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TOPIC: Here we go again

Here we go again 4 years 8 months ago #42287

  • DanC33
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Went to my PCP yesterday and low and behold the UTI is back again! :angry: Why won't this dumb thing go away! I am starting a new antibiotic Suprax. And she thinks that it's getting into my kidneys and prostate so I am going in for an ultrasound and a PSA. She is holding off on the some of the labs until I can get into a Urologist and a Nephrologist.

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Here we go again 4 years 8 months ago #42289

  • Sandi
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Is the U/A showing infection? I'm asking because Lupus can cause symptoms of a UTI but it is actually inflammation instead of infection. I get that all the time. If it is infection, it can be hard to get rid of due to the immunosuppressants. I normally have to go through several rounds of antibiotics to get rid of illnesses and it is frustrating. I just finished round two of antibiotics for pneumonia and I'm not sure it's gone yet. I have to go for a follow-up x-ray but the cough is still there. It is much harder for a Lupus patient to fight infections, mainly due to meds and low white cells. My husband and I both got a cold at the same time. His was better after a week and a half. I'm on week seven and still miserable. My Rheumatologist wants me to contact my Pulmonologist and get him involved with it as far as treatment.

You might want to pick up some Azo Cranberry. It won't get rid of the infection, but can help because the cranberry inhibits bacteria from adhering to the wall of the bladder.

Lupus affects the immune system, thus reducing the body’s ability to prevent and fight infection. In addition, many of the drugs used to treat SLE also suppress the function of the immune system, thereby further depressing the ability to fight infection. The risk of infection parallels medication dosages and duration of treatment.

Patients with SLE who show signs and symptoms of infection need prompt therapy to prevent it from becoming life threatening. The most common infections involve the respiratory tract, urinary tract, and skin and do not require hospitalization if they are treated promptly. Other opportunistic infections, particularly Salmonella, herpes zoster, and Candida infections, are more common in patients with SLE because of altered immune status.

www.lupus.us.com/lupus-infection.html
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Here we go again 4 years 8 months ago #42305

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I'll mention this to my doctor. I'm going in for a PSA this morning and an ultrasound on Friday so here's hoping.

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Here we go again 4 years 8 months ago #42306

  • Sandi
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Good luck, Dan. I hope all goes well.
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Here we go again 4 years 8 months ago #42361

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Had the ultrasound yesterday, she said that I do have a neurogenic bladder. She also kept asking me if I had been in a recent car accident or had a serious injury to my right side(which is a big no). She spent about 2/3 of the time examining my right kidney. She said that she would send the findings to my doc asap because she didn't like what she saw. She said that she was just a radiologist so she would have to get an MD to look over her findings. I did tell her that I have Lupus so she said that she would get my Rheumatologist involved as well.

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Here we go again 4 years 8 months ago #42362

  • Sandi
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Good thing they looked into it instead of pushing the antibiotics. It's a shame you are hit with so much CNS; it can be difficult to control. I've had a bit of CNS over the years, but it has always been intermittent and only slowly progressive. My main problems are joints, muscles, bones and lungs.

Let's see what the Dr. says before we get upset. I say 'we' because I care and worry about you too!
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Here we go again 4 years 8 months ago #42480

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Went to my Neurologist yesterday and he upped the amount of Sinemet (PD MED) to 7x daily and he doubled the amount of Neurontin. He says the a Neurogenic bladder and UTI's are very common with both PD and Lupus. He said it's a terrible cycle to be in. They give us meds to control the disease but they cause side effects like this. He said that I have a choice, deal with the symptoms of Lupus and PD or have the minor bladder issues. Nice choices we have! :cheer:

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Here we go again 4 years 8 months ago #42484

  • Sandi
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Yeah, I'm in the same boat. The meds that the Rheumatologist want to give me always have bad side effects and I don't know which is worse. I have about nine scripts now and it's getting hard to keep up with them all. We can't keep my Vitamin D level up so I'm going back on that again too. I have alarms set to remember to take pills because it goes on all day.

