Suspicion of MS after Wegener's Granulomatosis

[hrnn]

Hi all!

I'm writing on behalf of my wife who's been diagnosed with WG a bit over a year ago. She started with joint pain and swelling in her lower limbs, and a possibly related ear infection although not for sure.

She's been doing quite well on prednisone lowering the dose and Imuran. She got diagnosed very early so the doctor decided for a milder approach.

A few weeks ago a few things happened at once. She lowered her prednisone from 5mg to 2,5mg, she was under heavy psychological stress due to some family problems. She started feeling pain behind her left eye, quite intense. After a few days on-off she lost sensation on her palate for a few hours and the next day she lost vision on her eye.

After a prednisone shock she got alright again, but now the doctor is suspecting it could be something different to WG, that is Multiple Sclerosis.

I'm by no means an expert but from what I could gather her case is not very MS-like (she didn't have any of the other symptoms described for MS), and even I fould on the forum a very similar case involving the eye (but not the sensitivity loss). My bet is that, if anything other than WG, could be a different myelin degenerating disease (I don't have links handy right now, but I read about a few that would fit a bit better). Also, though not even conclusive for WG, she tested C-Anca positive.

What are the community's thoughts about this?
Thanks in advance!

[Debbie C]

Hi and welcome to the forum ( unfortunately ). Sorry to hear about the problems your wife is going through. I am no expert and really can not say for sure but it could be the result of weaning of the pred to fast.How long has she been at 5 mg ? I also am taking 5 mg. and cannot not even go 1/4 less without having severe headaches and other effects. As so many others on here will tell you.. you have to wean off VERY slowly and some ( like me ) ma be stuck at this point.Maybe if she trys going back up to 10 for a couple of days she may start to feel better. But by all means talk to a pro. in wg before doing anything. Best of luck and tell us more about your wife when you can.

[me2]

Hi hrnn,
I don't know if I have any light to shed on this. From what I understand so far I don't know why it would be considered something other than WG if your wife has a WG diagnosis. Also, I don't know much about MS and the treatments for that.
(I could talk a long time about what I don't know)

Eye problems like you describe definatly fall within the realm of WG and must be taken very serious.

What kind of doc does your wife have? Where do you live? Has she had this doc about a year? How was a WG diagnosis decided?
It would be rather amazing to me if she was diagnosed for WG with just joint pain and swelling. Most of us have to develop a lot more symptoms to finally get a diagnosis. My own case started with sinus problems and nose bleeds. For which I was given lots of antibiotics that didn't work. Then a sinus biopsy was conclusive for WG.

Welcome to the bestest Forum on the interwebs!!

[mrtmeo]

Can you contact the Vasculitis Foundation for a Dr knowledgable in vascuitis?
Contact Us

[Thinker]

I had eye involvement right before my diagnosis of WG. I developed redness, pain and blurred vision in my left eye and was diagnosed with anterior uveitis and treated by an ophthalmologist with steroid drops in addition to prednisone and ctx after my diagnosis. I also had migratory arthritis for several months prior and ear infection symptoms for several weeks prior. If she hasn't seen an ophthalmologist it may be a good idea to see one. They can check her eye for any signs of inflammation that her other doctor may not notice and help rule out or confirm her diagnosis.

[hrnn]

Hi! thanks everybody for writing! I'll try to address every question:

after reading the forum I also suspected it could be related to reducing the prednisone too fast (there's even a post with a similar issue related to the optical nerve). but the doctor said no.

Luckily they also considered the issue to be very serious and they admitted her to the hospital just to make all sorts of studies on her and get rid of the symtom (blurred vision).

Her doctor is a rheumatologist and has a few other pacients with WG. She had a different doctor at first and they suspected she could have rheumatoid arthritis, and the hospital derived her to the actual one after realizing it was not. back then they checked her on every single possibility and as far as I can remember she also had something with the kidneys which ended confirming the diagnosis.

right now the plan is to change to rituximab after ruling out MS, for which we have an appointment with an MS specialist on the 3rd.

we are in Vienna, Austria. on one side it's very good because the public health system is taking care of everything and even on the same hospitals she can get consults with specialists on different areas. the problem is that there's not much alternative to get a second opinion.

I'll keep you all posted. Thanks for the feedback!

[annekat]

I just want to say welcome to the forum. It sounds like you have a good handle on the situation and dealing with what you have been told, and will be waiting for more input from various docs. I would disagree with the one doc, however, who said that lowering the dose of pred from 5mg. to 2.5 could not be causing the problem. But true, that might not be all of it. I wish you and your wife the best, and hope you will keep us updated!

[mrtmeo]

I agree with thinker that an opthamologist can give cyclosporin or prednisolone drops for the eyes if there is inflammation.
This is what helped my mom's right eye.

During and right after Rtx treatments, her eye bothered her every day for a total of 3 months and then, the pain was gone and has not returned.
The cyclosphorin and prednisolone drops really helped during that time.
She had PUK (Peripheral Ulcerative Keratitis) which may have been due to the high Rheumatoid Factor which is now pretty low from the rtx.

[Carol]

After bing sick for about an month and being on Imuran, Pred and Bactrim I lost feeling in both my arms within about 1/2 an hour and had to then start on cyclophoamate? infusions. I also lost sight on one eye and had to have the Pred upped. regards
Carol Australia

[hrnn]

Hi! a quick update:

the rituximab treatment was posponed until last week due a runny nose and that the doctor didn't want to take any chances. bad news is she had a severe allergic reaction to the rtx so it had to be stopped after 30 minutes and it's definitely off the table.

so this week we'll meet with the doctor to discuss the alternatives. so far it seems that his medication of choice is cyclophosphamide, which we are not exactly happy with due to its toxicity and the possibility of leaving her infertile.

if so far the aza and rtx didn't work, the classical options are what? mtx and ctx alone?

I've been googling and there are suggestive results on cellcept and also infliximab, but they are not yet mainstream choices.

would someone want to input on this?

thanks all!