Septra

[carriej22]

Hi Folks,

When I landed in the hospital for 5 days the end of Aug, they didn't know what was up with my breathing so they did a number of things. One of those things was an antibiotic called Septra.

I finished my Septra on the weekend... Low and behold, I'm getting short of breath again. Same thing as last time. It's starting slow, but I can tell it's coming this time. I don't want to end up in the hospital again.

I am coughing up stuff as well, and my nose which was WONDERFUL while on septra is now home of the green slime slugs again and I can "smell" a weird smell... I'm definitely thinking this is some kind of super infection.

Here is the thing... I go see my doc on Thurs. At this point I am not severely out of breath at all, I just know it's settling there. Last time it took a few weeks before it got bad. If it gets to the point where I can't catch my breath, I'll go to ER... However, do I ask for an antibiotic? Will he give it to me? I don't want to be put through the ringer for an antibiotic. I'm tired of being poked and prodded... I have a feeling he's going to ignore everything I say and run more tests to try and find another problem, but I just "know" this is what's going on.

Is there such thing as a long term antibiotic to keep me from getting this again? I was on the antibiotic for over two weeks and it's coming back almost immediately.. :(

Could this be something environmental, in my house? Some fungus or mold or what have you? My grandmother (bless her) came over to Eric and I's house and literally bleached and steamed and sterilized everything before I came home to make sure there was nothing... There is nothing visible but man, I can't afford to be sick like this!

[drz]

Many people take Bactrim as a preventative antibiotic. I had many bladder infections shortly after my diagnosis but after a year of those they put me on trimethoprim which is non sulfa part of Bactrim as a preventative measure and I haven't had any since.

The doctors should be able to do a culture to check for infection which is non-invasive and routine blood lab work can also check for infection signs as well as inflammation markers to help assess for possible flare and/or infection. Some stubborn infections also take longer to get rid of and maybe the antibiotic you had before just knocked the infection down but did not get rid of it. In that case you need to either take it longer or else get something that might be stronger. Of course the longer you take an antibiotic or the stronger it is, the higher risk of undesired side effects.

[Pete]

Carrie,

If I were you, I'd call the doc who prescribed septra right away. I doubt that there would be any problems with continuing this med until your next office visit.

[Lightwarrior]

Carrie,
I love your grandma for bleaching everything to care for you. I have been on Septra for three years now. My pulmonologist told me I needed it to prevent PCP which is what you had. Since I am immuno-suppressed he told I needed to take it Monday Wednesday and Friday. So far I have NOT gotten PCP.

Okay, I do think you should call your primary care provider or your rheumy and tell them that when you finished the Septra that you are coughing up green slime, etc. When you go into the ED you need to say the same thing. It all depends on the doctor. Some docs will "get it" and give you what you need. Others want to beath their chests and declare themselves masters of the universe and test you for everything to prove that they are smart and you are not. Hopefully you will not get one of those. You will always be safe by just saying that once you stopped your antibiotic you started getting short of breath and then let them draw the conclusions.

Good luck, jump on this quickly, you have been through to much. I am sending you strength and light and an extra hug for your grandma.

[annekat]

Isn't Septra basically the same thing as Bactrim but by a different brand name? Looking at my bottle of generic for Bactrim, they contain the same drugs and Wikipedia says they are the same. They are both used to prevent PCP and are apparently the same drug.

[carriej22]

Could be... I just know the Septra was really cheap for an antibiotic. 24 pills for like 13$ or something like that...

I can't get in anywhere until Thursday so I'm hoping my puffers and stuff keep me good until I can go. However, it took weeks to manifest last time. It's barely starting to come back (Im looking for it) and I'm just going to lay low until I go see him.

He is a bit of a "he man superhero bang on my chest and let me show you my phd" kind of Doctor but he KNOWS that I was in the hospital due to breathing, etc and if it's a real big issue I'll just call one of the other 5 doctors I've been dealing with until someone gives it to me... Else I'm just going to land in the hospital once again. I'd just prefer he prescribes it because he gets a little cranky when I cheat with all these other doctors. Well, not really cranky but he likes to be kept in the loop which sometimes in the mix up of this whole life threatening disease thing and trying to maintain a somewhat normal life - and the fact that his office is never open... I sometimes forget to inform him.

