Weight loss with Vasculitis

[M3LZY]

I can't understand why I have lost weight since having vasculitis. Yet I'm snacking between meals to try and put some weight on. Can anyone explain why this happens please? Many thanks ❤

[zoe69 Administrator Volunteer Vasculitis UK]

Hi M3LZY,is your Vasculitis under control?

One main symptom of Vasculitis is weight loss. If your Vasculitis is active it could be interfering with you gaining weight.

Have you tried moderate exercise? Gaining muscle mass is a good way of increasing weight.

[eh66 in reply to zoe69]

I would agree - I lost 7.5 kg when my Vasculitis was at its worst. Basically your body is breaking down the protein and peeing it out. My urine was bright orange though at the time I didn't realise why. Once I started on steroids I went the other way and couldn't stop eating which quickly became 7 kg of fat. After that I can understand why people on steroids develop type 2 diabetes. Now remission my weight is stable again.

[M3LZY in reply to eh66]

I've got no treatment which worries me. My heart feels under strain. It seems to suddenly drop at times. With chest pains and twitching.

[eh66 in reply to M3LZY]

You have a Vasculitis diagnosis? Your GP is aware of your situation? You have been referred to a consultant? You are receiving treatment? I don't know anything about your situation but it would seem to me that the answer to first question is yes then it should be yes to the remainder. My personal experience that you can go down hill pretty quickly without appropriate treatment. I ended in A&E and hospitalised for about a week.

[M3LZY in reply to eh66]

I was privately diagnosed so my GP will have the notes. It's down as diffused vasculitis. But nothing else has been done. Just awaiting 72hr results. Oh and a referral to long covid clinic. Which is taking forever. I suffer anxiety and depression. My gp said lets refer you to LC clinic and find out whats mental health and what's LC. Yet my diagnosis is tgere along with Costochondritis. I'm feeling scared and vulnerable tbh.

[M3LZY in reply to eh66]

I was privately diagnosed so my GP will have the notes. It's down as diffused vasculitis. But nothing else has been done. Just awaiting 72hr results. Oh and a referral to long covid clinic. Which is taking forever. I suffer anxiety and depression. My gp said lets refer you to LC clinic and find out whats mental health and what's LC. Yet my diagnosis is tgere along with Costochondritis. I'm feeling scared and vulnerable tbh.

[Blondie in reply to M3LZY]

I have GPA since 2005, all the meds I've had, have put weight on. Also with your heart, I would see a doctor about an EKG. I found out that I have A-Fib which is from the GPA or meds, just check it out for your own peace of mind. Had slight chest pains and seemed it was an irregular beating, also weight loss. I had no idea but checked it out and glad I did. Best of Luck and hope treatment is right around the corner for you.

[M3LZY in reply to Blondie]

Thank you. Because it's come with post/ long covid consultant said it will go on its own 😬 I'm not liking how my heart is. I had sinus tacicardic and eptopic beats with covid. I feel its changed. I had an ecg monitor for 72 hrs over a week ago I'm awaiting results. Feels like a very odd flutter now though. Plus on walking again.

[M3LZY in reply to Blondie]

When did you find out you had AF was it some time ago. I just feel like what's happening to me is pretty aggressive. Blood vessels break in my eyes a fair bit. A long with a host of other problems.

[Blondie in reply to M3LZY]

I thought I had covid back in March 2020, but when I ended up in the ER in Sept 2020 my covid test came back negative. I ended up in hospital for several weeks due to my A-Fib that was diagnosed than, I thought it was a relapse from covid but I guess I was wrong, no one knows what causes A-Fib. I also get fluttery of my heartbeat, it comes and goes, but the group on FB said that A-Fib can come and go quickly or it can stick around, mine is sticking around sorry to say. I believe that waiting for all these test results, stresses us out. Sorry to hear about the host of problems but most of us have several problems pop up but hopefully the heart won't be one of them. Keep positive thoughts and stay strong, plus prayers go a long way.

[M3LZY in reply to Blondie]

Many thanks x

[Ciaomario in reply to Blondie]

Ciaomario Do many people with vasculitis have af.They found this with me, when I was having another test.Also i lost slot of weight before I was diagnosed ,then put a lot on when taking press.

