Hello. I’m new on this site ( well been reading everyone’s post but never wrote anything.
Was diagnosed with Vasculities (sinus) in January and to be honest I haven’t really taken it seriously. I’ve been on 6 tablets ( steroids) a day reducing it to 3 now.
I have had breathing difficulties and my nose. (Well not much left. ) Lots of other stuff but don’t really want to think about it. But I’ve spoke to my consultant today and realised that this condition is not just going to go away.
He has advised me to start taking another medication to see if it slows down the condition. Anyone else got this type of condition ( as I am now aware that there are many others. My nose ( what’s left ) is my main worry as I know that there is nothing ENT can do until the condition is stable.
Wow that is the first admission that i understand that this is not going to go away on its own
Any help would be really appreciated
Sonia
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Soniamac1
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Hello Sonia, welcome to the world of Vasculitis. Steroids alone will only mask some of your symptoms, you need an immunosuppressant like Aza, Myco, Meth or Rituximab which is probably what your consultant is talking about. It's absolutely imperative that you have a consultant that specialises in Vasculitis. Have you looked at the Vasculitis UK website? Lots of helpful stuff on there and there is a helpline where you can be guided to the right person. We also have a very good Facebook Site, Vasculitis Support where you will gain more info. It's a long journey, and a good thing you're beginning to face up to that journey. You're not alone.
It would be for your consultant to advise you but my husband was prescribed Aza, Myco, Meth & Cyclo but none of them put him into remission. It was only Rituximab that helped and that held him in remission for 2 years but he's now back on it every 6 months. You're in a very exclusive club here, with no membership fees. It is a long journey but it can be managed. Best wishes
Hi Sonia and welcome. Do you know what type of vasculitis you have? I have had a lot of sinus problems but they are in spite of rather than caused by my vasculitis according to my lovely ENT doctor. Are you under a vasculitis consultant or an ENT doctor that has an understanding of vasculitis? Being such a rare disease a lot of doctors haven’t heard of it. Usually you would have some pretty strong meds to stop your immune system attacking you and then they can look at the damage. Have you visited the vasculitis U.K. website there’s a lot of useful info on there and I think some info about sinus/nose problems. Please take it seriously it’s better to take control before it takes control of you x
It sounds like you have a significant problem with your nose which can be really hard. There is a lot that can be done to rectify it!! You need to be seen by someone who really knows about the condition. Do not delay phone the vasculitis helpline asap. You need help and support asap. If at all possible get seen at Addenbrookes where they will really help you. They can even resolve issues with noses.
First of a BIG WELCOME, to you, from us all. In 'one way' I can't help you at all, my Vasculitis 'attacked' my Kidneys, Brain and Heart. In another way I can offer you some Advice, based on my experience of Autonomic Diseases.
I think you need referring to a Vasculitis/ Autonomic Consultant one, who can give you an actual Diagnosis. Such a person would have 'A Whole Battery Of Tests', carried out and then, in all probability, have even more Done. This could, very well, mean a few days (week (s)) in Hospital.
Sorry to be, such a bringer of 'Bad News'...... However, AFTER these Tests- and any Follow Ups- are complete- your Medication should be correctly adjusted for you and, all being well, your Nose might be 'Better' too. At this stage, but not before, you can ask about Reconstruction. I'm sorry Sonia but, you are in for, The Long Haul I'm afraid.
The GOOD NEWS is that you are Alive, are being Treated, have already 'beaten' the Odds and have a VERY Good Chance of a, fairly' normal, life..... did I mention Life, being Alive?
Stay Positive Sonia.... think of what you CAN do, NOT what you can't. Look at a Sunrise, marvel at it's beauty. Look at yourself- despite That nose- your a 'good looking' girl. Nice Hair, nice Skin- that cream, really Does Work. Alright your Toe Nails need a 'trim', so what!
Please DO contact, any of us, again should you need to. Our Best Wishes are with you Sonia.
Wow if I wasn’t taking this condition seriously I am certainly waking up to it.
I haven’t been told what I have apart from
Vasculities. I’m thinking it’s Granulomatosis with polyangiitis as all the things I’ve read matches up to it.
I’m have been on 6 steroids a day and now coming down as he wants me to try another one. He’s told me about meth one and another one mayao I can’t remember what the correct names are I did write them down and have looked them both up and I think the second one seems better.
My nose is nearly completely gone inside and my sinuses and ears are very painful as is my throat. Seems all on my left side.
Went to the ENT and they said that my nose is too far gone to repair and even if they could the vasculities would attack that until it was under control.
My consultant is a
Rheumatology Doctor and seems to know lots about it and is speaking with me every 2 weeks and letting me know how my blood tests are going.
I will be honest I really thought this was something I could deal with and get over but reading peoples replies I guess not.
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