How worried should I be about my symptoms?
September 5, 2009 5:08 PM Subscribe
Should I be worried about this? I went to the doctor this morning to get checked out for cold/flu symptoms; I didn't think it was serious -- I just wanted to check that I didn't have H1N1, but the doctor told me that the treatment I'd been getting for prostatitis was "highly unusual for someone in their 20s", and he said I should immediately stop taking the antibiotic I'm on (Septra/Bactrim) because I might be having an allergic reaction to it, or possibly an autoimmune reaction.
The doctor told me, in the strongest possible terms, that I should write up a description of the treatment I've received so far, with dates, and bring it to another urologist to get a second opinion. Since I won't even be able to schedule an appointment until Tuesday, and it will probably be a week or two before I can actually get in, I might as well post here to see what opinions MeFi experts (or non-experts) have about this.
About a year ago, while seeing a sports medicine doc for an ankle sprain, I offhandedly mentioned that I was waking up once or twice a night to urinate, unless I avoided drinking any water during the afternoon. She said that was just part of getting older, and that I shouldn't be worried about it. My symptoms gradually got worse, but I avoided seeing a doctor for a really long time because the deterioration was so slow, and I'd already been told it was just a natural part of getting older. Eventually, it got to the point that I was waking up every couple of hours to urinate. My life was a total disaster. I was too tired to functon at all. At that point, three months ago (6/26), I went back to the same doctor, who did a urine culture (negative) and prescribed a week of doxycycline (100 mg, twice daily). My symptoms completely disappeared for a couple of days, but they eventually reached a midly annoying steady state level (waking up every four hours or so).
After going off the doxcycline, my symptoms started getting worse, and I got a referral to a uroligist, who did a urine culture (negative), and a DRE (inflamed prostate). He put me on a month of Cirpo. My symptoms cleared up after a few days on Cipro, but after a week or so they went back to the same steady state (waking up every four hours) that I had when i was on doxycycline. After the course of Cipro was up, my symptoms got worse, and I went back to the same urologist (on 08/19) who did another urine culture (negative), a semen culture (negative), and perscribed a month of Septra (800 mg/160mg, twice daily), and gave me some samples of Enablex to "experiment with". The same thing happened again: my symptoms initially went away, and then they came back, but weren't as severe as they were when I wasn't on antibiotics.
I started the Enablex last Sunday (8/30), but stopped last Thursday (9/3) when it didn't seem to help.
And now for the symptoms that really seemed to freak out the doctor I saw today. Three days ago (9/23), while applying sunscreen, I noticed that the lymph nodes in my neck were tender and swollen. I also had some mild eye irritation that I'm not sure how to describe. It felt really uncomfortable, in a weird way, if I moved my eyes to an extreme position (e.g., if I tried to look right without turning my head).
You know that gunk you sometimes have in your eyes when you wake up? My eyes kept generating that stuff all day Friday, and by the end of the day, my eyes were really watery and bloodshot. It looked like I'd been crying all day, but it wasn't affecting my vision. This morning, when I woke up, I had a mild fever, a sore throat, my lips felt like they were burning very mildly, and my eyes were tearing up enough that my vision was just a tad blurry. Like I said above, I went to see a doctor to make sure I didn't have swine flu, and after giving the above description to the doctor, he sounded really worried and told me to stop taking Septra immediately, and that I should see a different urologist as soon as possible. Also, he gave me Erythromycin ointment, in case I have an eye infection, and Optivar drops for the eye irritation.
Since this morning, things have gotten a bit worse. For a while, my eyes were watering so much that tears were streaming down my face. It's not quite so bad now, but my vision is still blurry enough that I wouldn't feel comfortable driving, or even cooking The burning on my lips is a lot worse; I can see skin blistering off my lips and the inside of my mouth, and my ears are red and warm to the touch.
Just as an aside, the urologist I'm seeing seems poorly organized. I called them up this week when I noticed this pattern of my symptoms getting better and then worse again every time I started a new antibiotic, and the nurse I talked to told me I should give it time since I had only been on Cipro for a week (when I had actually been on Cipro for a month), and that I had only been on Septra since last Monday, barely more than a week (when I'd actually started the Septra two Wednesdays ago). The last time I called, asking if I should refill my prescription of Cipro after two weeks, the nurse responded to all my questions with "you should come in and see the doctor", but when I did, he spent about thirty seconds with me before writing me a another prescription for two weeks of Cipro, which I didn't even need, since my previous prescription was refillable.
