Can you tell me your experiences of vasculitis,good or bad?

Hi all,if any have positive or negative experiences of vasculitis,multi system etc,please can you let me have your info,much appreciated,I am trying to gather info. from people who have vasculitis for my daughter,who is awaiting multiple biopsies,for possible multi system vasculitis.thanks in advance,

Sandy.

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  • Hi,,I have Livedo Reticularis,,till very recently i did not no this was Vasculitis,,i was Dx with this 6 years ago,,then my skin got covered in a terrible spotty rash,,three years after living with this hell..DLE was Dx!! The problem i have with it the circulation is very bad for me,,chillblains (raynauds) in toes and feet.

    The problem also for me is very bad appearance of skin,,Livedo is more pronounced the colder i am,,purple ,,reticular in pattern patches,,all over legs,arms and torso. when i was Dx,,i was just told it's a capillary problem,,no cure ,,no nothing,,at the time when i looked it up lupus was listed,,no one thought to test me untill 6years later!! I often wonder if i had been put on Hydroxy 6years ago instead of 9months ago then the DLE would never have got so bad and i would have much less scarring from the Lupus!!Livedo and Lupus scarred skin for me is awful,,i hate the way my skin looks,,i have to keep my legs covered most of the time,,they are a real mess now.

    I hope you can gather all the info you can,,and all helps your Daughter.

    Good Luck.x

  • Hi Jinny I also have quite painful toes and hands from raynaulds,also my legs from the knees down often feel ice cold.

    I do not have lupus,but have syjogrens,I think i am very fortunate,although the rhummey I saw told me that i still have the risk of getting lupus.

    I often feel sad that my daughter has so many health issues,luckily she is a fighter she never gives in,I suppose she has to,she had twin 3 year olds ,a stressful job in management,and to top it all,she is the main earner in the household.

    I understand what you mean about the terrible scarring,my daughter is scared from the neck down her legs are quite badly scared,but i have to say,now she is on lots of meds,her skin is looking better that it has done for about 4 years,bless her.

    I know that most lupus sufferers also have other conditions also,as far as my daughter goes it never seems to end.

    She will hopefully get some answers in the next few weeks regarding vasculitis,thank you for your input,it is much appreciated.

    Take care,Sandy

  • Hi really sorry about your daughter, all I can say is I've had multisystem problems including vasculitis , and it's not the most positive thing pain is the worse thing it's affected my bowel bladder etc have a read of my blog. Xx

  • Hi there,thank you for your reply i shall have a look in a bit.take care,

    sandy.

  • Hi Sandy, sounds like your daughters rheumatologist is on the ball and is getting the right tests done :-) I am sure by now you have read lots on the internet and know that multi-system vasculitis isn't great news, but it's not all bad news either. I have cerebral vasculitis, raynauds, lupus and sjogrens.......sadly, I waited for 6 years for the correct diagnosis and now live with the pre-exisiting damage of the condition (mobility, bladder and bowel issues). It does not stop me from living my life to the full....I have turned a very big negative into an equally big positive - I volunteer for my local lupus group as well and working part time and I raise awareness of the disease(s) whenever I can.

    On what organs is your daughter having biopses done? I hope that she doesn't wait too long for a firm diagnosis and I am sure with you as a dad it will not be the case! Tell her to keep a diary of what her trigger factors are and try to avoid these when possible, although, it isn't always easy. Good luck and let us know how she gets on. Lorraine :)

  • Hi Lorraine,thank you for your reply,

    I must say I realised a few days ago that i had the silloette of man where the picture on the site goes,I am a female,but I can see why you thought I was a dad,it did tickle me,but it was my mistake ha ha,I now have to figure out how to change it ,easier said than done,I'm useless with computers.

    I am glad you have turned things around for yourself,I can only imagine how you feel is I do not have lupus or vasculitis ,my daughter was shocked when she saw the renal consultant,it was to much to take in,I offered to go with her,but she said no,i found out later that she didn't want me to go,as she felt I had enough to deal with (recovering from breast cancer surgery),I told her im fine,I worry more about her,bless her.

    Anyway when she sees the consultant again I am going with her,bit of support, also she doesn't know where the biopsies are going to be from.

    My daughters new renal guy,is going to discuss her case with her heart specialist and neurologist that she will c next week for the first time.

    The consultant said she will be prodded and picked etc over the next couple of months to hopefully get her answers.

    Sorry for rambling on a bit,I tend to get carried away,it's nice to talk to people who have similar problems.

    Thank you again,Sandy,

  • Hi Sandy,

    I have cerebral vasculitis which causes my food to stay in my oesophagus and not go into my stomach. This makes me vomit every night as any food I have from lunch onward just gets stuck and the only way is up not down after hiccuping and belching.

    I also have Raynaulds and Syjogrens Syndrome (part of the mixed connective tissue disorder) that I have been diagnosed with.

    The lupus is attacking my lungs but I remain positive and I am always available to listen to friends with their problems. This helps to keep me sane. I try not to focus on me, myself and I (lol).

    Your daughter if she has the energy should try and remain positive and do all normal things. I still go out for lunch with my friends during the week and I go to a leisure centre to a toning suite for exercise and I am meeting people from different backgrounds.

    I have friends who understands and some who don't but I treat them all the same

    God bless you and your daughter

    Praying all the biopsies will produce positive results

    xx

  • Hi Maureenpearl,

    Thank very much for your input,my daughter is on the go 24/7,she works full time,has 3 year old twins,goes to the gym when she manages to find some time to herself, like most people who have had a lot of steroids she put on a bit of weight,bless her, she is on a calorie controlled diet and the weight is slowly coming off,she was put on new water tablets by her heart specialist and she lost 11 pound in 2 weeks, just shows how much water her body was retaining, hopefully she will get some answers soon,like many people on here, she has been dealing with many medical issues for years before even getting a partial diagnosis.

    Stay positive, take care.

    Sandy

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