Hello All,
Hoping you guys can help me or give me some insight into what to do. The last year I’ve been having a lot of skin issues mainly on my face around my mouth & lips! Have been having rosacea breakouts which I can totally manage but I also get a type of dermatitis on my lips which is painful and so uncomfortable. Have been on countless antibiotics and I’ve had impetigo 4 times this year, yes 4 times! My GP seems to think it’s because I’m on immunosuppressants (I have Infliximab every 8 weeks). I’m only 35yrs old and feel really healthy. My UC is well controlled with Infliximab.
My consultant is referring me to a different dermatologist as my own one was pretty useless. The impetigo is really really bringing me down, I feel disgusting & long term I can’t keep going on antibiotics. I also found out I’m pregnant last week & with that the impetigo popped up again! Could it really be the Infliximab causing these issues in particular the impetigo? And if so what would my options be as most medications are immunosuppressants with IBD? Would they just all cause the same issue? Feeling so deflated about it all. I personally do think IBD has a role to play (off course it does) 🙃
Thank you all so much,
Susie
Susie, how long have you been on Infliximab?
All I know about Impetigo is it is contagious & a person has to be careful & have to take extra precautions. Not using the same washcloth or towel, changing your pillowcase on your bed daily as an example.
I would ask the new dermatologist to run a culture test on the fluid to find out what bacteria is that you are dealing with.
Congrats on being pregnant, isn't this your second baby?
Let us know what the dr says, take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums
All I know about Impetigo is it is contagious & a person has to be careful & have to take extra precautions. Not using the same washcloth or towel, changing your pillowcase on your bed daily as an example.
I would ask the new dermatologist to run a culture test on the fluid to find out what bacteria is that you are dealing with.
Congrats on being pregnant, isn't this your second baby?
Let us know what the dr says, take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums
Post Edited (straydog) : 11/7/2024 6:44:18 PM (GMT-5)
Hi StrayDog, yes it’s our second baby we’re so thrilled. Thank you so much!
I’ve been on Infliximab since December 2021. Haven’t had any issues since about January this year. It’s really frustrating as you said impetigo is highly contagious and I’ve washed/ bleached everything you could imagine and it keeps coming back!
My doc ran a culture test and it’s Staphylococcus bacteria it lives on most of us and can be harmless but for some reason I keep getting an infection of it. Hard to know if the infusions are to blame but I do think there are a lot of side effects to these drugs were probably not aware of either!
Thank you,
I’ve been on Infliximab since December 2021. Haven’t had any issues since about January this year. It’s really frustrating as you said impetigo is highly contagious and I’ve washed/ bleached everything you could imagine and it keeps coming back!
My doc ran a culture test and it’s Staphylococcus bacteria it lives on most of us and can be harmless but for some reason I keep getting an infection of it. Hard to know if the infusions are to blame but I do think there are a lot of side effects to these drugs were probably not aware of either!
Thank you,
Are you also using a topical abx? Mupirocin is for Staph infections.
q
MODERATOR - UC FORUM *Heather*
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 2x weekly (nightly for flares, tapered slowly back to 2x weekly maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Esomeprazole 40mg; Pulmicort/Oxeze/Airomir (asthma); Pristiq 50mg (depression); Rosuvastatin 10mg (cholesterol); Telmisartan 80mg + Diltiazem 120mg (BP & PVCs); Vyvanse 30mg (ADD)
~LDN 4.5mg / Celebrex 100mg x2 for pain
~vitamins/minerals/supplements; Probiotics....(Natural Factors Critical Care 55 Billion / Genuine Health Advanced Gut Health 50 billion alternate or both as needed @ bedtime)
~Metamucil capsules 6 @ 2x daily with meals; Vitamin D 3500 IU
~URSO 500mg @ 2x daily for Primary Biliary Cholangitis
~Sjogren's (secondary)...symptomatic treatment
"TREAT (FROM)BOTH ENDS" worth it !!
q
MODERATOR - UC FORUM *Heather*
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 2x weekly (nightly for flares, tapered slowly back to 2x weekly maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Esomeprazole 40mg; Pulmicort/Oxeze/Airomir (asthma); Pristiq 50mg (depression); Rosuvastatin 10mg (cholesterol); Telmisartan 80mg + Diltiazem 120mg (BP & PVCs); Vyvanse 30mg (ADD)
~LDN 4.5mg / Celebrex 100mg x2 for pain
~vitamins/minerals/supplements; Probiotics....(Natural Factors Critical Care 55 Billion / Genuine Health Advanced Gut Health 50 billion alternate or both as needed @ bedtime)
~Metamucil capsules 6 @ 2x daily with meals; Vitamin D 3500 IU
~URSO 500mg @ 2x daily for Primary Biliary Cholangitis
~Sjogren's (secondary)...symptomatic treatment
"TREAT (FROM)BOTH ENDS" worth it !!
