Hey, Janine. I capitulated for a while (because I'm too upper-crust to merely procrastinate as a commoner might) and remembered that the pharmacy that compounds the antibiotic I instill in my catheter/bladder does nutrition/wellness counseling. I called them to get advice on what a man my age should test for when he has no maladies and is just getting some general data, and they told me of a test they offer. I discussed details here in the Vitamin Supplement & Dosage thread, since I figured it was a better fit there. I should get the results anywhere between the 23rd and the 27th of this month.
Update on the Gentamicin Effectiveness I started the gentamicin in early April, halfway through that catheter's 4 week life. I had sporadic pre-sediment bacterial cloudiness when I flushed the catheter for the rest of that cath and for the next 2 (a total of 10 weeks), bit it was very very slight. I think the continued bacterial cloudiness was due to me starting the gentamicin in mid-cath cycle, so each 30 day gentamicin script was 2 weeks old when I'd get a fresh cath installed. I was able to change the timing such that I now start a fresh script when I have a fresh cath installed. I'm a week into this catheter and it's been 100% clear, as was the prior catheter for its entire 4 week use...but I've learned to never spike the ball with this stuff. I continue to flush every day, primarily to monitor things (and for my peace of mind)...I am no longer concerned about sediment being an issue. And I think that flushing might help to keep any sediment cleared out of my bladder since it's a volume of water being extracted all at once (but that's just my layman's opinion.) Everything I've read indicates that the 2ml vial shortage should abate in October, at which time I may try to shift to that form, mainly due to cost ($13 for vials versus $68 for compounded.) Freshness/potency are no longer a concern since I've been getting (2) 14 day bottles (keeping the second one frozen) rather than (1) 30 day bottle. I am assuming that I will be on gentamicin forever, which is no big deal since instilling it directly into my bladder presents no risk of side effects. I would like to get off of the oral macrobid (nitrofuratoin) at some point, but for now my urologist does not want to mess with things when they are working...making him smarter than me.
We just were talking about vitamins on another thread I switched to this thread because I thought it might be a better fit, I ordered a new vitamin I never tried before iodine because I saw a video online that it helps when you have bladder issues with a weak stream with an underlying cause of enlarged prostate. They claimed there's a coating of calcium and minerals that lines the prostate causes the enlargement. I didn't watch the whole video but during the course of the video one of the ingredients that was supposed to help this condition was iodine. So I will try it for a short period and see how helpful it really is.
So how are you gonna decide how much to dose? And I didn't look to see if this is available without a script. Everything I read said a doctor administers the test. They take a pee sample and measure the iodine level. Then you take the iodine and give another pee sample for them to measure the iodine level. Measuring the difference decides if you need iodine and how much to take...if I recall correctly. Given what iodine can do to your thyroid, I'm not sure I'd want to try in unsupervised.
I've had a thyroid condition for many years my doctor finally balanced I guess it's hormones so I have not had to take medicine for about ten years, I was going for a blood test every 6 month, I stop that 5 years ago. Lately I feel some of the original symptoms are back so it's possible my thyroid is acting up. You're right I shouldn't be doing any iodine without doctors assistance, However, I am stubborn I will try to self dose, and see if it helps. I try to start with the minimum recommended.
I am not a doctor...but don't do that. You might not see if it helps. If your thyroid already has issues, don't take any iodine. Make an appointment to have your thyroid evaluated again. Then ask about an iodine test and see if he doesn't give you the "Are you insane?" look.
This compounding pharmacy is really a messed up place. When I first went there, I commented that I lived over 75 miles away. The guy at the counter offered to set me up with Auto Refill and Delivery. I agreed, and gave him all of my info. When the first refill date approached I called them up to make certain everything was good to go. The person on the phone said "We don't do auto-refills, and we don't deliver." So the guy took all that info and must have tried to do something with it, yet no one called me to tell me I had to do my own refill requests. And they actually do deliver...I got my first refill shipped to me when I called it in. In the meantime, I was told that they could send my meds to their newish second location (near my urologist) for free and I could pick them up there. So that's been working OK, since I time it with my monthly catheter swaps. The pharmacy recently changed the billing code they use for my meds when they submit the bill to my prescription plan, and now my meds are not covered. I had been paying $68 copay, and was told my uninsured cost was gonna be $123. I called my insurance company and had them call the pharmacy, and there is nothing I can do. So I picked up my first out-of-pocket refill last month, and it was only $50, not the uninsured $123 I was quoted, and not the $68 co-pay I've paid the past 5 months! I am going to pick up my second out-of-pocket refill tomorrow, and my credit card was charged $40 this time!!! I'm really liking this trend. I have been nice to them. It's not their fault the place is disorganized. Maybe someone is doing me a favor.
I like that maybe next time they'll give you salesman samples. I had a frustrating experience with the drug store today, I spoke on the phone to a nurse practitioner yesterday, Because of being Contagious I didn't want to visit the office, Because of my age, I just wanted to know if there's anything I should be taken as a precaution. Are you coughing? Yes head congested? Yes and on and on. She prescribed Cough medicine, nasal spray, Inhaler, and an antiviral med. The pharmacist called me at 12:30 today to let me know the cough med wasn't covered by insurance. I said I'll pay for it, and she said. Well, scrips will be ready in about a 1/2 hour. My wife went with me She wanted to squeeze in a quick errand before you went to the drugstore. We got to the drugstore about 1:30, The things we Is pharmacy was closed for lunch, between 1 and 2 don't know why they didn't tell me this when I was talking to them but they didn't. At that point I was really getting tired. I just wanted to get Home. I went back around 4 the line was 2 lsles long. I left..try again tomorrow.
Some number of pharmacies are falling apart these days. All of the CVSes in this region are experiencing lots of issues. I think they tried to grow too fast. Those poor pharmacists look like that I Love Lucy episode where she works in the chocolate factory. These guys are the only compounding pharmacy around who can do my meds, and the sterile lab is over 75 miles from home. I went on a site called Glass Door (where people report their work experiences for different businesses), and this place is a small independent pharmacy where the owner tries to control everything. So the folks who are doing the work have no power to make things better. edit to add: The worse part is the main location will not talk to you on the phone. It's all done by text. I got into a testy back & forth when my last refill was late and they claimed they were waiting for my go-ahead to do it at full (uninsured) cost. I told her to please look at the text string of 2 days ago where I already did that. This was complicated because my doctor put in the script for 4 refills. The pharmacy entered it as 24. I could not get my doctor's office or the pharmacy to fix it, so I never know if I really have that many refills or if the error is gonna get caught and I'll be screwed. Refill #4 happened to expire the same time they changed the insurance code, so it was a big miscommunication mess. It's so very weird.
There aren't many pharmacies that I've seen in Maine except for the chains, and several of these are closing stores due to competition from pharmacies set up in grocery stores or health clinics. The only stand-alone pharmacy in Millinocket closed a few years ago after changing hands a couple of times. IMO, they couldn't (or wouldn't) compete with the grocery store pharmacy on prices. Most things were far more expensive at the pharmacy.
There are a couple of independent places in Charlottesville (even a compounding pharmacy), and one in the rural county just south of me. I think they are having a renaissance as the chain places are under-performing. I'm on the Next Door forum, and every time someone complains about CVS or Walgreens, a couple of people recommend the Mom & Pop places. As you said, they are a little more expensive, but they get the job done. I've been fortunate that the Walmart pharmacy near me does a real good job. I make sure to tell them so every time I go there.
This is an antibiotic that is compounded (mixed) with sterile water. It's sort of a custom thing. If the vax-caused vial shortage ever goes away, I might be able to get standard 2ml vials of the antibiotic to mix myself, using Good Rx for that. Right now I'm stuck with the compounding pharmacy compounding it from a large vial. I do use Good Rx for an oral maintenance antibiotic I'm on...it saves nearly 2/3 the cost.
I had a follow-up with my urologist the other day (I really like this guy), and we agreed that I would stop taking the Macrobid [nitrofuratoin] oral antibiotic and fly solo with the gentamicin irrigation. I had wanted to go off of Macrobid a while ago because it lost its efficacy (which is why I went on the gentamicin) and there are potentially bad side effects when you take Macrobid long term (6+ months.) I've been on it a year. I mentioned elsewhere that I'm getting a cardio stress test because my doctor saw a shift in my EKG. Such a shift is a known potential side effect of Macrobid, as are pulmonary issues. I was gonna get another urodynamic to see how my bladder muscles are doing but jury duty (and an aversion to the test) got in the way. I still need to do it just to get the discretely measured data point. My urologist was wondering if my bladder muscles have returned to normal and maybe I could get rid of the cath altogether at some point, but I'm not interested in worrying about another bladder failure and having my SPC stoma healed over...THEN what? But that's cart-before-horse thinking. I need to get a urodynamic done to see if the muscles have recovered.