Mouth Sores and Enbrel

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Ducky
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   Posted 4/3/2005 3:51 PM (GMT -7)   
confused  Ok... I don't know if I should be worried or not.  I have read that mouth sores can be a side effect of Enbrel.  Does anyone know how many and when I should be alarmed?  I have noticed 2 small sores on the inside of my mouth and I don't know if they are from the Enbrel or something else.  I get these sometimes for what I used to think was no reason.  But now that I'm on the Enbrel, I feel like everything that happens to me is because of this medicine.  I know I'm paranoid, I can't help it.  tongue   Any advice would be greatly appreciated!  Thanks! - Ducky
 


erin.K
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   Posted 4/4/2005 1:08 PM (GMT -7)   
Hi there Ducky! On the great Enbrel Escapade! me too. i don't know if it is in the literature about mouth sores as a side effect....check the pamphlet (if you can read the darn thing, the print is so small). the only thing i can add to this comment is what i experience with the enbrel. it gets me in the gums. they bleed and its sore and hurts to brush. i never got anything on the inside of my cheeks or on my lips though. since the enbrel suppresses the immune system it might just be that the oral mucosa gets inflammed moreso than before. a lot of blood pressure meds and anicoagulants can cause mouth sores too. it wouldn't hurt to try some acidophilus, or even eating some yogart. they put back some natural good bacteria to fight off some extra bad stuff while we're on enbrel. maybe it will help some (but only if it's ok with your doc and you're not allergic to anything). i had to change toothpastes like 4 times in one week because everything burns. and you are not paranoid!!! it is a good thing that you pick up on changes in your body. a lot of people ignore things that might be important or help with treatment or diagnosis. have you had any visits to the dentist recently? get back to me. good luck!!!!!! erin

Ducky
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   Posted 4/5/2005 10:30 AM (GMT -7)   
I just went to the dentist about a month a go, right before I started taking the Enbrel, and everything seemed ok.  My sores are smaller now, actually just barely there, so I'm guessing it's not the Enbrel that did it.  I did see on some of the literature that mouth sores can be a side effect, but it is less common.  Seems as though I am always getting the stuff that is less common, so I figured why should the side effects be different?!  tongue Thanks for thinking I'm not paranoid...I feel like I am, everytime something happens or I feel a pain somewhere in my body, I start to think, "Ok, is this a side effect or is that normal?... Should I call the doctor... should I wait..."  I know the people at Enliven have got to be thinking, "Would this woman QUIT CALLING US!!!"  :-)   Thanks for listening and letting me vent.  I guess I'll just have to see how this all plays out.  I've got an appt with my rheumy on the 26th for a follow up and see how well I'm tolerating the Enbrel, should be interesting!  I haven't had any problems with my gums yet, and so far my Mentadent is holding up just fine for me... I have noticed that I am starting to get some injection site reactions, but it has been very mild and it doesn't itch, just is a little red at the site.  Have you had any other side effects with the Enbrel?  Thanks! - Ducky
 


erin.K
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   Posted 4/5/2005 3:42 PM (GMT -7)   
yeah  Hey... my rheumy appt. is on the 26th too! that's funny.  i forgot about mentadent! that stuff was great! think i'll go buy some. using sensodyne now.  just think of it this way, if we didn't bug the enliven nurses they'de be out of a job tongue .  i really really hope you have success with the enbrel.  from november till february i was the best that i had been in a very long time and that was after only a month of taking the enbrel.  haven't been doing well the last 2 months, so i think i need to add somethig to the enbrel or change meds.  the only side effects i had from it were deminished white blood cells and increased lymphocytes(all in the bloodwork) and they are still trying to figure out if it caused me to drop a significant amount of weight. i went from 112 lbs down to 97.5 as of now(on a 5"5 frame, i'm looking a wee bit creepy). the doctors don't think it's related to the med, but i find it weird that it happened as soon as i started.  other than that.... i had very good results for about 3 months.  i am hoping for it too kick back in.  i took a leave from work from may until july so hopefully i'll go into a nice remission and by resting, the enbrel will maybe work better.  stick to it ducky! i hope it works well on you. a lot of people who post here have had good results and are satisfied with the benefits. much much luck always.  sincerely, erin

