PBC Foundation

Shape your weight.........right, but only if you have energy to exercise as well!!

Doctor has refered me to a shape your weight programme, said I need to lose weight gained over the last 10 weeks. I lost weight during my stay in hospital due to AIH. I have been on steroids for nearly 3 months now, I have no appetite so am not eating much of anything, but I have still put on weight. i am not happy about this because the fatigue is bad enough without any extra weight.

I went to my first meeting on Monday, and whilst trying to explain about my condition to this health trainer all she could do was to keep on about people on the scheme who want to lose weight but have an aversion to exercise...I mean I know she has a job to do and yes she propbably does come accross some who don't want even mild exercise...but befor I had thes two conditions AIH/PBC, I used to walk/hike every weekend in the dales, go swimming twice a week and gym twice. She just did not get that i can't do exercise every day because of what is wrong..I don't always have the energy, and what energy I have has to be used for the right thing.

Any suggestions about losing weight on steroids..I am fed up. Ihave an appointment with my consultant next Thursday, and I will be asking about this as well..if she can't give me an answer regarding losing weight then i will have to come off steroids...life is difficult enough with these conditions without the added weight to carry around.

Just needed to air/vent


16 Replies

Iknow just how you feel.I was put on prednisolone in 97-quite high dosage, which was gradually reduced over months. I have remained on 5mg daily ever since, and am unable to reduce the dose further; I have a flair of symptoms when i try. Over years-and because I couldnt exercise, i slowly gained weight. Last yr i was so depressed with it all, I didnt want to carry on.It was make or break! I started on the British heart foundation eating plan, and have lost 4stone in a year.I have not felt deprived or hungryat all. Iknow how hard it is to shift any weight when any form of exercise is out of the question.I was told by a weight loss advisor that eating just 1 biscuit more than your body uses in energy per day will lead to a stone weight gain within a year, so dont beat yourself up over it. we all do the best we can.best of luck with consultant.


Hi bridgetthemidget, thank you for your reply. I have symptoms on the ammount I am on so am wondering if they will reduce the dosage? but I expect there are days even on medication we have symptoms..I call it antibody flare and I know when I have it believe me.

They want to put me on azathioprine, but there is risk of malignancy with this medication and with a family history of breast cancer I am still unsure about taking these. I am so low due to the weight gain, I was so healthy 12 weeks ago, then this....I am on a healthy eating plan which is supported by the shape your weight programme that the Gp refered me to..but there is so much food that they say we need to eat in a day, which is impossible for me to do due to no appetite..also they have no idea about the conditions I have and to be honest I think I need a specialist dietitian to help with the weight issue because of my illness.....

I will ask my consultant about these worries I have next week......I am still stuck for what questions I need to be asking her. It will be my second appointment since diagnosis..do you have any suggestions as to what I need to be asking her.




Re: azathioprine, I have been taking 50mgx3 per day for 14 yrs. Yes, I have to be aware if, for instance, my grandkids are ill -especially things like chikenpox. I have become very good -as do we all with autoimmune problems, in recognising when I need to request antibiotics and when to leave alone.I had a problem last yr, when I developed some skin lesions Azathioprine does slightly increase the risk of developing skin cancer usually after long term or high dose related. I had 22 lesions removed, all were benign.I have little or no scarring and the improvment in my symtomshas been really noticable.since being on it. I do have periodic flares but I dread to think what state I would be in without it. I would ask as many questions as you can before agreeing to any change in your drug regime. After all, these doctors dont have to suffer the consequences. Wish you all good things.


It is really frustrating this weight thing,

My weight has crept up after losing 4 stone very quickly. I am not on steroids but on azathioprione for the past 2yrs (i have AIH overlap too)

I had my cholesterol back this week and it is high at 6.9. but in this house we have a very low fat diet, I am once again going to be asked to be referred to a dietician and am going to discuss this with my gastroenterologist again.

I exercise when I can, and know that even the slightest exercise is better than none. I have been dancing but over the past few months have not been well enough and find it best to find an exericse that doesnt feel like exercise... I am definitely not a gym bunny.

