Good Morning, i am relatively new to this group and have found it very helpful and informative, thank you to those who respond and thereby support!
I was diagnosed with GCA in October of 2021 and immediately put on 60mg prednisolone. My markers which had been exceptionally high, so much so the Dr sent me for many other scans and tests as she felt perhaps the GCA was a secondary manifestation of something else going on. But thankfully I got the AOK in other areas. The markers were down and within normal levels within a week on 60 mg, so the reduction commenced. I had a flare in late December which put the dose up marginally and then back on track to now where I am down to 7mg and subject to recent blood results hope to go down to 6mg next week.
Just for the record, the diagnoses was based on the specific pain in the temple as well as discomfort in jaw, and a general feeling of being unwell and disorientation.
Rheumy said no point in doing the biopsy route because as soon as you start steroids it reduces inflamation and its hit and miss as to if the biopsy is taken from the offending vessel, they also did a doppler in the area a couple of days after starting the prep and found nothing significant.
My journey has been generally tolerated but many highs and lows mainly in fatigue and mood, and usual other side effects of the prednisolone. The omeprazole has also given me many side effects,. My latest challenge is significant hair loss which started 6 months in but seemed to worsen when I had to increase the omeprazole to cope with the stomach upset.
I read on this site that most people have the GCA in both temples but I have only ever had on one side and no signs of the PMR.
HOWEVER my question is in relation to osteoporosis, and I find it strange that it is very rarely mentioned here because both my GP, and the 2 Rheumatologists I have seen (due to a change in location) are "all over this topic". They wanted to put me on biphosphonates but having had a bad incident with using them some years back, I declined on the basis that my "gut" could not take all these meds.
They are now really pushing me (very hard) to have intravenous biphosphonates , the exact med not specified but they say there are a few to choose from BUT most of the reading I have seen speaks about many side effects. My last bone density in January this year gave at score of -1.5 but they fear the steroids will erode this further. If its significant to the subject of osteoporosis, I am 69 years of age.
Apologies for this long post but to sum up my main questions are:
feedback on the osteoporoses and intravenous route?
has anyone had the hair loss issue and any idea of if it is linked to the omeprazole or the prednisolone?
Many thanks for your considerations
"Paradisso"
Written by
Paradisso
To view profiles and participate in discussions please or .
Have you had a Dexascan to check your bone density recently? I have big fights with my GP over taking bisphosphonates. Just when I think I have won he brings it up again!
Osteoporosis is mentioned a lot on here,. Maybe have a look at FAQs (comes up under first post on the posts page) - under Bone Health and related posts….have linked -
" I find it strange that it is very rarely mentioned here"
That is likely to bring a smile to several faces - it has been talked about on the forum a LOT!
As piglette says - do you really NEED a bisphosphonate? That is the same sort of bone density that I had 3 months into pred. I had a reading of -1.6 after 11 years on pred, much of it at above 10mg/day. My cumulative dose is higher than most people with GCA get to but I have been fine. It isn't inevitable but to be fair it is much more likely at GCA doses. You are on omeprazole - it too can result in loss of bone density - but they don't mention that!
There are quite a few on the forum who have had the i.v. versions without problems. Everything comes with side effects - you wouldn't use ibuprofen or paracetamol if you looked at the side effects! I'm intrigued about the several options - I know of 2 i.v., zoledronic acid and ibandronate. Prolia is subcutaneous injections not i.v. (am I being picky?) but if you start on Prolia/denosumab you will probably need to remain on it indefinitely or switch to an i.v. bisphosphonate when you stop it as there have discovered there is a rebound loss of bone density in the 6-12 months after stopping which has resulted in vertebral fractures - exactly what they claim they want to avoid. If you are going to have to have a bisphosphonate eventually - you might as well have it now.
Have you tried the ROS helpline who will talk you through it all?
Omeprazole is associated with diffuse alopaecia = although you will find mixed comment online, some insist it doesn't cause hair loss, others say it does, But it is also common for people to experience hair loss about 6 months after serious illness - GCA is a serious systemic illness. Some people experience hair problems with pred - but it tends to be more changes in texture and curls developing out of nowhere!
Have you discovered the FAQs? They cover a lot of topics with links to past threads. And the Related Posts will also often show you past discussions on similar topics.
The HU search facility leaves a lot to be desired but if you are very specific and cut the search down to PMRGCAuk only it can work not too badly.
To eliminate the need for omeprazole, have you tried the coated prednisolone.? I did and no need for omeprazole. I don't know if you can get the coated version, I am in the UK and have no problem.
In case you don't see it in your research, try taking the pred actually in a big spoon of yogurt (rather than with liquid) and with a big bowl of yogurty muesli or porridge. If you do this there is a good chance you won't need omeprazole at all - unless you have another condition that requires it (And frankly O is so horrible, if diet changes are an option, they are preferable). Especially at the low doses of pred you are on, but it worked for me even at higher doses. Some of the docs try and put us on pred as a matter of course which is highly questionable and storing up problems.
Many thanks yr response which is very timely, as i have been alternating days to try and reduce omeprazole and was just beginning to see a pattern that less digestive issues on days i had prednisolone with porridge! Thanks for confiming. I will definetly try to yogurt too.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Leflunomide and tapering prednisolone for GCA, advice please
Prednisolone and Hair 
GCA Hair Loss & Skin Changes
GCA and Osteoporosis 
Hair Loss 