Sorry for the typos and grammatical errors; it's hard to proofread when my vision is like this.
Also, can anyone recommend a urologist in Austin? The doctor I saw today avoided recommending a particular urologist, telling me I should call my primary care physician for a recommendation, but who knows if they'll even be around on Tuesday?
The doctor told me, in the strongest possible terms, that I should write up a description of the treatment I've received so far, with dates, and bring it to another urologist to get a second opinion. Since I won't even be able to schedule an appointment until Tuesday, and it will probably be a week or two before I can actually get in, I might as well post here to see what opinions MeFi experts (or non-experts) have about this.
About a year ago, while seeing a sports medicine doc for an ankle sprain, I offhandedly mentioned that I was waking up once or twice a night to urinate, unless I avoided drinking any water during the afternoon. She said that was just part of getting older, and that I shouldn't be worried about it. My symptoms gradually got worse, but I avoided seeing a doctor for a really long time because the deterioration was so slow, and I'd already been told it was just a natural part of getting older. Eventually, it got to the point that I was waking up every couple of hours to urinate. My life was a total disaster. I was too tired to functon at all. At that point, three months ago (6/26), I went back to the same doctor, who did a urine culture (negative) and prescribed a week of doxycycline (100 mg, twice daily). My symptoms completely disappeared for a couple of days, but they eventually reached a midly annoying steady state level (waking up every four hours or so).
After going off the doxcycline, my symptoms started getting worse, and I got a referral to a uroligist, who did a urine culture (negative), and a DRE (inflamed prostate). He put me on a month of Cirpo. My symptoms cleared up after a few days on Cipro, but after a week or so they went back to the same steady state (waking up every four hours) that I had when i was on doxycycline. After the course of Cipro was up, my symptoms got worse, and I went back to the same urologist (on 08/19) who did another urine culture (negative), a semen culture (negative), and perscribed a month of Septra (800 mg/160mg, twice daily), and gave me some samples of Enablex to "experiment with". The same thing happened again: my symptoms initially went away, and then they came back, but weren't as severe as they were when I wasn't on antibiotics.
I started the Enablex last Sunday (8/30), but stopped last Thursday (9/3) when it didn't seem to help.
And now for the symptoms that really seemed to freak out the doctor I saw today. Three days ago (9/23), while applying sunscreen, I noticed that the lymph nodes in my neck were tender and swollen. I also had some mild eye irritation that I'm not sure how to describe. It felt really uncomfortable, in a weird way, if I moved my eyes to an extreme position (e.g., if I tried to look right without turning my head).
You know that gunk you sometimes have in your eyes when you wake up? My eyes kept generating that stuff all day Friday, and by the end of the day, my eyes were really watery and bloodshot. It looked like I'd been crying all day, but it wasn't affecting my vision. This morning, when I woke up, I had a mild fever, a sore throat, my lips felt like they were burning very mildly, and my eyes were tearing up enough that my vision was just a tad blurry. Like I said above, I went to see a doctor to make sure I didn't have swine flu, and after giving the above description to the doctor, he sounded really worried and told me to stop taking Septra immediately, and that I should see a different urologist as soon as possible. Also, he gave me Erythromycin ointment, in case I have an eye infection, and Optivar drops for the eye irritation.
Since this morning, things have gotten a bit worse. For a while, my eyes were watering so much that tears were streaming down my face. It's not quite so bad now, but my vision is still blurry enough that I wouldn't feel comfortable driving, or even cooking The burning on my lips is a lot worse; I can see skin blistering off my lips and the inside of my mouth, and my ears are red and warm to the touch.
