Joint pain and dapsone - Problem

I just stopped bactrim because of some kind of lesions I get... I can't 'unsee' what can happen (Stevens johnson syndrome) and am not comfortable continuing to take it.

It happened before when I first started bactrim...and was told to continue that they don't 'look' like they are from Stevens Johnson syndrome.
So, I did.

When they appeared again yesterday I went googling and read that if any type of rash occurs when on the bactrim, to stop it. The SJS is very serious...and I'm not taking the chance.

The one on the inside of my bottom lip is ugly...and I did not bite my lip.

They are individual round spots with a centre to them.....

Sheeks175 said...
Did you ever get a fever?

When I first had my bulls eye rash the doctors thought it was staph, so they gave me bactrim. I developed a massive fever and finally broke out in a rash after a few days of fever. Definitely stevens johnson.

I don't know what my temp was...I didn't realize it started with a fever until this morning when I googled it again....and I did not have a temp this morning.

It’s a powerful drug inspired. May I ask what you combined it with? So far it has been one of the few drugs to make me herd when combined with rifampin, but I can’t risk further injury to my already injured joints.

I am sure I have an allergy to sulfa, but you can usually take dapsone if you are allergic to bactrim. I am curious if it is some sort of allergic reaction mixed with the pathogens in my joints causing this issue, but I am not sure! It is a strange phenomenon that I have never heard of any other patient experiencing. However, I got that same 1/8" band of inflamed tissue on my collar bone / shoulder joint after being off antibiotics for a few months, so maybe it is just the bacteria causing inflamed tissue. It's perplexing. I will mention it to the PA next week with my current doc and I will also mention it to Kim at Dr J's clinic in September. Hopefully she has seen it before!!

Also, I have a smaller area of inflamed tissue on my right knee. Once I started taking dapsone, rifampin, and zithromax it swelled up and almost felt like it was detached from my knee. It was a strange feeling, but I think that means the drug combination was targeting that inflamed tissue and maybe it is just bacterial?

Sheeks, are you supplementing with Collagen? I have found that many of the skin symptoms/issues that I had got better or went away when I started to supplement Collagen (Great Lakes) as recommended by S. Buhner.

Healing98 said...
Sheeks, are you supplementing with Collagen? I have found that many of the skin symptoms/issues that I had got better or went away when I started to supplement Collagen (Great Lakes) as recommended by S. Buhner.

Oh, you found it works?

Good to know. I bought the Great Lakes (green container) a couple years ago...and then only took it for a few days.

I got all messed up about that deadly brain disease you can get from infected cow spines. remember many years ago - "mad cow disease" ??

I was going through a period of fear at the time and just stopped taking it.

Maybe I should take it because I'm certainly missing collagen on the backs of my hands and top of feet...face could use some too...

drink a cup a day of organic bone broth. my wife has been doing it and her skin and overall tone is definitely better. it works for sure and its great for the gut!

Sheeks - When you wrote "roll them back and forth with your fingers" it caught my attention.

I have something strange happening with the palm of my right hand.

I pushed down really hard on a bottle cap (to open it you had to push and twist) with the palm of my hand...it took a few times .... afterwards my hand had a red area - was like an hour later and it was sore.
I rubbed it with the thumb of my left hand and could feel something under the skin - and it seemed to roll - it was like a thin rope or strings ...very strange. But, I couldn't see anything when I examined it.

Now, several days later...it's still there but not as noticeable.

I don't know what it is - tendon? collagen? or what?

Can you see yours' or just feel them?

Girlie said...
Sheeks - When you wrote "roll them back and forth with your fingers" it caught my attention.

I have something strange happening with the palm of my right hand.

I pushed down really hard on a bottle cap (to open it you had to push and twist) with the palm of my hand...it took a few times .... afterwards my hand had a red area - was like an hour later and it was sore.
I rubbed it with the thumb of my left hand and could feel something under the skin - and it seemed to roll - it was like a thin rope or strings ...very strange. But, I couldn't see anything when I examined it.

Now, several days later...it's still there but not as noticeable.

I don't know what it is - tendon? collagen? or what?

Can you see yours' or just feel them?

Interesting. So your's is on your palm? With mine it is very close to the surface and usually on top of a bone. I have this type of thing over multiple joints. Collarbone to shoulder connection, bottom of the patella tendon (top of the shin bone), on the outside of my left elbow, and now the most recent one is on top of my left knee cap. I can actually physically see mine, because they are on top of the bone, but right below the skin. If I roll mine back and forth you can see the "rope" move. It is very strange. I think that it is some sort of joint tissue and maybe an inflammation of parts of the tendon mixed with persistent bugs. The only thing that I have noticed really hit the areas of inflamed tissue was dapsone/zithromax/high dose rifampin (1200 mg per day). I could actually feel the rope inflame and it felt like it almost separated from my shin when I walked, but it went away after I took the rifampin away. It is a weird phenomenon. So I don't know if it is persistent bart, persistent lyme, or some sort of damage. Hopefully one of the first 2!! As we know bactrim will hit persistent lyme and bart and dapsone/rifampin/zith will hit persistent lyme and bart.

Sheeks175 said...

Girlie said...
Sheeks - When you wrote "roll them back and forth with your fingers" it caught my attention.

I have something strange happening with the palm of my right hand.

I pushed down really hard on a bottle cap (to open it you had to push and twist) with the palm of my hand...it took a few times .... afterwards my hand had a red area - was like an hour later and it was sore.
I rubbed it with the thumb of my left hand and could feel something under the skin - and it seemed to roll - it was like a thin rope or strings ...very strange. But, I couldn't see anything when I examined it.

Now, several days later...it's still there but not as noticeable.

I don't know what it is - tendon? collagen? or what?

Can you see yours' or just feel them?

Interesting. So your's is on your palm? With mine it is very close to the surface and usually on top of a bone. I have this type of thing over multiple joints. Collarbone to shoulder connection, bottom of the patella tendon (top of the shin bone), on the outside of my left elbow, and now the most recent one is on top of my left knee cap. I can actually physically see mine, because they are on top of the bone, but right below the skin. If I roll mine back and forth you can see the "rope" move. It is very strange. I think that it is some sort of joint tissue and maybe an inflammation of parts of the tendon mixed with persistent bugs. The only thing that I have noticed really hit the areas of inflamed tissue was dapsone/zithromax/high dose rifampin (1200 mg per day). I could actually feel the rope inflame and it felt like it almost separated from my shin when I walked, but it went away after I took the rifampin away. It is a weird phenomenon. So I don't know if it is persistent bart, persistent lyme, or some sort of damage. Hopefully one of the first 2!! As we know bactrim will hit persistent lyme and bart and dapsone/rifampin/zith will hit persistent lyme and bart.

Mine was very close to surface as well...right under the skin of my right palm. I just felt it now..and it's still there, but it's not 'rolling' anymore. It's the weirdest thing. it's like a narrow band -
At least mine isn't sore anymore.

Not sure if it's the same as what you've got. Mine seems like a strip of collagen...or something....

Well I just happen to be on Bactrim, yes.

Actually I WAS on Bactrim and just stopped it recently - for a different suspected reaction - wonder if that's contributing.

It's much better now...


Were you on Bactrim just prior to the Sierra clinic?