It has been explained by Dr Mells that those with PBC have a build up of lactic acid in their muscles. So when we first exercise it can be very painful until this disperses.If we can get past the first bit of pain and fatigue (some call it a wall) then we can do more than we think. easier said than done sometimes, but maybe worth a try. As for questions, I would suggest you keep a pen and paper nearby you, and when ever any question jumps into your mind, write it down and ask it... we all have different things we worry about, slightly different symptoms and things we want to ask, so I and many people find the pen and paper our best friend, dont be worried about taking the questions into the consultation with you as they will be used to people doing this..

Hope you feel a little brighter soon.x


I realise how frustrated you feel about the weight gain. I had never been overweight but have put on over a stone since having PBC. I have been doing the low GI diet for a while with small success (I mean small), although this diet did seem good for my digestion so still on it. A couple of weeks ago I brought an exercise bike and this seems to have been the key. I have dreadful pain in my feet and legs and knew Id never manage any impact exercise. The first day I did 5 mins on the lowest setting and felt like a matyr to the cause, but the rest of the day my legs felt much better. Every day I have been on my exercise bike and am gradually building it up by 30 secs a day. After 2 weeks I have lost 5 pounds! I couldnt believe it!

Not saying it would work for everyone but it seems many of us were physically active before our illness and consequencely are doing much less now. So if there is some form of exercise you can manage it may help, you can start really slowly.....


Hi Conniefused,

As you might remember from the question you kindly answered for me, I too have the PBC/AIH. I am on 40mg prednisolone and 250mg urso a day.

For the past 6 months I have really been looking at my diet and how it affects my health. I saw a nutrionist and done a major detox and managed to loose 1 1/2 stone . I felt really well, not as tired etc, as soon as I lost the weight I was put on steroids which I thought would make me balloon.

I voiced my concerns with the consultant and he said avoid salt so as to avoid the water retention and continue on your diet, which i have done for 3 weeks now and so far so good, but its early days on the steroids

I am eating this everyday which can be boring but I thinks with me its a control thing


Bowl of museli (jordons in peach packet as it has lower salt)

With Soya milk unsweetend


Huge salad, leaves, tomatoes, cucumber, onion, peppers

Smoked Mackrel or any fish

French dressing (organic)


Another big salad, french dressing

Jacket poatoes

Unsalted butter


Coffee 2 cups a day


Snacks any fresh fruit

If tempted by other food, dont eat anything out of a packet (easier said than done)

In terms of excercise a friend of mine has bullied me (bless her) into sunday walks by the river, which we finish off at the pub for a coffee and toast as a treat. Its gentle and you can go at your own pace.

Hope this is of some help :-)




Thank you Linda....yes very helpful indeed...am going to write this down in my journal if thats ok x. Exercise...I am goind back swimming next week, and my best friend has just told me she has booked and paid for us some latin/ballroom classes lol....not a mover....but she is brill bless her.

Will let you know how the first class goes which is next Thursday evening..the same day I go see the consultant.

I generally do not eat anything out of the packet....but like you say easier said than done....Salt...was not told about that....but again you nreally do need to use it in cooking otherwise everything tastes so bland. I have just bought some food grade hymalayan pink rock salt. This is pure and has minerals and nutriants in it other processed salt does not.....I will use this in cooking, but not at table.

Today I have made a cheese cake....I know....it was my bday on Wed, and am having family and friends round for a buffet...there will be plenty salad also meat, not too may sweet things but all home made....I have never made a cheese cake before, but when I looked on labels in the shops the ingredients are so naughty and also preservatives...I have made my own with low fat ingredients and fresh strawberries..I am sure it will be enjoyed by everyone.

xx conniefused


Yes of course feel free to add to journal :-) Happy birthday for Wednesday!!!!

Good for you, dance classes sound so much more appealing than the gym, im firm believer in fun fitness.

Since the detox my tastebuds have changed, I was on the blandest diet ever, no salt at all no sugar and I had the sweetest tooth ever, 2-3 sugars in my tea actually it was sweetener which is even worse. Since then I can t stand tea and take coffee with no sugar. So i am not missing the salt and the fruit is giving me the sweet fix.

Keep reading them labels, its amazing how many preservatives are in the ready packed foods. Enjoy that cheesecake and buffet, all sounds delicious - got the munchies now lol



Hello conniefused.

Thought I would add to the other comments here. Excuse me if I repeat as though I have read through, I probably will forget who may have put what, etc.

