This may seem trivial but I was wondering what advice anyone has on dealing with being ill on top of the vasculitis. I have my first cold since being diagnosed in Feb '11 with Wegener's, and I feel absolutely dreadful! I know that's par for the course with a cold but I'm worrying anyway. My eyes have inflamed which I've been given drops for, but will my body even be fighting it off? Do I technically have a functioning immune system to deal with it while taking Azathioprine? Also I'm due to have a blood test later this week to check my compatibility for the drug, will my cold interfere with the results in anyway? I'm seeing my GP tomorrow but how does everyone cope with other illnesses that come along?
How to cope with a cold?: This may seem... - Vasculitis UK
How to cope with a cold?
I just treat infections as normal. So I take soothing drinks, lots of paracetamol, and rest. The only time the doctors have ever considered lowering my immunosuppression drugs (I'm on many at once, Azathioprine and lots of others) is when I got shingles. Even then the doses stayed unchanged, but if it came back and went for my eyes the consultant says I have to temporarily stop my Azathioprine. But for colds, even flu (including swine flu I had) and when I had chickenpox and ended up in hospital for a week I carried on as normal. Of course you should talk to your GP about this. Every case is different. But my disease (very bad cerebral vasculitis) is so aggressive, we can't lower my immunosuppression, and I have to battle through infections.
Oh and because your immune system is over-active due to the disease you may well have sufficient protection from a cold, even on immunosuppression drugs. And if you are on steroids they can also raise your white blood cell count, giving you extra protection.
Yes I am on steroids, nice to hear a positive about them They've increased my dose from 20mg to 40 to assist my eye drops. Reading your comment Viv certainly puts my cold into perspective, I can't imagine dealing with swine flu as well as vasculitis. That must've been nasty to fight off! I will see what my GP says, luckily he's been brilliant so far with my treatments.
I get frequent infections mainly because I have two children who bring me lots of lovely bugs home from school! I'm the same as Viv in that I take paracetamol based products as well as other soothers but, when I feel a cold coming on, I take 1g of Vitamin C every 4 hours for 24 hours - this was a tip I heard off Dr Hilary on GMTV a few years ago & it's worked for me but it would be best to discuss it with your GP first. For sore throats I suck Tyrozets which you can get from any chemist which have an anaesthetic in them to numb your throat & I've found these better than any of the other things (and trust me I've tried them all lol). I was recently very ill with a viral infection & asked my fellow vasculitis sufferers on the Vasculitis-uk facebook page if I should stop any of my meds as it was the weekend - all of them advised me they'd never been told to stop their immuno-suppressants & especially not steroids as you have to be slowly weaned off steroids with medical supervision or your organs can shut down! The only time I had to stop my azathioprine was because my white cell count had dropped dangerously low. I was glad to hear your GP has been supportive - mine is too - because a supportive GP is really worth their weight in gold!
I have anca Vasculitis and I seem to pick every bug there is going. I find that trying to ride it out is the best was colds are a pest but paracetamol every four hours helps and honey and lemon drinks. I have always waited until I am well before I have a blood test, this is difficult as blood tests are frequent.
As this illness is on going its just a case of suck it and see. A good GP is a bonus and I have the best consultant anyone could have, What we really need is a cure!!!!!!
My Hospital consultant told me to carry Vicks first defence with me. If I come within yards of someone with a cold take the first defence. Its worked wonders.
Not sure if its true but i have had many people say about manuka honey, the higher the number the better.To have a little a day,and extra should you get a cold. My friend swears by it,hasn't had a cold in 2 years.
Excellent thank you everyone, I will try everything suggested to hurry my recovery. I saw my GP, he said my last blood count was good so I have some immune system working at least! It apparently won't interfere with my blood test coming up either. He gave me some extra solpadol to help with aches and pains, and has prescribed penicilin as a precautionary defence against any bacteria infections I might be weak to while I'm getting better from the cold and taking all of the vasculitis medicines. Followed by the 'you need a flu jab' chat Glad I went, first time I've ever visited a doctor just for a cold but he was very helpful anyway, despite me sitting there feeling stupid!
Manuka honey is excellent, I add a tea spoon of lemon juice and a small portion of mashed up ginger root (this acts as an inflammatory) to a cup of hot water. I have this at least once a day. It's great for soothing a dry sore throat.
I am on high levels of immune suppressants and just recovering from a very bad cold. My Vasculitis was started by a Flu and also a Hepatitis Injection. So I cannot have the Flu jab, as it could be fatal. I also cannot have honey, being a Diabetic. So I use Vitamin C tablets with Zinc and hope for the best. I have several lots of emergency antibiotics given to me by my doctor and hope that this winters projected avian flu does not appear.
Any suggestions for a sore throat ??