Just as an aside, the urologist I'm seeing seems poorly organized. I called them up this week when I noticed this pattern of my symptoms getting better and then worse again every time I started a new antibiotic, and the nurse I talked to told me I should give it time since I had only been on Cipro for a week (when I had actually been on Cipro for a month), and that I had only been on Septra since last Monday, barely more than a week (when I'd actually started the Septra two Wednesdays ago). The last time I called, asking if I should refill my prescription of Cipro after two weeks, the nurse responded to all my questions with "you should come in and see the doctor", but when I did, he spent about thirty seconds with me before writing me a another prescription for two weeks of Cipro, which I didn't even need, since my previous prescription was refillable.
Sorry for the typos and grammatical errors; it's hard to proofread when my vision is like this.
Also, can anyone recommend a urologist in Austin? The doctor I saw today avoided recommending a particular urologist, telling me I should call my primary care physician for a recommendation, but who knows if they'll even be around on Tuesday?
Urologists in Austin - I had a very good experience with Jeffrey Kocurek when I had kidney stones. He was who the ER doctor recommended to me, but I could get in earlier with another doctor so I tried her instead, and I had a miserable experience with: Elizabeth Houser (The Urology Team). Hope you feel better soon.
posted by Addlepated at 5:48 PM on September 5, 2009
posted by Addlepated at 5:48 PM on September 5, 2009
Try calling the doctor you saw earlier today. They probably aren't in the office, but there may be an emergency number on their voice mail message. Call it and explain your situation and ask them what they think you should do.
If you can't get ahold of them, I agree with kldickson that you should probably head to an urgent care center or the ER. This sounds scary, especially since it's gotten noticeably worse over the course of today.
posted by Blue Jello Elf at 5:51 PM on September 5, 2009
If you can't get ahold of them, I agree with kldickson that you should probably head to an urgent care center or the ER. This sounds scary, especially since it's gotten noticeably worse over the course of today.
posted by Blue Jello Elf at 5:51 PM on September 5, 2009
You saw a doctor who felt you might be having a reaction to a sulfa drug and you are now having worse symptoms and developing blisters on your lips and mouth along with blurred vision, conjunctival problems and tearing? If this is truly the case, I agree that you should stop the Septra immediately. These are early signs of what may be a very serious drug reaction. Maybe it's overkill, but I would strongly suggest you get reevaluated in an Emergency Room (preferably one attached to a large hospital), particularly if your eye problems have not improved, or if you have developed *any* evidence of blistering or rash extending to your skin elsewhere. You may really need to be evaluated formally by an ophthalmologist at the least.
posted by drpynchon at 6:00 PM on September 5, 2009 [5 favorites]
posted by drpynchon at 6:00 PM on September 5, 2009 [5 favorites]
She said that was just part of getting older, and that I shouldn't be worried about it.
What an ignorant thing to have said. 20s is "older'? I'm 45 and 9 nights out of 10 I don't have to get up to pee at all. Nobody your age should be getting up to pee twice a night or more.
I had a roommate in grad school who had this symptom and they diagnosed him as having benign prostatitis- meaning they checked for cancer. You don't mention that you have been unless those cultures were cancer screenings but it looks like your doc is committed to his hypothesis that you have an infection. This might be cancer, and you have to get tested for that too. In any case, my roommate just took some med (I don't remember what it is, this was 1991) to treat swollen prostate and as I recall it did the job. No weeks or months on antibiotics.
I had bizarre symptoms from an allergic (and "allergic" and "autoimmune" are the same thing, right?) reaction to bactrim a few years back- started with horrible joint pain, fever, and then a massive rash. It's scary stuff.
posted by ethnomethodologist at 6:07 PM on September 5, 2009
What an ignorant thing to have said. 20s is "older'? I'm 45 and 9 nights out of 10 I don't have to get up to pee at all. Nobody your age should be getting up to pee twice a night or more.
I had a roommate in grad school who had this symptom and they diagnosed him as having benign prostatitis- meaning they checked for cancer. You don't mention that you have been unless those cultures were cancer screenings but it looks like your doc is committed to his hypothesis that you have an infection. This might be cancer, and you have to get tested for that too. In any case, my roommate just took some med (I don't remember what it is, this was 1991) to treat swollen prostate and as I recall it did the job. No weeks or months on antibiotics.