Ducky
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   Posted 4/6/2005 7:20 AM (GMT -7)   
Yesterday was my 4th injection and so far everything seemed to be going ok, until I noticed a nice bruise at my injection site.  Of course I called the Enliven nurses (AGAIN) eyes And they said it's normal.  It just worried me 'cause I hadn't had any bruises at the injections site, the last 3 times.  So far I haven't lost any weight (which it really wouldn't hurt my feelings if I did drop about 30 pounds  tongue  ).  And I have noticed some pretty significant headaches.  But I could also chock those up to allergies.  So, I guess I'll just wait everything out and see what happens on the 26th.  tongue Do you think that the rheumy will switch meds or possibly up your dosage?  I have heard of someone taking the 50mg shots 2x a week.  I wonder if that would work for you?  I wish you the best of luck with your appt and finding out why you have dropped so much weight.  Keep me posted on what happens!  - Ducky
 


oreo
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   Posted 4/6/2005 7:29 AM (GMT -7)   
Ducky, you are NOT paranoid. When we have a problem with our bodies we tend to fixate on that part. I naturally leads to stress and worry. Mouth sores are a side effect but the ones you mentioned could be from something as simple as eating a high acid food (ie pineapple, oranges etc) sores are common from these as they change the acid levels in our mouths. If you are having bruising at the injection site, you probably tensed just as you touched the needle to the skin. I has happened to me recently too. I find it is really bad the injection after I get a bruise because I assume that this one is going to hurt too and then I tense up. Have you tried injecting into your abdomen? I have found that I have fewer site reactions in the abd. then the thigh. Just a suggestion. Keep talking to us. WE are here to listen and give support. My prayers are with you.
Oreo
Worry not for tomorrow, for tomorrow will take care of itself.
 
Remember you are special and God loves you very much!!!!


Ducky
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   Posted 4/6/2005 7:34 AM (GMT -7)   
Oreo - Nope, haven't tried the stomach yet... am a little leary of that... I'm a chicken! :) It's everything I can do to give myself the injections in my thighs. I think I will start injecting in my stomach next week and see if that helps. Maybe my thighs need a break... who knows... My mouth sores have now gone away, so I don't think it was the Enbrel... I had taken my kids to the movies and did manage to eat a rather significant amount of candy.. I think that may have been what triggered the sores. Thank you for all your kind words and help... I don't know what I'd do had I not found this site! Best wishes always - Ducky
 


oreo
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   Posted 4/6/2005 7:40 AM (GMT -7)   
Actually, the stomach doesn't hurt as much as the thigh. I tried my thigh and the pain was worse. There is more fatty tissue in the abd. and fewer nerve endings close the the skin. Try it. Make sure you grab
the "chunk" of skin that you are going to inject into. Kind of like you would when you talk about pinching an inch. Makes for fewer site reactions when you do. I alternate between lt side and rt side and then top and bottm of each side. The company recommends to avoid the the inch or so around the naval. Good luck.
Oreo
Worry not for tomorrow, for tomorrow will take care of itself.
 
Remember you are special and God loves you very much!!!!


Ducky
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Date Joined Mar 2005
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   Posted 4/6/2005 7:42 AM (GMT -7)   
I'll do that next weekand will let you know how it goes... If you hear a loud scream around 1130 EDT on Tuesday, you know it didn't go well... LOL... Thanks for all your help! - Ducky
 


oreo
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   Posted 4/6/2005 7:46 AM (GMT -7)   
I'll be listening. If I hear you in southern ontario, I'll know it was bad.
Oreo
Worry not for tomorrow, for tomorrow will take care of itself.
 
Remember you are special and God loves you very much!!!!


erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted 4/6/2005 8:02 AM (GMT -7)   
confused I say we all tell people come the summer time that we all are part of a professional kick boxing club and therefor would explain the bruises! yeah hi ducky. i'm glad the sores got better.  i bruised a lot in the thighs as well.  it's easier to reach them and inject in that area, yet it does tend to bruise more due to more muscle and small blood vessels.  the best place i found that works for me and leaves no bruises is in the area of the fleshy part of my upper hips (love handles?)  i don't have many good injection sites but that one is good and i found it rarely to leave any marks there. i'm freaked out about giving it in my abdomen too. i just don't like the idea of it.  do you have anyone to help you at home? sometimes its easier to take a shot from someone else? i congratulate you though for doing well with the injections. it's so much easier to give one to someone else, and really awkward to do it to yourself!  i don't know what the rheumy will do on my appt.  i'm supposed to see a GI dr. today at 4 but i think i'm going to cancel. it doesn't make sense to me for them to send me there. i have no problems eating or bowel problems and i don't get any stomach pain either. for them to refer me to a GI just for weight loss?  the thought of seeing and starting again with more doctors is not very attractive to me right now. Do you think they might be wanting to rule out crohn's or collitis?  i know a lot of people develop GI auto immune prblems with RA . thinking i will call them to find out their motives for sending me there first.  it is a beautiful day today! i hope it's the same for you where you live. think it's going to reach 70. have a nice day! talk to you soon.  erin

