Churg strauss symptoms

[bargibar]

I have been diagnosed with churg strauss vas but a lot of my symptoms dont fit into the pattern ie easily brusing and calf muscle pain arn't related to this vas has anyone else found this to be a problem?

[Jann]

Sorry not really up on CSS however I get bruses all the time it is the steriods. Are you on a high dose. I also get some cramping but it was more server before the treatment started.

[bargibar in reply to Jann]

I get the bruising from steroids alot even though only on 10 mg aday some cramping in feet but also started getting numbness in my feet. I'm going to hosp app next week and I'll speak to doctor see if he has any ideas

[John_Mills Volunteer]

As Jann has written above, long term steroids can cause skin fragility and increased susceptibility to bruising, but then any type of small vessel vasculitis can allow blood to escape from damaged vessels with resultant bruising. CSS is usually associated with late onset asthma and a blood test usually shows increased eosinophils.

John

[bargibar in reply to John_Mills]

I've had asthma for about 15 years so this is something else that doesn't really fit with CSS and I've only been diagnosed for 1 year had symptoms for about 2 I dont know what eosinophils is could you tell me please

[Tidgypud]

Hi there i too have CSS and ger tremendous calf pain , cramps and like the others have said easy bruising due to the steroids . I mention my pains every time i go to hospital but as yet no one really seems to listen . I have just seen a new respiratory doc who seems more interested so will let you know if i get any answers

[bargibar in reply to Tidgypud]

Thanks that would be good as I have lung problem due to CSS as well which is a problem if I do too much exercise which I really need to do as the steroids have put my weight up alarmingly

[HiveMind]

Hi, I was diagnosed with CSS in 2008.

Right before diagnosis both of my calf muscles completely seized up and I couldn't walk at all. As it was found that my heart had been affected by the CSS, the docs told me that the seizures were a result of this. This was just in my case though, so I am not suggesting that your heart has been affected.

Also, I used to get bad bruising on my legs in particular when I was taking steroids (been off them for two months now & I still get the bruising!).

As for your weight gain; we've all been there! Seriously tho', don't stress too much a abought the weight as there isn't a whole lot you can do about it. Whilst I didn't lose weight, swimming helped with my general fitness.

If you need any further questions answered, I'd be happy to help.

[bargibar in reply to HiveMind]

thanks for your input my calfs also seized up, it was the first symptom i had. the gp put me on high dose steroids and it went away quite quickly to be replaced by various other things. the problem ive got now is not so bad but causes a problem with too much walking. swimmings sounds like a good idea thanks

[Mumito66]

I've had CSS for the past 17 years and I have had wicked cramps in my calves which was very painful, when it got to that stage I had to take temazepam to calm the muscles down.

I've been on steroids righ from the start and My weight didn't balloon in fact due to othe external influences I became annorexic and have had 3 bouts of NG feeding to increase my weight. I struggle to maintain 8 stones and often fall between 71/2 and 8st.

I developed asthma when I was 17 and had really bad nosebleeds during my training resulting in numerous hospital admissions. My advice is not to worry too much about you weight because appart from minimal dieting you can't do much about it. Try not to let it get you down too much. Xx

Aud :o)

[bargibar in reply to Mumito66]

thanks. I was surprised to read youve had css for so long as i'd never heard of it before i got it and apart from you guys here i dont know anybody else whos got it. It must be as hard for you to maintain your weight as it is for me to try to lose some as dieting is not doing too well. I'l try not to worry about my weight but i cant help wondering if i dont try to control it where will it end lol

[Mumito66]

I'd never heard of it till I developed it and only a the maxillo facial doctors that I worked with had heard of it. You can try to go on a calorie contrlled diet but it may be difficult as steroids can increase your appetite. you also need slightly more calories than usual because you have this illness that you have to fight off. Speak to your specialist for advice and maybe ask for a referal to the dietitians.

Aud :o)

[tintinrob]

Hi Bargibar, really sorry to hear about your probs with the CS syndrome - I've got the same thing, since 2007, affected my nerves in legs and hands, my heart, my eyes, my lungs, my muscles, umm err oh yes forgetful too - but that last one could be due to all the pain pills. Re your weight gain, it's a sod keeping it off as steroid pills make you want to eat more, plus they cause (for me anyway) fatty face, neck and big belly. However I've recently lost a stone quite easily, by (1) not eating things with wheat in, (2) cutting out fructose (fruit juice, sweetened drinks) - reason is wheat makes your blood sugar soar, so your body packs it away as fat, fructose affects your appetite so you don't know when your'e full. I stick to natural fats like lard and real butter. This is as things with vegetable oil in - like most of the Flora spreads etc in the local Tescos - make any inflammation worse due to the arachidonic acid in the vegetable oil, and are a heart attack risk. Got enough probelms without needing that last one! No I'm not joking about the fats. Eat like your great-grandparents!

All the best

Rob.