Hi Quincy, yes using that at the moment it definitely does help but it’s like it won’t fully clear or if it does it comes back! It seems relentless it’s is really bringing me down! Not sure what my options would be going forward as I can’t keep getting these infections! Could they be as a result of Infliximab? I’m also getting strange dermatitis on my lips on & off the past few months too, could it be skin reactions to the drugs?
Yes, infliximab (Remicade) can increase one's chances of developing impetigo. Remicade doesn't cause it directly (staph does), but Remicade makes you more susceptible to getting it because of its immune suppression. You are correct that several other IBD treatments also increase the risk. Ones that don't, or do so to a much lesser extent, might be Entyvio, and maybe Skyrizi.
But since you're pregnant (congrats! by the way), and you're in remission, you don't want to switch to a different med and risk having your IBD flare up. You want to keep your IBD in remission while pregnant.
But after your pregnancy, if you're still having trouble with impetigo, I think it's reasonable to talk to your doctor about switching to a less systemic immunusuppressant like Entyvio. That's assuming, of course, you haven't already tried and failed it.
But since you're pregnant (congrats! by the way), and you're in remission, you don't want to switch to a different med and risk having your IBD flare up. You want to keep your IBD in remission while pregnant.
But after your pregnancy, if you're still having trouble with impetigo, I think it's reasonable to talk to your doctor about switching to a less systemic immunusuppressant like Entyvio. That's assuming, of course, you haven't already tried and failed it.
Post Edited (beave) : 11/9/2024 3:10:04 AM (GMT-5)
Hi Beave, thank you so much for your reply and your well wishes on my pregnancy 😊 Thank you for the info re the other meds I was not aware, had a Quick Look at Entyvio was not aware that this mainly targeted the gut I stress of the entire body thus reducing side effects etc. I wonder why the put you on Infliximab first? I was pregnant with our first and went into a flare and then ended up putting me on an infusion so didn’t have a whole lot of time to research etc. In your opinion would Infliximab be the most common infusion? Would love not to have to go changing meds especially like you said when it’s working for my IBD but if it’s a thing that these infections don’t subside after pregnancy I think we may have to look at it. Let’s hope the infusions keeping working for the pregnancy.
Thank you again, are you on infusions yourself?
Newly Diagnosed with Ulcerative Proctitis May 2020.
Currently Saloflak Enema’s 4g and Saloflak Granules 3g
Thank you again, are you on infusions yourself?
Newly Diagnosed with Ulcerative Proctitis May 2020.
Currently Saloflak Enema’s 4g and Saloflak Granules 3g
Advantages of Remicade are that it has the longest track history of use (it's been out longer than any of the other biologics used in IBD treatment), it has lots of data supporting its use, it has higher rates of success than several of the other drugs, and it tends to work quickly.
Disadvantages include higher risk of some side effects compared to some others (such as Entyvio), with skin and lung infections being some of them.
But if you are needing quicker relief, Remicade usually kicks in and helps a lot quicker than Entyvio.
Remicade is known to be pretty safe to start during pregnancy and works pretty quickly, so that's probably why they chose it when they did during your first pregnancy. That makes total sense. Entyvio might have taken far too long to start helping (often several weeks).
As for me I'm on Stelara, self injections after an initial loading dose that is done as an infusion. I've been on it for three years. I had to avoid the anti-TNF class (like Remicade and Humira) because I have some other pre-existing conditions that made them a bit too high risk.
Disadvantages include higher risk of some side effects compared to some others (such as Entyvio), with skin and lung infections being some of them.
But if you are needing quicker relief, Remicade usually kicks in and helps a lot quicker than Entyvio.
Remicade is known to be pretty safe to start during pregnancy and works pretty quickly, so that's probably why they chose it when they did during your first pregnancy. That makes total sense. Entyvio might have taken far too long to start helping (often several weeks).
As for me I'm on Stelara, self injections after an initial loading dose that is done as an infusion. I've been on it for three years. I had to avoid the anti-TNF class (like Remicade and Humira) because I have some other pre-existing conditions that made them a bit too high risk.
Just wanted to mention, while @beave has left you a couple of excellent posts which I'm sure will help you, clinically, Entyvio doesn't seem to be getting anywhere near the success rates of Remicade. We have many new meds, with many more to come, but as of right now, Remicade is still the state of the art treatment that we have.
Thanks all I appreciate all of your responses! Maybe I could be one of the lucky ones that this may disappear down the road for me- I suppose all I can do is wait and see.
Probably an obvious and stupid question but I presume if I was able to lower my dose of Infliximab it may reduce side effects and bump up my immune system slightly? I was on 10mg (max dose) every 6 weeks but I asked them to push it out to every 8 weeks and it’s going well so far. The GI had said the lowest dose is 5mg so I’m hoping I can get to that at some stage down the road!
