Sick while immuno-suppressed

[norcalian]

I woke up yesterday and didn't feel well (more than usual). By late morning I had developed a low grade fever of about 100.4. I called Kaiser and got an appointment with a GP that was there on Saturday. She did a chest x-ray which didn't show anything (besides the usual stuff that is taking a while to heal) and ran some blood tests...some I've got back and some I haven't. The GP was able to get a hold of my Rheumy...they prescribed Avalox (400mg/day) and sent me home with instructions that if my fever got to 101+ that I go to the hospital. My fever broke that afternoon (with out medicinal assistance) and then came back again today. So I obviously have something, I just don't know what. I'm new at all this and was very afraid of getting an infection. Now that I have one, I'm wondering what to expect. What should I be watching out for? I finished four treatments of RTX about two months ago, I am now on 50mg or pred and 175mg of Imuran.

The thing that really sucks about this is that I just started back at work this past week...already I'm going to start using up some of my sick time. Perhaps it was too soon to return to work...

[NicShaf]

norcalian,
Sorry to hear your sick. I haven't done RTX, I'm on CTX, but I got a cold a couple months ago. I took it extra easy, and it seemed to run the course of a regular cold, just longer. It took about 6 weeks to go away.
Hope you start feeling better soon!

[Sangye]

It can really vary. I've had some simple colds hang on for weeks, and other times a cold clears up much faster than normal. I've had pneumonia and that was bad.

I'm upset that your GP would prescribe such a heavy-duty antibiotic right off the bat, though. Avelox is in a category of antibiotics that is very hard on the body. And from your description there was no evidence that it was a bacterial infection. That is classic overuse of antibiotics. Most infections are viral, in which case antibiotics will not only be useless but they will further weaken your body.

I'm glad you're feeling better and didn't take the meds!

[norcalian]

Sangye, I actually have been taking the Avelox...but now I'm starting wonder about it. what I haven't been taking is fever suppressors. So my fever goes away in the late afternoon on it's own and then returns in the next day in late morning. It's already back today. Do your colds sometimes come accompanied with fevers?

It sounds like everyone experiences getting sick while on immuno-suppressing drugs...I'm just wondering when I really need to worry. Are low-grade fevers something to be especially concerned about?

As you might tell...i'm a bit of a worrier. It runs in my family :smile1: WG is wreaking havoc on that aspect of my psyche...I'm gad there are forums such as this with a lot of good information.

[Thakator]

Hi - - There are, of course, numerous things that can get to us while we are suppressed - - and persistant fevers can be associated with more than one of them. Makes it all the more difficult to determine the culprit. But, with fevers as a symptom, it's best to get an answer and to take action.
If your fevers continue (and you say that they already have), please read my posting dated 4-20-11 entitled Cytomegalovirus in the Weggies Stories section. Please understand that I am not suggesting this to be your situation - - but it is a possibility, especially given the fact that 80% of us have the virus in a dormant state just waiting for our immune system to stop functioning before it springs forth (with a vengence if left untreated). Most docs won't automatically test for it so you may want to ask about it if no other definitive cause is found. My fevers, by the way, like yours consistently came on in the mornings and went away on their own in the afternoons. And, I had no fevers when I've had a cold with the Wegs.
Good luck, hope that you find the cause and that it's not CMV. Ron

[Chris G]

Not to change the subject here, but I'm wondering.......Norcalian - at 8 weeks post rtx have you begun to taper your pred? 50mg is such a high dose, and it seems like with both rtx and imuran on board, you should be able to significanly lower the pred very soon. Of course I don't know your history - perhaps your wg is advanced or very stubborn.

I hope you shake the bug soon. I had rtx in May, and I'm constantly worried about getting sick.

[norcalian]

Ron - CMV sounds nasty. I mentioned it to my GP today. He didn't really say much about it. I'll address it with my rheumy if the fever persists. I read your story about the experience...it sounded like it was an ordeal, I'm glad you were able to get through it ok. I've grown up getting cold sores...which I think is from CMV...so I would guess I'm one of the 80%.

Chris - I also think I'm taking a lot of prednisone. I started at 80mg/d and was on that for the first 6 weeks...I think it had something to do with my size and I started to get kidney involvement after being released from the hospital. from 80 I went to 60 and the to 50. My rheumy is tapering me 10mg per month. It's not fast enough for my liking (I'd rather be done with it) but I guess it's a common taper schedule...what was your experience?

[Chris G]

Before rtx my pred dose was 20 or 22.5mg (one or the other). Oh yeah, I think we dropped it to 20, about a week after the first infusion. I'm down to 12.5 (today in fact!). Hoping that symptoms dont reappear as they did in early July - I'll be hanging out at 12.5 for a while. I've realized that the lower your pred, the slower you have to taper (you might say that it's been beaten into my by my weggie friends).

