Symptoms DURING remission.

[me2]

I don't have time at the moment to type out my current situation but I very much would like to hear about other peoples experience of having something go wrong DURING remission.

By remission I mean that previous symptoms are largely gone and blood work looks normal.

I myself have had subglottic stenosis that required surgery happen while everything else is quiet. Has anyone else had this? Or some other problem?

Currently I am having severe neurological symptoms and my doctor does not believe it is Wegener's because my numbers are low. So he is not doing any treatment other than a large increase in prednisone. Staying on a large dose of prednisone is not a great solution if this is a Wegener's problem.

I have had this neurological problem before and it is devastating. It took me two years to be able to walk to my mail box again. Worst of all is that it causes incredible suffering that I cannot describe. I some times think that because I don't have words for it they think it doesn't exist. I'm sure that's not the case but it really starts to feel like that some times.



Thanks

[Alysia]

Hi Kirk,

I am so sorry you are suffering this much.

I know 3 weggies who suffer from subglotic stenosis even while their wg is considered to be in remission, up to the point where they need to do a dilatation every few months.

In their cases and in others, it might be that the assumption of remission is wrong. It might be wg smoldering.

We can have other diseases in addition to wg. As you and me also have microscopic colitis. My indication to understand if a symptom is wg related or not, is if the high pred helps or not. For example, higher pred didn't help my colitis. But it sure helps my aching joints, which ache even while I am considered to be in remission.

Is the higher pred helping you ?

Can you please share what are the neurological symptoms ? Did you see a neurologist ? Did you do any tests ?

It can also be the result of some med, or of a certain deficiency.

Sending you prayers.

[me2]

Alysia,

Thanks for your ideas and consideration. It is very helpful to me. Much appreciated.

Kirk

[Donnak06]

Hi

I developed subglottic stenosis whilst in remission. I was in remission for 20 years and then developed symptoms including subglottic stenosis, I went on treatment and all was OK then after 3 years the subglottic stenosis got worse again and I had to have a dilation this was 18 months ago. I am still on lose dose steriods 5mg daily as maintenance dose and 2000 mg mycophenolate. I am hoping I don't have to have another dilation. I have a cold at the moment so breathing is not good but once the cold improves my breathing should.

I think subglottic stenosis is one of the worst symptoms of this horrible disease its so frightening when you can't breath, I ended up in emergency twice. Being on the low steriods seems to help and when I have a cough and cold I up them until the cold improves.