly, have you broken any bones recently?

    I have no personal experience with zolendrate because I have refused any drugs to date.

    Also, are you younger than 50 or older than 70?

    Age has a bearing on choices as well. 

    People choose what is best for them at a certain point in time. The most important thing is for you to be armed with information and know what has caused your osteoporosis if possible,

    Please provide some details as everyone is different but there are some things we all agree on like taking vitamin 2 and knowing your calcium and vitamin D3 levels and also if you are deficient in magnesium.

    All the best.

     

    • suffolkmo
      suffolkmo kathleen65757

      Posted

      Hi Kathleen

      I don't know my t scores - didn't know that I should!  I know that I am very deficient in vitamin D and I'm waiting for the hospital to find me a supplement that doesn't include the things I react to - like milk and citrus.  I am 65.  I was expecting the diagnosis at some point as both mum and Nan had it.  My sister is okay at the moment as she is on HRT following a hysterectomy.  I take a magnesium, calcium and zinc supplement intermittently as they upset my stomach so I take a couple a week. 

      If I don't take the Zolendrate what are the alternatives?  That's the dilemma!

      thanks for your reply

      suffolkmo

    • kathleen65757
      kathleen65757 suffolkmo

      Posted

      You need to find out your tscores because what you decide to do is based on those results. Below -2.5 is only osteopenia and the worse your scores the more serious is osteoporosis, for example, -4 is worse than -3.

      Once you know those scores you can decide how to proceed.

      Check your levels in your blood tests for things like vitamin D, calcium, etc.

      People with osteoporosis have often found to be lacking in magnesium.

      Improve your diet as much as possible and do some weight bearing exercise.

      The alternative could be trying to help your bones naturally especially if your tscores are not too bad, 

      All the best and please find out your tscores.

       

    • suffolkmo
      suffolkmo kathleen65757

      Posted

      Ah now I understand - my last score was -2.5.  That was 18 months ago.  I have a good diet within what I can eat and I do regular weight bearing exercise.  The diagnosis was clearly porosis, not penia and I'm hopeful that the year I spent on AA has helped.  I'm 5' 4" and weigh 81/2 stone so I'm not overweight and never have been!

      I really appreciate your help.

      thanks

      Suffolkmo

    • kathleen65757
      kathleen65757 suffolkmo

      Posted

      Anhaga will talk about wearing a weighted vest to help with weight bearing exercise as you sound like you might need that. -2.5 is still not bad as it is barely into the osteoporosis range. I would consider that borderline only.

      I assume you have not broken any bones?

       

    • Anhaga
      Anhaga suffolkmo

      Posted

      Try a different kind of calcium supplement.  Calcium citrate, for example, is better tolerated than calcium carbonate.  There are others.  Also eating a little yoghurt with calcium is helpful to make sure the calcium is well absorbed.  The supplement should not be too big a dose.  400 mg twice a day is better than 800 once a day.  The body can't absorb too much at a time.  

      If you consider a weighted vest look for the kind which allows you to add only a couple of ounces at a time to build up the weight carried slowly and painlessly over time.  I have one I had to order from Texas, but I think it may now be available through the big retailer name beginning with A.  The vest was originally designed for body builders but has been found by the bone building crowd!  I has the words hyper and vest in its name..

    • suffolkmo
      suffolkmo kathleen65757

      Posted

      None - and we ski each year and so far I've bounced when I've fallen!  Thanks for the reassurance - I don't feel quite so anxious now about not taking anything for it.

      smiles

      Suffolkmo

    • Anhaga
      Anhaga suffolkmo

      Posted

      Vitamin D is available in cod liver oil if you can't get a suitable capsule.  On the other hand I believe pharmacies can make up custom medications for people, so that's another possibility.  They can leave out the additional ingredients which cause individual patients problems.  

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