Admitted to the hospital

[sadpixie]

Woke up early this morning with blurred and decreased vision in my right eye, extreme sinus and ear pain and vomiting. A quick call to the rhemy's after hours line sent me to the ER.

So far it is looking like my eye problems are related to my bell's palsy but they did an MRI to be sure and I won't know the results in the morning. If the MRI shows anything I will be transferred to Vanderbilt. Currently on IV fluids and 1000mg solumedrol. Will be pushing the rheumy to start treatment tomorrow instead of waiting until Wednesday as originally planned.

This is my third time being admitted in a month and Im tired of being admitted for a temporary IV steroid pain relief session.

Also has any had Weg's affect salivary glands? I have had extreme dry mouth with no saliva production the past week and within hours of solumedrol it is returning.

[pberggren1]

I get dry mouth and throat alot. It comes and goes, but right now I have it and I think it is more due to the antibiotics I am on. I use Biotene toothpaste and mouthwash and it seems to help a bit now and then.

[elephant]

Try to be firm with the Rhuemy's and tell then that we need to treat the WG not the symtoms! Need treatment now! Some of those symtoms can be medication related giving you dry mouth.

[Sangye]

I'm wondering why they gave you 1,000 mg IV solumedrol. That's the highest dose possible and is normally used for life or death emergencies. Did I miss something?

[Minneapolismark]

Also has any had Weg's affect salivary glands? I have had extreme dry mouth with no saliva production the past week and within hours of solumedrol it is returning.

I am so sorry to hear about your struggles. I get dry mouth a lot, but I have no idea if it is caused by the meds or the disease. Before I was treated, my salivary glands swelled to the point that I could not get my jaw shut. Pred fixed that up in about two or three days.

My heart goes out to you.

[Jack]

The treatment you have been receiving sounds very odd to me and nothing like I would expect if I were to present with those symptoms. I would have expected the docs to assume a Wegener's flare and treat accordingly unless they had proof otherwise.

[JanW]

I agree with Jack.

[sadpixie]

Ok much progress was made today after much pushing for answers and treatment plans, also talked with family and they are more than anxious to help me get to a specialist so I am very optimistic that this will be possible soon!

My liver enzymes have returned to normal and I am to start MTX on Monday starting at 5 pills on Mondays and increasing by 1 pill every week up until 10 pills, we reduced the solumedrol to 120mg (rheumy was concerned with why the ER administered the 1000mg initially) and I will be on 60mg pred at home initially. I will also be taking folic acid and calcium as supplements and dapsone (sp?). Please let me know if something sounds out of the ordinary, I am learning so much from all of you already and it has already made a huge difference in how I am advocating for my care until I can get to a spec.

My WG is still considered "limited" and kidneys, lungs are still looking like no involvement. My eye checked out fine and is just some dryness from the facial palsy.

[Sangye]

Why on earth do they have you on 120 mg solumedrol?? That's much more than 120mg pred, which would be an outrageous dose as well. Without organ involvement, I don't see how they can justify such a dose.

The combination of mtx plus massive pred doesn't make sense. They start you on mtx only if you have mild to moderate disease activity. But they use massive pred if you have severe activity. Their treatment makes NO sense.

Please ask your family to contact Cleveland Clinic (if that's where you'd want to go) to get an appt as soon as possible.

[sadpixie]

Thank you, will address it with rheumy in the morning. He says he wants me on a lower dose of pred asap but yet this. I do have severe ear and sinus pain at the moment and massive inflammation per MRI but Im not sure if that has anything to do with the pred dosage. How soon does the mtx take to kick in with some results in that aspect?