RA

[Naju84]

I have been on tocilizumab for 5 years, I’m trying to lose weight but it’s so hard, as I don’t go to toilet much.! May once or twice a week. Does anyone have problems with going to the toilet? I always have a personal trainer but this weight doesn’t seem to move. I do 100k steps a week. Can anyone help me with this toileting problem please as this is stressing me out very much.

[Bootoo]

Think you need to speak to your GP, what works for one person doesn't always work for another so we can't really advise what to take

[helixhelix]

Some people do just have very slow bowel transit time. Twice a week is within normal limits, especially if you don’t eat much fibre. It won’t affect your weight.

You coud consult a nutritionist to see if they could assess your diet and make recommendations.

[Naju84 in reply to helixhelix]

Thank you, It never occur to me to consult nutritionist. My diet is good, I eat lots of veg and fruits. That’s why I’m more concerned because eating habits are good.

[Brushwork in reply to Naju84]

Sounds like a good diet… but you do need different types of fibre. Porridge works for me, but we are individuals and have different bodies.

[helixhelix in reply to Brushwork]

Prune juice is my “activator”!

[Downtime]

If you’re taking drugs for pain such as cocodomol this can cause constipation. Even paracetamol does for me..

[Brushwork in reply to Downtime]

Me too

[Allije]

Yes I agree with Downtime and Brushwork. I've taken Tocilizumab for many years and just recently pared back on daily paracetamol because I'm feeling quite a bit better after new hip and I couldn't not believe the difference in my bowel habits.I was totally unaware that a low level analgesic would cause constipation for so many years. To be honest I felt an idiot for not considering the paracetamol as the source of my constipation. But on the positive side - there was an easy solution to my problem.

I do hope you find a solution soon as I know how uncomfortable this can be.

[Wobbies]

If you look on the Zoe website, there is a blue muffin challenge. They give a recipe for blue muffins which you eat then check transit time through the system. Then, depending on the result, they give advice. Not tried it but may be a place to start.

[shazbat]

Hi Naju I have been on Tocilizumab 5 years and I have put 5 stone in weight on. I have asked on the FB RA websites and the majority of Toch users are having same problems. So after numerous debates with my specialist he conceeded that they now believe it can Increase your weight but only, he said by about 12 pounds. I wouldn't accept that, now after my insisting my weight gain is used to toch he believes it may have switched off my metabolism. So he is going to try biologic number 5. I also have problems going to toilet, my stomach is bloated within an hour of getting out of bed. So they are now checking for IBS and Colitis. The drug also increased my cholesterol from 40 years at 3.8 to 6.7 so now on statins. I have not fried food for 40 years. I have never ever drunk full sugar drinks, I have had skimmed milk since it first came out. So I get irritated when people advise me on diet. Oh and I can eat a plate full of veg for my tea. These biologics have no real history it was only when I was insistent about weight gain he decided to look into it. Then I read a study I think from Thailand. Out of 3 groups, 2 of which had toch either mono or with another drug. There was a major increase in patients gaining weight in the toch groups. Hope this helps.

Sharon

[Amandajane64 in reply to shazbat]

Ive been on tocz for 6yrs and i have also gained about 5 st, ive have followed ww and sw losing just under a stone and half each time then the weightloss stops and i start gaining again. I eat a fairly healthy diet, cook from scratch and watch portion sizes. This really messes with my mental health but its either be fat or bedridden without the drug. I no longer take pain relief if i can help it because it plays havoc with my digestive system. I use cbd capsules instead. Have you heard of grapenuts? Its a cereal a bit like all bran, very high fibre, very good for getting you moving. I add it to homemade cereal bars as well as eating as a breakfast cereal. Can i ask, do you think the drug has altered your facial features? I look at pics of me 6yrs ago and ive altered so much in the face.🤗

[shazbat in reply to Amandajane64]

Yes it has altered my features I have big jowls and my face is puffy and my skin is dreadful I hate any pictures. My specialist has got sick of me harassing him. My bloods are good but this is damaging me. Cimzia made me incredibly ill My bloods were great but the RA was attacking my lungs. He is now going to try one beginning with S I think it's Secukinumab. I see him on 31 August so will find out. I'm angry about my cholesterol as I have always kept it low. They keep testing me for diabetes but I don't eat anything sweet so I'm fine. We are the guineau pigs for these drugs they should listen. It's not all about reducing pain it's about having a life and hating myself is not conducive to a good life. Thanks for tip about grapenuts. I also use CBD capsules. I wi update you all when I see the specialist.

Take care

Sharon

[Amandajane64 in reply to shazbat]

Yes im the same plus my skin is awful. My cholesterol high and my bp, plus always show im pre diabetic. Im gratefull for not being really poorly being on tocz but im no longer confident bcus of my weight and looks. Ive had the " weight" conversation with my rheumy but always deny its the drugs.🤗

[shazbat in reply to Amandajane64]

Don't let him get away with it tooany patients are saying the same. This study proves it I showed my specialist this.

Study showing details of weight gain compared to other treatments

[Amandajane64 in reply to shazbat]

Thanks, will bring subject up again when i eventually get an appt.😁

[shazbat in reply to Amandajane64]

Good luck I will let you know how I get on.

[Rokosaki]

Drink plenty of water as part of your diet, that always help me.💩👍🏾

[creakybones]

I had been on tocilizumab for about 4 years but was advised to come off it because of repeated chest infections. I too suffered weight gain but all the Ra meds do that to me. u would also advise to go back to your Doc and gets something to help with your bowel problems as mist painkillers constipate.

[Green230461]

Prunes and cherries are my go to foods. Keeping Andrex in business