Antibiotics (Bactrim) As A Maintenance Drug

[HopeinTN]

I had a follow-up appointment today. Everything is going as planned and my next CT scan to check progress will be in September. Depending on how that goes, my Dr. mentioned a train of thought that Bactrim is being used as a maintenance drug for Wegeners, once you have reached remission. Has anyone heard this?

Thanks.

[annekat]

I have heard of it from reading past posts on here and in some online articles. But I don't remember ever hearing a good explanation for why it works, if it does.

[chrisTIn@]

I had a follow-up appointment today. Everything is going as planned and my next CT scan to check progress will be in September. Depending on how that goes, my Dr. mentioned a train of thought that Bactrim is being used as a maintenance drug for Wegeners, once you have reached remission. Has anyone heard this?

Thanks.

I've been treated with high doses of Bactrim (here called Co-trimoxazol), for months and months. I think that's only possible for so-called 'limited Wegeners'-patients, like me.
I'm adding some information from the Dutch Vasculitis website (translated by Google). I hope that helps...



other brands:

Bactrimel, Eusaprim,
Sulfotrim, Trimoxol



leaflet (http://www.wegeners-granulomatosis.com/media/documents/cotrimoxazol.pdf)

http://www.wegeners-granulomatosis.com/media/adobeacrobaticon.gif (http://www.wegeners-granulomatosis.com/media/documents/cotrimoxazol.pdf)






Introduction - Operation

C o-trimoxazole is a combination of a
sulfonamide
with trimethopriom . Sulfonamides are
chemotherapeutic agents. These are infection-fighting agents that set of
chemical origin. The better-known antibiotics ("penicillin") were originally derived from
antibacterial substances made ​​by molds and yeasts. Chemotherapeutic agents and
antibiotics have in common that they both bacterial
infections.

In co-trimoxazole is
sulfamethoxazole (sulfonamide) combined with trimethopriom (another
chemotherapeutic agent). This combination has the advantage that bacteria do
not rapidly resistant (refractory) to be against the agent. This is in contrast to the
use of single antibiotic, in which during prolonged use or resistance can
develop (no more than does the drug). Therefore, co-trimoxazole extended use. It also emerged that
co-trimoxazole works well at relatively difficult to combat infections of the
airways and lungs. Unfortunately, some of the patients did not receive from sulfonamides and
unpleasant side effects, so that with the use of co-trimoxazole has to be
stopped (see, for side-effects).

Co-trimoxazole is used in a primary vasculitis as
Granulomatosis of
polyangiitis (GPA) (http://www.wegeners-granulomatosis.com/wegener_nl.html) (up to 2011 called Wegener's disease)
because infections with micro-organisms (eg bacteria) often occur in the run up
revivals of GPA (http://www.wegeners-granulomatosis.com/wegener_nl.html)
. Possibly,
these microorganisms also caused the resurgence of GPA. In a study of many patients
with an 80-GPA has shown that co-trimoxazole was given to GPA patients, the
number of patients with flares of the disease decreases. It is currently unknown how
bacteria influencing the resurgence of the disease. It was also found that
co-trimoxazole in addition to the normal treatment can work well when it comes
to persistent forms of GPA, especially if they are located in the upper
airways.

Lately, one at the
beginning of the co-trimoxazole therapy is also sometimes in, if the disease
seems not very active. It mainly involves situations where the disease is
confined to the upper airways. This treatment is less effective than the
combination endoxan and prednisolone. On the other hand, the unfavorable long term side
effects of endoxan (see section XVIII) should be avoided in those patients where
treatment with cotrimoxazole is working properly. When there is severe kidney
or liver disease, the dose of co-trimoxazole be adjusted.

Prednisolone and
co-trimoxazole should not be together without
cyclophosphamide as a treatment for active GPA
are given for several
reasons:




Prednisolone alone (without cyclophosphamide) is not
effective for GPA.

Prednisolone masks the symptoms the patient is most
affected, such as nose bleeds and joint problems.
result the patient feels better, but in the meantime, the usual
vasculitis, especially of internal organs (especially the
kidneys).


Co-trimoxazole is only suitable for treatment of
mild and mainly limited cases of GPA (ie those cases that are confined to the
ENT area). One
of the dangers of co-trimoxazole is that the disease will continue while the
clinically better (again, in particular to the ENT symptoms respond well).
Co-trimoxazole
has no effect on vasculitis of the kidneys for example.

A combination of co-trimoxazole with prednisolone,
gives a number of problems:




When the illness so serious as it is estimated that
prednisolone should be given, it is likely that the disease activity is too
serious to be at all of co-trimoxazole something to expect.

