Welcome New Members😀

[AndrewT]

Dear All- particularly New Members,

I have recently seen both on this Forum, and others to, a number of New Members Posts. I haven't read them all but I have 'Noticed' you all.

So from ALL of us 'Oldies'- members for some years now- can I say A Very Warm Welcome, To 'Our' Forum(s). Please DO Feel Free to ask us Questions, be it about your Condition, Drugs, Diag/ Prog nosis or just for a 'Chat' about Things. Many of us have, and indeed still are, navigating these 'Choppy' waters ahead of you.

Once again Welcome

AndrewT

[Oceangarden]

Thank you Andrew. It's my teenage daughter whose affected and I feel like I'm living a nightmare. If I'm quite honest. I'm really fed up with explaining to people that everything is beyond our control, that it's a chronic condition and she's not going to get back to 'normal'. Sorry for the rant, but why do people insist asking if everything is OK, and how are we when I've explained the severity of this to them over and over? It's as if they expect me to have all the answers and want me to reassure them everything is OK, when it's quite clearly not the case! 😪

[kitkatmum in reply to Oceangarden]

Hi Oceangarden,I too am a parent of a teenager diagnosed with GPA , back in November 2019 before the works went in to lockdown so we have been isolating for a long time now. I totally understand your frustration at the 'are they better now?' type of comments and questions , despite explaining the seriousness of the disease. You find out who actually listens to what you're saying.

Also, as a parent, seeing your child go through this and seeing their life suddenly take a dramatically different direction is heartbreaking, isn't it.

Hope your teenager has a really good rheumatology consultant who listens , it's so important.

[Oceangarden in reply to kitkatmum]

Hi, thanks for your reply. It's so hard, as a parent, seeing young people being inflicted with this isn't it? I appreciate your comments. It's good to know that someone understands. It is heartbreaking to see the sudden onset of this. Suddenly, you're living in an alternative universe to everyone else.

My teenager has an extremely rare presentation of Vasculitis so they're unable to categorise it currently, although at the last consultation our Rheumatologist suggested it has similitaries with Pan. So far, treatment has been ineffective and her symptoms have worsened, so she's now started Rituxumab infusions this month. I just hope this results in some improvement. I feel for them both.

[May7 in reply to Oceangarden]

I understand perfectly how you feel, but with me it's not a son or daughter, but myself. It's been extremely frustrating when people ask me if I'm better now, and I have to try and explain that I'll never get better, in greater or less detail, depending on how well I know them. But I've had to remind myself that it's not really their fault, because so little is known by the general public about autoimmune diseases. I'd never heard of vasculitis, let alone EGPA until I was diagnosed. And my GP, a very experienced and knowledgeable doctor, had never known a patient with it, and when I presented my symptoms, the first thought was that it might have been adult onset asthma. It was the multitude of blood tests that revealed the true culprit. And then talk of remission cheered me up, until the hard truth about the permanent damage done to my lungs and then my kidneys, began to sink in. I've been so fed up with this, having had it ruin my retirement, but can't help feeling so very sorry for younger people having to face this, without the sort of future I had looked forward to. So you rant if you want to. Here, we are all in it together.

[Mooka]

Thank you Andrew that’s such a nice post.

[Dangee]

Thanks Andrew. Recently diagnosed with GPA. Got my 1st infusion of ? Something beginning with R??? Tomorrow. Seem to be under v good care now properly diagnosed. Any advice?

[AndrewT in reply to Dangee]

Dear Dangee,

The only 'R' I can think of, Of The Top of My head is 'Rutuximub'- which is a Drug that I have never Been On! It is however in the Same Family as Azathioprine and, to a lesser extent, Prednisolone. The Drug I currently take, along with Pred. is Tacrolimus (watch your Spelling Andrew.... nearly put TacrolEmus!) due to my Kidney Transplant- way back, in July 2013.

All these Drugs 'Work' by Suppressing the Immune System, this preventing our Own Bodies from killing US.... YES That is indeed the case!

Please DO Feel Free to ask me, or indeed, ANY of us anything you need/ want to Dangee.

Very Best Wishes

AndrewT

[Dangee]

Thanks Andrew. Now, this may seem like a stupid question but how do I know if I’m having a relapse? My GPA is localised (they tell me!) I lost my sense of smell about 15 years ago & I presume from my daily cocaine use. I’ve also had a saddle nose for at least that long. My drug use was quite prolific between 6am & about 7pm daily. I don’t have any pains from the effected areas so not sure how I know if I relapse. I’m new to this whole situation & haven’t had a chance to discuss everything I want to know with my consultants yet. They did say last time we met that if I did ever continue with the drug, it would be like trying to put out a house fire with a water pistol.

That scared the life out of me.

BTW. I’ve also lost horizontal movement in one eye. It has turned inwards (I’m quite vain, the last year has been a complete nightmare for me mentally as I’ve still had to work & meet clients etc) The eye is fine but the socket behind the tear duct has a hole in it causing the eye to turn in to it. Moorfields are coming up with a plan to rectify this once the infection is under control (probably a couple of years I was told)

Regards. Dan.

[AndrewT in reply to Dangee]

Dear Dan,

I can't really answer your question, as I have NO experience of Cocaine addiction- or it's consequences! That you have Hole In Your Nose (of sorts anyway) and you have clearly Damaged Your Eye or, at least, the surounding area..... Heaven knows what Other Damage, probably 'hidden', you have done to yourself.

DO Speak to your 'own' Doctors/ Consultants, who have experience of YOU- and what you have 'done' to yourself!

Sorry Dan but I just can't advise you further, regarding this question- it's beyond MY 'remit', and experience, I'm afraid. Clearly I do.....

Wish you well

AndrewT