Ducky
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   Posted 4/6/2005 8:23 AM (GMT -7)   
Professional Kickboxer!  I like that!!! yeah    I didn't know we could inject in our love handles.... hhhmmmm... Lord knows I've got some love handles! tongue A GI dr. huh?  Sounds like they do suspect Crohn's or Colitis.  I don't like seeing new dr's either... I actually dread going to the dr all the time... I just want to go once and some one wave a magic wand and say "There, all better..." and send me on my way... Wishful thinking huh? cool It is absolutely beautiful here today... I live in Charleston SC and it is supposed to be 77 or so... I should be at the beach instead or work... Oh well... maybe this weekend!  Good luck today, let us know what the dr. says... I understand your apprehension about going to a GI dr... but it's always better safer than sorry... My best to you always - Ducky 
 


erin.K
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Date Joined Mar 2005
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   Posted 4/6/2005 10:11 AM (GMT -7)   
the love handle area is not an actual approved sight for enbrel as they tell us in the literature... but a sub Q injection can be done there. i've pretty much exhausted the skin on my thighs so the uppermost part near my hips has to be the spot for a while. i called and cancelled my appt with the GI tonite. going to try to eat a little more and see if anything sticks. i don't think it's an emergency so i'm going to wait another 3 weeks and see what happens. i've got the ensure drinks so maybe that will help. come to think of it...my appetitite is kinda poor and i should eat a little more. the GI doc would probably think i'm nuts anyways. you lucky duck 77degrees! enjoy the good weather! good to hear from you!!!! erin

Ducky
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   Posted 4/6/2005 12:35 PM (GMT -7)   
Are you more active now than you have been in the past? Maybe since you're not eating that much and if you're more active, you'll drop the weight.... Let us know how you feel and what happens... Best wishes to as always - Ducky
 


erin.K
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Date Joined Mar 2005
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   Posted 4/6/2005 3:04 PM (GMT -7)   
active? i'm a slug! LOL . i'm not active at all. i'm mostly bedrest 3 to 4 days a week. and then the rest of the week i take a class and then try to work a few hours the other 2 days. i know something is very wrong with the weight loss but i really believe it doesn't involve the GI. i think i'm going to see my regular md and ask for a referral for a hemotologist. i feel that's a better step than a GI. it came about quite suddenly and a lot of my bloodwork is off. the only real exercise i do is maintain my flexibility...if i do too much demanding aerobic stuff i lose breath and feel faint. thank you for your concern ducky! i'm sure i'll gat some answers soon. let's hope for very nice weather to finish the week off!!!!! oh yes...i've been brushing up on my kickboxing skills! LOL erin

oreo
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   Posted 4/11/2005 8:07 AM (GMT -7)   
Erin I'm sorry you are feeling so bad. Get to the Dr. and find out what is going on. I'm concerned about your weight loss. As you know sudden weigth loss can cause your blood work to go way out of wack. It is not all in your head if you are loosing this much weight. Let us know how you are doing.
Oreo
Worry not for tomorrow, for tomorrow will take care of itself.
 
Remember you are special and God loves you very much!!!!


erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted 4/11/2005 12:39 PM (GMT -7)   
thanx oreo for the king concern and advise. my plan of attack is to really work hard on trying to eat a liitle more each day to see if the weight sticks and see what that brings me before the months end. i ahve been eating a lot more than usual lately and have been able to gain 3 pounds. currently at 100 and has been maintained for 4 days now. i think fatigue and perhaps a little depression and a whole lot of pain has a lot to contribute to it. but these are only my opinions...i'm sure you now that not feeling well screws with the appetite and plus it's very exhausting to eat too. i'm seeing my doc on the 26th and i guess take it from there. if still dropping this time around i will seek further specialists....hope the first approach works(who needs to add another appointment to the list anyways!) off to eat some meatloaf and potatos!!!!!!!!!!!!!!!!! take care, erin

Ducky
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   Posted 4/12/2005 10:49 AM (GMT -7)   
Well, I injected in my stomach today... will see how it turns out.. Erin - I hope everything is going ok with you.. Any improvements? Hopefully at your doctors appt on the 26th you guys will figure something out... Please keep us posted! - Ducky
 