Steroids - prednisolone (one I know) - in particular are drugs that can make the taker gain weight over a period of time if you are on them constantly. (I know though experience of family member years ago re these steroids used for asthma).

I understand fully with regards to you saying you are about to go on a weight loss programme as with PBC it is a vicious circle really. Need energy to exercise yet when you are already feeling lacking in it some days (I'm not too bad, it is a case of myself wanting to flag early evening really due to not being able to sleep for more than a few hrs at night - another vicious circle but....), a big big struggle.

I am not on steroids and never hope to be so so I can't really give you my experience there though as said at the start I do know about them.

I know since I was disgnosed with PBC despite not eating a great deal of saturated fat prior, I have cut down even further and find I feel a lot better energy-wise, in fact I think that is part of why I feel pretty good along with the urso that is proving to be advantageous (at present, took a bit to get off the starting block with them).

I tend to think that quality is far better than quantity with PBC myself.

I think if your gain is due to steroids then wouldn't it be fair to maybe try to cut them down with medical advice and also perhaps this is something that may take a bit of time to maybe right itself.

I do think that with PBC and just urso it is possible to lose weight as I have actually found more over the last few mths. I think we get it in our heads that we should maybe get out and about and moving to do us some good but struggle to do so and on the bad days it can be real easy (sure we have all done it, I have) to just lounge about and not get motivated to do much.

I know in my case the nights I have the itch (on another roll, 5 itch-free nights), I think I use a lot of energy moving about trying to sleep as I apparently still end up scratching in my sleep so that can't be good as your body doesn't get a proper night's sleep.

Hope this bit has helped even if a little, or added some input. One thing I do know tho' since being in the medical system these last 2yrs as I was very inexperienced prior to 2010 (!) what a doctor can say to one is by far easier than the patient actually doing/attempting that. I know if I could I'd like to give a doctor who seems to take PBC lightly or is ignorant of it the itch for 24hrs and see then what they think!

Keep us posted.


Hi conniefussed

That diet woman should understand about people like our selves who suffer chronic fatigue, we find it very difficult to exercise.

Like yourself I also enjoyed hillwalking as well as many other outdoor/indoor activities but can no long do them, I do when possible use the Wii fitness (I do the walking exercise) as well as some weight lifting with dumb bells.

You would think that the diet woman would have been informed in her training about people who have medical condition and how those conditions may prevent them for exercising daily?? anyway don't you feel guilty or get yourself down about it, the other members have giving you some great advice regarding diet and I do so hope you enjoy your swimming and dance classes :)


Hi thank you for your replies...I am so grateful for this site. That woman has been trained as a health trainer who deals with obesity....but she like many others could not give any specific diet help for someone with a liver problem or any other serious illness..yes we know healthy eating is good for reducing cholesterol...and could reduce incidences of heart attack and diabetes...but the liver needs a specific diet.

i was told by one doctor high protein low carbohydrate...and by another high carb l,ow protein...does anyone know which is right?

Today I walked my dog which she loved because not been able to do it for a while, only 20 minutes, but did it.

I am feeling really tired today..my joints hurt...my head has a mind of it's own, legs feel weak..but I totally enjoyed the walk with my dog.

Also I was researching about liver transplant....now here we go again ....what is it about doctors saying that people may not get a new liver if they are obese. My point here is why give us steroids that possibly will cause weight gain, making us what the doctors consider obese....essentially preventing us from a life saving transplant. Are steroids and azathioprine means to an end.

I am just so fed up..I really do not think that consultants know enough about these conditions. I will definately ask my consultant if there are any other patients with the same as me so I can have a chat to them....if there are not enough I will ask to be transfered to Leeds where I know there is a very good liver unit.

I still have lots to learn about PBC/AIH, but am taking each day at a time....as for transplant...I am classed as obese according to the weight management team despite how fit and healthy I was 12 weeks ago, so I don't expect this will ever be an option for me unless I can lose this steroid weight. I am keeping positive; well most days....and am looking forward to swimming and dancing next week...will let you know how I get on lol.