Newly Diagnosed with Ulcerative Proctitis May 2020.
Currently Saloflak Enema’s 4g and Saloflak Granules 3g
Probably an obvious and stupid question but I presume if I was able to lower my dose of Infliximab it may reduce side effects and bump up my immune system slightly? I was on 10mg (max dose) every 6 weeks but I asked them to push it out to every 8 weeks and it’s going well so far. The GI had said the lowest dose is 5mg so I’m hoping I can get to that at some stage down the road!
Newly Diagnosed with Ulcerative Proctitis May 2020.
Currently Saloflak Enema’s 4g and Saloflak Granules 3g
73monte said...
Just wanted to mention, while @beave has left you a couple of excellent posts which I'm sure will help you, clinically, Entyvio doesn't seem to be getting anywhere near the success rates of Remicade. We have many new meds, with many more to come, but as of right now, Remicade is still the state of the art treatment that we have.
That's correct about Remicade having the best odds of success. Even though it has been out the longest, studies show it's still the most likely drug to help.
Entyvio doesn't have as good of odds, especially for Crohn's disease. But for UC, Entyvio has pretty good results - not quite the results of Remicade, but better than several other drugs. And Entyvio also has about the lowest risks of side effects of any of the biologics.
So, as always, deciding what to use is a combination of assessing the patient's overall health and risk tolerance and balancing that with the chances of working for the different drugs now available as options.
susie far said...
Thanks all I appreciate all of your responses! Maybe I could be one of the lucky ones that this may disappear down the road for me- I suppose all I can do is wait and see.
Probably an obvious and stupid question but I presume if I was able to lower my dose of Infliximab it may reduce side effects and bump up my immune system slightly? I was on 10mg (max dose) every 6 weeks but I asked them to push it out to every 8 weeks and it’s going well so far. The GI had said the lowest dose is 5mg so I’m hoping I can get to that at some stage down the road!
It's possible that lowering the dose and/or frequency of your Remicade infusions could reduce or eliminate the impetigo. It's impossible to know for sure without trying.
Did you start Remicade on 10mg every six weeks or did you bump up to that higher dose after not having a full response to the standard starting dose of 5mg every eight weeks?
Hi Beave, Honestly I’m not sure on that I’m going to ask my GI at my next appointment. I was pregnant when I first went on it and wasn’t sure on a lot, I had a tough pregnancy so just went along with what was best at the time. Would I have started on the lower 5mg initially? I do think they bumped me up I actually think my stool sample was extremely high after I had my son early 2022 but had no symptoms whatsoever so maybe they bumped me up then? We had our baby 8 weeks early so was more focused on that at the time!
10mg is pretty high isn’t it? Maybe that’s what’s causing the skin infections etc! Going to ring them on Monday to see when they changed me to that dose. I do remember asking before could I lower my dose but a nurse at the time mentioned something about my antibodies being either low or high meaning I had to stay on that dose? But all stool samples have been normal for the past year & a half and no symptoms thank god!
Would the norm be every 6/8/10 weeks being the longest and then the doses are 10/5mg?
Newly Diagnosed with Ulcerative Proctitis May 2020.
Currently Saloflak Enema’s 4g and Saloflak Granules 3g
10mg is pretty high isn’t it? Maybe that’s what’s causing the skin infections etc! Going to ring them on Monday to see when they changed me to that dose. I do remember asking before could I lower my dose but a nurse at the time mentioned something about my antibodies being either low or high meaning I had to stay on that dose? But all stool samples have been normal for the past year & a half and no symptoms thank god!
Would the norm be every 6/8/10 weeks being the longest and then the doses are 10/5mg?
Newly Diagnosed with Ulcerative Proctitis May 2020.
Currently Saloflak Enema’s 4g and Saloflak Granules 3g
Just checked my notes they upped my dose to 10mg in April 2022! Must of been from the high stool sample
Newly Diagnosed with Ulcerative Proctitis May 2020.
Currently Saloflak Enema’s 4g and Saloflak Granules 3g
Newly Diagnosed with Ulcerative Proctitis May 2020.
Currently Saloflak Enema’s 4g and Saloflak Granules 3g
Standard starting dose is 5mg/kg of body weight, every 8 weeks.
From there, some people need to increase dose frequency to every six weeks or even every four weeks. This is often done if the person does well the first few weeks then starts to become symptomatic again before getting to the next 8 week infusion.
Some people also bump up to 10mg/kg of body weight. This is done when the person has a response to the 5mg dosing, but not a full and good enough response to get into remission.
Then, all of that can be combined, such that you could be on 5mg every 4, 6, or 8 weeks, or 10mg every 4, 6, or 8 weeks.
