i have behcet ,for 5 wks now have not been hun... - Behçet's UK

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i have behcet ,for 5 wks now have not been hungry and have lost about 20lbs. Has anyone else suffered this, i think this could be a flare up

cazzzz profile image
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cazzzz
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andreafm profile image
andreafm

Hi there

I can't say for sure it is a flare up but I do lose my appertite and feel nauseous at times. Even the fatigue of Behcets can make you feel like not eating. Also, I don't know what medications you are on but quite a few of them have stomach issues as side effects.

I lost a lot of weight a few times and the Doctor gave me Ensure drinks which are full of vitamins and like milkshakes...perhaps you could ask your Doctor for some

Hope this helps you

cazzzz profile image
cazzzz in reply to andreafm

thanks for your reply andreafm I hope to see my consultant on Tues so i will ask him for some Ensure drinks. I don`t feel nauseous with it I am just not hungry. The meds I am on are inflixamab, methatrexate,folic acid,Nefopam,Omeprazole,Pramipexole, Rosuvastatin, Topiramate,Asprin, Matrifen, the only new one is Nefopam which I have been on for 3 wks and not feeling hungry started before that.

goodlife profile image
goodlife in reply to cazzzz

Sorry to hear that you are having a rough time.

I always try to find humour whenever I can with this illness, and its so annoying that the more curvaceous BD sufferers such as myself (I could lose 20lbs no problem) NEVER ever lose weight. I have lots of slim friends on here and they seem to be the ones to lose weight. By the way cazzzz a warm welcome I don't think we have chatted before. Jill x

cazzzz profile image
cazzzz in reply to goodlife

Hi Jill Iam having a rough time at the moment and as you say a good sense of humour does help, but some times things do tend to get on top of you. I have suffered with BD now for 12 years my worst attack was about 7 years ago when I had a brain lesion, not very nice, could not walk probably and seeing double not untill seeing someone in a wheelchair with no legs, made me think that there is always someone worse off than you..Carol xx

andreafm profile image
andreafm in reply to cazzzz

You have got quite a lot of medications there, but as you say the loss of feeling hungry started before the new one. Do the take the omeprazole 2 hrs before the other medications?

I have found this does seem to help and worth a try if you are not. Other than that if it isn't the medications, the fatigue is pretty high on the list to make you not feeling like eating.

You can think of it aa if your body is using so much energy being unwell and trying to get better, that it doesn't want to eat as eating uses up a lot of energy to digest food. The Ensure drinks will keep your system going without overtaxing it and they are very easy to digest.

Hope you get on o.k with your consultant tomorrow

Andrea

Sachamw profile image
Sachamw

Hi

I am exactly the same, but I also get extreme nausea at certain times to, I had a two week period where I was vomiting constantly and even the sight of a plate of food in front of me would make me sick and I lived on ice lollies and frozen yogurt, I also suffer with horrendous tongue and mouth ulcers to the point I cry even when try to swallow and my tongue gets so dry like sandpaper and then the skin all comes off and it's left raw, which doesn't help with the zero appetite, at that time I went down to 92lbs, I've always been slim but it was extreme, and I have struggled to put it back on, ( I've since been told my body can no longer digest gluten ) so that deletes a lot too, but milkshake and chicken broth are good and I eat tonnes of blue berries and watermelon,

I take a lot of meds like you, I last week started azathiropine ( which I may be one of the few unlucky ones. Again) who maybe hypersensitive too) as having difficulties with some side effects, also on, colchicine, plaquenil, Arcoxia, fruosemide, pantaprozale, amitriptylne, coedine, Tramadol, MST 30mg, steroid drops maxidex, steroid inhaler for mouth ulcers, tempazepam, and ambien for when have insomnia

Life is so hard with this illness I hope you get something which gets you back on track,

Sachamw profile image
Sachamw

Hi

I am exactly the same, but I also get extreme nausea at certain times to, I had a two week period where I was vomiting constantly and even the sight of a plate of food in front of me would make me sick and I lived on ice lollies and frozen yogurt, I also suffer with horrendous tongue and mouth ulcers to the point I cry even when try to swallow and my tongue gets so dry like sandpaper and then the skin all comes off and it's left raw, which doesn't help with the zero appetite, at that time I went down to 92lbs, I've always been slim but it was extreme, and I have struggled to put it back on, ( I've since been told my body can no longer digest gluten ) so that deletes a lot too, but milkshake and chicken broth are good and I eat tonnes of blue berries and watermelon,

I take a lot of meds like you, I last week started azathiropine ( which I may be one of the few unlucky ones. Again) who maybe hypersensitive too) as having difficulties with some side effects, also on, colchicine, plaquenil, Arcoxia, fruosemide, pantaprozale, amitriptylne, coedine, Tramadol, MST 30mg, steroid drops maxidex, steroid inhaler for mouth ulcers, tempazepam, and ambien for when have insomnia

Life is so hard with this illness I hope you get something which gets you back on track,