A 10mg per month reduction does sound slow at that high a dose - But if you still have kidney concerns, that might be the reason.

[norcalian]

A 10mg per month reduction does sound slow at that high a dose - But if you still have kidney concerns, that might be the reason.

Yeah - I'm not exactly sure what the reason is. My Rheumy doesn't like a lot of questions...it's been a bit frustrating of lately. I will be switching to a new rheumy soon (one closer to where I live)...so maybe I can get things to speed up then or at least get a good explanation.

Are you finding that a lot of the side-effects are subsiding now that you're at the dose you're at?

[Chris G]

It's hard to tell whether the side effects are diminished. My face is no longer just "puffy" from the pred, it's also fuller from the weight I've gained........although, hmmmmm looking closely, yeah - It's less round! I guess I'm slightly less hungry than I was on higher doses. As for internal side effects, I never had may of those that I'm aware of - my glucose never increased, blood pressure remained within normal range. Other silent side effects........who knows.......my bones could be crumbling - I've have fallen behind in the bone protection department, as I had to stop taking Fosomax. Waiting for approval for another drug.

[Sangye]

Norcalian, I'm a big worrier, too. I was even before Wegs, but not about my health. I get where you're coming from. Wegs and complications have bitten me in the butt so many times I'm a little twitchy. LOL

Ron's reminder about CMV is excellent to keep in mind.

Fever suppressors are not good. The body creates a fever to kill off the pathogens. Only use fever suppressors if it's dangerously high.

It's difficult to say what your current fever pattern indicates. It may be a viral infection running its course, or it may be a bacterial infection that isn't being cleared with Avelox. Avelox is very powerful. If it's gonna work, you'll notice a difference in the first couple of days.

[norcalian]

So as an update...my rheumy called me today in response to an email I sent him asking him why PCP or some other form of fungal pneumonia wasn't being considered more seriously since I seemed to have most, if not all the symptoms (mild dry cough, SOB, weakness, tightness in chest, fevers, etc). He set me up with an appointment with a pulmonologist today (it was actually the same pulmonologist that first diagnosed me with Wegener's while I was in the hospital - everyone else thought I had TB). At the appointment, the pulmonologist looked at an xray that I got last Saturday and said that he was 99% sure that I didn't have PCP or some other pneumonia...but since my O2 levels were low (90%) that he would do a bronchoscopy to make sure. So I go in tomorrow to get that done...which I'm glad they're being cautious...but I certainly don't enjoy having to do the procedure...they put me under for it and it's scary loosing that control.

[Sangye]

Just seeing this today....I'm glad they're taking it seriously and I hope the bronch went well.

[norcalian]

Thanks Sangye - the bronch went well enough.

The pulmy said that he didn't see any infection in the lungs but sent a sample to the lab anyway (via lavage rather than biopsy). He did say that my bronchial tubes and upper airways were pretty inflamed. He said that he thought that it was from the Wegener's...although it's refreshing to have a doctor who is willing to associate symptoms to WG after hearing so many on here talk about how their doctors don't do that, I'm a little concerned about what that could mean...possibly a flare...even though I don't think I was in remission yet. The interesting thing is that my lungs and kidneys have been showing a lot of improvement while my sinuses and throat have not (perhaps even getting worse). :mad1:

[Sangye]

I don't remember when you had rtx, but my symptoms always get worse right before the rtx kicks in. It's bizarre, and even though I know it happens I get a little freaked out every time. Maybe that's what's happening with your sinuses and throat??

[norcalian]

I don't remember when you had rtx, but my symptoms always get worse right before the rtx kicks in. It's bizarre, and even though I know it happens I get a little freaked out every time. Maybe that's what's happening with your sinuses and throat??

My last RTX infusion (I got four of them) was in early June...I can't remember the actual date. That's interesting about your symptoms getting worse before the therapeutic effect of the RTX. I wonder if that's what is happening. I feel an awful lot like I did before I was diagnosed. My fever got up to 102 today. I was told by my Rheumy last weekend if my temp got above 101 I should go to the hospital. So I called his office this morning and never got a call back - but instead got a call from my GP's office asking when I wanted to come in for an appt. (My rheumy had passed me on to my GP). My GP is a pretty good doctor, but he knows nothing about WG. All he'll do is give me some cough medicine and tell me to take some Advil. I'm feeling pretty frustrated right now.

[norcalian]

My Rheumy just called me. My Bronch came back positive for PCP. Going to the hospital now. I'll update you all later.

[Sangye]

Oh no... I hope the treatment works quickly. It can be difficult to treat. :sad: