Friday, February 24, 2012

How I Learned That Taking Immunosuppressants Makes One Prone To Infections...


I really, really, feel crummy. So crummy that I'm wearing around my Gitche Gumee hoodie sweatshirt and pink jammies with schnauzer footprints all over them and my black Smartwool socks for the day and I DON'T CARE WHO SEES ME.

And aside from drinking water, water, and more water and making frequent trips to the bathroom, I've determined to plant my sorry butt in bed until I feel all better. Which had just better be soon.

It all started about three or four days ago, when I began noticing those early signs that I may be developing a urinary tract infection. Unfortunately, I'm pretty familiar with what those symptoms are: urgency (yikes-gotta-get-to-the-bathroom-NOW), frequency (WHAT? Again? I just went!), and dysuria (whoooooeeeeeee....that smarts......), among others.

But my symptoms were pretty mild so I just started drinking more water and unsweetened cranberry juice. After another day or two, I had to grudgingly admit that these early and fairly mild symptoms were moving more towards the whoooooeeeeeeeee stage, so I popped a few Azo pills, also known as Pyridium or Urogesic. This medication is sold over the counter and is actually a dye that when ingested, is excreted in the urine and acts to soothe and decrease pain in the bladder. It also turns urine bright orange. BRIGHT orange. Once when the kids were little, I forgot to flush the toilet while I was on this stuff, and I freaked out little DN1. I lied and told her it was just a new toilet cleaner....

I also made a trip to my local drugstore and bought an Azo UTI test strip kit. (See what lengths I will go to lately to avoid yet another trip to see my doctor? I mean, they're great and all....but I feel sometimes that I just don't. want. to. go. there.)

I figured if the test strips showed that I had an infection, I'd give my doctor a call. But the strip remained unchanged after I obediently peed on it and then waited for the prescribed amount of time.

Well. I must just be imagining things, I thought. But gee, the symptoms didn't go away. And I started developing chills. And finally yesterday, even the Azo wasn't helping my symptoms.

So. Here again. Julia's body is screaming Hey! Stupid! Something is wrong! Get on the phone with the doctor, you dodo-head! and Julia is all la-de-da-de-da.....::fingers in ears:: not listening...not listening at all.....

I crawled into bed after dosing myself with yet another round of Azo and Tylenol, and slept the afternoon away, convinced that when I woke up everything would be dandy.

And, of course, I woke up in pain and sweaty and shivery.

What a dope.

By now it was 5:30PM and of course my doctor's office hours were over but lucky for stupid me, the clinic has a 24 hour advice nurse. She was very helpful and didn't scold me at all for letting things get out of hand. So after all the preliminary information was taken care of and I had described my symptoms and she had my medical chart up on her computer screen, the conversation went something like this:, yeah. I am sure it's a bladder infection but the stupid test strip said I didn't have one.

Nurse: Ok. I see that you're on prednisone AND immunosuppressive drugs, right? Let's see....ah...Gengraf. Oh, yes, that definitely puts you at a higher risk for infections.

Me: Um. Yes.

Nurse: Gee. That makes you very susceptible to these kinds of things, doesn't it?

Me: Um. Yes.

Nurse: So you've had these symptoms for three to four days now?

Me: Um. Yes.

Nurse: Have you had a UTI before? Oh, I see that you you're familiar with the symptoms.....

Me: Um. Yes.....I should have called sooner, I guess...

Miss Tactful Advice Nurse Who Has Heard It All just diplomatically commented that she was glad that I had called in. Finally. And sent a message to an on-call physician with  the promise that I would be receiving a phone call from said doctor within the hour. And I did.

Miss Young On Call Physician was extremely helpful. I was instructed to head into Urgent Care and pee into a cup for a urine culture, and then over to the pharmacy to pick up a prescription for antibiotics.

Me:  But what if my culture is negative like that test strip was?

MYOCP: Good question. The thing is, I'm pretty sure you've got something going there, even if the culture doesn't show anything yet. People on these drugs can harbor infections and I don't want to take a chance that this develops into a kidney infection or worse.

Me: OK. (The urgent care department was a half hour drive away from my house, but by this time I was in so much discomfort, I would have volunteered to take a flight to the moon if that would bring me relief.)

Fast forward:

Pharmacist: So here's your antibiotic. Just a warning -- this could cause some diarrhea.

Me: OK. (I didn't care. I just wanted to pee without pain.)

While driving home I thought about what the pharmacist had told me, and had the brilliant idea that maybe I should run by another pharmacy and pick up some probiotics to head off any GI problems to add to my UT problems. A quick assessment of the dull pain in my lower abdomen led me to  the decision to just get home and get those antibiotics chasing through my bladder, regardless of their potential side effects.

MYOCP called just moments after I had arrived home to confirm that, yes, I did indeed have one whopper of a bladder infection.

(Dumb stupid over the counter UTI test strips.)

I thanked her profusely, and as I hung up the phone, realized sheepishly how fortunate I was to have such good care available to me in spite of my stupid tendencies to ignore everything my body tells me.

After I was tucked into bed that night, the thought occurred to me that since I was immunosuppressed, gee......I was prone to INFECTIONS. (Duh.) (Yes. It took that long for me to finally get that burned into my brain.) And that putting a whole bunch more BACTERIA via a probiotic capsule into my already immune-depressed self was probably just asking for more trouble.