[annekat]

Bactrim is also cheap, or I guess I should say the generic for it is. We are talking about Bactrim DS and Septra DS, I think, and the DS means double strength. Back when I just thought I had recurring sinus infections, not Wegs, I was prescribed regular strength Bactrim several times, one a day for 10-20 days. My doc went through a few different antibiotics on me so I'd be less likely to have my infections develop a resistance to them. With Bactrim, he asked if I was allergic to sulfa drugs, and I said not that I know of. I guess some people can't take it for that reason. But Bactrim DS and Septra DS, or the generics, seem to be the standard for preventing PCP, and most people take them three times a week, from what I've read on here and elsewhere.

[Sangye]

Yes, Bactrim and Septa are the same.

I agree with the others that you need to call your doc sooner. Bactrim is used by many Weggies with chronic sinus involvement. There is some evidence that it can keep some Weggies from flaring and reduce sinus infections. Many take a prophylactic dose (3 days a week, I think) for an extended time.

[HopeinTN]

I'm a Bactrim gal. I've been on it since Oct. 2011 and no infections!

[Lightwarrior]

Yes, Bactrim and Septa are the same.

I agree with the others that you need to call your doc sooner. Bactrim is used by many Weggies with chronic sinus involvement. There is some evidence that it can keep some Weggies from flaring and reduce sinus infections. Many take a prophylactic dose (3 days a week, I think) for an extended time.

I agree with Sangye CALL SOONER

[carriej22]

Well I called my family doc, she's out til next week, called my internist and he's out of town, called my rheumy who I go see on Thurs... Thought I was going to have some luck there but NOPE.. All I have pretty much done is guarantee myself an admittance on Thursday.... Looks like I'll be packing my bags. He doesn't want to give me that antibiotic unless I need it and he wants to see me first. Told me to go to emerge if I thought I needed it.

I just did a load of laundry and tramped up and downstairs and I feel alright. I'll leave it for now. Plus I have a nurse friend who works triage in ER and she said whooping cough is going. DO NOT WANT. Avoiding that place like the plague unless I think I'm going to die.

[annekat]

Well I called my family doc, she's out til next week, called my internist and he's out of town, called my rheumy who I go see on Thurs... Thought I was going to have some luck there but NOPE.. All I have pretty much done is guarantee myself an admittance on Thursday.... Looks like I'll be packing my bags. He doesn't want to give me that antibiotic unless I need it and he wants to see me first. Told me to go to emerge if I thought I needed it.

I just did a load of laundry and tramped up and downstairs and I feel alright. I'll leave it for now. Plus I have a nurse friend who works triage in ER and she said whooping cough is going. DO NOT WANT. Avoiding that place like the plague unless I think I'm going to die. It's not making sense to me that your rheumy is hesitating to give you Septra since it prevents PCP and that is what you had. Many Weggies take it on a routine basis for extended lengths of time, to prevent PCP, when they haven't even had PCP! Maybe I am missing something here. In any case, I don't think you should have to go to the ER, and subject yourself to all the germs floating around there, just to get proper care. Let us know what happens Thursday (I'm sure you will!).

[HopeinTN]

Agree. I was told that I could not stop taking Bactrim until I stop treatment. I would call and talk to whoever will listen at the Rheumy's office and make them call it in. It can't hurt you and will start working before you go in on Thursday. Hopefully you didn't have or have PCP as it's nasty. Typically you don't cough up anything with PCP and have a non-productive cough and high fever. Good luck and keep your head up sister!

[HopeinTN]

Oh and as far as the bad smell, yes, that could be an infection. It also could be from meds. Since I started Cytoxan and my suitcase of other meds I've noticed that everything stinks. Urine, breath, everything. Just a thought.

[drz]

It's not making sense to me that your rheumy is hesitating to give you Septra since it prevents PCP and that is what you had. Many Weggies take it on a routine basis for extended lengths of time, to prevent PCP, when they haven't even had PCP! Maybe I am missing something here. In any case, I don't think you should have to go to the ER, and subject yourself to all the germs floating around there, just to get proper care. Let us know what happens Thursday (I'm sure you will!).

I would also think the doctor treating your Wegs would give you Bactrim or equivalent since that is pretty standard protocol for treating GPA. This should NOT require anything more than a phone call to get such a prescription.