I had bizarre symptoms from an allergic (and "allergic" and "autoimmune" are the same thing, right?) reaction to bactrim a few years back- started with horrible joint pain, fever, and then a massive rash. It's scary stuff.
posted by ethnomethodologist at 6:07 PM on September 5, 2009
Have you looked at the information available about Septra? Here are the warnings. I would listen to the doc who advised you to stop taking Septra and see someone regarding your current symptoms.
posted by onhazier at 6:12 PM on September 5, 2009
posted by onhazier at 6:12 PM on September 5, 2009
For everyone's reference, here are the side effects from onhazier's link:
The most common adverse effects are gastrointestinal disturbances (nausea, vomiting, anorexia) and allergic skin reactions (such as rash and urticaria).
FATALITIES ASSOCIATED WITH THE ADMINISTRATION OF SULFONAMIDES, ALTHOUGH RARE, HAVE OCCURRED DUE TO SEVERE REACTIONS, INCLUDING STEVENS-JOHNSON SYNDROME, TOXIC EPIDERMAL NECROLYSIS, FULMINANT HEPATIC NECROSIS, AGRANULOCYTOSIS, APLASTIC ANEMIA, OTHER BLOOD DYSCRASIAS, AND HYPERSENSITIVITY OF THE RESPIRATORY TRACT (SEE WARNINGS).
Hematologic
Agranulocytosis, aplastic anemia, thrombocytopenia, leukopenia, neutropenia, hemolytic anemia, megaloblastic anemia, hypoprothrombinemia, methemoglobinemia, eosinophilia.
Allergic
Stevens-Johnson syndrome, toxic epidermal necrolysis, anaphylaxis, allergic myocarditis, erythema multiforme, exfoliative dermatitis, angioedema, drug fever, chills, Henoch- Schonlein purpura, serum sickness-like syndrome, generalized allergic reactions, generalized skin eruptions, photosensitivity, conjunctival and scleral injection, pruritus, urticaria, and rash. In addition, periarteritis nodosa and systemic lupus erythematosus have been reported.
Gastrointestinal
Hepatitis, including cholestatic jaundice and hepatic necrosis, elevation of serum transaminase and bilirubin, pseudo-membranous enterocolitis, pancreatitis, stomatitis, glossitis, nausea, emesis, abdominal pain, diarrhea, anorexia.
Genitourinary
Renal failure, interstitial nephritis, BUN and serum creatinine elevation, toxic nephrosis with oliguria and anuria, and crystalluria.
Metabolic
Hyperkalemia, hyponatremia.
Neurologic
Aseptic meningitis, convulsions, peripheral neuritis, ataxia, vertigo, tinnitus, headache.
Psychiatric
Hallucinations, depression, apathy, nervousness.
Endocrine
The sulfonamides bear certain chemical similarities to some goitrogens, diuretics (acetazolamide and the thiazides), and oral hypoglycemic agents. Cross-sensitivity may exist with these agents. Diuresis and hypoglycemia have occurred rarely in patients receiving sulfonamides.
Musculoskeletal
Arthralgia and myalgia.
Respiratory System
Cough, shortness of breath, and pulmonary infiltrates (see WARNINGS).
Miscellaneous
Weakness, fatigue, insomnia.
posted by kldickson at 6:16 PM on September 5, 2009
The most common adverse effects are gastrointestinal disturbances (nausea, vomiting, anorexia) and allergic skin reactions (such as rash and urticaria).
FATALITIES ASSOCIATED WITH THE ADMINISTRATION OF SULFONAMIDES, ALTHOUGH RARE, HAVE OCCURRED DUE TO SEVERE REACTIONS, INCLUDING STEVENS-JOHNSON SYNDROME, TOXIC EPIDERMAL NECROLYSIS, FULMINANT HEPATIC NECROSIS, AGRANULOCYTOSIS, APLASTIC ANEMIA, OTHER BLOOD DYSCRASIAS, AND HYPERSENSITIVITY OF THE RESPIRATORY TRACT (SEE WARNINGS).
Hematologic
Agranulocytosis, aplastic anemia, thrombocytopenia, leukopenia, neutropenia, hemolytic anemia, megaloblastic anemia, hypoprothrombinemia, methemoglobinemia, eosinophilia.
