I`m in the ongoing battle with PMR inflammation ,and Predisolone side effects . Is there a consensus about useful supplements to take . I`m already on Multi vits/minerals , vit c , vit b complex , cod liver oil . Omeprazole .
I`m worried about bone density and have been suggested alendronic acid , but that sounds quite draconian for dental work and kidneys ?
Any thoughts, help, tips would be greatly appreciated as always .
Ps Current status with PMR is 3 years now ,pred intake 8.5mg constantly tapering very very slowly .
Thank you Marek
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Marek1
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Hi Marek, well done for getting down to 8.5mgs. Can I check that you are taking Calcium and Vit D, these are the basic supplements which the GP should have ensured you were taking? It may be that you have enough calcium in your diet but Vit D is hard to come by in the winter months. Both try to help reduce the effect of pred on your bones.
As far as Aledronic Acid goes, I was also one of the wary ones but have now been taking it for 3 weeks with no issues as long as you take it as instructed. I was finally convinced by my GP, a male who was diagnosed with PMR at a young age and has osteopina and continues to take AA despite his PMR being in remission to try to build back his bones. Like all these things it is an individual choice.
Others will be along with a more scientific approach, good luck with your PMR journey.
Other than calcium and vit D there are really no essential supplements - most of them end up being flushed down the loo and making money for the salespeople and manufacturers! Just because a certain amount of a thing is good for you, it doesn't mean that loads more is better and in some cases too much is actually bad for you. Your multivits plus cod liver oil could well put your vit A over the beneficial limit so do check and it also has a decent plug of vit D.
Vit K2 is supposed to help bones - but it isn't clear how much and the guidelines for vit K dosage are actually the amount required for blood clotting, not for bones which is thought to be considerably less.
Omeprazole is a medication - not a supplement.
Far better than all the supplements in the world is a good diet - dietary vitamins and nutrients are better absorbed and utilised than manufactured artificial versions so my advice is always to spend your money in that direction!
What I do take is a probiotic to build up good bacteria in the gut. A gastroenterologist at one our Webinars said he felt Lanzaprozole and other protectors were not necessary below 10ths Pred. But if that is agreed with your health expert you have to ease dropping it, tapering that too!
Well, I take Prolia and thing is, all drugs have side effects so it's a matter of balancing possible risk. But you don't want osteoporosis, so probably the medication is a good idea since the Prednisone draws calcium from the bones in addition to any natural processes.
I also take Prolia .Have been on it for ten yrs .Now I know the guidelines say you should have a break from it but my sister is on it for 12 yrs and her consultant is happy for her to continue .Another friend has just been taken off it and put on Alondric acid but was told to be careful as she could be susceptible to a break.Its all so confusing .My bone density improved with the Prolia so I am happy to continue .Anyone think I am foolish .
It has been suggested to me by my sister in law who is a year ahead of me in her bone journey, to take K2 along with the Vit D and Calcium to stop the calcium effecting my arteries. I found on Amazon Boneregen, it has a whole list of supplements including Calcium, D3 and K2. However I am trying the food route as well as that's got to be a good way to go..
my understanding of Vit K is that it’s essential for the absorption of Vit D, my nutritionist told me this. I take Vit D combined with Vit K, in spray form so you spray it under your tongue. It bypasses the digestive system that way.
I also take collagen, not sure if it’s doing any good but my hair looks great! 😂
Hello Marek. I was diagnosed with GCA nearly 2 years ago, and as the medication seems to be the same as for PMR, I thought my experience of the medications might be helpful.
From the outset of my diagnosis I was prescribed Alendronic Acid (weekly) and Omeprazole (daily), Vitamin D and C tablets, and of course Prenisolone. The main side effect that I experienced was frequent and urgent bowel movements and diarrhea (almost). This settled down as I reduced the Pred but was probably also caused by the cocktail of meds I was taking. That said, it was manageable. I was not prescribed Vitamin B or cod liver oil.
I am now down to 1.5mg Prednisone and expect to be able to stop taking it by January. I have not had GCA symptoms for over 6 months now. My rheumatologist recently stopped the Alendronic acid recently because my Dexa scan showed I have 'good bone health', so it'spossible that my bones were protected by the Alendronic Acid throughout my treatment. I do still take Vitamin D.
The only other major side effect I had was that the Pred accelerated the development of cataracts over a few months. This turned out to be a helpful side effect because I had cataract surgery in both eyes 3 months ago so my vision now is excellent. I only need to read glasses for reading now, whereas before, my distance vision was so bad I was not allowed to drive!
Based on my own experience, my advice is to take all the meds you are offered, keep a daily log of what you are taking and how you are feeling, be prepared to give it time but do raise any side effect issues that bother you with your rheumatologist or GP. My GP spotted the GCA immediately and I was referred to the rheumatology department in hospital within 3 days. They have been fantastic in monitoring my condition and progress.
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