Predinisone reductions

[Debbie C]

The only thing I am taking for the wg is 5 mg pred (no mtx,ctx or anything ) As I mentioned before the inside of my cheeks are puffy ,it was both of them now mostly on the left side. Sometimes its so bad that I feel I'm going to bite down on my cheek. I had to go get some skin cancer removed from my chest a couple of days ago and was put on antibiatics.The swelling seemed to have gone down know SO I'm wondering what this is from .The reumy and pharmacist says it's not the steriods (which I thought it was ) I have an appt with an ent for a check up next week ,maybe he can shed some insight. I've alsd noticed lately it gets worse when I eat yogart or have almond milk.So I'm narrowing it down to sinuses , dairy allergy, my reumy also said that my saliva glands may be plugged up ??? Boy did I get off the subject I was just gonna mention that when I talked to my reumy about this ,I asked him if I will be on pred for the rest of my life and he said probably so. I was just wondering if anyone is of drugs completely and does anyone have the same cheek problem ??

[annekat]

Debra, were you EVER on CTX, MTX or such? I seem to remember you having trouble tolerating those drugs. Or is it just that you are in enough remission to drop those and just take pred?

I mentioned in another thread that I had a swollen parotid gland at the time of dx. This was a lump in front of my ear. I now remember that that gland had to do with salivation, that it is a salivary gland draining into the back of the mouth.... I think?? I have heard of this in connection with WG on this forum, in some old posts. I don't remember specifically the swollen inside cheeks but there was so much going on that there's a lot I don't remember. I'm sure no two cases are exactly the same. Just rang a bell when you said salivary gland.

[Debbie C]

Anne,in the beginning I was on ctx,pred and bactrim.I went into remission and the reumy here took me off everything. The the reumy at CC wanted me on mtx and imuran and I had a rtx infusion (not all at one time though ) but I couldn't tolerate any of them that's why I am only on pred.
What did they do for your parotid gland. That sounds like it could be that cuz I feels like my sinuses are just draining in my thoat. I just ate some yogart and my cheek is swollen again sooo I don't know what's happening. I'll see what the ent says Tues.But did they put you on any sort of meds for your glands ?

[annekat]

Well, Debra, I may be confused about where in the mouth the salivary (parotid) gland drains to.... I'm now thinking the gland is where saliva is made and drains into the mouth to help with chewing and digestion. So if the area was inflamed, the drainage would be affected and the inside cheek area could get swollen and red.... just a guess. But I think it is normal for sinuses to drain into the throat and esophagus, and that is a different process than the saliva draining into the mouth. Again, a guess, with some confusion...?

While I was in my ENT office getting my nasal biopsy, they biopsied the parotid gland at the same time, since it was a semi-hard lump and could be cancerous, though not likely. After that, the swelling went down, so I don't know if maybe they sort of popped it in the process or it was mostly liquid in the first place? I don't remember hearing anything about it after that, no report of cancer or anything. And since I wasn't having salivary problems or swelling in my cheeks that I remember, I pretty much stopped thinking about it. I WAS already on prednisone, though not yet on CTX, and the ENT did increase the pred dose for general purposes, since he was pretty sure I had Wegs, as evidenced by my saddle nose, and that may have helped the swelling in the gland as well.

[Psyborg]

I was looking at Steroid withdraw information. I find it interesting that anabolic steroids have very similar symptoms. Why in the world anyone would intentionally put themselves in the same symptoms baffles me lol. Though obviously it helps them work out and recover from workouts.

[Sangye]

Anne, I'm so glad you're feeling better. Yay!

[annekat]

Anne, I'm so glad you're feeling better. Yay!

Thanks, Sangye. Still some not so great days but overall, yes, much better. Right now I'm stressed because I need more MTX this week and am having problems getting it covered by my Medicare Part D plan, which is with Humana. They've been covering it but some glitch has come up regarding the Bactrim I'm on at the same time and they want an authorization from my doc... I'm getting a very bad impression of them, with the inconsistency and contradictions I get from their various representatives.... in other words, I think they suck and I want to switch! On top of that, my doctor's office did not follow through today on getting it authorized. I will have to pay $54 instead of $5 for it if someone doesn't do what they are supposed to do. I don't have it. Arrghh! I will pay for it and let something else go if I have to. And then borrow some money from a relative, which I'd probably have to do anyway.... this is a horrible time of year for me. There's always something to gripe about, I guess...

[Sangye]

Sounds like you might need to raise a little ruckus at your doctor's office. Ask the person in charge if they'd like to pick up the $49 difference it'll cost you for them to drop the ball. I'm so sorry that you have to have this extra stress.

[annekat]

Sounds like you might need to raise a little ruckus at your doctor's office. Ask the person in charge if they'd like to pick up the $49 difference it'll cost you for them to drop the ball. I'm so sorry that you have to have this extra stress.

Thanks, I'm glad I griped.... I needed the sympathy. I'll call them first thing in the morning (again) and try to speak to a more helpful person, and if necessary, ask what I should do instead of taking my MTX, since I can't pay for it. I'm being a little paranoid; since I'm not crazy about my doc, I'm imagining him thinking it's not his problem and not caring that I have to pay the extra. That is probably over the top. More likely, I got the wrong person this morning and she didn't get the message through properly. I'm being paranoid about other things in my life, too! March is my most difficult month, and March is the month two years ago when my big Wegs flare happened that got me dx'ed. How I got through those days financially, I don't know.... generosity of family members, mainly.

[Sangye]

You know what's helped me when I've gotten in situations like that? Visualizing the perfect conversation beforehand. What would you say, how would they respond, etc... if it went the best possible way. It's relaxing and every time I've done that the conversation goes that well or even better.