Infection vs Medication reaction

[Lightwarrior]

I was admitted to the hospital on Thursday afternoon after weeks of spiking fevers in the afternoon and morning with chills every evening. I had two trips to the ED once blood cultures, urine cultures with nothing growing. They admitted me with a dx of sepsis. My PCP has been throwing fits with all my specialists that something is wrong and after two visits last weeks to my Rheumy and my urologist I ended up in the ER after I developed really bad chills at work and a temp of 103.7 F. For a while I still felt strong underneath the fevers but have been weak as a cat for a few days now.

Infectious disease doc thinks that either it is a side effect of the Methotrexate (I took my last dose of Cytoxan on 8/20 and started my first dose of Methotrexate on 7/24). Or..with the mass production of kidney stones I have been having including 2 that obstructed with one requiring a stent and lithrotripsy, that some of the remaining stones are infected, which he says if the infection is inside the stone then it won't show in a blood culture unless the stone releases some of the bacteria at the right time.

Anyway....so here I am on 4.5 grams of Zosyn every 6 hours fluids running to try to flush the stones out. I have had to fight with the hospitalists who know nothing about Wegeners but tried to change all my medications around. The first doc thought it would be a good idea to stop everything and i had to get one of our Intensivists to come up to help him understand that he shouldn't mess with my meds. Then I had one decide to increase my beta blocker from 50 twice a day to 100 twice a day even though my pressure is running 104/60. Thank God the nurses here know me and tell me every change the hospitalists try to make so I can block them if needed.

I hope to be out soon, no appetite, which is not that bad because I have very loose stools if I eat anything (stool samples are negative also). My rheumy actually came to see me and seems to think that I am mass producing stones because of some hidden side effect of the time I was on Cytoxan????

Good news is that all my CT scans show negtive lung, kidney and sinus involvement so rheumy doesn't think Wegs is awake.

I hope all is well with you all.

[pberggren1]

Oh boy! This sounds very scary Light Warrior. I am very worried for you. I hope they get to the bottom of this soon for you. Some docs are just plain stupid. Like why on earth would he double the beta blocker if your bp is already low? How did he graduate from med school? Good to hear that the CT scan shows no lung, kidney, and sinus involvement. I hope your Rheumy knows what he is doing. Are you confident with your docs?

[Lightwarrior]

I hope your Rheumy knows what he is doing. Are you confident with your docs?

Not really, I am living proof of why Sangye, elephant, Jack and others nag about the need for a Wegs specialist. I hear that Cedear Sanai is supposed to be developing a Weg center....I can't wait that is only 4 hours from my driveway.

I think my rheumy is learning, my PCP is mad because no one would take my fevers seriously, just a lets wait and see what grows approach. How are you doing?

[DEE]

Sorry to hear your having a tuff time hope they get things sorted soon take care DEE x

[pberggren1]

Not really, I am living proof of why Sangye, elephant, Jack and others nag about the need for a Wegs specialist. I hear that Cedear Sanai is supposed to be developing a Weg center....I can't wait that is only 4 hours from my driveway.

I think my rheumy is learning, my PCP is mad because no one would take my fevers seriously, just a lets wait and see what grows approach. How are you doing?

That can be so frustrating.

4 hours is still a long way to travel, though I used to travel 3 and sometimes still do.

It is so tough to get to see a Wegs Specialist. Has your Rheumy ever consulted with one of the VF docs?

[Lightwarrior]

Sorry to hear your having a tuff time hope they get things sorted soon take care DEE x

Thanks for the hug Dee

[Jack]

Sorry to hear you are still having such a tough time of it, hope they can get you sorted out soon.

It is scary to hear all the stories on these pages (and my own experience) about us patients having to take control of the drugs prescribed to us. It makes you wonder how many of the less well informed are suffering due to poor standards of care and doctor's mistakes.

[elephant]

LIghtwarrior, you have been going through a rough time with those kidney stones. When I had my drug reaction to Imuran ...I had fevers of 101-103, flu like symptoms, nausea and vomite a couple of times, chest/back pain. I too can't believe that doctor who wanted to double your beta blocker?!? Here's a big hug from a yellow friend.

[Jack]

They halved my dose of Beta Blocker while in hospital which I went along with because my pressure was so low. I then had slight heart palpitations and a-rhythm which I mentioned to the doc and said I was OK with it because I knew it was due to the dose change. But the doctor was having none of it and said that the only effect it could have was on blood pressure.

The government website on drugs says in a red box -

"Suddenly stopping atenolol may cause chest pain, heart attack, or irregular heartbeat."

I really don't think it is right that I know more about it than the doctor!

[Sangye]

Oh Lightwarrior, I'm so sorry to hear about your condition. I hope they can figure it out quickly. The infected kidney stone or mtx reaction ideas sound likely. Have they taken a chest x-ray? Mtx loves to cause pneumonitis.

I'm also wondering if they should test you for Valley Fever and things like Rocky Mountain Spotted Fever. You don't have the typical symptoms, but any cyclical fever makes me think of fungal and rickettsial infections. The pred can easily mask the other symptoms. Also, they often progress slowly, so classic symptoms could be weeks away. I know you have ID on your case, but they might be so focused on the other things that they don't test for things they normally would.

So glad you have the background to advocate for yourself. Hang in there, friend.