Think maybe I am going into a flare
My lip is breaking out with blisters, I think it's causing a flare of my symptoms.
Last edited by merryalliss30; 06-05-2011 at 01:47 PM.
You've got breaking out what i live with daily, blistered lips all around the edging of my lips and they get sore and really pronounce at times.
Mine clear up in the winter but come summer bang they're off again and before steriod creams became no good to me recentley before that in no time the creams soon moved them.
I would ask about a steriod cream to help mary. xxx
Last edited by Peridot20_Gem; 05-23-2011 at 02:46 AM.
We all toss around the word "flare" to cover so many things but honestly there are varying degrees of flares. 2 years ago I meant one thing when I was flaring and today I am in what my doctor calls "a major flare" which is something VERY different. I think that our flares tend to be individual and to ebb and flow within our own bodies. I have found that there is a pattern that my body usually goes through.
When they first put me on a medicine I begin to feel better and when symptoms do break through (like mouth ulcers) it is less severe then it was before the medicine. Then, after awhile, the medicine doesn't work as well as it did before. It is like my body becomes used to it and instead of making my flares less severe they begin to be like they were before the meds (and maybe even worse). I say this because it sounds like your meds may be holding back your flare (which is GREAT) so you are not getting the full blown effects that you were before treatment. Since you are getting the mouth blisters I would suggest that you do go to the doctor and let them modify your meds so you don't have to get into a really bad place. It is much easier to keep the symptoms in check then it is to try and get rid of them once they have exploded.
Anyway, I think your instincts are correct. Go on to the doctor and see what he suggests that you do so you don't have to get to the major fatigue or to that place where you are feeling terribly bad. Let us know what happens!
Success is not final, failure is not fatal: it is the courage to continue that counts.
Peridot20_Gem, your the first person I've talked to online that has said they experience these type of sores. I sware it reminds me of HSV but I was tested for both types after an outbreak and it was negative. The blisters are multiple, start out small, then get really large. Every doctor I have talked to about getting these things, shrugs it off like it's nothing, except my GYN, and I showed him a photo I took and did get him to test me for HSV. My PCP wouldn't do it years beforehand, he tried to say it was canker sores, he saw them when they were tiny on the side of my lip. I know canker sores don't occur on your outer lip and skin. What got me concerned is when I got so sleepy when they'd break out and it would go on about a week and half before I'd get any relief. That's why I believe it's autoimmune sores, because they were occuring with my flares every 6 wks or so and my ANA/RNP came back high. I did not get these things when I was on 400 mg of plaquenil but now I'm only on 100 mg a day.
Those medications must be stopping the flare from being full blown. That's good. But your scaring me Tgal.. If they modify the medications, does it resolve your issue? I'd hate to think I'd get to the point that it just wouldn't work anymore. I also get used to medications too easily. Shoot fire.... I don't want to be at that point that I feel sick every single day again. If I flare from time to time, whatever, but I don't want to feel tired every day anymore.
Well my flares were always more than noticable. Always the same. More pain, and fatigue so bad that I was bedridden for weeks at a time. I would lay in bed and cry myself to death. I would start feeling suicidal because it was so bad. And the more I'd lay in bed, the worse my muscle pain would get but I was so exhausted that I couldn't do anything but stay in bed. When the flare resolved, my depression would subside, and I'd still be sick, but nothing comparable to how bad that was.
I'll call my doctor today, I don't know what they are going to do as far as getting me in on a work in if he doesn't have anything open, only on the fact that I have blistering on my lip, since I am not dog sick, but I guess we'll see. Maybe I'll make up another excuse too.
You need to be sent to a dermo mate because mines off the raynauds disease and a good specialist in the field will soon sort you out, i was on steriod based creams which help remove them within 2wks but when you've done a course they like you to take a break because the cream can age you but i've gone beyound steriod creams now and when i saw him he's testing my bloods to see which will work with either DAPSON (Sulpha tablet) or MEPACRINE (Antimalerial tablet) the side affects are strong but i need something, even Saysusie as asked me to let her know how they work but i don't see him till the 2nd June. When they're really pronounced i have my hubby saying you got a cold sore because that's how bad they can look at times.
The plaquenil when i was on it removed them for me besides the steriod creams and since i've come off the plaquenil which i was taking 200mg daily, bang they're back again.
Mary the medications only surpress issues connected to Lupus and ususally every 2yrs people are either up or downed on medication or stronger meds are used like me with my skin, Lupus can't be cured so the drugs just help the symptoms to stop coming out full blown so much.
Mary your pain got worse mate through the worry and feeling suicidle, depression is a well known bonus for Lupus it just really thrieves of it and adds extra pain or symptoms to what you have already, i was told last week to stop smoking as that's a major issue with Lupus and my answer was i've took the cocktail of the pharmacy with Anti-deprssents which don't work so that fag when i need one helps to relieve me of what i'm going through and my GP checked my lungs with everything going on and he mentioned me backing them up as i'm killing myself, sometimes i think at least i wow be in this Bl..dy pain constant.
All the best with your doctor mary and keep we updated. xxx
Last edited by Peridot20_Gem; 05-23-2011 at 07:53 AM.
I saw a different doctor today from my normal. He said it could be due to B12 but these have been occuring alot longer than I've been B12 deficiant. He also said it might be due to smoking and I should quit, well like I told him, I quit all of last year and they still occured. He said it might be thrush, wants me to try anti-fungal cream. He came to the conclusion of that because my cigarettes discolor my tounge a little bit. I had these blisters without any discoloring on my tongue, and they are not white. He found blistering in my mouth too. Said it might be precancer but like I told him, I didn't want to here such a thing. I have enough anxiety without them telling me that nonsense. Also mentioned herpes but I told him I was tested and it was negative. He wouldn't do a biopsy, didn't feel it was necessary right now. My dermatologist retired so I don't have one anymore. I might try my dentist here shortly and see if he will biopsy it. If they didn't make me feel so crappy, I wouldn't care, but since they do, I care. He also said all imuran was going to do is weeken my immune system and that could be why, not quite when I've been getting these for years and only been on Imuran for 2 weeks. He said all antimalarials are going to do is kill my liver. Is that true? I actually forgot he mentioned sjogren's. Too many guesses for me. If the antifungal doesn't work, I have a back up prescription for a medication that treats Sepsis, something else I know I don't have.
And I know depression makes it worse but I wouldn't have gotten that way if I hadn't been so down sick.
Last edited by merryalliss30; 05-23-2011 at 11:37 AM.
Actually might not call my dentist, blah blah to it.
Peridot20_Gem, can you look at those blisters and see if they look similar to yours, if you get the free time. I posted them in one of my albums. I really have no idea what lupus blisters look like or what these things are. I assume it's autoimmune but I don't know. And I am getting so tired, I might be back online later tonight but for now, it's off to bed. Love you guys. Thanks for helping.
Originally Posted by maryalice40
I've never known B12 Deficencey cause blister's to your mouth and refering smoking i used to smoke down to the end of the fag and it used to burn my actual lips, so since i've stopped it i have nothing now. Refering the colouring of your tongue mine goes slightly brownish ontop and the dentist told me smoking causes that and some people have a certain acid which builds up and holds on the tongue, sometimes my tongue clears, it's like it as it's moments of coming and going.
If you don't mind me saying mary but go to your dentist, mine know all my history and the lupus and when i go he checks my mouth and tongue for cancer and so far i'm clear of cancer, ulcers of the mouth and all i get is your teeth and gums are healthy it's just a shame you smoke but your dentist will check your mouth for it, as they're trained in that field for seeing cancer spots the lot.
Antimalerial and anti-cancer drugs after taking them for 2yrs do carry a possibility of affecting the organs but it's not 100% but while on these drugs you should have regular blood checks done for your liver anyway.
I'm not being funny but it's like your doctor is guessing his work in one way, when it should be properly conducted, it's like he not speaking one way or the other with you, everything he's saying is negative talk to me but get to the dentist please and let them check your mouth for a start and that alone will settle your mind.
Last edited by Peridot20_Gem; 05-23-2011 at 02:36 PM.
I've just viewed your picture's of your lips and 150% that's what i've got, at the moment they're the smaller versions around the out line of my lips top and bottom but when it does flare up they go like your second picture, that's when my hubby thinks i've got a cold sore but i've not and all that comes from my raynauds and SLE in the system, the dermo said i need the last resort which is tablets either sulpha or antmalerial but my bloods have to match to take the drug apparentley.
Originally Posted by maryalice40
I know you mentioned your dermo retired but ask to be sent to another as you'll be looked at properly.
If you not back on line mate, godbless to you HUGS terri xxxx