CellCept and Bronchitis?

[NikkiNicole]

Hi Guys!!
So I started prednisone after I saw my rheumy and got back on CellCept. Four pills a day! Anyway, the prednisone is a devil drug but it is also my hero. Sinuses and joint pain vanished.
Except,... Now there's this.
OnWednesday I could barely swallow. It felt like there was a spiked ball in my throat that caught on fire and wiggled when I tried to swallow. Yesterday, I felt generally off. My nose burned a little. Then my throat felt gunky and I kept coughing. I had taken the day off because I had to have a toenail removed (ouch) so I came home and vegged. Last night felt weird ...
Today my chest hurts, I'm coughing up thick clumpy yellow mucous, my nose is running and my throat hurts mainly from coughing.
My chest hurts BAD when I cough. My stomach now hurts too. I'm not coughing that much but when I do ... Whoooo boy!!
I'm thinking its just a run o the mill cold. I don't think a week on CellCept would make me immunosuppressed enough to have caught something bad.
Trying to decide if I take tomorrow off or if I'll be good to go to work.
Anyone else deal with bad colds on CellCept??

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[Birdie]

Anyone else deal with bad colds on CellCept?

Have not taken CellCept but I'm oh-so familiar with what you described.

For me those symptoms have started off exactly as you described and I went downhill fast, ending up in the hospital seven times with difficult respiratory infections. After a year of that I figured out how to work the medical system and got my PCP to believe and quickly act on what I said was wrong (instead of waiting for cultures to develop).

The problem was not so much a problem once I started getting antibiotics within a day of symptoms.

Gary

[NikkiNicole]

I'm feeling just so tight in my chest. I'm not coughing anything up now but I'm still coughing.

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[Alysia]

I doubt that it is a reaction to the cellcept. I think its too early to have any from it. it still can be wg flaring and/or flu and/or throat/lung infection because the pred makes you more immune compromised. cant you see any doc, to check you ? even ER to see your blood tests ? maybe cxr ? hang in there and take good care of yourself.

[annekat]

It sounds like what I had when my lungs got bad right before diagnosis. I may not have coughed up as much stuff, but what I did had bits of blood in it. It hurt to cough, for sure, more in the lungs than in the throat. Sometimes I coughed so hard I was afraid of cracking a rib. Sometimes I'd feel a pleural rub, sort of a crunchy feeling as the layers of the outer lung rubbed against each other. I also had a lot of sinus involvement, but had been dealing with that for a couple of years, having not been dx'ed or treated. Anyway, hard to say if this could be bronchitis or some other kind of infection as opposed to a Wegs flare. I would get it checked out.

[NikkiNicole]

I had been to the doctor and did antibiotics. Of course now ... I still feel awful. I'm still all full of phlegm. It's mostly in my throat and sinuses. I cough still and it hurts in my back down on the lower right side of my ribcage near my spine. I'm also terribly terribly terribly dizzy ALL the time. I can't turn my head, I can't walk around a corner, I can't be the passenger in a car, looking at my phone bothers me, the computer screens at work. I am dizzy non stop ... which means then I get nauseous from all the spinning and I've had non stop weird headaches. I've just felt weirder than I ever have since getting over the initial bronchitis stuff.
Not sure what I am supposed to do. I emailed the doctor but I doubt that will go anywhere.

[Birdie]

I had been to the doctor and did antibiotics. Of course now ... I still feel awful. I'm still all full of phlegm. It's mostly in my throat and sinuses. I cough still and it hurts in my back down on the lower right side of my ribcage near my spine. I'm also terribly terribly terribly dizzy ALL the time. I can't turn my head, I can't walk around a corner, I can't be the passenger in a car, looking at my phone bothers me, the computer screens at work. I am dizzy non stop ... which means then I get nauseous from all the spinning and I've had non stop weird headaches. I've just felt weirder than I ever have since getting over the initial bronchitis stuff. Not sure what I am supposed to do. I emailed the doctor but I doubt that will go anywhere.

