How many take DS Bactrim daily?

[misskay]

we're trying to get it under control. I am on the DS Bactrim, 60 mg Pred daily, 100mg Cytoxan, Calcium with Vit D, Lunesta, Atenolol, Zyrtec, Saline Spray and Flonase. Last chest x-ray showed the lungs look a little better. I have only been on the Cytoxan for 2 weeks now. Hopefully things will start to improve (please, please, please) soon.

[Palmyra]

I was wondering how many of you take Bactrim DS daily? Do you take one DS tablet daily or two tablets? How long have you been taking Bactrim daily?
I am thinking that I might have to resort to that. thanks

"I take Bactrim DS , one tablet once a day on MWF 800/160 strength" ~lightwarrior

My daughter has taken the same dose/schedule since her diagnosis 4 yrs ago (originally Rx's by Ulrich Specks, one of the VF specialists)

[Palmyra]

Hey msskay,
After a very recent visit to Mayo for sinus/tonsil/lung issues, my daughter was Rx'd to use a netipot contraption twice daily to use 'just as one would brush one's teeth, twice daily'. It employs a powder that is mixed with water to create a neutral saline solution. Mayo was handing them out like candy. She also takes Bactim to prevent a particularly nasty type of bacterial pneumonia.

From the lectures I heard at the last VF symposium, prophylactic use of Bactrim is pretty standard for those with lung involvement.

Good luck to you!

[elephant]

Misskay, give it some time. You have been on cytoxan for two weeks so give a couple more weeks. The nasal spray did nothing for me....I think it really made my sinuses worse! I tried them all too.
Did the ENT do a culture in your nose to rule out infection? Hope it goes away soon. Keep us posted.

[Sangye]

The way the Bactrim issue has been explained to me:
Bactrim is given to those on ctx because ctx makes you more prone to a type of pneumonia that affects immune-compromised. It's easy to prevent, but difficult to treat if you get it. For this purpose, it's given in a prophylactic dose: DS 3 days a week.

For those with sinus or other upper respiratory involvement, Bactrim seems to help control the Wegs in addition to decreasing the number of sinus infections, etc....

With lung involvement or other involvement, Bactrim doesn't seem to help the Wegs at all. (That's the category I'm in.)

[Sangye]

Misskay, I'm sorry you're suffering like that. I don't have that kind of sinus and nasal involvement and can't imagine how you cope with it!

I'm wondering why your ctx dose is still so low. It's based on weight. Most people are on 150mg. Ctx takes about a month to kick in at all, which means you can look forward to feeling better very soon. But ask about the ctx dose. Your doc might be under-dosing you and that won't control the Wegs.

[JanW]

Never been on Bactrim but perhaps that's because of what Sangye describes above -- my sinus involvement currentlly is minimal to non-existent (although it was present briefly several months before I was dx), and I'm not on ctx.

I was aware it was a prophylatic, but didn't realize that it also helped with WG.

[misskay]

sangye, doc started me out on 50mg a day for the first 2 weeks, we just now (today) went to 100mg a day. His goal is to get me to 150mg a day but he's trying to keep it from making me too sick so we're increasing it every 2 weeks.

Also, he told me the Bactrim was to keep me from getting PCP, Polycystic Pneumonia I think he said... mine started out with lung involvement (Cavity Pneumonia that almost killed me).

[Sangye]

That is extremely slow to build up ctx, not typical to take that long. It won't begin to control the disease until 4 weeks after you reach therapeutic dose--150mg. Meanwhile, a lot of damage can be done. Please look into getting a Wegs specialist on your case, Misskay.

(The pneumonia is called Pneumocystis carinii.)

[pberggren1]

That is strange to slowly increase the dose of ctx. I have been on it 4 times now and each time I was started at the highest dose.