recently diagnosed and confused?!

Im still trying to get my head around this condition, along with sjogrens (still can't pronounce it!)and Raynauds. It all came to light after a recent attack of pancreatitis, (Gall bladder n stones removed nine years ago) they didn't understand what had caused it this time, until extensive blood test came back positive for lupus. Two questions if you can help please.

I cant shake of chest infection and have had a course of antibiotics which are great for clearing infection but have been told by chest consultant doxycycline is not good for lupus as can cause a 'flare' whats a flare?? is it the cause of sudden aches and pains in arm and knee?

second question; does anyone know if steriod inhaler will cause problems for lupus/sjogrens/raynauds. I know i could ask the consultant, who so far seems great but he wants to take each problem one at a time and the one that he wants to deal with first is lymph nodes (possible growth) I know this is the more serious/urgent one but I'm fed up with coughing and bunged up nose!

Incidently looking back, I think I've probably had these conditions for at least six years and no one had picked up on it, which seems to be the norm.

I'm glad I've found this organisation as it has helped me understand these stupid conditions.

21 Replies

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  • Hi Chris Hang in there. It takes a while to come to terms with Lupus and its other added illnesses. I`ve had Lupus ,raynauds, mixed connective for 21 years, but I can still recall those early days. I only wish we`d had internet and blog sites then, what a difference it would have made. Oh i believe you pronounce it `shergrens.` Sjogrens. It sounds exotic doesnt it but a real pain in the a***. I get the dry mouth caper with Lambert eaton disease which i was diagnosed with oct 2011. so I sip water all thru the day and keep a bottle (water that is) haha by my bed at night as sometimnes I awake with my tongue stuck to the roof of my mouth.Oh the joys of being a Lupie eh. You ask whats a flare.. Good question. For me it used to be when my body would tell me I needed a rest. My joints would swell, I would ache all over and sometimes be covered in rashes.However once I got it all under control with the medication and started to look at my lifestyle and change it for the better. eg exercise,and relaxation, fresh air and eating healthyily I got to the stage where I didnt have any more flares. I even took up running to combat the steroids and hey low and behold I came off all meds. So dont let it all get you down we are all in this together and will help each other thru the bad times. keep smiling Big Hug from me x

  • Thanks for your help. you've sort of confirmed that what I thought was 'old age' creeping on is probably flares. None so far haven't been anything I cant handle. I must admit i did panic slightly when the consultant put me on hydrochloroquine and is now talking an extra drug for Raynaulds. I hate to take pills unless really necessary. from what you say, who knows maybe I wont have to keep taking them :) Hugs back

  • Hi Chris & welcome. I'm sure you will find this site invaluable as you learn about your illnesses, & make some good friends into the bargain.

    I agree with lemonface, you need to listen to your body & take good care of yourself. A flare is a worsening of symptoms, which can be hard to recognize at first, because you may be in one constant flare until your meds start to work. Increased fatigue, joint pain, mouth ulcers & skin rashes are probably the most common ones. But as you will read, everyone's lupus can be different.

    Regarding the steroid inhaler, it can dry out your mouth, which is not good with Sjogren's. I think standard advice is to rinse with water afterwards so the residue is not left in your mouth. But it's a long time since I used my inhaler (touch wood) so you should check this with your GP or practice nurse to be sure.

    very best wishes. X

  • Mmm, I wondered if the inhaler hadn't helped. I was diagnosed with asthma because no one could come up with why I had difficulty breathing. I knew I didn't have asthma but got fed up arguing. I haven't used them in a while, just wondered if they're likely to put me back on them now they know it is lupus affecting the lungs.

    I'm not sure if you can see the reply i did to lemonface? but as suspected what I thought was old age creeping on, I now know it was probably flares :)

    I think I might buy shares in a moisturising company as I have a feeling I'm going to be using quite a bit for a while!

    Thanks for your info, it has helped and I will definately be looking for lots more advise :) x

  • Do you have high Triglycerides? What caused the pancreatitus?

  • Not sure what Triglycerides is? I have a long list of blood results some strongly positive while others thankfully normal. Still in the dark as to why i had pancreatitis again. Rheumy says unlikely lupus caused it but no other explanation. I was checked to see if any stones were lurking, none found and I don't drink, which are the two common factors. Just another of lives little mysteries :)

  • Just googled triglycerides, good old google! The bad fat is low and the good fat was high. Can't remember the numbers now. When I had my spell in hospital I made sure that was one test they did, to check chlorestoral levels.