[drz]

Oh and as far as the bad smell, yes, that could be an infection. It also could be from meds. Since I started Cytoxan and my suitcase of other meds I've noticed that everything stinks. Urine, breath, everything. Just a thought.

One of the worst side effects of the treatment was what the meds did to taste and smell and ability to enjoy food. I remember not being able to even drink the hospital tap water.

[Col 23]

I too take bactrim 3 times a week as a preventative. Keep informing your doctors of how you feel and your symptoms. be persistent until
it they sort it. All the best
cheers Col 23

[carriej22]

Hi Folks,

Well I got my septra.. for now.

No more methotrexate for me either, by the looks of things. He doesn't want me to go at it again. So let's us hope the rituxan and pred works. I am also tapering again.. WHOOPEE. Although it seems like a fast taper.. 5mg (1 pill) knocked off every 3 days until I get back down to my previous dose of 20mg which is what I was on before they bumped me up. However he seems adamant that we get me off the pred soon. He said if I notice any side effects or anything bad happening to call him ASAP.. So hopefully it works.

[annekat]

It might not be an unusually fast taper since you were not bumped up for that long. Then when you get back to 20mg., it should slow down quite a bit and especially when you get to 10mg. I've been at that for several months now and am wondering what sort of taper from there I'm going to be trying. A slow one, I hope. (I'm no expert on pred by any means, but have sure learned a lot more about it on here than anywhere else!)

[drz]

I too take bactrim 3 times a week as a preventative. Keep informing your doctors of how you feel and your symptoms. be persistent until
it they sort it. All the best
cheers Col 23

The recent link to the article on remission suggested this might help reduce risk of remission as does long term usual of pred meds and the usual maintenance drugs.

[drz]

It might not be an unusually fast taper since you were not bumped up for that long. Then when you get back to 20mg., it should slow down quite a bit and especially when you get to 10mg. I've been at that for several months now and am wondering what sort of taper from there I'm going to be trying. A slow one, I hope. (I'm no expert on pred by any means, but have sure learned a lot more about it on here than anywhere else!)

My taper was really slow after 9 mg. I ended up going down 1/4 mg every 10-15 days till I got to 5 mg which has been my maintenance dosage for several months now. At the higher levels the taper can be very fast especially when the higher level has been for a very short period of time.

[annekat]

My taper was really slow after 9 mg. I ended up going down 1/4 mg every 10-15 days till I got to 5 mg which has been my maintenance dosage for several months now. At the higher levels the taper can be very fast especially when the higher level has been for a very short period of time.That's pretty slow, alright. I doubt my doc will want to go that slow but I'm hoping it will be like 1mg. a month, and see how it goes. I don't see the point of trying to go too fast at that stage.

[Sangye]

I went that slow to get below 5 mg pred. I only made it to 2.5 mg though.

[Pete]

I'm resuming the taper from 10 mg/day this weekend. My wegs specialist wants me to reduce 1mg/day every two weeks. Hope I can get to and stay at zero with no problems.

[drz]

I'm resuming the taper from 10 mg/day this weekend. My wegs specialist wants me to reduce 1mg/day every two weeks. Hope I can get to and stay at zero with no problems.

Good luck with it. How long have you been on pred and at that dosage?

[Pete]

Good luck with it. How long have you been on pred and at that dosage?
I've been on pred since dx in 1/11. Highest dosage was 50 mg/day. I had tapered down to 10 by early May and decided to hold there until I knew how I would react to mtx (15 mg/wk).

[KathyB]

Unfortunately, my rheumy will not allow me to go below 5 mg (been this way since spring). However, I'm not on any other WG maintenance drugs (except for the two cycles of Rtx). So I guess there's a trade-off ...

KB

[pberggren1]

Kathy, I am curious as to why your rheumy wont taper you below 5?

[drz]

Many people have Weg like symptoms return when they cut their pred dosage too low. This seems to vary from person to person and some find a bottom point on how low they can go. Others are lucky and are able to get off all their Weg meds. So how many know their bottom level for pred and how many got drug free?

[KathyB]

Kathy, I am curious as to why your rheumy wont taper you below 5?

I asked him this time, Phil. From what I understood, he is concerned because of the low IG rates and it's been doing the job rather than adding any other maintenance meds. I'm status quo with it ... after that, I just don't know. Since I haven't been through another flare since dx (although I had all those other issues like pneumonia, drug reactions, liver problems, infections, and gall bladder removal), it makes me wonder what's next! Still have breathing issues, chronic fatigue, muscle and joint aches, "foggy" brain, etc.