Allergic
Stevens-Johnson syndrome, toxic epidermal necrolysis, anaphylaxis, allergic myocarditis, erythema multiforme, exfoliative dermatitis, angioedema, drug fever, chills, Henoch- Schonlein purpura, serum sickness-like syndrome, generalized allergic reactions, generalized skin eruptions, photosensitivity, conjunctival and scleral injection, pruritus, urticaria, and rash. In addition, periarteritis nodosa and systemic lupus erythematosus have been reported.
Gastrointestinal
Hepatitis, including cholestatic jaundice and hepatic necrosis, elevation of serum transaminase and bilirubin, pseudo-membranous enterocolitis, pancreatitis, stomatitis, glossitis, nausea, emesis, abdominal pain, diarrhea, anorexia.
Genitourinary
Renal failure, interstitial nephritis, BUN and serum creatinine elevation, toxic nephrosis with oliguria and anuria, and crystalluria.
Metabolic
Hyperkalemia, hyponatremia.
Neurologic
Aseptic meningitis, convulsions, peripheral neuritis, ataxia, vertigo, tinnitus, headache.
Psychiatric
Hallucinations, depression, apathy, nervousness.
Endocrine
The sulfonamides bear certain chemical similarities to some goitrogens, diuretics (acetazolamide and the thiazides), and oral hypoglycemic agents. Cross-sensitivity may exist with these agents. Diuresis and hypoglycemia have occurred rarely in patients receiving sulfonamides.
Musculoskeletal
Arthralgia and myalgia.
Respiratory System
Cough, shortness of breath, and pulmonary infiltrates (see WARNINGS).
Miscellaneous
Weakness, fatigue, insomnia.
posted by kldickson at 6:16 PM on September 5, 2009
Please listen to drpynchon. You've been sick for three months, and now you are getting much worse with the medicine. I know someone who can't take sulfa drugs, and it's not good if they do. If I were you, I'd go to the emergency room, right now. If you still have your medicine bottles, drop all of them in a bag to help you remember names, dosage, dates to tell the doctor at the ER. If your vision is pretty impaired, try to have someone drive you, but go now.
posted by Houstonian at 6:34 PM on September 5, 2009
posted by Houstonian at 6:34 PM on September 5, 2009
Your symptoms "seemed to freak out the doctor" but you can't get in to see him? Doesn't sound like a doctor I'd like to visit.
Right now, please go to the ER.
posted by reductiondesign at 7:08 PM on September 5, 2009
Right now, please go to the ER.
posted by reductiondesign at 7:08 PM on September 5, 2009
Yeah, I would go the ER or urgent care center asap. It sounds like a serious allergic reaction and you would probably benefit from medical attention, at least just to confirm you don't need any treatment, if nothing else. Don't worry that you are overreacting. I'm allergic to sulfa drugs, and was told to never take them again after a much, much milder reaction. It's a very common allergy.
Please check back and let us know you are okay!
posted by min at 7:45 PM on September 5, 2009
Please check back and let us know you are okay!
posted by min at 7:45 PM on September 5, 2009
Have you stopped taking the bactrim as recommended? Even if you have, I would go to the ER right now (although I hope that you've already gone based on the other comments here).
I would also advise you to switch sports medicine doctors and a different urologist (if necessary) after this has settled down. I wouldn't be going to a sports medicine doctor for this kind of stuff - talk about it with your PCP instead, who can recommend better (and possibly more pertinent) specialists.
I also don't see any mention of bloodwork. Has anyone done a simple chemistry screen on you at any point? I'd ask my PCP to do one (although they will probably do this at the ER).
posted by k8lin at 8:27 PM on September 5, 2009
I would also advise you to switch sports medicine doctors and a different urologist (if necessary) after this has settled down. I wouldn't be going to a sports medicine doctor for this kind of stuff - talk about it with your PCP instead, who can recommend better (and possibly more pertinent) specialists.
