Thank you to all who helped ref Alendronic Acid

[Knip]

I am pleased to tell you, following my email to my Rheumatology Team, I had a telephone call from my Consultant who was very understanding relating to my unwillingness to take Alendronic Acid as prescribed and issued. Your repsonses gave me the courage I needed to continue objecting to it.

He is a lovely man and was very kind and understanding, He explained that I now have Osteoporosis n my right hip, as well as the osteo arthritis, which didn't change my views, so he listened patiently to what I had to say. He understood re the Chron's implications, which helped. He is going to write to my GP saying that we are holding off 'for now'. I know that might mean facing up to it again in the future, but 'sufficient to the day is the evil there of'. He also mentioned the injections, but said that because of the RA and pain etc he didn't want to go down that route because of the muscle pain it might cause.

I can't tell you how much your input has meant to me. It has really helped. I thank you from the bottom of my heart. Knip.

[MyStar86]

I’m glad to hear that all went well however with crohns you can have the Zoledronic acid infusion for osteoporosis this is what my gastro prescribed as he said I couldn’t touch the pills but the infusions bypass the digestive system but help osteoporosis. I had my second infusion in January but just after the first infusion it reversed bad osteoporosis in my spine back to osteopenia my hips are still osteoporosis but I’m hopefully once I’ve had the full 3 infusions I’ll be out of the osteoporosis world. Please take care as I broke my hip with osteoporosis and broke all my ribs in multiple places on both sides……the pain is something I nor my family will ever forget but the infusions helped heal the rib fractures and stop any further fractures so there are other options for people with crohns and other digestive issues.

[superbones in reply to MyStar86]

Can you tell me did you have any side effects from the infusion? It looks like i am going to have to have the yearly infusion so interested to know how it went for you. Sounds like pretty much okay!

[MyStar86 in reply to superbones]

Ummm I am not going to lie I did have a lot of side effects with the first infusion and you must be prepared for the bone pain that does last quite a while on the first one I struggled with walking and I’m a big walker so that was a shock. I didn’t get the flu symptoms but I was very tired and drained plus I had constant nausea for months and still take anti sickness for it now. The second infusion was better only had the bone pain for a few weeks but it does affect everyone differently there is no way of knowing some people get no side effects so I wouldn’t base your decision on what I’ve said as I still continued with the infusion after the t score improvement and rib fractures finally healing so the side effects didn’t put me off but it’s an individual choice. Good luck

[MayGodBlessYou in reply to MyStar86]

may i ask, did you break hip and ribs BEFORE any osteoporosis drugs? thanks and sorry you are going through much.

[MyStar86 in reply to MayGodBlessYou]

Yes i broke my hip in 2011 when I only had osteopenia, I broke it whilst running it just cracked and that was it. Then I was diagnosed with full osteoporosis in 2015 but I refused any treatment but in 2020 that’s when I broke all my ribs in multiple paces however the pain from the breaks and the fact they wouldn’t heal I decided to go ahead with my first infusion at the end of 2021 I then had a DEXA scan at the end of 2022 and my spine is no no longer osteoporosis and my rib fractures had all healed so I went ahead with the second infusion January 2023. My hips are still -3.3 but I was just so happy the fractures healed and that my spine t score had improved so having the infusion has worked for me yes I’ve had side effects but I haven’t had fractures and the fractures is a pain that I will never forget. I hope that helps you

[MayGodBlessYou in reply to MyStar86]

good report on what's helped you, very glad to hear that part, thank you, and you help me with your info too. it can be complicated

[MyStar86 in reply to MayGodBlessYou]

No need to thank me I’m happy to help and I know how complicated it all is as the doctors only give us so much information and have tired the meds or lived a day with osteoporosis so it’s good to get advice from those that have actually suffered. I know we are all different what works for one might not suit another but I always think with the osteoporosis meds if you have been through fractures and suffered the pain you are far more likely to want to take the meds whatever the side effects because you would favour the side effects over the pain of fractures. I wouldn’t of had the infusion had I not gone through my rib’s experience plus I’ve had a total hysterectomy last year age 35 so I know my bones won’t be getting better on their own so this is my way of protecting myself against future pain x good luck x

[Knip in reply to MyStar86]

You have really been through the mill, My Star, and have obviously had a great deal of experience of living without and with the drug, so thank you for your reply showing both sides of it all. It seems to me that you are very young to have been suffering from it. Has anyone ever told you why? I hope that you will continue to improve. Take care, God Bless, and thank you for your detailed reply. Knip x

[Knip]

Thank you MyStar86 for your reply. My RA consultant said he wouldn't want to me to have the infusions anyway, because of muscle pain on top of the RA pain. I shall see how I go. I had Budesonide at the equivalent of 30mg, tapering down, of Prednisone for five months last year for a bad Chron's flare, which worked wonders but didn't help my bones. Being dairy free for so long, due to an allergy, won't have helped either. I have received so much good advice on here on here on how to get my bones into the best shape I can, and I'm very grateful for it.

[MyStar86 in reply to Knip]

Ah yes I’ve had Budesonide a few times as well and I’m sure that’s what contributed to my osteoporosis so I do understand. I’m glad you have had some good advice and can build up your bones naturally and I’m sure they will do repeat DEXA scans to keep a check on you just in case they get any worse but do take care. Good luck xx

[Knip in reply to MyStar86]

Thank you MyStar 86. Take care and stay safe, God Bless, Knip. xx

[MayGodBlessYou in reply to Knip]

dairy might not be as great as it's said to be, my former GP who was excellent has mentioned recently 'no dairy', re: osteoporosis, so it would be for good reason. i believe her so i have reduced my dairy intake somewhat.

[Knip in reply to MayGodBlessYou]

MGBY, did your GP say why? Are you are already on Calcium treatment...eg Evacal or Calcichew, or are having the Alendronic Acid injections or pills? It does seem a strange thing for your GP to advise otherwise. It can all become quite confusing, can't it! Take care, and God Bless, Knip.

[MayGodBlessYou in reply to Knip]

hi it was my former GP, i asked her generally about OP on behalf of my mother, who has OP, sorry for the confusion, so, (former) GP also mentioned: exercise, no dairy, intravenous vitamin c.