The disease will not be controlled and there are a
number of weeks or months lost. The disease has already damage. There is then a few weeks
or months prednisolone given for nothing (or no cost benefits) and there must
still complete prednisolone / endoxan treatment given.

The prednisolone combined with co-trimoxazole will
be very difficult to assess whether the disease responds. Prednisolone masks ie
almost everything. The purpose of co-trimoxazole treatment is just avoiding the toxic
effects of prednisolone / cyclophosphamide in the active phase after it have
done their work. By adding prednisolone ga you meet this
goal.

[HopeinTN]

Thanks chrisTIn (http://www.wegeners-granulomatosis.com/forum/members/christin-.html), That is great info. So far, it's my lungs that are affected with Wegs. I'll print this and have it handy for my next appointment. I'm currently on Cytoxan, Pred and Bactrim.

Great Info!

[Sangye]

Bactrim is sometimes useful for some Weggies, but it's not strong enough to really hold you in remission if the Wegs dog is awake.

Personally I don't like the idea of someone being kept on Bactrim unless they've done poorly without it. Antibiotics destroy the gut flora, which sets you up for major problems not-so-far down the road. Poor gut function means poor health. Always.

Also, staying on any antibiotic increases the likelihood of developing an allergy to it or becoming resistant to it. It's not good to lose any antibiotic choices unless necessary, since infection is more likely to kill you than Wegs.

You've been on ctx a very long time. If that Wegs dog isn't fully asleep by now I don't think Bactrim is gonna do it.

[chrisTIn@]

...my Dr. mentioned a train of thought that Bactrim is being used as a maintenance drug for Wegeners, once you have reached remission. Has anyone heard this?

Thanks.

Your doctor said 'maintenance drug', and he talked about 'remission', didn't he HopeinTN?
It's quite some time untill your next appointment.

Just love your Avatartext. I'm gonna do more what makes me happy! :wink1:

[HopeinTN]

Ok, so I'm getting the bad news out of the way first... I now have shingles. It stinks and it hurts so bad.

Yes, I agree Sangye. I don't want to take any chances.
chrisTIn@ (http://www.wegeners-granulomatosis.com/forum/members/christin-.html)- I brought up the question of remission and maintenance drugs as a future plan. I'm not in remission but hope to be.


Painfully yours, Katrina

[Lightwarrior]

Ok, so I'm getting the bad news out of the way first... I now have shingles. It stinks and it hurts so bad.

Yes, I agree Sangye. I don't want to take any chances.
chrisTIn@ (http://www.wegeners-granulomatosis.com/forum/members/christin-.html)- I brought up the question of remission and maintenance drugs as a future plan. I'm not in remission but hope to be.


Painfully yours, Katrina

I'm so sorry Katrina, I still have pain from my last bout of shingles. Neurontin helps with the pain if your kidney function is okay, and staying extremely calm. Nothing really makes the pain stop completely. I'll send you light and energy. Wish I could do more.

[pberggren1]

This totally sucks Katrina. I sure hope it clear up fast. Are you on an anti-viral med for that? It there is such a thing.

[Sangye]

Oh no, I'm so sorry you have shingles! I hope it's a mild case that passes quickly. :hug2:

[HopeinTN]

Thanks all. I thought maybe it was poison ivy but it didn't itch and then it started hurting. My dermotologist squeezed me in and took one look and said, yep, it's shingles. She did get me started on an anti-viral. I have some left over neurotin and even morphine if needed, after checking with my doc. My kidneys are cooperating for now. :)

Sangye- My rheumotologist said to stop the cytoxan while I'm on the anti-viral...does that sound right?

In addition she froze a pre-cancer spot above my eye and took a biopsy of a spot on my leg. She said the spot on my leg looks like the spot she biopsied several years back, and it was skin cancer so we are just being safe. Fingers crossed.
(Dermatofibrosarcoma protuberans (DFSP) [1] (http://www.wegeners-granulomatosis.com/forum/#cite_note-0) is a very rare tumor (http://www.wegeners-granulomatosis.com/wiki/Tumor). It is a rare neoplasm (http://www.wegeners-granulomatosis.com/wiki/Neoplasm) of the dermis (http://www.wegeners-granulomatosis.com/wiki/Dermis) layer of the skin,[2] (http://www.wegeners-granulomatosis.com/forum/#cite_note-urlDorlands_Medical_Dictionary:dermatofibrosarcoma-1) and is classified as a sarcoma (http://www.wegeners-granulomatosis.com/wiki/Sarcoma). There is only about 1 case per million per year. DFSP is a fibrosarcoma (http://www.wegeners-granulomatosis.com/wiki/Fibrosarcoma),[3] (http://www.wegeners-granulomatosis.com/forum/#cite_note-2) more precisely a cutaneous (http://www.wegeners-granulomatosis.com/wiki/Cutaneous) soft tissue sarcoma (http://www.wegeners-granulomatosis.com/wiki/Soft_tissue_sarcoma). In many respects, the disease behaves as a benign (http://www.wegeners-granulomatosis.com/wiki/Benign) tumor (http://www.wegeners-granulomatosis.com/wiki/Tumor), but in 2-5% of cases it can metastasize (http://www.wegeners-granulomatosis.com/wiki/Metastasis), so it should be considered to have malignant (http://www.wegeners-granulomatosis.com/wiki/Malignant) potential. It occurs most often in adults in their thirties; it has been described congenitally, in children, and the elderly. It accounts for approximately 2-6% of soft tissue sarcoma cancers).

