Hello community
I have had a bone density score returned at -1.8 which technically means I have osteopenia a slightly higher risk of developing osteoporosis. I have been advised to take Alendronate once a week.
Can anyone advise if they have problems with this?
Hi Sarah...........I have been put on them twice but had to stop as they upset my Stomach. The thing is when you take them you must not lie for 30 mins. I found them hard to swallow(even though they were small tablets) and think they are what made my stomach problems now.Not saying it will affect you the same way so give them a try and see how you get on.Hope this helped a bit xx
Oh thank you. Yes it did help. I already get upset stomach with the Myfortic acid I take and just think this may exacerbate things x
Hi Sarah
Hope this finds you as well as poss!!!!
Are you still on myfortic (myco sodium)? Am now on myco cellcept & my upper GI conditions are flaring....so am wondering about trying myfortic instead....but am concerned myfortic may make my IBS flare up (just when cellcept has got the IBS settled). I understand these 2 forms of myco are pharmacologically very different.
If you feel up for giving me any tips, I'd be v grateful...but no hard feelings if this in't a good moment
XO
Hi I have been taking this for over a year and it does make me nausea worse - I do also get an exasibated unwell feeling - nothing drastic but under the weather. Apart from that its fine. It is a bit of a nightmare not being able to lie down until you have waited the 30 mins and then eaten - especially when you are feeling grotty. Take care.
Thank you for your feedback
Hi Sarah74
Are you taking oral steroids? If not and you haven't had a classical low trauma fracture, I don't understand why you have been prescribed an oral bisphosphonate. Alendronate or Alendronic acid is generally only prescribed if you have diagnosed Osteoporosis or you are taking regular oral steroids and have a T score of -1.5 or greater. If you fit either of those categories then being prescribed it is fine. If you do need to continue with a bisphosphonate then ask your GP to prescribe Actonel 35mg this is a branded drug and not a generic version, the generic version is Risedronate. Actonel is much kinder to the gastro/oesophageal tract and should cause less side effects, it's the one I take following 6 vertebral fractures caused by long term steroid use and my T score was only -1.5. If you are not on steroids and have not had low trauma fractures I would clarify with your GP why you were prescribed it, if its on a just in case basis you would be better making sure you have a calcium rich diet and adequate vitamin D as you need this to absorb the calcium from your diet, again supplements are generally only taken if you know you are deficient, your vitamin D can be checked with a blood test of your 25 hydroxyvitamin D and your calcium level from a bone profile blood test. I hope this helps
Karula
Hello Karula
Thank you for your reply. I also note your useful information on the kinder drug as I already have stomach problems.
I have recently have the results from a bone density scan and my T score was -1.8.
I have also been taking oral steroids for 20 years about 10mg per day.
Sarah
Hi Sarah
Most definitely a good idea to be on bone protection as you are on long term steroids and at a dose of 10mg. Two other options for you that would completely bypass the stomach issue for you would be to either discuss the once yearly Zoledronate infusion, this is given for 3 years or to discuss the relatively new but very effect Denosumab injections, these are given on a 24 week basis.
I hope you get something sorted that is tolerable for you. Maybe your GP or Rheumatologist could refer you to your local Osteoporosis Specialist Nurse so that you are getting the best option for you. Zoledronate is administered in a hospital setting but it only takes 15mins to infuse and Denosumab in initiated within the hospital but depending on the hospital policy you will have either your first two injections at the hospital and then subsequent injections at your GP surgery, some hospitals only do the first injection and then all the others are at the GP surgery,
Good luck and I hope you get something sorted soon.
Karula
I hope you manage to get something sorted with your GP Sarah.
I am ok thanks, been diagnosed for just over 2 years now but had SLE longer than that. I take Hydroxychloroquine, Prednisolone, Azathioprine, Aspirin, for the SLE,inhalers for Asthma, vit D for deficiency and B12 injections plus the Actonel for the bones and for my pudding I take Pantoprazole lol. I have my ups and downs like everyone but I work full time as an Osteoporosis Specialist Nurse, have my cats and dog to look after and a busy life and I think its keeping a normal life that keeps me going, I swallow my pills get on with my day and when my SLE is really bad I do curse it and hate it but I do try and just focus on doing what I want to do. I must admit that the Aza is really helping it is becoming my new best friend! So on the whole although it has been an up and down 2 years just like everyone else has, I have my job, my pets, my family and friends and SLE hasnt rocked my sense of humour or my zest for life. Thanks for asking and I hope you are ok too.
Karula
Hi Karula
Ah an Osteoporosis Specialist Nurse hence the wealth of information on the subject!
I work full time too as a insurance loss adjuster. I play badminton 3 times a week and try and keep to a healthy diet and drink little. Oh and try and get lots of rest, doesn't always work though.
I am 39 and was diagnosed when I was 18, so Ive now had it longer than I haven't. I take a cocktail of drugs, pred, Hydroxychloroquine, Myfortic acid (which works better for me that Azan), bisopromol, ramipril, frusomide and an anti sickness drug.
Like you I try to stay positive and as busy as I can.
Sarah
Hi Sarah
Keeping busy is good, maybe like you being busy is a good way of putting SLE in the cupboard and getting on with your life, I do appreciate thats not the way everyone copes, we are all different. I try and keep healthy too, I don't drink, for some reason I went completely off that before the SLE was diagnosed properly, I don't smoke and I'm veggie as well and walking my dog helps me to keep active. Like you I don't get much rest and I should work on that but I have always been the same. Insurance is not something I always get to grips with so hats off to you, I will stick with bones lol. Let us know how you get on with your GP this week, fingers crossed all goes well.
Karula
Hi Karula
I hope you've had a good week and are keeping well.
Just out of interest what type of dog do you have?
I saw my GP on Thursday, she was great straight away said that didn't think it was a good idea for me to take a drug that is going to give me heartburn when I already suffer. She is referring me to have the intravenous drug you take once a year, maybe you could give me a bit more information on that one?
Sarah
Took alendronic for a few months. Didn't get ill but was frustrated at the 30 min wait for my morning cuppa. I also kept forgetting to take as you only do one day a week. My rheumy told me that it can damage the oesophagus if you lie down. I was scared to bend down to pick up the dogs bowl! Over the top I know, but I stopped taking it
Anyone with uctd diagnosis for now?
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