I wrote a few months ago and received very helpful advice from you, thanks.
I had GCA diagnosed in September. I had my first review from the rheumatologist this week. I live in Oxford and he is very good. He is mentioned in the PMR and GCA survival guide, he is called Professor Luqmani.
I was concerned about taking alendronate (isn't everyone?). I have had a history of gastroesophageal reflux for about 15 years and used to take ranitidine and lansoprazole but had to stop as they caused colitis in 2015 so I had to take steroids.I still have gastric symptoms and I find alendronate gives me stomach pain and diarrhoea. He suggested changing to risedronate but this is also a bisphosphonate and seems to have the same side affects. Has anyone taken any other medication to prevent osteoporosis? I read about prolia which I think is new, has anyone any views on this? He said that anyone taking steroids, especially high doses, should take something.
He did not mention having a bone density screen and I felt too awkward to ask?! Do you think that it is a good idea as I could ask my GP.
Sorry to be so pathetic and any advice will be gratefully received.
Thanks, Jenny
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jennifer15
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Hello, with your reaction to the so called stomach protectors I would say the bone scan (DEXA) is essential. Otherwise, you won’t know if you actually need it or any later bone thinning is due to Pred or was there before. I refused to even consider Bisphosphonates without one, which wasn’t nice to have to do but I decided a few moments of awkwardness was worth it for my body. Turned out I have osteopaenia not osteoporosis and came in at just under the treatment recommended level. I also had a very low vitamin D level which was probably the case for years, so I wasn’t absorbing calcium properly. Have you had yours checked? You should be on Vit D and calcium as routine anyway though.
Do have a read of the post by HeronNS today called My “osteoporosis” Journey. That sums up my approach too. I have no proof yet that it has worked. The proof will be in the DEXA scan in a year or two.
Dexa results did not indicate osteoporosis or osteopaenia
I take VitD3, VitK2, try to keep mobile, prunes.
GP thinks I probably don’t need calcium (LOL what a turn around from ‘you MUST take AA’!!!!) But don’t base anything on what my GP says!!! It’s because he can’t find a calcium prep that doesn’t have artificial sweeteners in. I buy them from H&B and take when I remember. I drink a lot of FF milk, eat a lot of cheese and yogurt, oily fish and nuts.
Dexa was about 6 months ago so I’ll worry about a repeat in 18+ months
Thank you Soraya. Sorry, I had not tied you up with your post. I am still finding my way round this site. It is very helpful to have your advice and support.
There was a study in Japan that showed that 4-5 prunes a day actually helped rebuild bones as well as protecting them from loss. AA does not rebuild. Don't know if prunes would stand up to Pred though.
I've taken prunes as a supplement the last few months, on and off, but wonder if all that sugar is worth the trade off.
Another useful tip, and I think I got it from DorsetLady, is that a little yoghurt taken with calcium supplements helps the calcium to be absorbed. There has been some research to prove this is actually the case.
Ask your GP about the dexascan if you don't feel comfortable asking at the hospital - but he is a very good guy! What on earth is ANYONE doing giving oral bisphosphonates to someone with a 15 year history of reflux? There are injectable forms. Contact the NOS and discuss your options on their helpline:
Hi Jennifer. I live in Witney and have seen prof luqmani for GCA. I first saw Lorraine ONeill who works with him in clinic. I didn't want to take AA so I asked my doc for a dexa scan which he thought was a good idea and have recently had another one (2 years later) as it was recommended by the dexa team. So once you are in the system you will get looked after. It's done in a room that's just before you go round to the GCA clinic. All the best cc 🤗
Was the result of your DEXA scan OK? Did you take anything else. Professor Luqmani seems wonderful but I was hugely disappointed when I got home and read up that risedronate is also a bisphosphonate as I had told him about my gastric history (poor soul)!
There is not a support group in our area is there?
Your welcome Jenny. I havnt seen any evidence of a support group in Oxford. During the 3 years of treatment I have noticed only about 5 of us on this site going to the Nuffield for GCA. Judging by how busy the two clinics are there must be hundreds of us 😱. Have they put you on mtx as well? My dexa showed osteopenia which initially disappointed me but realised it wasn't the end of the world and the dexa team didn't push me to take AA in their write up. I take D3, calcium and k2. Keep meaning to get prunes (see write ups). Read HeronNS info it's the best. Did they do a biopsy or temple ultrasound? I initially had a biopsy but now have ultrasounds every 6 months. Keep smiling cc 🤗 💐
Professor Luqmani said mtx etc only used in cases that did not respond easily but I had been advised that it could cause more complications.
It might be good to meet up if there are even six of us in this area, just for a coffee or something.
I had an ultrasound to diagnose. I had described all my symptoms to my GP, she said to come back in a couple of months if symptoms had not cleared up. Then my son, an anaesthetist visited and said that I had temporal arteritis ( as my temporal arteries were very enlarged) and it was a medical emergency. Saw another GP who said he did not think that I had temporal arteritis but bloods were taken and when levels elevated I was referred to JR.
Yes, I was very lucky that he visited that day as we do not see him very often and I had not told him that I was not feeling well as no one seemed to think I had anything wrong.
Ps I stopped omeprazole and took ranitidine but stopped that as it caused severe heartburn/reflux etc. Since then have only used live plain yog to take my pred (ewes milk) and unless I pig out on fatty or gluten foods I have no digestive problems. If you want to read up on another of prof luqmani's patients then go to "Retailmonkeys" profile. Many years ago I had gastritis and NEVER want to experience that again so can understand your fears. Take care and let us know how you get on re the dexa scan cc 🤗
Dear Carrollee and all the kind people who wrote to me,
I saw my GP who said it was good that my consultant had changed my medication.
I then pointed out that the new medication was also a bisphosphonate with the same side affects. She therefore said that she would prescribe a 6 monthly injection.
I asked about a DEXA scan and she said that whatever the result I would need something to prevent osteoporosis. I pleaded and said that it would be so helpful to know my reading from the start. My GP eventually said that I could have a DEXA scan but I felt drained and as though I had been unnecessarily demanding.
So be it, see if I get one and if so what the result is.
The cynic in me says they were convinced by some excellent marketing by the drug company and the way they have been taught.
I follow a medics' info site - and yesterday there was an article (by a doctor) saying that doctors no longer read journals to keep up to date. So all the newer stuff about bisphosphonates (and anything else) passes them by - unless they work in the dexa unit (I hope).
Hi Jennifer sorry you had such a draining experience. I agree with PMRpro that if normal why would you need a bisphosphonate. The dexa team didn't push me to have one with osteopenia. They should recommend another one in two years if still on steroids so you will be looked after. All the best cc
Thanks. I did ask my GP but she said that the 1mg does not come in a coated form.I do not know why I did not ask for the 5mg to be coated. I will do so when I next request my meds.
Hi Jennifer, your GP is WRONG if you live in UK. I do agree they have only been available for a relatively short time, but they are now available! Suggest your GP look it up.
I was taking AA on doctors advice not for very long though made me very nauseous stopped straight away. Have been taking Risondrate since no problems with side effects.
You are sensible. I do not know why I kept taking something that gave me tummy pains. Hopefully the new medication will be OK until I get the result if the DEXA scan.
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