erin.K
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Date Joined Mar 2005
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   Posted 4/12/2005 11:49 AM (GMT -7)   
yeah  Ducky, we didn't hear any screams come from that part tof the states!!!!!!!! so did the stomach shot go ok? weird right?  i hope it wasn't too bad and hopefully it will turn out to be a good spot.  lots of good luck!   i've been eating like an absolute maniac for a week and was up to 100 lbs for a few days, and now it all dropped again mad . i tried my best so i feel like i should give the GI doc a call . also i did not know that having RA can increases or cause the chances of getting colitis....and from what i know of it, colitis can cause weight loss.  have to say though , i had a fun time chowing down and not worrying about clothes or swimsuits or anything. but it is fustrating now that i don't know what's going on and that i've done all i can on my part. on the positive side... as i told you in the past, i'm trying to finish up school and it's almost done now(4 more weeks!!) i also contacted the National Arthritis Foundation and volunteered to help out over the summer with some congressional forums (with the help from my college's honors society). so i will keep all of us in mind and let you know what they're up to on the research and funding side of arthritis. it should be quite interesting and will probable a good reference too for when i finish my degree. but most importantly i want to get involved because this medication pulling and fda stuff and insurance problems are getting out of hand!  hope you are having good weather ducky!  the very best to you and the ab shots too! talk to you soon,  erin :-)

oreo
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   Posted 4/12/2005 12:16 PM (GMT -7)   
Get checked out. Give your mind a rest. Stress can cause your metabolism to speed up which causes you to burn more calories. Fear is the worst thing. I wish you the best of luck. For me I found that once I got the pain and stress under control the weight started coming back. As the pain increase, the appetite is suppressed and I start to loose again. I try to keep the pain under control and when I can't I resort to gravol before meals or a bedtime. I find it works to encourage me to eat. Maybe psychosematic, but it works.
My prayers are with you.
Oreo
Worry not for tomorrow, for tomorrow will take care of itself.
 
Remember you are special and God loves you very much!!!!


Ducky
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Date Joined Mar 2005
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   Posted 4/12/2005 12:22 PM (GMT -7)   
tongue   Well, yeah, injecting in my stomach was weird... but it didn't hurt...Ok, the needle going in didn't hurt, but as always, the medicine going in did... sad So far it doesn't look like I'll get a bruise from it.  We'll see what it looks like tomorrow.  Maybe you should give a GI doc a call and just see what his take is on things, can't hurt right?  I know, it's hard going to dr. after dr., but you need to find out what is causing your weight loss.  I too hate having to go to 10 different dr's but it needs to be done.  That would be wonderful to be able to eat anything you want and not have to worry about weight gain... sad someday :-)  I can dream!  Weather here is ok, was really nice yesterday, today it is a little cloudy and we are supposed to get some storms, but it's still in the 70's... Hope the weather is nice for you!  Best wishes always, and let us know what happens! - Ducky
 


oreo
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Date Joined Feb 2004
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   Posted 4/12/2005 12:25 PM (GMT -7)   
Ducky, so glad it went well. My last one didn't give me a bruise or a sore spot. Yeah, this is great. First time in weeks. Must have been an off batch. I hope it continues to go well.
Thinking of you.
Oreo
Worry not for tomorrow, for tomorrow will take care of itself.
 
Remember you are special and God loves you very much!!!!


erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted 4/12/2005 3:39 PM (GMT -7)   
thank you ducky and oreo for the kind words, advise and encouragement. it was very helpful and gave me some clarity . i'm going to pick up my referral tomorrow for the GI and start faxing my records over. you're right, it needs to be done and i'm not going to fuss over it any longer.... might as well do it now and get it over with so it's one less thing that needs to be done later. AARGH!! it was so nice sunday 75 degrees and now it's going down to 38 tonite!! what a tease!!!! Is anyone psyched for the Kentucky Derby coming up in a few weeks? i know there are a few riders and folks interested in horses that post here. For those already handicapping the race I wish you lucky insight! and for those who bet.... may it be a terrific win!!!!

erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted 4/15/2005 3:44 PM (GMT -7)   
AAARGH! since this post originally started with enbrel and mouth sores, i figured this space would be appropriate for this comment. just developed Thrush on my tongue! yuck, ick, patooey! it's not that bad, but it a tiny patch all the way in the back and it feels like tiny brillowy hairs! freaky. got the Rx swish and spit stuff. my boyfriend's best buddy is am M.D. and i called him about it and he said just like antibiotics can cause it, so can immuno suppressants like enbral humira and even steroids sometimes too. should go away in a few days. i guess i can put the lawn mower away...the backyard on my tongue is only for a short visit!
LOL erin

erin.K
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Date Joined Mar 2005
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   Posted 4/18/2005 8:12 AM (GMT -7)   
yeah   tongue smurf :-) :-) cool :-) :-) WEEEEEEEE HOOOOOOO!!!!!!!!!!!!!!!!!! no more fuzzy tongue! friday was prescribed Nystatin for thrush. over the weekend cleared up right away!  doc said prednisone, oral inhalers, and DMARDS can cause it.  good to know.....and this stuff worked great.
enjoying the day with hair in ALL THE RIGHT PLACES   (lol) erin
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