Hi all me again, thought I would ask here as you've all been so helpful to me during all of my investigations.So update I'm currently on hydroxychloroquine finished a 6 week course of steroids a few weeks ago and I'm feeling up and down currently, last night however my lips became really painful but I was too tired to check. When i got up this morning my top lip has like a red rash on the inside and my bottom is white patchy but both swollen, I've gone to the pharmacy and they can't help and I'm waiting on a reply from my rheumatologist.
I'll Include a picture, is this normal for connective tissue disease along the lines of lupus? Is there anything I can do to help it as currently painful and hot to touch. Thanks in advance for any responses. 💕
Just an update for you all it seems to be getting worse more into an ulcer/blister I will add a new picture if it will allow. Luckily however I've managed to speak to a rheumatology nurse who has put me on a course of steroids for the weekend until we can discuss a plan of action on Monday! Thank you everyone for commenting I really appreciate all your advice 💕
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Haylz2109
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Thank you, yes I am doing that frequently and I ended up hearing back off a rheumatology nurse who requested I go on steroids for the weekend until they can make a plan going forward ! Thank you for your response 💕
Thank you, no I've done nothing unusual or changed anything within the last weeks let alone 24 hours lol! Thanks I had a very unhelpful doctor when I visited the gp yesterday unfortunately but had a lovely rheumatology nurse get back to me and put me on steroids for the weekend until a plan can be made going forward. Thank you for your response 💕
Thank you, funnily enough that was the first thing I tried in case it was an allergic reaction even though I haven't had anything out of my usual but unfortunately it didn't do anything. Thank you though 💕
Hi Haylz, I have a sore mouth almost every day sometimes with swollen lips when sore at front of my mouth. It usually improves throughout the day but sometimes lasts 2/3 days.
I've always understood this can be a symptom of Lupus but I have Sjogrens secondary to lupus as well. This may be the same for you. It's a symptom I don't bother to mention any more and just live with it.
It's worth trying to find out what and why just so that you know and to put your mind to rest.
Thank you, yes I do suffer with dry eyes and mouth constantly but did have a lip biopsy which ruled out Sjorgrens which is why they came to the thoughts that its a connective tissue disease along the lines of lupus and started me on hydroxychloroquine to try and help as my bloods don't show anything other than elevated liver enzymes. I definitely am the same when it comes to ulcers I get them so frequently I forget they're a symptom 🙈 thank you for your response 💕
My lips have started swelling with certain antibiotics and I get mouth sores. I was told to not take any medication that has this reaction. I used to have no reaction to antibiotics. Definitely contact your rheumy as it could be the steroid you took that's done it. My lips look like I've had lip fillers when it happens, very bizarre. Once I stop the medication every goes within a couple of days. Keep your pics for the rhuemy.
Thank you, I've always had severe ulcers and even have scarring from them but never had this sort of symptom. Yes I found since becoming ill I am reactive to certain antibiotics yet never before. I have luckily got in touch with a rheumatology nurse who has put me on a course of steroids for the weekend until they can come up with a plan going forward so hopefully this will help. I don't think it's a reaction to the steroids as I finished the last ones around 6 weeks ago and never had any sores etc whilst on them although this is all new to me medication wise. Thank you for your response 💕
Same with me. I started this year reacting to medicines previously ok with. You never know where Lupus/Sjogrens is going to take you next. I guess you've thought back on food and what you ate in case it's that. I hope you find out if there is a reason. The sores hurt so much though, its hard to eat anything. Seems like everything contains salt that you didn't even know contained it before.
Crazy how your body reacts isn't it? Well I'm still undiagnosed so far but been told they believe it's a connective tissue disease along the lines of lupus hence the hydroxychloroquine treatment. Yeah that was also one of the first things I done because as you say so much can make something change and I've had reactions to new lip balm before so now I'm very careful with what I use. Thank you 💕
I am interested to read you mention scarring from mouth ulcers. I get many but as it is when I did see the dermatologist I only had a couple of little ones not the big ones and she wrote there was no ulcer scarring .this seemed to me that they were unimportant as didnt scar 🤷♀️ but getting so many still makes me wonder why I do and I don't know myself what the scarring would look like. I also get swelling of the top right lip inside, always the top and only right side 🤷♀️and I cannot link it to anything just happens.
