MAS_Nurse

Hello Sukki, you have been through the mill haven't you, so sorry for your on going problem with your health. At least your arm is healing nicely now.

As far as the problem with the monthly bisphosphonate medication.

Did the hospital say why you couldn't have the infusion? What reason did they give you please because maybe you can appeal about the decision if you knew why they wouldn't prescribe it.

Also the Nephrologist was up front and said your blood level would drop but would it recover once the medication was absorbed by your body? Worth asking the question so that you are more comfortable making the difficult decision.

Good luck and keep in touch Sukki.

Are there any of our members please that can help with information for our lovely member?

Thank you.

MAS Nurse & Moderator.

sukki in reply to MAS_Nurse

Thank you MAS Nurse. I am making enquiries with nephrologist today and will be getting back to you. Nephrologist is away for the next two weeks so it could take some time.

The Rheumatologist said in her letter that the only reason to consider an intravenous formulation is if a patient is unable to tolerate the oral medication because of gastrointestinal side effects and my gp didn’t mention in her letter that I have a hiatus hernia for which I take Ranitidine 300mg. She rejected my appointment as she felt it wasn’t necessary in my case, but she stated in the letter my egfr was 69 and it is 59. This may have been a typo but for me it’s a 10 point difference which I think it a lot as I am Stage 3 and she thinks I am Stage 2, a big difference. Thank you so much for your understanding as I am confused and stressed with this situation. I will keep in touch.

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WYOAnne in reply to sukki

I think this a decision only you and your nephrologist can and should make together. We are not medical professionals and can only advise you from our own experiences. Even though you do have CKD, you still need to have quality of life. We are all different and react to meds differently. This is why it's important for you and your doctor to decide what is best for you..

Best of luck to you!

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sukki in reply to WYOAnne

Thank you WYOAnne. I have written to both the Rheumatologist and Nephrologist. For me it is such a very big decision to make as I have really looked after my kidneys for the past 8 years but since my accident my quality of life has gone down. I am trying hard to get back on track so it is really important that these professionals help me make the right decision. I feel sometimes they can be quite blasé about ckd, especially the GP’s

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WYOAnne in reply to sukki

I wish you the very best in making this important decision.

Even here in the US most GP's are reluctant to tell you about your CKD. Seems like you have to be at 50% function before they talk to you about your kidney issue. So many on this site have been able to stabilize their CKD by changing their diet. Now, if they found out about CKD sooner, maybe they wouldn't decline to the point where they need dialysis or a transplant. In a better world, maybe that will happen.

In 10 days I am about to celebrate my 20 year kidney transplant anniversary! It has been quite an amazing journey! I thank God everyday!

Prayers.

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sukki in reply to WYOAnne

Many congratulations WYOAnne. That’s wonderful news, enjoy your 20 year celebration.

Yes, I have lost faith in GPs. You have to speak up for yourself when it comes to our life threatening disease, which they seem to take so lightly. If the tables were turned and they were diagnosed with ckd I wonder how they would react! I found out they knew when I was at Stage 2 but didn’t tell me. Never mind, the damage is done and I have to go forward but I have to thank an American renal dietician who put me on the right road to a ckd diet 8 years ago. I wasn’t offered a dietician here and not even a nephrologist. Under the NHS we are only allowed to see a nephrologist when we are at Stage 4. If you are at Stage 3 you pay to see one which is what I have done.

I will keep in touch and let you know the final decision. Best wishes to you.

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RickHow

I am stage 3. I take the bisphosphonate XGEVA (a high dose version of the monthy Prolia). It is an IV every 3 weeks. I developed a side effect of skin peeling. So I was switched to another called ZOMETA (you are advised to take this IV every 4 weeks. But since I must visit the oncologist monthly for another non bisphosphonate they give me a reduce amount of the Zometa every 3 weeks). BOTH reduced my egfr. I have been on them for just 3 months. Before each treatment my blood test is done to determine my creatinine level. And the dose of the medication is adjusted based upon my level. The problem is that studies have show in patients, 2 to 3 months after stopping the drug, their creatinine level did not go down. So I too have asked myself many times, is it worth it. My doctor tells me the benefit is better than doing nothing and being exposed to continual fractures. i'm not convinced. I go again in 2 weeks. If my creatinine is again higher (I mean an increase of more than just one or two tenths) then I am refusing the drug. So if I was you....and I'm not....try it, but monitor the effects monthly. You can always stop it.

sukki in reply to RickHow

Thank you for your reply RickHow, the information you have given me is very helpful. Can you tell me by how much your egfr has dropped and what your egfr was before you took the Bisphosphonate and what your creatinine is at the moment. I have been prescribed Quodixor 150mg Ibandronic Acid (which I have not taken yet) as I need to know more of what is going to go into my body. I do wonder, like yourself, if it would be better to forget taking this tablet altogether but the surgeon who fixed my arm said if I fell again and damaged my hip or spine the consequences would be devastating. I am waiting for a reply to my email from the Nephrologist and Rheumatologist where I stated that Haematology said the IV method yearly would do less harm to my kidneys. This is not an easy decision to make because at the moment I am feeling good and the thought of the side effects and damage that this drug could do to my kidneys is very stressful. Please keep in touch, I would like to know how you are progressing. Best wishes to you