I have the opposite problem with my bladder. I lose control when I cough or sneeze. That started when I was on MTX and I thought it would go away when I stopped the drug. It hasn't, and I haven't even bothered to discuss it with a doctor. Too many annoying symptoms to deal with so the problems that are non-urgent never get dealt with. You end up with so many 'ologists' that the GP stuff doesn't seem to matter. I have moles that should have been looked at a long time ago, I'm overdue for a colonoscopy, need to have a GI endoscopy, haven't seen the Ortho yet about the latest stress fracture....endless list. Can't keep up with it all.
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Here we go again 4 years 8 months ago #42540

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Well I am going into a Urologist on Tuesday to see what's going on with the bladder. Hopefully they can get at least some minor control over this. I too have some issues with leaks on occasion. I can't feel when I need to "go". So I sometimes don't quite make it. So I have to be very regimented on going every 2 hours or so.

I too am on way too many meds.. at last count I take about 33 pills through out the day. Fortunatley my wife has everything set up so I don't forget which one and when to take it. Because with my "brain fog" I could get into real trouble!

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Here we go again 4 years 8 months ago #42545

  • Sandi
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I do that all the time, forget if I've taken a pill. I rarely err on the side of not taking it, but I think sometimes I end up taking one twice. I haven't counted how many there are in a day yet, just know that some are taken two or three times.

Good luck with the Urologist and of course, keep me updated.
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Here we go again 4 years 8 months ago #42646

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Urologist said that I STILL have a UTI which they think has infected my prostate as well. So they are going to try 6 weeks of doxycycline to try and kill everything off. They also found kidney stones in both kidney's. The right one is 10mm the left is 5mm. So they also put me on Tamsulosin for the next 4 months. I guess this drug shrinks them so they can pass. They also said that I do have some issues with the right kidney that they weren't sure about. So they are sending me to a Nephrologist. Lucky Me :woohoo:

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Here we go again 4 years 8 months ago #42649

  • Sandi
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Get used to it - you'll end up with a long list of 'ologists'! I have five of them on one street alone in my town, plus a few others in other places. I have to add a Gastrologist next, but have been putting that off. Many people with Lupus have Nephrologists and that's actually good so he can keep an eye on things.

Good luck with the meds, I hope they work for you, and be careful of yeast infections and C-Diff after all of that antibiotic use! I hope you're taking a probiotic.
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Here we go again 4 years 8 months ago #42661

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I agree way too many "ologists". My PCP mentioned taking a probiotic as well, so I guess it's time.

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Here we go again 4 years 8 months ago #42664

  • Sandi
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Get a good one. I get mine from GNC; it's called Ultimate Flora and has 50 billion live cultures per pill. It's about $40 for 30 pills, sometimes they have sales.

*Does not require refrigeration either.
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Here we go again 4 years 8 months ago #42665

  • Melinda
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www.jarrow.com/productgroup/228/Jarro-Dophilus_EPS

I take that brand of probiotic - I can get it at my grocery store too so no extra trip to get it.

What I like about it - can take it with me when go out of town:
"Jarro-Dophilus EPS® is room temperature stable and does not require refrigeration. Refrigeration will, however, extend the shelf-life. Avoid temperatures above 77°F (25°C)."

Thanks for making me look it up because at their website I could sign up for coupons which I did.

Kidney stones, bless your heart - I had one and it felt like it was tearing my insides a part, literally. Funny thing was, when I passed it I didn't feel it but knew I had passed it because had to strain urine and there it was.

Boy that UTI have been hanging in, sorry Dan. Also sorry a new -ologist has been added to the list [we all could have a contest to see who has the most]. We didn't intend to make so many new "friends" did we?!

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Here we go again 4 years 8 months ago #42686

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I will try to find that brand of probiotic in this tiny town I live in. But I may have to try Amazon or something like it.

As far as the UTI, the Urologist said that because people with Lupus have "wimpy" immune systems she said that the other doctors wasn't putting me on anything long enough to do anything. Which is why 6 weeks of Doxycycline. The other drug I get to take Flomax is for shrinking the stones so they can pass.