The dosing is sometimes also increased from 5 to 10mg when the patient has developed antibodies to the drug (as seen in blood tests). Sometimes antibodies cause immune reactions and the Remicade needs to be stopped. Sometimes they don't cause reactions but they render the Remicade less effective. This is when bumping up the dose can help to counteract the negative effect of the antibodies.
So you have a lot of options. But being pregnant, the main concern right now is to keep your UC in remission during the pregnancy. So I would recommend waiting before changing the dose amount or frequency until you're near the end of your pregnancy. After the pregnancy, assess your UC with fecal calprotectin, symptoms, and maybe a scope. Then lower the dose or spread out the time between infusions.
If you can stay in remission once getting back to the 5mg/8 weeks infusions, and it helps the impetigo, great.
If not, maybe then and only then talk about switching to another treatment.
From there, some people need to increase dose frequency to every six weeks or even every four weeks. This is often done if the person does well the first few weeks then starts to become symptomatic again before getting to the next 8 week infusion.
Some people also bump up to 10mg/kg of body weight. This is done when the person has a response to the 5mg dosing, but not a full and good enough response to get into remission.
Then, all of that can be combined, such that you could be on 5mg every 4, 6, or 8 weeks, or 10mg every 4, 6, or 8 weeks.
The dosing is sometimes also increased from 5 to 10mg when the patient has developed antibodies to the drug (as seen in blood tests). Sometimes antibodies cause immune reactions and the Remicade needs to be stopped. Sometimes they don't cause reactions but they render the Remicade less effective. This is when bumping up the dose can help to counteract the negative effect of the antibodies.
So you have a lot of options. But being pregnant, the main concern right now is to keep your UC in remission during the pregnancy. So I would recommend waiting before changing the dose amount or frequency until you're near the end of your pregnancy. After the pregnancy, assess your UC with fecal calprotectin, symptoms, and maybe a scope. Then lower the dose or spread out the time between infusions.
If you can stay in remission once getting back to the 5mg/8 weeks infusions, and it helps the impetigo, great.
If not, maybe then and only then talk about switching to another treatment.
Thank you so much Beave for the detailed response I really appreciate it and it’s given me a bit of reassurance! I think personally there’s been a lot on in my life the past 2/3 years so I’m really hoping when our new baby comes things might settle down and hopefully I may be able to lower the dose etc!
When you mention antibodies causing immune reactions what does that mean? I’m pretty sure they mentioned that to me when I asked to lower the dose a few months back something regarding antibodies but I think the levels are good again as they didn't mention it since. I think the stool samples like you said are a great tell tale sign and I’m really keeping on top of them the past year.
Thank you again, I can deal with certain issues but it’s tough when it’s on your face: lips really brings you down! But like you said my main concern is my UC being under control for the next few months 😊
Newly Diagnosed with Ulcerative Proctitis May 2020.
Currently Saloflak Enema’s 4g and Saloflak Granules 3g
When you mention antibodies causing immune reactions what does that mean? I’m pretty sure they mentioned that to me when I asked to lower the dose a few months back something regarding antibodies but I think the levels are good again as they didn't mention it since. I think the stool samples like you said are a great tell tale sign and I’m really keeping on top of them the past year.
Thank you again, I can deal with certain issues but it’s tough when it’s on your face: lips really brings you down! But like you said my main concern is my UC being under control for the next few months 😊
Newly Diagnosed with Ulcerative Proctitis May 2020.
Currently Saloflak Enema’s 4g and Saloflak Granules 3g
When I mention immune reactions to Remicade due to formation of antibodies, I'm thinking of things like rashes, joint aches, fatigue, low-grade fever, things like that.
Thanks that makes sense.
Also if I did develop antibodies previously and they upped my dose as a result, would it be possible that down the road I could lower the dose and my antibodies would be okay or is it the case that because of the antibodies forming previously I’ll always need a higher dose? Sorry hope that makes sense
Newly Diagnosed with Ulcerative Proctitis May 2020.
Currently Saloflak Enema’s 4g and Saloflak Granules 3g
Also if I did develop antibodies previously and they upped my dose as a result, would it be possible that down the road I could lower the dose and my antibodies would be okay or is it the case that because of the antibodies forming previously I’ll always need a higher dose? Sorry hope that makes sense
Newly Diagnosed with Ulcerative Proctitis May 2020.
Currently Saloflak Enema’s 4g and Saloflak Granules 3g
I understand the question. But unfortunately that's one that I don't know the answer to!
Thanks Beave, I’ll keep you posted. Thanks again for your help!
Newly Diagnosed with Ulcerative Proctitis May 2020.
Currently Saloflak Enema’s 4g and Saloflak Granules 3g
Newly Diagnosed with Ulcerative Proctitis May 2020.
Currently Saloflak Enema’s 4g and Saloflak Granules 3g