New Member Introduction 😉

[Pete]

Hey Trena,

Sulfameth(oxazole)/Trimethoprim is another name for bactrim (at least that what my bottle of it says). You were taking the double strength dosage 3x daily. That's a lot of a strong antibiotic! Glad to hear things are progressing.

As for the weight gain with prednisone, it won't be easy to lose while you're still on it. Once you get to lower dosages (generally defined as <10 mg/day), it will come off -- slowly. Portion control allowed me to lose about 0.5 lbs a month. Once my wife started a new, healthy eating plan (that I also follow), the weight came off a bit more quickly. It still took me over a year to lose the 25 Pred pounds. The plan is pretty simple -- cut out processed foods. We shop the perimeter of the grocery store -- produce, meat, and dairy. We also try to avoid gmo foods and minimize grain intake. For me, a typical day's food intake is:
> Breakfast: black coffee, old-fashioned or steel cut oatmeal made with whole milk, sweetened with a few drops of stevia or a little honey, and some berries.
> Lunch: Greek yogurt with fruit, a banana, and a small sandwich on gluten free bread.
> Dinner: Tossed salad of dark greens, broccoli, tomatoes, peppers, cauliflower, onion, olives with a vinegar and oil dressing (watch out for added sugar in salad dressings); a baked sweet potato; and some protein (we probably overdo this as we both really enjoy red meat).
> Snacks: a handful of nuts (almonds or cashews) or a piece of fresh fruit.
I try to drink 3-4 glasses of water a day. I have an occasional beer or glass of wine. I gave up soda altogether except for a bottle of tonic water that helps with the hand cramps I have once in a great while. When we go out, we'll eat a little less healthy, but only do that once or twice a week.

I was in pretty good shape pre-wegs. On the way to remission, I resumed exercising very gradually. I typically walk 3 miles 4-5 days a week. I'm also going to resume swimming and light resistance weight training once or twice a week. The exercise makes me feel better and helps me sleep better.

Hope this is helpful.

[annekat]

The medication which landed me back in the hospital was Sulfameth/Trimethoprim 800/160 mg with taking three tablets three times a day.

Trena, there is something weird going on here. The med you just mentioned IS BACTRIM! But you said you were taking it 3 times a day for 3 days a week, which is way too much! Most of us take the same dosage of Bactrim, the 800/160mg, but only ONE pill a day 3X/wk. Some people can't take Bactrim because they are allergic to sulfa, as drz mentioned above, and he mentioned a specific inhaler as an alternative. It's kind of hard to imagine why you got pneumonia when on that much Bactrim, but your docs were no doubt right that your system couldn't handle it. You say you are now taking Bactrim once a day. It could be a lower dose form of Bactrim. The one we take 3X a week is called Bactrim DS (which I think means double strength, not sure). If you are taking a lower dose with no problems, I guess it is OK. But I think you should check out this whole Bactrim thing with your docs, as it doesn't sound like they explained it to you very well. Make sure you are not still taking too much, and ask about the sulfa allergy thing, just to know they've covered all the bases.

I see Pete just addressed this at the same time I did! (I take it back, he addressed it much earlier, I just didn't see it!)

[Birdie]

Hi Gary! It great to meet others that are in the Phoenix area! I have been treated at St. Joseph's hospital downtown and they have all been AMAZING there! The doctors have been incredible and so supportive. I have been at such peace during all of this because everyone has been so wonderful to my family and I.

If if you don't mind me asking how long have you had Wegener's?

I went to St. Joes ER one time, when visits to three other ER's accomplished nothing. They kicked butt, identified the real problem and prescribed the correct treatment in only a few hours. This was after days in each of the two Scottsdale hospitals resulted in discharge with no diagnosis at all, yes you read correctly, discharged under protest without even giving me a diagnosis on a severe bladder problem, black urine filled with giant blood clots, endless massive screaming pain, etc. I also had experience at St. Joes with my wife dying of breast cancer, St. Joes did equally well for her. Also, and this is very surprising, county hospital is a mass of confusion but they were incredible, efficient, accurate, and more caring than anything else I've seen. They diagnosed Sue's cancer in a few hours.

