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PBC Vit D now getting bone pain

marieharris67 profile image
10 Replies

I visited my GP in Nov last year complaining of extreme muscle pain in my arms & legs, itching and tiredness no gastric problems at all. After doing bloods he called me back to say really high LF results. He referred me to see a general medicine consultant who would look at both issues LF & muscle problems!!!!!! Whilst waiting for my appointment to come thru I had more bloods done at the GP surgery just for a healthy heart check. I was once again called back for LF abnormalities. I seen a different GP this time. She was so concerned about the liver function levels that she referred me to see a gastroenterologist on a urgent 2 week referral and couldn’t understand why the other GP had sent me to general medicine. She told me to forget about my muscles until I got my liver sorted out. I was diagnosed with PBC by gastro and put on URSO and questran. I also went to see the general medicine guy and he said he couldn’t understand why I had been sent to see him. So I think he felt sorry for me and said would run some vitamin test as a Vit D deficiency could be causing muscle pain. It turned out I do have a deficiency in Vit D and put on 20,000 iu 3 times a week for 7 weeks with a blood test to check my calcium levels after 4 weeks. I’ve now been taking the vit D for 4 weeks and since then have started to get bone pain in my fore arms,wrists, above elbows and above knees and swollen lumps on my wrist bone it’s almost like RSI. I’m wondering if this could be caused by the high dose of Vit D. I’m worried for my mobility and feel movement in my arms is getting limited. I also get very slow cramps in my arms and legs when I relax in bed. I had my bloods done today and waiting for results for the calcium levels. Sorry about the long message but I’m worried and wonder if anyone else had suffered with this.

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marieharris67
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10 Replies
ninjagirlwebb profile image
ninjagirlwebb

Are you on any statins for cholesterol? Those meds cause muscle pain for some. I did 50,000 iu Vitamin D weekly for a month before. It was fine.

marieharris67 profile image
marieharris67 in reply to ninjagirlwebb

No I’m not on statins. My level were raised but GP didn’t want to put me on them yet.

ninjagirlwebb profile image
ninjagirlwebb in reply to marieharris67

Sorry to hear you have bone pain; hope the doctors will get to the bottom of it for you.

mjk98 profile image
mjk98

OMG we have the same symptoms they gave me vitamin D 50000 to take 1 pill 12 weeks and than 1 a month it stopped working my bones are killing me I was sent to rhuemologist he tested me 3 times for lime negative lupus negative the only thing that helped was the predisone but I went off if it because it was making me manic I couldn't sleep etc.. I also cramp constantly ...let me know if you get any answers and I will do the same

marieharris67 profile image
marieharris67 in reply to mjk98

Have u ever heard of Myositis? I came across it and all my systems fit into this. Check it out. Your predisone sounds like a nightmare. I hate taking meds to start with without them sending u crazy 😪

JaneIng profile image
JaneIng

Magnesium helps with muscle cramp and pains. My doctor said 'SlowMag' helped a lot of her patients. walmart.com has the best price. I also take Epsom salt bath. Soak at least 20 minutes. It also improves sleep quality.

God bless!

marieharris67 profile image
marieharris67 in reply to JaneIng

Would u need to ask dr about taking these?

JaneIng profile image
JaneIng

These are over the counter supplement, you don't need doctor's prescription.

ninjagirlwebb profile image
ninjagirlwebb in reply to JaneIng

But to be safe, should check with doctor any OTC meds or supplements.

JaneIng profile image
JaneIng in reply to ninjagirlwebb

It's always good to check with your doctor :-)

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