I think Sandi has me beat as far as the "friends" we get to see.


Also any ideas on how to deal with the mouth sores? They are driving me crazy!!!!

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Here we go again 4 years 7 months ago #42690

  • Melinda
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Dan doctors do that to me too - I don't have Lupus but I do have a low immunoglobulin G which helps fight infection - they will put me on the standard 7-10 days of doxy for a sinus infection and I always have to call and say I need more, sometimes 21 days to clear it up.

Fingers crossed the Flomax does the job and you can pass those stones without a problem!

I like the Jarrow Formulas-Jarro-Dophilus probiotic because it does not need refrigeration and it came highly recommended when I went to Natural Grocers looking for a probiotic, then recently my grocery store started to carry it.

I get the one that is in the box as the capsules are a blister pack so it is very easy to take with you. I do see it at Amazon - when I buy from Amazon I always like what I get to be "Sold by XXXXX and Fulfilled by Amazon"

Sorry can't help with the mouth sores - never have had them [knocking on wood]. Only thing I remember are canker sores & mom made a paste from baking soda and water to put on them.

Take care!

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Here we go again 4 years 7 months ago #42694

  • Sandi
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Dan:

I was once on a very strong antibiotic for two months for a sinus infection. I usually always need two rounds of antibiotics for any infection and will be sick for three months. I am finally starting to get rid of a cough that began as a simple cold and became pneumonia....happens every time. It's partially my fault because I try to wait it out and see if I'll get better on my own (like everyone else does), but it never goes that way. Before I know it, the cold evolves into bronchitis or pneumonia and then I go for help. I need to start getting help sooner and insist on the strong antibiotics from the beginning. The Z pack is a waste of time.

What sort of mouth sores? Ulcers, blood blisters, medication-related?

I order a lot of things from Amazon too - usually once or twice a week I have a few orders. It's easier than going out shopping, that is getting harder and harder to do.

Melinda:

I bet you do have problems with infections. Darn doctors don't get it. I should have my immunoglobulins checked too since I have so many problems getting rid of things. I usually spend 6 months in a year sick with something and it is really becoming a waste of time and so much loss of quality of life.

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Here we go again 4 years 7 months ago #42697

  • Melinda
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I am going to scold you Sandi because you are just as hard-headed as me and are my friend - you know you aren't going to get better on your own so why do you try to wait it out for heavens sake?! Get in and get taken care of so then maybe you will get better faster and not go into bronchitis or pneumonia. You get no stars or prizes for waiting it out and getting sicker!! :p

I'm at the point now where I won't wait the 10 days they want patients to wait before calling in or going in when think have a sinus infection - I know I have one and I am not going to wait 10 days if I don't have to. I don't like being sick so I don't want to prolong it if I can help it.

Last year had a sinus infection that wouldn't go away, it's a fog can't remember how long I was on antibiotic for it - they finally put me on a big one, clindamycin

Have you seen this AmazonSmile:
smile.amazon.com/
Site says:
• Amazon donates 0.5% of the price of your eligible AmazonSmile purchases to the charitable organization of your choice
•AmazonSmile is the same Amazon you know. Same products, same prices, same service.
• Support your charitable organization by starting your shopping at smile.amazon.com

There is a cat/dog rescue group here and I was pleasantly surprised that I could have them be my charity - I now order via AmazonSmile so they get something.

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Here we go again 4 years 7 months ago #42698

  • Sandi
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Yeah, that's part of the problem. You can't get a GP to give antibiotics for a cold, but by the time pneumonia symptoms show up, it's too late and it goes on forever. The antibiotics need to be given when the cold starts to prevent the bronchitis or pneumonia. I spend 3 months wheezing and coughing all night, can't have conversations, can't do anything around the house and am just plain miserable. I'm already miserable from Lupus symptoms and it just gets compounded. Grrrr.

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Here we go again 4 years 7 months ago #42699

  • Melinda
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You would think a personal physician would realize what happens to you [me too] if not treated right away - preventative medicine, prevent you from pneumonia or bronchitis and prevent me from having a sinus infection that goes on for a couple months. Unreal! Are we going to have to lie to get treated?