Have a wonderful weekend

xxconniefused (Jayne)


Went to shape your weight yesterday...the person had not checked up on what was wrong with me.....never mind, will ask coinsultant if can see liver specific dietitian on thrusday...Was so unwell sunday and yesterday, had to get a taxi to go to shape your weight and a friend had to come with. It got worse because when I got on the scales I have put on yet another 4Lbs in a week..the same last time I went as well.....I felt so deflated...I did not take part in the class...infact did not even speak to my best friend...felt absolutely disgusted and my confidence took a huge nose dive...I am so fed up..I don't eat anything I should not, except I had one very small peice of home made, low fat cheesecake for my birthday...... A typical diet for me each day is

Breakfast: Fruit salad with Total 0% fat greek yogurt, a sprinkle of seeds and a small glass of fruit juice.

Lunch: Either, 2 ryvitas with cottage cheese and tomatos with an apple or pear

Dinner: Fish or Chicken breast, no skin, grilled or poached, Potatos with skins left on and lots of green veggies OR; Salad with eggs, fish, pulses or jacket potato. I never have mayo or salad dressings.

Dessert: Either home made rice pudding with skimmed milk, or shape fat free yogurt.

Portion size for me is very small because I have no appetite...my plate size is just the side/tea plate...I do not have a standard sized dinner plate.

I am so very fed up....it has to be the steroids, but it should not put me 4Lbs per week on..I have now had to go shopping in charity shops to buy size 18 clothes, my 14/16 no longer fit.

Exercise this week includes swimming twice and a dance lesson on Thurday evening....walking my pooch...and decluttering my home..no wonder I have no energy......could it get much worse?



Hi conniefused

hope your feeling a bit better today, I think it must be the steroids thats doing the weight gain, you eat like a mouse and exercise to the best of your ability, right now Im over weight but it's purly down to me eating total rubbish, I need to be honest here, right now I feel quite ashamed of myself, I moan about my weight but at the same time I over eat and its total rubbish that I do eat, use to do exercises at home but have gradually stopped doing them.

The steroids you take for your medical condition you need and unfortunately the side effect is weight gain, Im so sorry and feel for you as its making you feel upset but its the kick in the butt I need to get my act together, I do suffer consequences due to my over eating (after yesterdays evening meal I spent the rest of the night in bed with a terrible sore stomach as well as really bad heartburn), I think what Im trying to say is that your unhappy through no fault of your own, were as my unhappiness is self inflicted through over eating all the wrong foods, so as of now Im changing my eating habbits, I should thank my lucky stars that (like you) I dont have a condition were I need to take meds that cause weight gain. I have read through the posts on here and Im going to use the advice the others have given.

I hope you are not angry at my post and please do not be insulted as that is defo not my intensions. but youve given me the push I need to "get my act together" and I thank you for it. :)


Hi Catherine69...Thank you for your reply....I have been to see my consultant today, and I am so very happy to tell you she has agreed to lower my dose of steroids. It will be done gradually but hopefully in 8 weeks I will be either off steroids, or on the lowest dose possible to manage my liver inflammation. I start Azathioprine tomorrow, which is what I expected to happen, she has also cleared it for me to have HRT patches because I am 48, had hysterectomy 17 years ago and having serious night sweats and hot flushes...

I am so not angry with your post hun lol......it's ok to speak your mind...am sorry you are unhappy though and to be honest, before I was diagnosed with PBC/AIH in April, there were many times I was exactly the same mind set as you; finally after getting made fun at in the swimming pool I went to see my GP and got referred to the NHS Health Trainers, ....like you I used to complain about my weight, but ate things that were crap.......and yes I suffered for it..and I was actually losing weight; but never in a million years did I expect to be in the position I am in now...ironic really.

Please don't be so down on yourself hun, there are some very interesting posts on here and people are very helpful.

I laughed when you said I gave you a kick up the butt lol......wishing you all the best



could you let me know how i could get on the sceam please i am a member of sun lane swimming baths under doctors referal to help with arthrightus and my weight please contact me by phone 01924371888 or 07901526860 or suemccabe54@gmail.com thanks susam mccabe 4 farne sve wakefield wf2 9ed


Hi Sue, there should be some leaflets in your GP surgery, and you can also ask your Gp to refer you to shape your weight. I no longer go because I could not lose weight on their diet. I did everything they told me and could not lose weight due to steroids and the menopause.

Good luck xx


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