Lupus weight loss

[Tess1963]

My brother was diagnosed with Lupus in September been ill for around 15 months he’s lost 5 stone in weight now is only 6.5 stone is very weak having difficulty walking etc he’s just started taking Vitamin D 25000 x2 a week and hrdroxychloroquine 200 mg daily been told these may take 3 months before seeing any benefits any advice you can give me thanks

[LalSD]

Hello Tess1963, very sorry to hear about your brother. The only advice I can give is for him to eat nutritious food and rest as much as he can. Lupus is or can be difficult illness. And unpredictable. If he is not vegetarian, please consider bone broth, plenty fish and vegetables in his diet if he can tolerate. Broth on an empty stomach instead of tea😇. Or similar supplements. Stay away from garlic as we read that we don’t always react well. You can google this information. Sun is definitely a no no for most of us, lupus patients. It triggers a flare. Herbal teas help me(it differs for each one of us) calm my muscles. And he must take rest if he feels tired. Otherwise it gets complicated. And most importantly, he must learn to listen to his body, as our mind is active, it is the body which is unable to follow, especially if newly diagnosed. Because we need adjusting to our new life and learn again the things we can physically do and can’t do. Hope this helps, Lale

[Tess1963 in reply to LalSD]

Thank you so much for replying

[LalSD in reply to Tess1963]

Unless there are no other underlying cause, weight loss is common among lupus patients. It just takes time to heal, I took almost 8 years to get to a bit of normality, even then have had few fall backs but i keep trying everyday. Its not easy but the key is to establish what he can do and how long for and not to push yourself to do more than you can. It is a complete lifestyle. change and one good thing is that he has been diagnosed.

[BeeManShrop]

Hi Tess Sorry to hear of your brother's condition. He is not alone though. My wife lost over 4 stone some 6 months ago (after 6 week hospital stay) now stopped at 8 stone. She lost her taste, could not swallow, could not open her mouth very wide and was sick often. Result -- she lived on Complan for many months (still does) just recently she is now taking very small portions of real food. Perhaps a piece of toast or a small meal (about the size you would give a 5 year old child). Things are going in the right direction though when we look back over the months. She is still very fatigued and goes to bed every afternoon for a sleep. Even very small tasks makes her very tired but little by little she is slowly managing to do a few little jobs like opening the post. She too came out of hospital and could only initially walk with a zimmer frame for a few metres about the house. We have worked hard on this, small walks around the village, every day. Started at 50metres every day then up'ed to 100/day and so on -- took many weeks and now she is in a wheelchair but does get out of the chair and walks (with the wheelchair as support) for about 500metres. The medics seem to have left us to ourselves recently, GP keeps referring us to rheumy and he seems to have disappeared -- no appointments whatsoever even after me asking the helpdesk twice what was happening.Tess be prepared for a long term recovery process, sadly there are no quick fixes when you are so ill. Also remember that lupus affects everyone differently so you have to find your own way. Gather as much information as possible about lupus from the Lupus site, books and the good people on this site.

Hoping this gives you some hope. All is not lost -&- chin up.

[Tess1963 in reply to BeeManShrop]

Thank you so much for replying we’ve been the same going to Doctors being referred to Rheumatology then because of Covid have had telephone consultations which are not great with the odd face to face contact I will look up more information best wishes to you and your wife

[daisydayz]

Hello Tess1963 I am so very sorry about your brother. I just wanted to share a little of my own experience with you.

I also had weight loss despite eating very well. This had been continuing gradually for about 12 months until September 2020, last year, my bmi dropped rapidly & it was decided I needed to be tube fed in hospital which I reluctantly agreed to.

I had a pretty rough time in hospital with lots of strange symptoms appearing.

The tube feeding was not particularly successful, but I did put on a bit of weight after 3 weeks, which was enough to go home & continue the tube feeding myself.. which proved unsuccessful ..so I stopped.

I had lots of different tests in hospital - endoscopy Caeliac biopsy scans xrays capsule endoscopy bloods tests etc etc.. all came back normal range. I was checked out pretty thoroughly but they could find no cause for my weight loss.

I have now put on a stone in weight.

I have upped my carbs but try to eat healthy, drink lots of water & eat something every couple of hours.

I have no diagnosis of Lupus unlike your brother, but was initially diagnosed with a connective tissue disease.(UCTD)

I am on 200mg per day of hydroxy which is being upped to 300mg subject to bloods. I also take vitD.

Someone pointed me in the direction of a little research & I read that weight loss can be a symptom or /first sign of Lupus.

Just wanted to end by saying that yes, I found that hydroxy takes a little time before seeing any benefit.

I'm sorry I can only share my experience, but the advice I would give him is please stay in close contact with his Drs.

Take care 🤞your brother starts improving soon💜

[Tess1963 in reply to daisydayz]

Thank you for replying we will just keep pushing him to eat more and hope the medication works much appreciated

[daisydayz]

I hope so too, take care both of you💜

[MorIlse]

Hello, tell the doctor, I took hydroxy for 6 months and lost 12 lbs. and my skin got darker around my neck so I was told to suspend it.I’m now on imuran and I have gained some

weight back.

[Tess1963 in reply to MorIlse]

He’s lost a lot of weight after taking Methotrexate where he ended up in hospital very ill so they left him 3 months only now starting him on hydroxy and Vit D will have to give them a go if not it’s good to know there’s other meds out there to try thanks for replying