my update

[alexciasmom]

ýSo its been a wile sence i have done a update on myself for ya all.

Well here go's.

Christmas was busy, felt like crap most of the time. Still feel like crap. I have a sinus inf, ear inf, and pneumonia. And now the thrush is back. so its been up and down. all of you know all about that right? so my pred is down, and i now have neuropathy!! with Mom, gma, and my sister all have been in the hosp. Gma has Renal kidney failure. Mom has Pernicioous Anemia. My cousin has MS and fibromyalgia. and my sister has neuropathy, Ra, Psoriasis, and scoliosis. And we have all been diagnosis in the last year.

I am on a bunch of meds. I am totaly lost on what is my normal and whats a flare up. Heres a list of my meds. Any thoughts????

fluticasone propionate 2 spray each nostral 1x. Only 3 days a week. For synus crap.

Genteal each eye 1x. 3 days a week. For eyswelling, and dryness.

Zantac 150 prn. Not on any more.

Hydrocodne 10-500 prn. 3 days a week 0 to 3. 4 days 3 to 4. For back and joint pain.

Metformin 1000 2x. Every day for type 2 diabeties. Sugers run 135.

Gabapentin 600 2x. Every day for np in hands and feet.

Ondansetron hcl4mg prn. One or two a week. For vomiting.

Levoxyl 125 1x. Every day for hypo thyroid.

Ramipril 10 mg 1x. Every day for bad fam hist of heart probs and diabeties. Don't know what pb runs but low enuff if it was any one else they no worrie.

Folic acid 1mg 1x. Every day but Sunday. Cuz of mtx.

prednisone 12.5 mg 1x. 1 to 4 days a wk 10 mg the rest 12.5. For joint pain and swelling.

Fluconazole 200 mg 2x. Every day why I got thrush till ani fungle runs out there thinking of adding mouth swish.

methotrexate 2.5 mg 6 tabs 1 a wk. Sunday only. For wg.

Advair 250/50 2x. Every day when I remember. For ashma.

Ventolin 90 mcg 2x. 4 times a week. For asma.

Morphine sul er 30 3x. 4 days a week 1 to 2. The rest 2 to 3. For joint pain and mucle pain. I up this med befor I add the lortabs.

Cymbalta 60mg 1x. Every day for damagde pain in lft foot. And nerve pain.

Wecol is how I think it spelld. 1 to 4 a day. I take 1 to 3 a day.

I have a spreed sheet that makes a pie chart with days and weeks. With all symtons entered and times they start and end. Then what times I take what meds. So we can't track any issues. I take this to all dr appt. The dr let me self adjust to how I feel on a lot of it.
O joy right. and lets not talk about the emotion rollercoster.

[annekat]

Wow, that is a lot of drugs. Sorry I can't help you much with what might be a flare vs. what is normal, but I think it is normal to be having symptoms if you are not yet in remission and are trying to taper your prednisone. Others can help you more with what would constitute a real flare. The current infections you have sound scary and could contribute to triggering a flare, I think. Since you live in Salt Lake City, are you seeing the Wegener's specialists at the University of Utah? I hope so. That's what I'd hope to be doing if I was anywhere near there.

[annekat]

Oh, and sorry to hear about your relatives with serious health issues, too. That is a lot for one family to deal with.

[Dryhill]

Alexciasmom, are you taking 1mg of Folic Acid a day? I am on 5mg more of Methotrexate a week than you but take 5mg of Folic Acid once a week. There is not a lot of difference in the quantity but it is interesting how doctors have different ideas about taking these meds. Also as far as I can tell you do not seem to be taking anything to help combat the damage Pred does to your bones. I am on two calcium tablets a day plus another tablet once a week.

Boy you and your family are having a rough time, I hope you all start feeling better soon.

Jim

[pberggren1]

Those are a lot of meds for sure. Just wonering about Metformin? Do you have diabetes? Do you have SS or Asthma?

[mishb]

My goodness, it's no wonder you keep getting thrush with that cocktail combination.

I was going to say the same as Jim about the calcium.

I think it would also be a good idea to take a probiotic to include some good gut flora, should assist with the thrush also.
(I don't know half of the names of the meds that you are taking so you could possibly be taking them already).

I hope everything sorts it self out in time for the big party.

[alexciasmom]

Yes I have diabetis type 2. And my dr cks my calc evey month and its fine.

[Al]

Yikes--a walking pharmacy! With all those other drugs, I am not surprised you need the cymbalta. In any case, you have clearly been through the wringer. Is the high glucose drug exacerbated? I hate to thing about your having to take another drug, but usually the thrush has to be knocked out by a anti-fungal, usually in syrup form.

In your case, it may indeed be hard to know when you are having a flare, given all you have to fight through. I hope you are having regular blood tests....

Al

[alexciasmom]

All three of my dr do blood and urin every month. I take antifungal every time I get thrush I have had it 9 times in 12 months. There doing a tummie scop on the 20th. And the funny thing is the cymbalta is for the neropthy and not my moods.

[Sangye]

Holy smokes!!! I'm having a really hard time believing that all those meds are justified, as there are so many that are redundant. You're on Morphine AND Hydrocodone AND Gabapentin AND Cymbalta for pain?? What is the source of the pain?

Also, my antennae went up with the sinus infection, ear infection and pneumonia. Pneumonia on mtx is very likely to be pneumonitis--an allergic reaction to mtx. This is very common and often misdiagnosed. (Happened to me!) If it's not a reaction to mtx, I have to think that all 3 are due to active Wegs. That would also correlate with severe pain and development of neuropathy.

Thrush can be treated holistically:
1) Take a probiotic daily. Get a mid-priced brand from a health food store. Pricey ones with added stuff are not necessary. I like the brand PB-8 since it's decent quality, affordable and available everywhere. Take 5-7 billion units a day (2-3 capsules) on an empty stomach (ie, 45 mins before eating or 2-3 hrs after eating). If you usually get up in the night to pee, take the daily dose then. Stay on the probiotic even after the thrush clears up.

And
2) Drink apple cider vinegar daily. Use organic, unfiltered ACV with the "mother" in it. Braggs is a good brand-- inexpensive and available in every health food store. Add 1 tablespoon ACV to a glass of water and swish some around in your mouth before swallowing. You don't need to swish all of it, but drink the entire glass. Repeat 2-3 times a day until the thrush is gone. ACV corrects the pH of your GI tract, making it inhospitable to yeast.

And
3) If you're a sugar junkie you'll need to ease up a lot or stop completely since sugar feeds the yeast. It's rare to see yeast problems in people who don't eat a lot of sugar. The good news is that as the yeast disappears so do sugar cravings.

I cannot tell you to stop taking the Fluconazole since I'm not your doctor. But adding these 3 holistic remedies will not interfere with it and work great. They won't interfere with any of your meds, and they won't annoy the Wegs dog.