weight

[NannyAlli]

Has anyone else NOT lost weight b4 DX ?

I no it say weight loss is a sign But was wondering if anyone has been dx with out weight loss ?

[vivdunstan Volunteer]

I never had weight loss. I don't think it is a diagnostic sign of vasculitis, or at least not my form of it (cerebral).

[BooBoo39 Volunteer in reply to vivdunstan]

Hi Viv , interesting I did lose weight two and a half stone in about 2 months, noticeably and frighteningly so that prior to diagnosis, cancer was mentioned as a likely cause before they could ascertain anything else. As you are already aware Viv I too have CNS Vasculitis but as we know amongst the different types and individuals the condition affects people differently. At least when i started on steroids and its weight gain i had some ground to work with Ha Ha

Joanne

[JacquiM Volunteer]

No prior weight loss for me either pre diagnosis. I lost weight whilst in hospital but have put loads on since (diagnosed March 2011) but am losing weight slowly now

Jacqui

[Hidden]

I never had any weight loss before I was diagnosed, but then after I started taking steroids I have lost about 5kg in 2 weeks. Then it all went back to normal and now I expect to get fatter.

[Ayla Volunteer]

I didn't lose weight either, pre diagnosis. I had read it was an early sign of vasculitis but it didn't happen to me!

Ayla

[HiveMind]

No prior weight loss for me either. I wish!

[John_Mills Volunteer]

John lost a lot of weight while he was waiting for a diagnosis but he could not physically eat and hardly drink because of the enormous ulcer on his soft palate. It was the size of a 50p piece. He was also confined to bed and could not even walk to the loo without help. I think he lost about 12.5 kg. But once his treatment began he soon regained his weight and also put on more weight.

Susan

[cambs13]

Think you have to take into account, differing aspects of vasculitis.. Interesting to know what the inflammatory markers are doing, ESR and CRP blood tests. Possible as these go higher as the disease process is getting out of control then the body has to compensate and unfortunately the other end also means that appetite is diminished. At this stage weight loss occurs. I did lose weight, prior to diagnosis and finding that my kidneys were under attack, my markers climb high and my appetite disappeared. I also stopped drinking alcohol as it no longer tasted the same, still haven't resumed. Put a little weight back on since treatment started nearly four months ago, but on the whole out of the 20 kilos I lost over the proceeding year as this disease was coming to a head, I've put back on maybe 4 kilos. Fortunately no skinny person to start, so have a lee way. Pam

[cedric]

I did not loose weight but gained it have steaderly lost but not as u notice still the same weight for the last 5 months

[BronteM]

Lost weight in patches before DX. I would lose several pounds, then it would pile back on again. I was usually rather pleased though - didn't see it as a problem at the time!

[stevedmcglynn1]

In the period July to November I lost 10 kilos. Diagnosis in November 2012 was Giant Cell Arthritis and Takayasu Disease.

[tracynoe]

I had a huge weight loss I lost >45kilos in 6 months and it still took another year before vasculitis was even considered. Steroids only slowed the weight loss and it has only been in the last two years that I have put some weight back on.

[Wellsie]

I lost 3 stone in 6 weeks when the disease was at its most active

[Lync]

No weight loss before DX with Churg Strauss. In August 2012

[JaneLE Administrator]

HI, I have MPA, and lost about a stone and half in 3 months leading up to diagnosis. I put it down to not feeling myself and therefore not eating properly. Looking back, I think I was eating pretty normally, so suspect it was the MPA.

Good luck.

[rrahman]

They said I had lost weight...but I don't think I did before I went into hospital were I was misdiagnosed with tuberculosis and pneumonia before identified with having vasculitis.

Whilst I was at the hospital I needed a blood transfusion and remember nothing tasted nice ans couldn't eat anything and I have a huge appetite! I lost 3 stones whilst in hospital in 2 months. Since I've been home I've put 2lbs every week and put on 1 stone.

I'm also 26 and so the cyclophosomide I only had 4 infusions because I haven't had any children as yet. But I've prepared to put on weight as i read it seemed really common. I just pray and think that once its more stable can do bit of walking or swim. I think Its a good idea to concentrate on trying not to fall ill. But I have to add that I'm really swollen all over too and developed cushings syndrome....and so my face looks like an inflatable balloon! Understandably my whole family are really worried and I couldn't even recognise myself as it changed my whole shape.

R

[rrahman]

Forget to add...I have wegners granulomatosis vasculitis. ANCA c positive Feb 2013.

Aalso I was in a coma for a month. I'm definitely feeling hungry on the hour every hour since I've been home and it doesn't seem to matter how large the portion is!

Put on weight out.