Ill all the time

[torfruda]

Couple of years ago posted on this site.Consensus was I may have churgh strauss.However doctors say my bloods dont indicate this.Recently spent 3 weeks in hospital with respiratory failure flu and then had to have stent fitted in blocked left coranry artery.I havent been well since.Im still wheezing,chest pain,joint aches,extreme fatigue,gerds,hiatus hernia,visual problems sinus problems,extensive bruising,dizziness,low mood and insomnia not surprising really.Im taking a cocktail of blood thinners antibiotics and steriods. Any body have suggestions whats going on.By the way my mother died of wegeners,my sister is being checked for vasculitis and my nephew is showing similar problems.

[Suzym2u Moderator Vasculitis UK]

CSS EGPA is extremely rare so it’s important you are seen by doctors who have knowledge and experience of CSS.... if your doctors say you do not have CSS have they suggested or found out what you do have?

[torfruda in reply to Suzym2u]

Hi thank you for your response.No being treated for severe eosophillic asthma with one doctor .Heart problems with another doctor and im told im just unlucky to be so ill.Forgot to mention no sense of taste or smell.Hole in septum,chronic sinus problems as well .rgds

[Christophene47]

Hello Torfuda,

After what you have been through, no wonder you feel ill. But many of your symptoms do suggest polymyositis rheumatica ( no blood test to prove that); giant cell arteritis ( your visual problems, coronary artery problems), sinusitis, low mood etc. which may be all related to an inflammatory disorder (bruising can be caused by prednisone and blood thinners.) That you were in respiratory failure implicates your lungs which is also associated with Wegener's.

It may be time to ask your doctor to refer you to rheumatology, or again, if you have already been. Sometimes blood test results and symptoms don't match up. If you are on steroids,some doctor thinks you have an inflammatory condition. You haven't said how long ago you were in hospital. Maybe you are still recovering?? Maybe side effects of your meds? Be sure to drink plenty of fluid to help with the dizziness and be careful about falling.

I am sure you are due for follow up after your hospitalization and ask to revisit the rheumatology issue.

What is your dose of steroids? That would still be the first treatment for any type of vasculitis or rheumatoid condition in any event, and you should be seen by an ophthalmologist.

I am positive on blood test for C-ANCA vasculitis, but my rheumatologist thinks it's PMR and GCA. I did have a few minutes of vision loss, left eye, and an ophthalmologist ordered duplex doppler ultrasound of eyes which revealed central retina vein blockage (there is only one) of affected eye. Luckily, the vision came back and I guess the blood flow leaving the eye via vein was blocked, but found another route out, I hope, because if blood flowed into back of eye vitreous fluid, thé pressure could lead to glaucoma. So important to preserve vision with good eye specialist.

I have been feeling horrible, but in last 10 days have perked up. I stopped 2 medications and feel better. Mood much better than before. So never give up hope. I hope you have someone checking in on you??

All the best and wishes for getting well....

[Christophene47 in reply to Christophene47]

And I would also heed Suzym2u as well; maybe she or someone else can post the helpline info for finding a qualified consultant. I am in the States so I have not memorized it myself.

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Hi. You need a consultant to manage this overall as it needs pulling together. That person needs to have vasculitis as a specialism. This is the vasculitis helpline number and they will help you find your nearest so you can ask for a referral. 0300 365 0075. Good luck and stand your ground for a referral.

[torfruda]

Thank you for your reply.I will phone today. I really appreciate everyones help rgds