Most important, take a detour if you're driving down McDowell and approach 12 street, at all cost, take a detour to avoid Banner Good Sam. I think bad things may happen to you just driving by...

Here's the link to my introduction post, it's a bit of a whine but I'm proud of that.

http://www.wegeners-granulomatosis.c...dy-know-3.html

Stick around this forum, whatever you need answered is available on short notice from this group.

[annekat]

It's good to know that good care is available at local hospitals like St. Joe's and not just the big, well known ones like Mayo, etc. As long as they can explain the Bactrim thing, that you are not allergic to it, and that you are now on a proper dose that your body can handle. It could easily be just a misunderstanding, something about the way you read the prescription bottle, or that the pharmacist printed and filled it incorrectly. It all seems strange to me.

[Dirty Don]

St Joe's is a large hospital also; they have an excellent cancer treatment center, as Birdie pointed out, as they handled my wife's cancer problems extremely well. Do stay away from the Scottsdale system, not bad, but not great either. But, Mayo has the advantage in that they put a team together right before your eyes, have immediate feedback, and are a research hospital as well as a treatment facility. You oughta see the the new cancer center being built at the main hospital! Best to you, get good help!

[Erin2014]

Hi Trena,

From one newbie to another - WELCOME! Lots of support and information on this forum. Your diagnosis intro was very similar to mine, minus the ICU stay, but I also have kidney, sinus, lung, hearing involvement and neuropathy in my feet. Within a year my sinuses, hearing and neuropathy have improved greatly and I'm working hard to get my kidneys and lungs on board!

Wishing you well as you continue your recovery!

[Trena]

HI Annekat! I love learning about different medicine and doses on this site...very helpful! I did double check my old bottle and it was 3 tablets 3 times a day. Yet, I received this medicine after I was in ICU with PCP Pneumonia. If I recall correctly, my doctor said that they needed to put me on a high dose because of the pneumonia, yet this high dose didn't agree with me and landed me back in ICU. Honestly, I have been on so many pills during this journey that I can tend to forget some of the details. I know that I need to do a better job with keeping track of all the different medicines and what they each do, yet at least I do well with always taking my medicine. I also bring all my pills with me during each doctors appointment so that my doctor can make sure that I'm taking everything that I should be and I keep track of my medication in my notes on my phone in case I ever need that information while I am out.

Again, thank you for you input! I feel like a sponge still just trying to soak in all this information!

[Trena]

Thank for your message! If you don't mind me asking....what helped your neuropathy bet getter (time, medication, etc...)? I am sill having a difficult time getting use to the neuropathy discomfort/issues.

[Trena]

First, I am so sorry to hear about the loss of your wife. I can't imagine how difficult of a time that must have been for you.

I also enjoyed reading your introduction. It sounds very frustrating with being released from the hospital without receiving the proper care. I also totally agree with you regarding Good Sam (from the stories I've heard). My doctor for the Wegener's is actually right next to St. Joseph's (same parking lot) and it's already been handy for when he wanted to say "I need to check you into the hospital" after getting some lab results earlier on. My doctor also said that he sees a new patient with this about every three months (which is comforting in the fact that he seems very familiar with this disease....as familiar as one can be with this I guess). The first time I went to St. Joseph's is when I was first sick not knowing what this was yet and they had me in a back room with a doctor within 3 minutes.....amazing! I only went to St. Joseph's because of the numbness in my for and hand and my sis-in-law reminded me that they have the neurological department that is so well known.

At at least we have the 303 that is so nice now to get to I-10! ��

[Birdie]

My doctor also said that he sees a new patient with this about every three months (which is comforting in the fact that he seems very familiar with this disease....as familiar as one can be with this I guess).

I'm stuck in Veterans Administration Hell, without a WG specialist and almost no access to health care. My most excellent rheumatologist (not VA) retired this month so I have no chance of going back to him. Anybody who claims to see four weggies a year is the best chance I've heard of around here. There is some chance that I'll be able to get outside help in the future so I'd really appreciate that doctors name.

At at least we have the 303 that is so nice now to get to I-10! ��

You obviously live way out in the boondocks.