I am newly diagnosed with Lupus and have been on hydroxychloroquine for about 6 months now. Since my diagnosis and the medication ,I have noticed that I am very sensitive to food that I haven’t been before! I’m not sure if it’s the medication or the lupus or just a coincidence but I seem to be pretty fragile now, with lots of foods making me very unwell! Is this a common side affect? Any advice would be much appreciated! This is all still very new to me and at 24, I’m finding it all quite mentally hard and overwhelming dealing with the diagnosis!
Thanks in advance,
Becky
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Becky1995
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I never had any food issues except the steroids made me crave carbs a lot (though I love food so much I tend to ignore any issues I have). Feeling fragile is probably just your mind and body getting used to the diagnosis and medicine.
I completely understand how hard it all is, especially to be diagnosed at a young age. I am 16 and have had lupus for almost 2 years. I struggled a lot dealing with the thoughts that I would miss out a lot as I grow up.
You will get used to it and it will get better. You’ll still have bad days but they will be less and less frequent.
😊
Hope it all improves and goes smoothly.
Always here for a chat (anything not to do revision) 😉
Oh wow, 16! Yeah, I have the same thoughts and fears, just being able to do normal stuff people that my age do, is hard! I have to sleep for a day to recover or just can’t do it at all! And because it’s invisible, people just don’t understand!
Aww yeah, I was on steroids for a bit! The hunger was unreal!
Thank you so much, I will definitely take you up on that offer! Your support means a lot! 😊
HCQ gives me silent GERD. So my food problem and stomach issues with foods are due to the silent GERD. I take Zantac every time I take a pill. Talk to your doctor. The test for GERD is just breathing into a bag.
Best of luck to you. These are lovely people on this site. I’m sure your anxiety is a little high. Please share. Don’t keep it in. That’s not healthy.
All great advice given to you and the knowledge we are all here to support in any way we can I hope helps you. 🥰
I was diagnosed with Lupus 6 years ago but have evidently had it all my life. I didn’t know and couldn’t understand why I couldn’t do a lot of things my peers did or keep up with them physically as a teenager. But I still managed to live an active youth hill-walking, living and working for 10 years on small Scottish Islands with a Rayburn for heating, a generator for electricity, no refuse collection and no transport. I loved it. So don’t let the condition stop you. Your body will soon tell you when to rest so listen to it, but otherwise do whatever you fancy to the best of your abilty.
I remember at 21 having a flare whilst working, although I didn’t know that was what it was at the time. I felt flushed with red cheeks, had a throbbing headache and felt nauseous so asked my boss if I could go home early. She looked at me and said “If I didn’t know you better I’d think you were coming it! You look the picture of health with rosy cheeks!” The butterfly rash! If only I’d been diagnosed then I’d have been able to tell her what my problem was. 🤷♀️
As far as intolerances goes, I find I can be intolerant to all sorts of things and more so when I’m suffering with stress or anxiety. I saw a Naturapath (Jan de Vries) shortly after I was diagnosed. He told me there was no point doing an allergy/intolerance test on me because with Lupus you can be intolerant to dairy products one day, gluten another and tomatoes the next. So I have tried to identify what foods/drinks upset me and avoid them completely during flares and keep them in moderation at other times. The idea of a food diary is a brilliant one.👍🏻
Anyway, I hope something in all my ramblings is of help to you and I wish you well and hope you feel better soon and go on to have a full and very happy life. Don’t let the Lupus hold you back!
Thank you so much for your honesty and story! It’s so comforting to know you’re not alone! I’ve only been on here for a few days and I already feel so much better and so much more supported!
So interesting to learn how the intolerances change day on day and with your flares! I hadn’t even thought of that! That makes so much sense! It’s all a big learning curve Isnt it? I’m trying hard to gather all information I can, in order to help me carry on with my life normally!
Your support means a lot! I’m hoping I can provide the same support and kindness you have all shown me! X
So glad the support is helping you Becky. That’s what we are all here for - to support each other. It won’t be long until you are offering advice and support yourself drawn from your own experiences. In the meantime keep us posted with how you get on. Hugs. 🤗 Spottyx
Wow! I am lentils too. I used to be able to eat absolutely everything. My GP tested me for celiac disease in the end. Although that didn't show as positive, he said I was gluten intolerant. However, it doesn't explain the rest of the foods so I just avoid them. Good Luck + let us know if you get some answers x
It’s a random one isn’t it! But I have never been so ill as the last time I had lentils! I’m the same, I used to be able to eat everything! So frustrating!
Thank you for your advice! I will definitely keep you updated!
Hi Becky! I’m with you. Had a doc ask, what allergies do you have? My answer...these days I feel allergic to everything.
I don’t think it’s the hydroxychloroquine. Allegra/fexofenadine once a day does help some. It may make your eyes dry but has very minimal side effects and many benefits IMO. Onions, garlic, beans, lentils, dairy, unprocessed gluten are all known lupus triggers. I call lupus the fun police disease. It takes away a lot of enjoyable things in life and leaves you wondering what you did wrong to make this happen. It’s not you. Your new intolerances to food are real. And by intolerance, I mean swelling, bloating, diarrhea, rashes, regurgitation, nausea, sneezing, fast heart rate.
Something that works for me are smaller meals. Everything in moderation. Staying hydrated. I also have reactions to additives in medications so keep an eye on switching brands as well.
Hope this helps! I do not want to cause you any more worry than you already have but please know that this is common. It takes time to adjust and figure out what works for you.
Thank you so much! You have no idea how much this helps!
I had no idea that those were all normal triggers! That makes so much more sense to me now! I am also allergic to saccharin, the sweetener, so I’m guessing that comes under the additives bracket!
I’m so grateful for your advice and support! Im definitely taking it all in and trying to work out what is best for my body!
It feels like hard work at the moment but like you say, I’m sure I’ll adjust in time!
Hehe, I can definitely relate to the ‘fun police disease’ name! I think I might even start referring to it with that name now!
Your comment really made me smile and feel so at ease, so thank you! 😊
My digestive problems started with acid reflux which caused a lot of weight loss. An endoscopy showed scarring from the ulcers in my oesophagus which has narrowed it, taking many foods out of my diet.
I think it’s a matter of finding your own trigger foods. In my case, foods which don’t aggravate the reflux such as my once beloved coffee, anything spicy or acidic. Then there are the foods which get stuck at the end of my oesophagus and can’t get into my stomach: mainly meats and sometimes fish. I have to be wary of stomach ulcers too, I understand that it’s best for lupus sufferers to avoid alfalfa. On the whole,I need soft food of any kind.
Having gone from oesophagus to my stomach, it’s now approaching from the other end! A colonoscopy has shown diverticula higher than they are usually found, and consistent with someone who has been seriously constipated their whole life(not me)! I’m due to have Anorectal Physiology Investigation next month because my muscle tone has been found to be weak, causing embarrassing accidents.
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