In your condition I went to the emergency room... seven times in six months. Can't be certain if you're as bad or worse than I was, but it sounds ohhhh-sooooo similar.

The seventh time, when once again the ER doctor started off in what was clearly the wrong direction, I got mean & nasty with him. Well as mean and nasty as my personality will allow, which wasn't that mean and nasty with a 105 degree fever and O2 in the 70's. O2 that low and your brain doesn't work so well. Could barely even talk, passed out in the ER many times.

Anyway, it took seven trips and seven admissions in the hospital to get their attention and make them find the problem. Infections, lots of infections, more infections than they could identify before starting to treat them. Infections they failed to find on the first six admissions. It took a very dedicated infection doc to even know how to find them.

So don't be afraid to get help even if it means going to the ER, like right now, cause this has been going on far too long for you take it anymore.

[whatthewhat]

that sounds awful. Dizzy to that degree would worry me, and I would think of taking my weggie to the e.r….

I had been to the doctor and did antibiotics. Of course now ... I still feel awful. I'm still all full of phlegm. It's mostly in my throat and sinuses. I cough still and it hurts in my back down on the lower right side of my ribcage near my spine. I'm also terribly terribly terribly dizzy ALL the time. I can't turn my head, I can't walk around a corner, I can't be the passenger in a car, looking at my phone bothers me, the computer screens at work. I am dizzy non stop ... which means then I get nauseous from all the spinning and I've had non stop weird headaches. I've just felt weirder than I ever have since getting over the initial bronchitis stuff.
Not sure what I am supposed to do. I emailed the doctor but I doubt that will go anywhere.

[annekat]

The dizziness is miserable, especially if it becomes real vertigo, which since you said you were nauseous, sounds at least close to it. It could be all the inflammation in your ears making that happen. I've experienced vertigo several times since having WG, including before dx. There is more than one possible cause, but it usually involves the inner ear losing its ability to regulate your sense of balance. I'm far from being able to give any scientific explanations, but I do know some things that help and hinder dealing with it. Too much caffeine and chocolate will trigger it if you are predisposed to it, as will alcohol. When I have an episode, I may have to stop drinking coffee at all for a few days. Black tea is OK, for me. The drug meclizine, in some versions of Dramamine, will prevent a full-on attack if you feel dizziness coming on; I take 50mg. in that case, and another 50mg. later if it doesn't improve, and if I'm suddenly hit with vertigo, I'll take 100mg, which is more than they say to take, but what works for me. It can make you sleepy, but doesn't me, so much. As for nausea, the drug ondansetron (Zofran) will help that a lot. My ENT wrote me a prescription for Lorazepam, saying it worked better than meclizine, and I tried it, but didn't like it much. It made me too groggy. Haven't tried it in a full-on attack, though, and it might be fine if you just want to sleep, anyway. Good luck, I hope the dizziness passes and doesn't come back. As for your other symptoms and stuff, I tend to agree with the others here and on another thread, that you should see a better WG specialist such as Dr. Chung in SF, and that you should go to the ER a little more often, when things get that bad. Having a crappy infection and Wegs at the same time is a crappy combination.

[NikkiNicole]

I get so damn tired of how they treat me in the ER. It's really upsetting and I find myself wanting to unhook myself and leave. I have near constant heart palpitations (yet the EKG is ALWAYS normal so it must be in my head). I am dizzy and feel like I am going to pass out but my O2 was 95 so clearly I must be faking it. Now, today, I just sort of feel like I've taken sleeping pills and am in that state before we drop off. There's pain behind my left eye that intensifies when I tilt my head forward.
Basically, I hate everything about everything right now.
I have an apt on Tuesday to talk with one of my GPs colleagues about the dizziness. My rheumy thinks it's completely unrelated.
In a nutshell ... I just hate it all. I feel like keeping my complaints to myself and pretending there is absolutely nothing amiss. If I go into the ER half dead, maybe then they'll pay attention.