I also don't see any mention of bloodwork. Has anyone done a simple chemistry screen on you at any point? I'd ask my PCP to do one (although they will probably do this at the ER).
posted by k8lin at 8:27 PM on September 5, 2009
I am not a doctor, but I have seen friends go through an allergic reaction to Bactrim before and your symptoms sound very similar. I would immediately discontinue the Septra/Bactrim, and go to the ER to be evaluated. Allergic reactions that affect many areas of the body like that are nothing to be trifled with. Go, get treated, get bloodwork done. Get a new urologist afterwards. The immediate allergic reaction needs to be dealt with first.
posted by bedhead at 10:43 PM on September 5, 2009
posted by bedhead at 10:43 PM on September 5, 2009
Late to the party, but once your reaction is over here is some advice. Never tell anyone that is not a urologist about urology problems unless it is to ask for a recommendation, and always get a second urologist for another opinion. My simple UTI went through a battering of diabetes test while I was living with increasing symptoms and had no other diabetes symptoms, because I couldn't get anyone to listen to me to test my urine. Peeing issues can be anything sometimes, even when they're obviously not, and it's a dream for a crappy doctor if you have insurance to try and rule them all out. Get another doctor ASAP.
posted by itsonreserve at 11:05 PM on September 5, 2009
posted by itsonreserve at 11:05 PM on September 5, 2009
As everyone else said please go to an ER to get checked out. Due to your inability to see while typing, contact a friend and get a ride to the hospital, please don't drive yourself.
posted by GhostChe at 7:43 AM on September 6, 2009
posted by GhostChe at 7:43 AM on September 6, 2009
Also, for the original symptoms of urinating several times during the middle of the night, fatigue, etc. - did your doctors test you for type II diabetes? As mentioned above, I don't see any mention of blood testing, so you should probably look into getting some basic blood work.
posted by cyniczny at 1:18 PM on September 6, 2009
posted by cyniczny at 1:18 PM on September 6, 2009
Please, if you wish, update and let us know how this turns out. Many of us care, a lot.
posted by theperfectcrime at 12:25 AM on September 7, 2009
posted by theperfectcrime at 12:25 AM on September 7, 2009
I am so very glad you went to the ER! You are in good hands now. Hopefully a urologist can swing by while you are there, to get your original problem addressed too.
I think it's a rule at hospitals to wake up all patients as many times as possible during the night. :)
Please post again when you get out of the hospital, to let us know that everything is fine with you.
posted by Houstonian at 1:13 PM on September 7, 2009
I think it's a rule at hospitals to wake up all patients as many times as possible during the night. :)
Please post again when you get out of the hospital, to let us know that everything is fine with you.
posted by Houstonian at 1:13 PM on September 7, 2009
Oh, I am so glad to hear you went to the ER immediately. The first thing I thought of when I saw "blistering" was Stevens-Johnson, and my heart goes out to you that you're having to deal with that. Best of luck for a rapid recovery.
posted by girlstyle at 2:46 PM on September 7, 2009
posted by girlstyle at 2:46 PM on September 7, 2009
Oh, wow, I am so glad to hear you went to the ER! Thank you for updating. Please do keep us posted, lots of Mefites are thinking of you! Best wishes for a speedy and entire recovery.
posted by min at 3:15 PM on September 7, 2009
posted by min at 3:15 PM on September 7, 2009
I'm glad that you're being taken care of.
If you're able to read this while you're still hospitalized, I have some advice: be as proactive as possible. Continue to ask your doctors about seeing an opthomologist as soon as they can arrange it. Don't be afraid to ask questions! You can even ask the tech drawing your blood why they always do it at night - not to get them to stop doing it that way (as mentioned above, it's basically a rule to wake you up in hospitals) but for informational purposes.
Best wishes for a full and speedy recovery.
posted by k8lin at 6:34 AM on September 8, 2009
If you're able to read this while you're still hospitalized, I have some advice: be as proactive as possible. Continue to ask your doctors about seeing an opthomologist as soon as they can arrange it. Don't be afraid to ask questions! You can even ask the tech drawing your blood why they always do it at night - not to get them to stop doing it that way (as mentioned above, it's basically a rule to wake you up in hospitals) but for informational purposes.
Best wishes for a full and speedy recovery.
posted by k8lin at 6:34 AM on September 8, 2009
This thread is closed to new comments.
posted by kldickson at 5:48 PM on September 5, 2009