Hi everyone
Does anyone have osteoporosis with stage 3 ckd? I broke my arm last year a nasty double fracture of the humerus. My arm was eventually operated on 8 months after my fall and healing nicely now. They diagnosed me with osteoporosis of the hips and base of the spine. They want to give me bisphosphonate by a one monthly tablet. Haematology told me there would be less stress on the kidneys if I had a yearly infusion of the drug. Rheumatology have told me I have to take the monthly tablet and won’t give me the infusion (they made a mistake in their letter to me and stated my egfr was 69 instead of 59). I am in complete turmoil. I saw a nephrologist and he said the tablet would be ok but I can expect my egfr of 59 to drop after taking it. He suggested I should have a blood test one month after taking my first tablet. I also have other complications, a hiatus hernia and anti trypsin 1. I take Ranitidine for the hernia. Hope someone can help me make the awful decision to take the bisphosphonate tablet. I’m so worried about a reduction in my egfr. Sorry for the long post
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.
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.
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!
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
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.
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.