You're right, for a cold no antibiotics given.

[Sorry Dan to get off track]

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Here we go again 4 years 7 months ago #42712

  • DanC33
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Sandi, I do the same thing! My wife is all over my backside when I get sick to go in, but like you I try to ride it out. So I end up with something more serious than what was originally there. So even my PCP said she wants to "smack me" when I do that. She is very well aware of Lupus and the complications it can bring.

As far as the mouth sores, they are like canker sores but I don't just get one or two, there are several. I even am losing the mucosal lining in my mouth. My Rheumatologist said it's normal for Lupus and that there is not much that can be done. He said to try salt water rinsing and using Biotene. He said the only other option is to try stronger immunosuppressive drugs.

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Here we go again 4 years 7 months ago #42715

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I've never had mouth sores, maybe an occasional ulcer here and there. Some of the immunosuppressive drugs can cause mouth ulcers, so I'm not sure that is the answer. Here are a few things that can help with mouth sores:
supplemental folic acid (have your vitamin B12 checked as increased folic acid may mask occult B12 deficiency)
yogurt
acidophilus

I usually see the PA when I go to the GP. She and I have had a few arguments in the past; I usually have to fight for what I want although the last few times, she has been much more agreeable. She's never offered to smack me. The last time I called for a second antibiotic, by the time they got back to me, it was late Friday afternoon. They wouldn't give me one until I went for a chest x-ray. I didn't want to wait the entire weekend for the meds; I was on week 6 of being sick already, so I went to Urgent Care. They did the x-ray and gave me the antibiotic right there. All that trouble when I ended up with the same drug that I requested in the first place! Frustrating. I get the CYA approach, I really do, but I'm just not their average healthy patient.

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Here we go again 4 years 7 months ago #42729

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My PCP is almost like a second wife. She has been my families doctor for 10+ years. So she worries a lot about me.(she even saw me free of charge a few times when I didn't have insurance) And she never argues when I make suggestions. She may make calls to my Rheumatologist or Neurologist before she does something or does lots of research, but I usually get my way. Her PA on the other hand is a different story. Nice lady, but in way over her head with me.

I will ask my PCP to check my B12, I don't think that's ever been checked. I do take folic acid but I can't do yogurt(allergy to anything with live cultures...blue cheese ect..)

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Here we go again 4 years 7 months ago #42730

  • Sandi
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Well shoot, probiotics have live cultures.
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Here we go again 4 years 7 months ago #42733

  • Melinda
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Yes, probiotics do.

Think it is wonderful you have a PCP like that Dan!

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Here we go again 4 years 7 months ago #42785

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I talked to my PCP and she said to go ahead and try a probiotic. She said to try and find one with a low culture count and make sure I have some Benadryl on hand just in case. She said that things like blue cheese ect.. have many different cultures in them and she said I might be able to tolerate it because they are focused on specific cultures.(I've never been allergy tested for them I just know the reaction I have whenever I eat them especially blue cheese) She said that if I'd be more comfortable in her office the first few times I'm welcome to do that as well. She said the benefits of them far outweigh possible allergies if I can tolerate them.

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Here we go again 4 years 7 months ago #42792

  • Sandi
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Well that's good. I have never heard of allergies to live cultures before. And I thought I was a medical anomaly!

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Here we go again 4 years 7 months ago #42812

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Started a probiotic, it's a store brand that tastes like strawberry chalk. So far only a mild stomach reaction(feels like a light punch in the gut) then it goes away after a couple minutes I'm hoping I can build up to one of the better ones. My doctor thinks that because I am lactose intolerant might have something to do with it. She said that these are derived from dairy. But for some reason live bacterial stuff (yogurt, blue cheese ect..) hits way harder than any dairy product and the affects are immediate!

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Here we go again 4 years 7 months ago #42867

  • Melinda
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Sounds like so far so good. I need to check mine again but if I remember right the capsule is supposed to do its thing not in stomach but in the intestine. Would that help?

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