Vasculitis UK

Sorting Out Vasculitis Damage From Disease : Rheumatology News

The above link was posted on a facebook site,. This is a qutote- Dr. Seo highlighted nasal blockade/chronic discharge/crusting (32%), hypertension (22%), hearing loss (20%), chronic sinusitis (12%), and osteoporosis (10%) as a short list of other common damage. The article impies it is the treatment that results in these things.

I saw everything other than osteoporosis being assoicated with have vascilitis not the treatment/ Is it true that the immune-suppressant drugs can cause these side effects?

5 Replies

Hi Jann

As you know, most of the drugs we take have side effects. Many of them can lead to increased risk of infection. I would go along with the hypertension and the osteoporosis being caused or exacerbated by the drugs. However, in my case the nasal crusting came with the WG not with the medication, and hearing loss is something which some vasculitis patients present with before they are started on the medication.

Dr Seo is a well respected physician, therefore, I guess he bases his findings on patients who didn't have these problems prior to commencement of their medication. Just my observations



Thanks Pat that was my conclusion ...but it good to have your opinion. Thanks again.


3 months before I was diagnosed with CSS (aged 67) I had what seemed to be a urine infection. Initially GP prescribed antibiotics. This seemed to clear it but a week later it returned. GP sent me to Urology for checks, they were clear. 3 weeks later my hearing went. GP prescribed antibiotics, after a week my hearing returned and urine infection disappeared. 1 week later I was diagnosed with flu (my wife too). My wife recovered after a week, I didn't. I developed a painful right arm which I could only describe as chronic pins and needles. GP assumed it was a continuation of the flu in some way. GP prescribed pain relief in increasing strength as I repeatedly returned to him because the 'pins and needles' excruciating pain had developed in my left arm then my right thigh making sleep impossible. 3 weeks later and still enduring the pain 'inside my body' my wife called 999. Paramedic's tests were clear so he suggested I was having a panic attack 'inside my body was screaming with pain' they couldn't see or feel it! My wife insisted I went to hospital. In A&E it took 6 hours to bring my pain under control. The consultant rhuematologist after seeing my blood tests immediately diagnosed CSS. I have 'late onset asthma' (at aged 58) which gave me a frequently blocked/crusty nose. Approximately 2 years previous to CSS diagnosis I noticed a mild pins and needles feeling in my fingertips whilst driving, which disappeared when I released and lowered my arms from the steering wheel. I still have constant easily bearable pins and needles/stiffness in my hands/feet and stiffness in arm/shoulders/leg muscles. These are all accentuated, particularly hands/feet, after a busy day which, though bearable, are very uncomfortable. Just needed to tell this to help anyone. Please feel free to ask me any questions.


Thanks Derek getting the condition recongised can be very difficult. You did not have an easy journey. Best wish Jann


I picked this up on fb too. I have posted it for John to read. I am sure he will reply to this question himself in due course. The one thing about this article that worries me is that if people newly diagnosed read this article it may put them off having any treatment in which case they would probably die...I remember John's consultant telling me in the early days of John being diagnosed... "Susan, it is a balance, you balance the treatment against the illness". You have to keep the WG under control by the medication, but the medication has it's own side effects but if the WG takes control then all is lost, but monitoring the medication is essential.

John has suffered a DVT due to the WG and a carcinoma of the bladder due to the accumulative use of Cyclophos over a 5 year period. This is because until 2005 and his consultant tried Cell Cept nothing else would control the WG. Azathioprine did nothing to control John's WG and in 2003 and John had a major relapse.

Today, with the introduction of Rutiximab the treatment for Vasculitis will be a lot safer, but even then RTX does not agree with everyone with vasculitis and they have to take alternative drug therapy which probably is not as safe. But as John's consultant said " it is a matter of getting the balance correct" .


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