KB

[carriej22]

I'm hoping my taper goes well. Down to 35 now.

Still having some breathing issues... However the issue seems to be in my throat rather than lungs.. It's like it's swollen. I had it checked and they couldn't see anything. Maybe it's just my fat face SMOTHERING me LOL!

I have the whole "fog" thing too.. It sucks. Sometimes I wonder if I'm going brain dead. I can spend an entire day in a complete daze... Sometimes eating helps, but of course I'm trying to avoid stuffing my face since I'm beginning to look like I have cushings disease. I hope the weight starts to tick off when I get off this pred some.. Because I am very uncomfortable. I did not gain that much weight, it's just all located in my face and belly. It's very hard like a pregnant belly; and I get a little upset when I see people looking at it and wondering in their head if I'm expecting!

[KathyB]

I'm hoping my taper goes well. Down to 35 now.

Still having some breathing issues... However the issue seems to be in my throat rather than lungs.. It's like it's swollen. I had it checked and they couldn't see anything. Maybe it's just my fat face SMOTHERING me LOL!

I have the whole "fog" thing too.. It sucks. Sometimes I wonder if I'm going brain dead. I can spend an entire day in a complete daze... Sometimes eating helps, but of course I'm trying to avoid stuffing my face since I'm beginning to look like I have cushings disease. I hope the weight starts to tick off when I get off this pred some.. Because I am very uncomfortable. I did not gain that much weight, it's just all located in my face and belly. It's very hard like a pregnant belly; and I get a little upset when I see people looking at it and wondering in their head if I'm expecting!

35 and reducing -- that's GREAT! The thickness that prednisone gives us takes on a life of its own! LOL! I'm 56, so I've already been watching the neck definition dwindle (it kinda of morphs into your chin!). The hump back was prominent, too. The more your pred goes down, the more normal things will look! Amen to that!

My breathing issues feel like I have something stuck in my throat (sometimes) and a tightness just below my neck/top of my chest (all the time). Feels like pressure or squeezing. My rheumy finally understood what I was telling him and is ordering a CT scan of my upper airways. I had a bronchoscopy back in early November when I had pneumonia and it was normal. So we'll see what the scan will bring to light.

KB

[carriej22]

Yeah I've got the hump too.. It's terrible, and my face is quite the fishbowl. But the belly is what is making me uncomfortable. Plus my skin is so thin and stretched that it's all irritated. It's not easy watching your body change and not really being able to do anything about it - but as long as it goes away... I know I will be stuck with the terrifying stretch marks for life (they go both ways, vertical and horizontal) but as long as the weight drops I don't care.. I don't need to wear a bikini lol

[annekat]

The stretch marks may go away or become much less prominent. I had them on my breasts for years when I was younger, and while I guess I can tell where they were, they are barely noticeable any more.

[drz]

Everyone is different but for me the buffalo hump was first thing to fade away when I reduced the pred meds. Then the moon face got better and people commented i didn't look so puffy in the face, but the big belly is still around. That is why I call it PREGNANTZONE meds. i compared myself to women 8 months pregnant and I tied them for having protruding belly.

[annekat]

Trouble is, in middle age, a lot of us are getting the big belly anyway, and maybe even a bit of a buffalo hump, so it is hard to tell which is the pred and which is the aging! However, the moon face is sort of a dead giveaway. At your age, Carrie, I think it will all go away!:biggrin1:

[malin]

Yeah I've got the hump too.. It's terrible, and my face is quite the fishbowl. But the belly is what is making me uncomfortable. Plus my skin is so thin and stretched that it's all irritated. It's not easy watching your body change and not really being able to do anything about it - but as long as it goes away... I know I will be stuck with the terrifying stretch marks for life (they go both ways, vertical and horizontal) but as long as the weight drops I don't care.. I don't need to wear a bikini lol

For the stretch marks, I don't know if you have it, or something similar where you are but here in the UK I use Palmers cocoa butter, they have a "normal" cream and then one thats specifically for stretch marks (I haven't tried that one), but the normal one has help me a lot with mine. If you use it regulary it could help fade the marks, it did with mine + it smells lovely and gives you lovely smooth skin, so its win-win :)