I'm New, anyone got Vaculitis because I have!!!

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Jojo 65
New Member


Date Joined Oct 2008
Total Posts : 3
   Posted 10/2/2008 11:16 AM (GMT -7)   
Hello everyone, I joined this forum because I saw a link to vaculitis,but have not been able to find any further information, I have been diagniosed with Churg-Strauss Syndrome and I think most of you will say whats that,It forms one of the types of vasculitis and is very rare,until June of this year I was a very healthy woman, walked miles, swam, went to keep fit, well that soon altered as my immune system started attacking my blood vessels nerve and muscle, I have been lucky because it was diagnosied before it did any major damage to lungs or Kidneys, I am having treatment which is high dose steroids and infusions of an immune suppressing drug ,I know people with Arthritis and Lupus can get a form of vascultis and wondered if any of you had any imformation. My main problem is my legs I cannot walk more than a few yards without my muscles start aching, my feet have nerve damage and are part numb, I am tired all the time, My life has come to a stand still and the emotional part is hard to take.

coffeefiend
Regular Member


Date Joined Mar 2004
Total Posts : 139
   Posted 10/2/2008 6:24 PM (GMT -7)   
Hi Jojo, sorry to hear you aren't feeling well. I have something called eosinophilic gastroenteritis (I am HLA-B27+) and have excess white blood cells in my digestive system and sometimes in my blood. This is in the same category as Churg Strauss and often a precursor.

My heart goes out to you - I remember feeling like an unplugged electrical appliance. How long have you been on the steroids? They do work and you'll feel better soon. I remember the weakness and fatigue as being the worst of it. How long have you been diagnosed? Write to me and let me know. I have included a couple of links for you. Take care! the Coffeefiend

www.vasculitisfoundation.org

www.cssassociation.org


Jojo 65
New Member


Date Joined Oct 2008
Total Posts : 3
   Posted 10/3/2008 7:00 AM (GMT -7)   
Thanks for the reply Coffeefriend,it is nice to talk to someone who knows something about the desease, most peole have never heard of it, and I was one of them,I started feeeling unwell in June this year,finally went into hospital at the end of July,because my blood was  so abnormal, they were looking for infection in a major organ and of course found nothing, I was only in 48hrs before I was diagnoised with vasculitis and was put on 60mg a day of steroids and I did feel better almost straight away,I am now on 35mg and have been for the passed month,everytime they try to reduce it I get a flare up and they increase it again, I am also having infusions of Cycolphosphamide an immune suppressant, I have been to hospital today to have that,I don't seem to have any ill effects from it, my bloods are coming back down, but it is the muscle pain in my legs when I try and walk more than 50yards, and my main fear is that they may never recover,I have been such an active person and now rely on my Husband and family to take me everywhere. thanks for the links I did try the CSS assiocation and tried to join the group but for some reason the site kept rejecting my form,I will try again later.
Has your problem been stabilised? and are you off steroids now? Thanks again Jojo :-)

coffeefiend
Regular Member


Date Joined Mar 2004
Total Posts : 139
   Posted 10/3/2008 6:44 PM (GMT -7)   
Wow, Jojo, you have had a rough go of it. I did prednisone for a month when I was first diagnosed. I would recommend being patient with yourself, my best guess is that it will take a while for your body to rebound from this. I still remember being too weak to grocery shop by myself and had to do housework in 15 minute increments. If you are scared of this, ask your doctor straight out what to expect. I did see a "Mystery Diagnosis" about a woman with Churg Strauss (she had more lung problems )and she did make a full recovery.

There is a book called "Patient" by Ben Watt (from the music group "Everything but the Girl") who also had CSS - you should be able to find it on Barnes and Noble. I am thankful for you that you got diagnosed so fast, it took me four years. Do you run fevers? Along with digestive systems and a white count around 20,000 I ran a fever close to 100 degrees every day for five months. And here I am 8 years later!

Depending on others is hard but you sound like a wonderful person, and you would do the same for them without a second thought, right?

I'm usually a busy person so when I feel poorly I keep busy with low energy stuff.

TRY:

Christmas shop online

Write your holiday cards now

Go thru old magazines and clip stuff you want to keep

Sort and organize household paperwork

Have someone bring you drawers from bureaus in the house to sort one at a time

etc...

I use the recycleable cloth bags from the grocery to set up different projects to work on. You even have someone else fill a bag with a project and you can work from you couch or other comfy spot. The bags are moved easily from place to place in the house.

The lack of energy is tough to cope with , but if you are someone who needs to be busy, this is a creative way to do it.

I did a short bust of steroids this summer and since it looks like I have RA , I am not sure what they'll give me.

You take care and don't be so hard on yourself, OK?

The Coffeefiend


Jojo 65
New Member


Date Joined Oct 2008
Total Posts : 3
   Posted 10/4/2008 8:28 AM (GMT -7)   
Thanks for all the advice Coffeefriend, I am not sure were you are from, but I am involved with the shoebox appeal, this is a christian charity it involves send christmas paper covered shoeboxes filled with small gifts to children in places like Romania,and Africa,so like you say somedays I can do housework and others I sit and knit, hats and scarfs ect.I will have a look for  the book it sounds interesting, I don't get high fever but always have a temp on my off days, 8 years wow you are a fighter thanks for giving me hope things will improve :-)

coffeefiend
Regular Member


Date Joined Mar 2004
Total Posts : 139
   Posted 10/4/2008 5:19 PM (GMT -7)   
That is awesome about making things for charity! And the best way to cope with inconsistent energy levels is to tailor your activities to your energy levels.

Now that you know what you have, it will be easier to cope in the future. You'll know early on if you are having another flare and can treat it right away.

Just take it a day at a time, and be kind to yourself!

I live in MA. :) Have a great day!

The Coffeefiend


coffeefiend
Regular Member


Date Joined Mar 2004
Total Posts : 139
   Posted 10/4/2008 5:52 PM (GMT -7)   
http://www.amazon.com/Patient-True-Story-Rare-Illness/dp/0802135838

Hi Jojo, here is the link for the book I told you about.

:) the Coffeefiend

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