Does anyone with pbc suffer with severe leg cramps....

[Ducker]

Does anyone have chronic vitamin D issues

[Hidden]

I sometimes get leg cramps but I get foot cramps every night/ morning, without fail.

[jenny66]

I dont get leg cramp, but do take cramp in feet every day and night. Doctor put me on quinine sulphate, which was great, stopped the cramps completely. But after 2 weeks i had to stop taking it because of really bad side effects.

[Hidden in reply to jenny66]

Hello jenny66.

Yes quinine is supposed to be good for cramps. I had a friend who used to drink tonic water prior to going to bed and she said it did help. Maybe your prescription was too high a dosage?

[jenny66 in reply to Hidden]

Hello Peridot, sorry i just read your message, i was on 1x200mg of quinine nightly. Gp seemed to think that my liver wasnt coping with the drug, as it took 2wks for the side effects to start

[Hidden in reply to jenny66]

I was having a look at what side-effects one could acquire from taking quinine and they are quite lengthy. I did notice one stated that there could be 'hepatic' changes so I take that to mean it could alter the LFTs. Know certain medications can have an impact on the LFTs (antibiotics apparently can temporarily).

Did you ever think to maybe take half the dosage to see what happened.

[jenny66 in reply to Hidden]

Had a discussion with gp about taking a smaller dose, but we both decided not going down that road.

[sillybilly]

Yes I do , it's really painful at times . I take a-cal , not sure if it helps but still get pain x

[sillybilly]

Sorry meant Ad-cal x

[liz57]

i used to get terrible leg cramps but found if I drink lots of water i t doesn't happen .

[Hidden]

I don't suffer with any noticeable cramp, but I do have vit d, deficiency and rhumy prescribed 20,000 units 3 times a week for 2 months then will drop to 1000 units a day maintenance dose. This levels were routinely checked on my appointment , for aching bones and faitgue after gastro said it was not related to my pbc.

[Val02]

Yes I do. The doctor will give you quinine tablets which help a lot and fine for your liver.

I only stopped taking them when I went on hydroxychloroquine for inflammatory arthritis as it it contains quinine as well.

[Junolee]

Yes, I do. I have been on medication for it for 2 years, now have to take a tablet every month for osteoporosis as well. Have attended endocrinologist (yearly visits). Next dexa scan in November and they'll see how medicine is working, might have to increase dosage or injections.

[Julez1961]

I suffer from cramps really severely most of the time it is confined to my legs but sometimes for an unexplainable reason it affects my entire body and I cramp so badly am screaming in pain.

I take Magnesium tablets that have helped dramatically.

[Batatis]

Yes I did before my doctor prescribed me the osteocare (calcium, magnesium, zinc, vitamin D) once daily.

I am not sure if cramps are related to PBC though! I thought they were related to lack of magnesium.

[Hidden in reply to Batatis]

Hello Batatis.

Apparently the causes of leg cramps are unknown. I think anyone with kidney problems can find leg cramps more common and also people who have imbalance of salts.

Expect other things could cause leg cramps too but I don't think PBC myself.

Just an idea maybe try cutting down further on salt in the diet, that might help?

[Oidra]

I too, get leg and foot cramps but prefer my quinine in tonic water.

I was tested for Vit D but was ok.

[Mickey1964]

Ducker,

Leg cramps is a sign if an iron deficiency and a common issue with PBC is Vitamin deficiency in general as the liver metabolize them from your food. Most people and doctors don't understand that you have to take organic iron not Farris along with iron you have to take Calcium and vitamin D3. They are dependent drug companies know this as now calcium contains D3 you must also take an absorbable calcium like citrate and if you take are eat large doses of vitamin C it will burn off your iron so try not to eat mega in winter months when most people are Not exposed to sun to make their own D3. There is a strong amount of data out there that points to Vitamin D and the lack of it could be the cause of PBC. Makes sense seeming that the largest saturation of people with PBC are in gloomy parts of

United Kingdom! Talk to a doctor and get on a regiment you will feel better!

[Hidden in reply to Mickey1964]

Hello Mickey1964.

Now I've not heard about iron deficiency and leg cramps. New to me.

I have in the past had iron deficiency and the only symptons when I have been quite low (had low iron on 3 seperate occasions over the last 15yrs), this was a bit of shortness of breathe. Last year when I was said to be a bit low in iron the reading was in the low normal so technically within normal range but the GP wanted me to take a short course of iron. I wasn't deemed bad as I had no symptons at all. I am pretty active and energetic as I do not suffer from fatigue with PBC only night time itching.

Now the problem with iron and also calcium is that one can contradict the other as I found out. Iron can be a bit harder to absorb if the diet is high in calcium.

I don't think that Vit D deficiency has anything to do with causing PBC. I've in the past been fine with Vit D, just had an on the line reading at diagnosis but given I had 'probably had PBC a few years' according to the hospital doctor then that would explain this. At present I do not appear to have any problem with Vit D.

In PBC it is the fat soluble vitamins that can be harder to absorb but that adds up as in PBC due to a compromised liver and the bile ducts under attack, there would be less bile flowing adequately to act like a detergent on fats in particular and thus fat soluble vitamins would be compromised also.

I know for many many years it has been said that Vit C helps with absorbing iron in the diet. Apparently the richest source of iron is found in red meat like beef. I bought cast iron frying pans a couple years ago as that can add iron to food, in particular tomatoes can absorb the iron being acidic.

Personally I am not for taking vitmain and mineral supplements without adequate reason myself. I am also noticing now that in the UK a lot of processed products that are based on flour (certain biscuits I've noted for eg), like USA already do, the flour is being enriched with certain elements (ie niacin).

[Hidden]

Have you tried drinking tonic water (a good quality one that you can get) before bed to see if it alleviates this?

Sorry I cannot help re Vitamin D deficiency as I was said to be a 'bit low' in 2010 the year I was diagnosed with PBC but the following summer when I had a recheck it was perfectly normal.

I try to get out in the sun as much as possible never being a sun lover even in winter months as a bit is quite good too.

[Ducker in reply to Hidden]

Doc told me to sit in sun for at least 30 min a day (to absorb vit D) however I broke out in sun blisters and then hives now my skin looks like dry leather. Sun blocker makes me feel like I am being suffocated....

[skywalker]

My feet cramp. Most days

[mumofthree]

I don't get leg cramps but do get cramps in my toes.