Posted , 7 users are following.
My doctor has suggested that I take prolia. I have rheumatoid arthritis and take methotrexate, sulfasaline, and prednisone 5mg. I also have osteoporosis of the spine. 1 am scared of all of the side effects of prolia
0 likes, 13 replies
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Nefret mary42336
Posted
I've been on Prolia (denosumab) for 4 years now. I haven't noticed any side effects at all.
Do you have a diagnosis of PMR or GCA? If not, you should find more help on the RA forum.
Anhaga mary42336
Posted
https://patient.info/forums/discuss/browse/osteoporosis-and-osteopenia-1650
There are ways to help bone density besides the medications. Even if you need the medication because you have dire bone density it's a good idea to do all the other, natural things so your body has material with which to build new healthy bone.
Elijo Anhaga
Posted
I agree Wholeheartedly! Too much medicine, although it is needed often, appropriately! I have mild ostopenia, and have for years. I dont even take calcium, my blood level is high (normal high usualliy), and I do believe much of it is not even absorbed. Calcuim rich food is the important thing,at least for me, and many others I'm sure.
Anhaga Elijo
Posted
I don't know how useful it is to know you have a lot of calcium in the blood, but wouldn't it make sense to get the things which would enable that calcium to be utilized by the bone building cells? All I know from my reading is that most important are Vitamin K2 and magnesium.
A rheumatologist I encountered at the bones session I went to a our local hospital actually said she didn't believe in calcium supplementation, that getting enough Vitamin D was more important. Unfortunately she kind of undermined her credibility with me as she knew zip about Vitamin K2 and spent 95% of her share of the presentation time describing the correct way to take "her" medication - which was AA. Nor was she interested in offering advice to me when I told her I had a very high level of D, just said this hardly ever happens. Well, duh!
EileenH Anhaga
Posted
Anhaga EileenH
Posted
Not asking for me, as I have no idea about my calcium level and am not about to ask for more tests. But isn't a high level very rare, and wouldn't you have other symptoms which would trigger investigation?
Elijo EileenH
Posted
Several years ago mine was a little high and the doctor was concerned and took tests, but nothing negative showed. Mine averages around 10'
sharon35553 mary42336
Posted
I was scheduled t get my first Prolia injection tomorrow and cancelled. My Dexascan showed very abnormal scores, I had early hysterectomy at 40, now 64 and at high risk for fractures but after reading all od the negatives, very low positives from hundreds of reviews I decided not to get it. I will eat the best I can and take supplements but will not play roulette with the side effects it can cause. Many have gotten worse pains and wound up in hospital, many have had infections and other nasty illnesses even cholesterol went up high enough to need meds t control it, I dont need nor do I want this.
Good luck to you and I hope you make the right decisions, if there are any we can only be our own advocates and trust our own judgement.
Sharon
FlipDover_Aust mary42336
Posted
My GP was insisting I have it "as a preventative", and I did have a couple of shots before I did some research and then decided I didn't want to have it.
BUT - my DEXA scan showed I have NO bone density issues, so I don't actually need it.
LIke all things, you need to weigh up the benifits and make your own decision.
Nefret FlipDover_Aust
Posted
I don't think I would now take anything that was described to me as 'a preventative'. The DEXA showed spinal osteoporosis, I've been unable to take other biphosphonates, so Prolia was suggested. It has reversed the osteoporosis and I'm now in the normal range.
Anhaga Nefret
Posted
I've reached the position that where possible the bone meds should be avoided and I think Flip and I share the concern that they are too easily prescribed by the doctors as preventative meds, even for people who haven't even had a DXA scan. It's been shown that if one is reasonably healthy, if bone thinning is not extreme and there are no fractures, the natural treatments are far preferable. For someone in serious condition there is a place for the bone meds, although diet, supplements and appropriate exercise should also be part of the treatment prescribed, hopefully with a view to eventually being able to discontinue the drugs without risking relapse of bone density.
Nefret Anhaga
Posted
Yes, I agree they shouldn't be handed out like sweeties - in some cases I've gathered that it's an automatic response when steroids are prescribed.
As for me - I take my prescribed supplements regliously and do what I can regarding diet. Exercise? It's a no-no, I can barely walk a few yards some days. Other days I can go as fast as a geriatric snail wearing clogs.
Anhaga Nefret
Posted
Haha. That's why I always say "appropriate" exercise. Having spend several weeks with a broken leg I do have an inkling - only an inkling - what it's like to be incapacitated. There's always something, even those chair exercises people do....