[Blondie in reply to Ciaomario]

I thought it might but I've put it out there to the FB vasculitis page and not many came back with A-Fib. I've had GPA since 2005 and just this last Sept. I noticed I was losing a lot of weight and SOB was more noticeable, and I was still on 5 mg of pred. Now that I've started taking heart meds plus 15mg of pred I've put all my weight back on which is not a good thing. Sorry to hear this about you, but with vasculitis I know you are a warrior, will handle it like me. Best of luck in your journey.

[M3LZY in reply to Blondie]

Thank you it's so tough x

[Oakwillow in reply to zoe69]

I am seeing weight loss in my relative, who is recently diagnosed. I can see she has lost a lot of muscle and will have to work to get this back I'm sure. Have you been given any dietary restrictions or can you eat plenty of protein?

[M3LZY in reply to Oakwillow]

I'm trying to eat more protein and snacks between meals. Nothing is happening for me. My thumbs and forefingers have a lot of muscle wastage also my arms. Pretty much everywhere tbh.

[eh66 in reply to Oakwillow]

I rather suspect unless Vasculitis is under control your relative will struggle to gain muscle mass. Also muscles don't grow themselves just by eating protein, you actively have to work the muscle groups, which is difficult when Vasculitis is attacking your body. I found high doses of steroids stimulated my appetite and led me into consuming a lot of empty calories.

[Frewen1]

Have had opposite experience ... I’ve put on a stone in 10 months since contracting GCA and am mortified. Pred-induced sudden onset sweet tooth, constant grazing impulse, no willpower... deadly combination

[Oakwillow in reply to Frewen1]

that is hard for you I'm sure. Wishing you well

[M3LZY in reply to Oakwillow]

Thank you

[eh66 in reply to Frewen1]

That was my experience too - I put on 7.5kg in about 6 weeks. I was glad to be off Preds.

[Warralife]

I felt nauseous for a few months, lost a stone, was exhausted, pee was orange (blood, but I didn’t realise) and I kept getting tight, pulled calf muscles. No other symptoms. I just thought it was menopause. Routine blood tests showed 12% kidney function. The next day it was 5% and I was blue lighted to Renal ward. As soon as I started on the meds, my appetite came back.

I’m not saying you have kidney issues, but I do think you need vasculitis/rheumatology investigations.

Hope you get sorted.

[M3LZY in reply to Warralife]

Thanks, I think I need investigations too. I'm 50 so perimenopausal. Can I ask did the flesh disappear between your thumbs and forefingers. It's only since contracting covid.

[Warralife in reply to M3LZY]

I hadn’t gone through the menopause when my vasculitis kicked off. I just put everything down to pre-menopause.

Fortunately, I haven’t had Covid so can’t answer on the flesh growth. I just worry that if you have vasculitis and you need a treatment plan, by delaying it, further damage may be taking place.

There were many discussions a year ago on the Vasculitis UK Facebook page about COVID symptoms being very similar to Vasculitis. We wondered whether there would be a whole new influx of vasculitis sufferers. Many of us were already concerned about our Rheumatology appointments being delayed and it sounds as though this may be what’s happening.

[M3LZY in reply to Warralife]

I feel a delay with LC clinic. I'm like I need help now. Goung to call my GP Monday. Saying they have a duty of care. My heartrate appears to be spiking again. No idea if this is part and parcel of it. Also chest stinging and burning over my heart, arms, throat tightnessand pain in my back. Knee,hip and elbow and jaw pain. I wish I could believe it would go on its own. But I'm not feeling that right now.

[Warralife]

Bless you. I had aggressive vasculitis treatment to get on top of the damage to my kidneys and although that was successful to an extent, I, like many others suffer from varying degrees of joint pain 24/7. It’s mainly my knees, feet and sometimes hips but used to be elbows and shoulders too. I’m glad you’re going to push the GP. Hope you get sorted.

[M3LZY in reply to Warralife]

Thank you. You're a very brave bunny.