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?

[Sangye]

40 mg of pred for a few days is often enough to get down inflammation like you're describing. Putting you on 120 mg solumedrol (equiv 150 mg oral pred) with a plan to drop to 60mg seems like over-treating to me. 60mg will take away the pain but at a high cost to the rest of your body (and mind).

I believe mtx takes about a month to kick in fully-- same as the other immunosuppressants. You might get relief from it sooner, as it builds up to full speed.

[marta]

Take care of your self sadpixie. I found that it takes about a week to feel the effects of cytox. I read somewhere that it takes a week to get it out of your system and a week to have it kick in, and I definitely noticed that this time around. The first time I was too oblilvious and in shock to recognize what's going on. The solumedrol high is insane hey? I was in the hospital on three days of it in November and felt like I was on 100 espressos each and every day. Couldn't stop talking. They also took me off the cytox (fearing that it's affecting my liver enzymes) and kept me only on the pred after the solumedrol days and I could definitely feel the disease doing it's thing underneath. I went to Emerg in the city and was talking to some emergency doctors who said to us in all sincerity - well you are treating the disease with the prednisone. It's decreasing the inflamation and that's what Wegener's is. It's amazing the misconceptions about WG even among medical practicioners. Literally to the day within a week of taking cytox and pred together, I felt a change for the better. I've always been very self aware when it comes to my body, but with this it was strange the first time, but now, on round two, I can feel what is what and what is Wegs, and I know that the combo of the drugs made a difference.

Bla bla bla.... on a completely different note, I loooove your avatar.

[Sangye]

Though you might feel some improvement from ctx earlier, it takes 4 weeks for it to kick in fully. This is why they put most of us on high initial doses of pred-- to buy time until the ctx kicks in.

[elephant]

Hi sadpixie, I agree with Sangye on this. One of your docs needs to call a WG specialist Monday at Cleveland Clinic and go over your situation and meds you are taking....ect
I am glad you are on this site, it saved my life.

[JanW]

Sadpixie -- it probably took about a month for my mtx to fully kick in. I agree with the others that 60 mg is a huge dose of pred to be taking (I started my mtx with no pred and became symptom free probably within two months). Sangye is also right that mtx is used to treat mild to moderate disease (I have moderate), at most; it's never a first-line defense against severe disease. I'm guessing that your docs are calling this moderate disease because I note that you are referring to limited wegeners with no lung or kidney involvement. This does NOT mean you don't have severe disease (although this could is a common mistake). I don't have lung, kidney, or true sinus involvement, and at my worst was neever close to a hospital admittance or even an emergency doctor's visit but because I do have windpipe involvement, I am considered a moderate, not mild, presentation.

For what it's worth, my doctor had me start on 3 pills of mtx for one dose, go back for a blood draw to check liver enzymes and immediately pushed me up to full dose (6 which was then raised to 7 which took away a lot of the inflammation that was making my ankle hurt). I don't really see the point of going up 1 pill/week..unless, he will see your numbers/symptoms going in the right direction and tell you to stop increasing your dose. 25 mg is a pretty standard dose of mtx, but none of us are standard patients, are we? The goal should be to have you taking the least amount of medication to achieve optimal results, so hopefully your doc would be more artful about getting the dose right, but not going over.

I know that any true specialist would be. It's as important not to overtreat as it is not to undertreat.

[drz]

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?
Do you have any hearing loss? They could give you higher dosages of steroid if they are trying to save you from hearing loss but as stated before then they would generally use a strong drug to suppress your immune system unless they know that Cytoxan or Rituxan are poor choices for you. Not everyone can tolerate the later two drugs which leaves mtx or other drugs as your best choices.

[Sangye]

I had acute onset, near total hearing loss in July and my Wegs ENT at JHU put me on 40-60mg for only 2 weeks to restore and preserve my hearing.

[sadpixie]

I do have hearing loss. 70% in my right ear and my left ear is giving me lots of issues currently.

[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.

Here is an article on Wegener's and salivary gland involvement. Correction: Salivary Gland Swelling in Wegener's Granulomatosis: A Rare Cause of a Frequent Symptom. ? Journal of Rheumatology (http://www.jrheum.org/content/38/1/183.3.extract)