Sorry for the late reply. Oh is it? I never knew mine scarred tbh until I went and saw a doctor in oral maxillofacial and that was what she mentioned at the time mind I have been experiencing ulcers since my teens and severely too but doctors always fobbed me off with them. Perhaps it maybe worth asking to be seen by an oral maxillofacial specialist? In case they can help you further, I also made sure to take pictures of all the ones I suffered as its guaranteed when you get seen there won't be an ulcer at the time lol! Hope this helps. 💕
thankyou , I mean unimportant to them not to merit was as if they didnt believe the amount I got as only a couple of tiny ones when see her but my many photos prove differently. I was tested for herpes all clear and then not mentioned again.pleased to hear you didnt have whilst on steroids, I didnt either 👍.I hope you move forward with this and best wishes 🙏
Ah I get you, hate it when you have doctors who make you feel like things are unimportant/don't believe when you know they are relevant to the issues you're currently having. Thank you, I hope you manage to get further help going forward 💕
Hi - May I suggest have as little sugar foods as possible as this causes me swelling mouth, especially honey and I love honey. I personally take extra vitamins that help me
Thank you, I will definitely try to avoid sugar then but haven't had any honey or anything for a few weeks so it is quite strange. I do normally take vitamin d due to a deficiency and I get severe mouth ulcers frequently just never had this before. Thank you for your response 💕
Woke up one morning looking like I’d had a dodgy of lip filler job! I thought I had an allergic reaction to a new lip balm so stopped using it, then a few weeks later it happened again, this time with tiny sore blisters around the vermillion border. It’s happened a couple of times since, sometimes I also get a weird rash too, and I have noticed that I’m generally feeling a bit more rubbish that normal when it happens so have put it down to a little flare and another random symptom relating to lupus!
Sorry i thought I'd replied to you but it wrote underneath 🙈 Thank you, it really does doesn't it ? Lol the doctor I saw was unhelpful and was like oh well it doesn't look swollen yet compared to my usual it definitely is! The joys of all the extra unexpected symptoms isn't it ? 🙃 thank you for your response 💕
I have some like that sore and very dry tried everything Chemist gave me metronidazole cream and I tried Vaseline, and various lipsalves. It cleared up for quite a while after I resorted to acyclovir cream for cold sores also on recommendation of the chemist but has come back again I wonder if it’s something to do with the herpes virus as I usually get cold sores after a flare but not had any at all since this started and when it did start I thought I’d got a cold sore coming but it didn’t come. How many of you who have this problem have had cold sores before?
Thank you, unfortunately my pharmacist didn't know what to recommend. I luckily spoke to a rheumatology nurse who requested I get put on a short course of steroids which seems to be helping along with using ice on it intermittently. I personally have never suffered with cold sores only ever severe ulcers etc sorry to hear that you've had a similar recurring issue. Thank you for your response 💕
Thank you, so far so good only on them for a few days to resolve the issue hopefully 🤞🏻 however my rheumatologist now wants me to stop hydroxychloroquine to see if that was causing side effects so I'm a little worried now about all my symptoms returning with the medication stopping 😔 trial and error though unfortunately. Thank you for your response 💕
Tapering down from steroids and eventually stopping, from my experience, can trigger symptoms such as this. Also, your adrenals are probably kicking back into action as well. However, to be on the safe side, as Sjogren's can cause soreness and rash of the mouth as well, I would get tested for this. I would also rinse with a mouthwash that doesnt contain alcohol, stay away from spicey and acidic foods plus drink loads of water. Remember, it takes a while to recover from being on steroids. People often underestimate these type of medications.
Thank you, I did wonder if it was a reaction due to coming off the steroids because I had been on them for 6 weeks by then and that was my longest ever dose. I have been checked for sjorgrens with bloods and a lip biopsy to no avail but still struggle with dry mouth/eyes etc where I have specific gels and pastiles to help with it. Thank you for all that information I Will keep it in mind 😊 at the time the rash and swelling came down after going back on steroids but it seems to still be borderline as if its going to flare up again at any point so I'm keeping an eye. Thank you for your response 💕
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Swollen neck
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