I was called in today to see my rheumatologist - ESR 100. CRP 34. I said over 2 years I have deteriorated - he agreed. The issues I have with medication is the side effects he claims.
He said the raging inflammation in my body is causing my drastic weight loss as the body is using up all my resources! Has anyone else heard or experiencing this?
So he has upped Prednisone 🙁 30mg again for a month (not happy, but need to walk). It's going to taper back to 5mg until biologics kick in.
In addition heart and bone density checks in Summer - I had to ask for those!
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Hessie5
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Hello Hessie. You have listed several reasons for weight loss there. The chronic inflammation , especially if any fever is involved as it often is in RA.
Secondly, long-term corticosteroids steroids such as prednisolone do cause muscle wastage. Note this is very different to the anabolic steroids used by body-builders that have the opposite effect of course.
Reduced physical activity duet RA causes loss of muscle-tissue as well. The main hazard from the prednisolone is osteoporosis, so reduce the dose as much as you can. Good luck with your biologics.
I am so amazed at how much people know about RA the drugs we take all the side effects etc etc - I learn more from this site that I do from any DRs Consultants nurses etc - you would think between us we could find a cure for the bloody disease !
Sorry to hear of your dilemma. Must be so frustrating! Have you started your IL6 biologic? The reason for loosing weight may also be due to gluten elimination(?) For me this has been evident. Weightloss is however also a symptom seen in RA. Perhaps to do with changes in ability to absorb nutrients(?)
Hey Simba. It sure has been. Starting next week on biologic, waiting to hear from the nurse to demo how to use. I have upped my eating, so eat 2 bananas instead of 1.
I am wheat intolerant too. Going to look for gluten free bread.
The month of steroids should help with some weight gain I have been told.
Yes actually I am in quite a good place. My experiment with low dose doxycycline for two months turned out quite well. Inflammation down and digestive problems more or less gone. Have started my sun therapy this week ( 45min halfnaked on terass!) Already feel the difference.
If you still eat dairy, this helps a lot with calories. Coconut fat is also good source of calories. And eggs are really good. Hope the new biologic while blocking different inflammatory agents will make a difference👍🏻Take care Simba
Yup. Not a huge amount but I didn't have much to lose. I blame the reduction of exercise leading to a loss of muscle mass. There are worse problems to have. I hope your new biologic does the trick and you are back to your fighting weight very soon.
Hi Hessie, When RA was running riot all over my body I lost a lot of weight. Went from 8st to 6st as I was really unwell with it. It took three months to come round and start gaining weight. I was also told that can often happen at first when the RA has gone out of control. My ESR was 98 and they didn't do CRP then back in 1995 but I was eating but it just didn't seem to help me gain weight till the inflammation was stable. You will stabilise too and hope it's soon. I am sure the biologics will get you back on track and you will get your weight back. Good luck. X
Thank you, you have given me such hope. The plan is to stabilise the inflammation with prednisone and the new biologic, at the same time eat like a horse. Do you mind sharing what helped you meds wise?
Rituximab infusions are what turned it around for me, Hessie. They are given between 6-12 months usually and that gives you a lot of freedom. You usually take MTX as well weekly to help it. I used to have Complan drinks to give me extra calories. One a day is an extra 300 calories approx and I was prescribed Ensure drinks. I first started on Sulphasalazine 24 years ago and it worked well then MTX alone then a couple of failed biologics (anti tnf's)then Rituximab in 2014 and I've been so much improved since that. Sulpha and Mtx alone worked well for many years but they just lost efficacy. Did something but not enough. You will find your med that helps you get back on track.
Hello Hessie, I lost weight when I was first diagnosed and it wasn’t under control. I’ve put it all back on now and some but then I’m not quite as active as before, the steroids don’t help either even though I don’t get the munchies with them! Good luck 😊
Hi - thanks for the update. As my consultant says, need to curb this inflammation - I am looking forward to getting my fat back 😌. Steroids are not good, but right now in great need.. Wishing you well. Hessie
Ive lost half a stone. The pain from inflammation always affects my appetite. So i think, in my case, i have lost the weight because my ra hasnt been controlled for quite some time on my current biologic (humira). Rheumatologist wants to change it to Abatacept so waiting for the switch to take place. I also have osteoperosis which was diagnosed before the ra but that was caused by early menopause apparently. Hope all goes well for you.
Hi Biofreak, sounds similar to me. Hopefully, I pray this new biologic works, otherwise I am going to look into alternative therapies! 🤔 All the best with the switch for you. Hessie
Yes I've heard of this.. And although I do have to work at it, I am very slim, considering I hardly move about sometimes!
I think my rheumy nurse explained it due to.. Some people and types of RA cause the body to be at a slightly higher temp. Than 'normal' people. Probably, like you say its the inflammation.
So this body at a higher temp burns lots more calories, like having to keep warm in winter.. I always seem to be warmer than most people. I call it my readibrek glow haha! (that advert is a blast from the past!)
So yes, I am sure that is why some people with RA lose weight and keep it off.
Really hope the peed helps. Have they ever tried you with kenalog injection?
I’ve just had an email from my consultant re my weight loss he’s made an appointment for me and organised bloods and a chest X-ray. I’m also in serious pain at the top of my back. I’ve had a bone density test and I have Osteoporosis also.
Good luck with everything, make sure you get all the tests you need!
So interesting thanks Nanna - I was getting paranoid somewhat as most kept coming across posts saying the complete opposite - felt I there was more to this. Thank you, take care.
Hi VeronicaF - I did the same and beginning to realise this is not just about eating well as still inflamed. It’s frustrating. I was 10st, sure not going to weigh myself as may stress myself more - I would say under 8 stone 😕. I am trying to get it back. I need a new wardrobe 😌- take care, look after yourself and thanks for sharing.
I know how you feel Hessie5, I hate my bag of bones now, I am trying hard to put weight on but its not happening no matter what I eat, and get down when I stand on scales to see I have lost yet more weight, I am going if all goes well onto new drugs soon. so hoping that will help put weight on xx
Hi Hessie
I have gone from 84 kg down to 75.6kg in ten months. As a result people keep complimenting me on how well I look.
When I drop my shirt I look very healthy, just wish that I felt the same as my eye sight has been suffering from medication but I am in good hands
Yes Hessie there is some % of RA sufferers that have weight loss and in fact stats say that 2/3 of those RA diagnosed are overweight. My problem as yours has also been weight loss. First I believe caused by AIP diet that really in the end put me in a worse metabolic situation than before the diet. Took a long time to stablize the situation with ups and downs in the inflammatory situation that with me had a clear connection to weight fluctuations. If you have a lot of inflammation l do not believe you can mend it with dietary measures you need something to put a stop to it and fast. I do believe steroids are what you need to take to accomplish this. When the situation has calmed down you can plan again. You are getting your new biologics that hopefully will change something in the ongoing situation which you have been suffering for such a long time. Best of luck. Simba
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