Worried about soft bones

[Elisabeth]

I will try and make a long story short.

I have APS for 14 years following PE, taking warfarin, statin and plaquenil for most of that time. I am 53 and went through an early ( and very uneventful ) menopause about 7 years ago! I am telling you this because I think it may be relevant to my question. Last week I went into hospital for planned surgery on my shoulder to have a decompression (involving shaving off part of my clavicle and scapula. When the surgeon noticed I had a bad rotator cuff tear she started a repair and tried to secure an "anchor" on my clavicle but the bone was to "soft" to hold it! As a consequence she had a to abandon the keyhole and do open surgery! That's the background, my question is, can long term use of plaquenil cause bone softening? I had extremely low levels of Vit D and Prof Hughes put me on a course of very high dose Vit D but when they finished I gave been taking normal strength ones, I know very low Vit D can soften bones and I understand that certain autoimmune conditions can positively deplete Vit D in the body or is it low calcium and therefore some kind of osteoporosis but that would be brittle not soft! Wouldn't it?. I am very confused and a little scared, and currently very incapacitated! does anyone have any thoughts?. Sorry for the Lon post. Elizabeth

[MaryF Administrator]

Hi was this mentioned in passing, as this article here presents Osteomalacia

The vitamin D/calcium treatment is vital for your recovery.

arthritisresearchuk.org/art...

Others on here will have had similar and may also report their findings back to you as to their experience on their particular anticoagulants. MaryF x

[Elisabeth]

Thank you Mary, I will read it! Hard to believe I may have rickets! There seems to be a clear distinction between brittle bones( osteoporosis ie low calcium ) and soft bones (osteomalacia ie low vitamin D! And the surgeon definitely said my clavicle was too soft!

[Manofmendip]

Hi Elisabeth.

I agree with my colleague Mary.

I have bone density scans about every 3 years as I am on Fragmin. I also take Vit D and eat low fat live yoghurt too, which is a good source of calcium.

Best wishes.

Dave

[Hidden in reply to Manofmendip]

Wonder if Iam going down thi line as blood tests have shown low phosphate What next? I am so confused.Isabel

[Manofmendip]

Who is managing your APS?

[Hidden in reply to Manofmendip]

Everytime I go to Toms it is a different Dr.I am under Prof Hunt but have not met her yet.Isabel

[GinaD]

The ways to fight bone loss are indeed, nutrition, ( sometimes) medication and strength exercising. I don't lift weights or use a gym exercise machines as often as I should (New Years resolutions are hard to keep when the gym is 10 miles away over icy, snow covered roads.) But I did manage to win back some bone loss a few years ago after going on a GF diet, paying attention to D and Ca levels, and lifting weights. I went from osteopenia to " better bone density then I would expect for your age" in 2years. We're all different,but check it out with your GP and don't lose hope. I was told my then osteopenia would only get wose, never better --but I showed them!