Oh well, I'll manage but it sure is painful. It's a very large cluster of sores on my hip thru my thigh and a handful of sores on my knee. I;m having a lot of pain that shoots towards the groin area on this side. It's odd.

[Sangye]

I'm assuming he stopped the ctx because it decreases your immunity and that can be dangerous with shingles. Maybe there is also some interaction with the antiviral drug or something-- I don't know.

I'm concerned that you have a history of skin cancer and are being kept on ctx much longer than normal. That is definitely not a good combo.

[chrisTIn@]

Katrina, I hope your pain will be manageble, and you 'll soon feel better.
I once had shingles in my ear, that was very painfull, I remember...
Good luck to you. Wish you the very very best! :smile1::hug3:

[annekat]

Sorry to hear about the shingles. I can't imagine the pain and misery of them. I hope the treatment gives you relief as soon as possible!

[HopeinTN]

Yes, it can be dangerous to continue Cytoxan with shingles. Bummer. Oh well. I got something for the pain yesterday and it's helping. I do feel lucky that it's not in my ear, head or face. I hear that's bad. Not sure what it does to your system in general but I actually took a nap yesterday. I felt so tired.

[Sangye]

Any infection will sap your energy. I hope you can get the rest you need!

[HopeinTN]

My labs from last week (before I had the shingles diagnosis) reflects a slightlt elevated SED rate and an elevated C-Reative Protein. Could it be from the shingles?

I'm feeling a ton better so the meds must have started working quick.

[Sangye]

Yes, shingles could certainly cause those labs to be elevated. Glad you're feeling better!!

[HopeinTN]

Thanks. In addition I did have trace amount of blood, mucous and bacteria in my urine as well as RBC's. I have a call into my urologist to make sure he doesn't need me to come in. You can't be too cautious with all the cytoxan I'm on.

Yep the pain from the shingles is much better and they appear to be starting to scab over. All good news. Man I feel so lucky it wasn't worse.

[chrisTIn@]

All good news. Man I feel so lucky it wasn't worse.

That's great! :smile1:

[HopeinTN]

While my shingles are healing nicely with minimal pain, my dermatologist called today with bad news. The skin cancer I had on my right leg has come back on my left leg. Good new is that they will cut it out and keep cutting till they get clean cells. It could be worse, but I feel beaten down.

[annekat]

I'm very sorry to hear that, as I'm sure we all are. I hope they manage to get it with minimal invasiveness. I can understand why you feel beaten down. It seems to be one thing after another. Healing thoughts and best of luck.

[Sangye]

Awww, I sure understand that. I'm glad they found it and it can be removed. Not all skin cancer is so easily treatable (though I don't want to minimize your suffering in having it removed and/or dealing with scars--that is all valid).

You're gonna get better. The stream of bad stuff will ease up. Hang in there and take good care of yourself. :hug2:

[HopeinTN]

The MOHSsurgery is scheduled for Tuesday at 7:45 am. It's the same surgeon that I hadat Vanderbilt 10 years ago and that's comforting. I'm sure it will be finesince it was last time. I'm mostly nervous about the location and it being onmy shin. Not a lot of flesh to work with. Also, I can't help but think"what if" this thing has attached to the bone. Oh well, it will workout. I'll keep everyone posted.

Thanks for all the support!

[Lightwarrior]

The MOHSsurgery is scheduled for Tuesday at 7:45 am. It's the same surgeon that I hadat Vanderbilt 10 years ago and that's comforting. I'm sure it will be finesince it was last time. I'm mostly nervous about the location and it being onmy shin. Not a lot of flesh to work with. Also, I can't help but think"what if" this thing has attached to the bone. Oh well, it will workout. I'll keep everyone posted.

Thanks for all the support!


Yes it is going to work out...I can't wait to hear good news from you Tuesday afternoon. I'm sending you light and energy now and all the way through next week :smile1::thumbup::hug3::laugh::hug2::smile1: