Sticky Blood-Hughes Syndrome Support

Worried about soft bones

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

7 Replies

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

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

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


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!


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.



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


Who is managing your APS?


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


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!


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