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RickHow in reply to sukki

I wish I understood more about your drug. Frankly I never heard of one that is taken yearly as an IV. I'd be curious about it too if I were you. It must be an awful strong medication to take just once a year. Mine, as I said, are every 3 to 4 weeks, and it causes me side effects the first day or two after receiving (tired, bone pain, aches). How much impact on my egfr. I fell from stage 3a to stage 3b and I am fearful it will drop again. My egfr was around 55 before (you know how it can fluctuate but was in general around that range). Last test I was 47. It seems to me the advantage I have by receiving more frequent smaller doses is I can stop it more quickly. If you take a yearly dose, and it has dramatic effect, I wonder if there is a way to counteract it, stop it from working and not just live with it for a year and not take again. Perhaps something like steroids would counteract the effect. You are doing the perfect thing by pushing your doctors for more explaining. I'd be sure to ask the simple question, if I take it and it hurts my egfr, creatinine level, how do we "turn it off"?

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sukki in reply to RickHow

That’s a very good question to ask RickHow. I did wonder about it too. If it is a yearly injection as haematology stated, once it’s in my body it would be too late to stop it and the side effects could be quite dramatic. To be honest I’m wondering whether to take the risk at all. There is so much risk involved. If I take the monthly tablet, as you say, at least it can be stopped if the side effects are bad. Your egfr has dropped quite dramatically, and will it continue to drop? I can well understand your concern. If you stop taking it, what are the chances of it recovering back to 55. Sorry, so many questions keep coming to mind. They told me that I would stay on it for 3/4 years, come off for a year and they would review. I would have blood tests for the first month and they will monitor me throughout. I have worked so hard over the past 8 years to get my egfr from 49 to as high as 62. It does fluctuate but has been steady around 58/59. Will keep you informed.

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RickHow in reply to sukki

We seem to be "twins". I too finally got my egfr where it was at least acceptable to me. I have read articles that once it goes down due to bisphosphonates it does not go back up if you stop. But how much faith can we put in internet articles? I will have blood work this Thursday. If my egfr is lower again, I am stopping it no matter what the doctor says.

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sukki in reply to RickHow

Please let me know your result and what your doctor says RickHow. I am beginning to realise that doctors, consultants and nephrologists are risking our lives with this drug and maybe we are better off without it. It may work very well for patients who don’t have ckd!! Will just have to be very careful not to have another fracture. I walk with a stick now as I have lost so much confidence since my fall and the pavements here are so uneven. Good luck for Thursday

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RickHow in reply to sukki

I met with my kidney doctor. For my past 3 monthly visits I met only with her assistant, who started the "Zometa". The kidney doctor came in and said we are stopping the Zometa. That she personally would never prescribe this for a person with CKD. And that since starting it my egfr went from a high of 56, and today was 43. She said that she can not make a blanket statement that such drugs should not be used. But there is a long list of those not advised for people with CKD. We are going to try a shot that is given every 3 weeks, called Xgeva. It is "supposedly" good for those with CKD. HOWEVER we will wait another 2 weeks for the Zometa to leave my system. Then measure my egfr. Then try the Xgeva. If it drops again, then no more bisphosphonates. She put it perfectly, that there is no sense getting protection of broken bones, if we are going to destroy the kidney and you won't be around to even have a broken bone.

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JackBurton

Hi. Just a suggestion to maybe read up on Natto for vitamin K2, and google "exercises for osteoporosis" and "osteogenic loading therapy". If you are unsure about the exercises maybe have a therapist assist with your particular situation. That doesn't actually address your question exactly, but maybe if you can help your osteoporosis a bit on your own you won't have to take bisphosphonate medication for more than a few years. Some people who take bisphosphonate medication over a long time can have an increased fracture risk because the older bone is prevented from being removed from your body, which looks good on bone density scans but the older bone is more prone to fractures. Any information that you find can always be discussed with your doctor. I am not knowledgeable on this so please do your own research to see what you can find.

sukki

Hi Jack, thank you for this information which I shall google. I have been offered exercises by the Osteoporosis Dpt at my local hospital which includes hydrotherapy. I have accepted their offer of therapy and am waiting for a date to start. From what I am learning about Bisphosphonate there is no guarantee that at the end of 3/4 years there is any real improvement, if any, in the bones. A friend of mine has been on oral alendronic acid for 3 years and says there has been a small improvement of only 6%. She does not have ckd! I will keep researching until I am satisfied that I will be making the right decision either way and I am grateful to the people on this site for their help and advice. Best wishes