I couldn't sleep, partly because I was still in the whooooeeeeeeee ouch phase, but also because I wondered if probiotics could really cause problems for me. I hadn't thought of that before. I rolled out of bed and headed for the computer. Turns out, I was right. A Google search turned up a zillion articles, most from reputable medical sources, that cautioned against using probiotics in immunosuppressed patients.

Gee. That would be me, I guess. (See? I can be taught. Eventually. After painful stimulus in response to unwise behaviors.)

The sites that promote the sales of probiotics, however, had a different story to tell and product to sell, and many made the claim that their product was safe for everyone. I was turned off my computer and headed back to bed, feeling lucky that I hadn't made that last minute stop at the pharmacy.

So. Here I am, telling y'all my tale of woe.

I hope y'all are learn much more quickly than I do. Whooooooeeeeeeeeee........


Leslie at SugarAndSpiceADK. said...

Hi Julia--so glad you're doing better--UTI's are the WORST! I've had 2 since being on Methotrexate, plus a few yeast infections...can you tell me the benefit of being on Gengraf over Methotrexate? Because I'm having a hard time on the pill form of Methotrexate, and am probably switching to the injections...have never even heard of, what a wonderful resource you are!

ShEiLa said...

I have been tempted to try those OTC strips before to diagnose my own UTI. Now I will skip it.

I have had so many of these and I still try to pretend I am not coming down with one.

I leave Indiana today... I have been having on/off UTI symptoms for a month... I guess that is poor decision making on my part. My lungs are struggling after my baby sister was here with her sick kids... luckily I have an appointment Monday morning with my family doctor. I just may need it.


Anita Rowe Stafford said...

Take care Julia, so sorry you have a UTI. Those little demons were unknown to me until just a couple of years ago, now they come around regularly. Btw, love your bunny plates, option 2 is my choice!

Blogger Mama said...

Wow, Julia! I feel as if you just wrote a blog post for me! I had pretty much the same experience this week. I had the UTI symptoms, I sat around a day or two hoping it wasn't, and then I just gave in and called in for the meds.

Hope your meds give you some relief, without the other "delightful" side effects!! :o)

annie said...

If you're on antibiotics , can you replace the probiotics with yogurt?

I can't say I'm familiar with UTI's,but thanks for the information,so I'll know what to look for if I'm ever affected. Be well.

Debbie said...

Hope you are feeling better. Don't beat yourself up for not calling the doctor sooner. I am like you in that I cringe at the thought of an extra doctor's visit in addition to the regularly scheduled visits. Good point about probiotics - thanks for all you do.


Julia Oleinik said...

Thanks, everyone. I"m beginning to feel much better.

Leslie - I'm on Gengraf mostly because of my lupus. It's an immunosuppressant most commonly used for organ transplant recipients (in much higher doses, of course). So it probably wouldn't be a drug that your doctor would consider exchanging with Methotrexate. It helps my psoriatic arthritis and the cutaneous lupus stuff.

Yvette said...

Julia, I found your blog a week ago and I feel as if I found myself, my words, my thoughts! I struggle (really struggling right now) with Sjogrens and neuropathy. Lately the pain has become so intense that I feel as if I am constantly jumping out of my skin. I am having problem eating many foods and only wanting to eat bland foods, which usually ends up being pasta and bread. I have been dealing with this for twenty years and you would think by now I would know how to deal with it......BUT I still question why and why. I actually ask my husband the other day if I am really sick or just lazy.....The look on his face was priceless and so encouraging. This is a down time for me( worst than most down times) and all I can do is think of who I use to be and how much I would love to be active again. The toxicity in my body is so high that being around many things makes me sick. My get away use to be art, but that has also be taken from me. I am thankful for finding your blog, to know other people are experiencing the same pain and knowing that I am not crazy feeling the way I do. I also HATE to go to doctor's.... I am tired of them finding just another problem and prescribing just another pill for relief. Thanks for sharing your heart with us!

annie said...


I just noticed your new pic on the sidebar....really nice! Your face seems thinner, have you lost weight?

Julia Oleinik said...

Annie - Girl. You. Are. Wonderful.

Well, I've lost a small amount of weight, but mostly my parotids have finally settled down and are less swollen.

Shara from Seattle said...

I am horrified and facinated at the same time.I can't figure out if we are survivors or passengers on a train about to jump the rails.I just bought probiotics.Now I will only use them randomly. Julia, I'm so happy that you opened up the world of Sogrens for me, so many voices talking about this disease but, I'm freaking out right now.Nice picture.

FFW said...

Why is your blog so funny to me? (Besides the fact that I am sick in the head) Your comment, "painful stimulus in response to unwise behaviors" is me, to a "T". Reading your post, I was nodding, smiling, the whole thing. I got to that part, and literally LOL'd. Not because I enjoy your pain. Because I do the SAME THING OVER AND OVER. And it's funny to me.

Because of that, and so many other things, I have something for you. You can find it, here:


Unknown said...

As I sit on the toilet trying to pee, I’m doing research & lo and behold this entire thread is my current situation!!! Calling my Rheumatologist first thing in the morning! Thank you so much for sharing!!