  • First diagnosed 12 years ago very confusing found that the research on the net helpful I know how your feeling you will get your head round it eventually ones I most visit are Lupus Uk and St Thomas hospital site there is an on line nurse you can ask questions there takes a few days to answer but well worth a visit it helped me a lot or ask a way here we can all help. just coming out of the most horrendous flare since Nov exhaustion joint pain dry eyes mouth chest lung infection The Rash unbearable all my back chest midriff arms and legs I just existed right through christmas and new year still recovering GP gave me Doxycycline three times last year till I researched it asked them to flag me up on their computer which fair do they agreed to do on steroids now appointment with rheumy and dermatologist in Feb watch this space!!!! there are a number of anti biotics that can affect lupies so research it lots and lots have found coconut water helps me with the dry mouth may not help everyone but worth a go has anyone out there researched diet for foods that enhance body inflammation im just having a go finding it interesting but unsure as its a life changing thing to do

    the j in sjogrens pronounced shrogens as far as I am aware : )

  • Thank you. This is really useful as it almost sounds like me! My rash comes and goes but am left with intense itching. Thankfully my family came for christmas and all helped with cooking etc, for once it was me who flaked out fast asleep. At the moment I'm seeing the rheumy every 3 weeks and still having scans bloods and treatments until all ailments settle down, which it seems to being doing gradually.

    Hope all goes well for Feb appt, Good luck x

  • Hi Thenomad So sorry you have been so unwell over Xmas I do hope that you are taking plenty rest to get back on track I don't know if this will help but When I was first diagnosed 20odd yrs ago I did a detox diet Why I'm not sure now but the first thing that I found upset me was porridge oats my pain would go through the roof and I became so stiff With this eye opener I continued slowly introducing foods into my diet to find my known triggers Some foods caused pain others rashes and itch some brought on the flu like symptoms The other benefit was I lost weight though I was not overweight to start with It has made me keep a check on my weight which ultimately reduces any strain on the joints Another big no no for me is MSG also mung beans so Chinese food is not top of my list Some foods I can tolerate in small quantities like tomatoes which I love I will have maybe one cherry tomato twice a week but never tomato soup It is a painstaking way to go but worth it in the end I'm sure it helped me continue though I did get wheelchair bound for a bit . Three years ago I took an allergy to virtually all foods even my medicines that had certain things in them my face used to swell up like Madge out of the Simpsons not funny as my Husband had a lot of social events I had to attend to .For me it was Salicylates Amines Benzoates and Dairy so again I needed to survive on green grapes and lots of water as I also have dry eyes mouth etc So after all this I say try finding out your triggers as although it will not rid you completely of pain and other issues Every little helps Hope you star to feel better soon and I would be interested to know how you get on PS I am just trying a daily dose of Vit D as on the steroids seemingly it helps but on this site it was recommended to take a really high dose which will help the skin and fatigue so I will keep you all posted on that All the best Hugs

  • This is interesting! I keep asking if my diet has/had anything to do with the pains in my stomach and triggered the pancreatitis, but the consultants keep saying no, it doesn't. I think I will start a diary of what I'm eating and see if it does make a difference.

    Will look forward to hearing if vit D helps :) x

  • Hi Thenomad, I was given doxycycline in august and the contra indications say do not use if you have LUPUS. I wish I had read that first. My face, mouth and throat swelled up - thought I was going to stop breathing - obviously not for me. I am glad to hear some people can take it. It just caused a massive flare which ended up with me in hospital ( Im still not right)

    Reading the above advice has given me some tips for my health too, so thank you everyone!!

    Hope you feel better soon

    xx

  • Hi Chris 21, on the subject of inhalers for asthma, over the past 20 years I have been prescribed every inhaler inder the sun for asthma, none of which made the slightest difference to my symptoms (constant violent cough). Over a year ago the asthma nurse did a lung function test which gave me a 'lung age' of 75 (I'm 20 years younger than that). I was referred to a rheumatologist last year because of joint pain and swelling (suspected rheumatoid arthritis because of elevated rheumatoid factor in the blood but no evident infection to explain it). Rheumie put me on Plaquenil. It took a few months to kick in but some of my many symptoms have now improved including the mouth ulcers, face rash and, wonder of wonders, the awful lung problems - not gone away but significantly less severe. I have had a vague 'diagnosis' of undifferentiated autoimmune disease - could be Lupus, rheumatoid arthritis, any of the other conditions or the early stages of more than one of the autoimmune diseases. As you said, looking back I realise I have had these symptoms for many years and have put it down to getting older. I think dealing with the symptoms one by one is the only way with this complex disease. I would also like to emphasise what lemonface has said, eating healthily and exercising within your capabilities helps enormously. As for having a flare, everyone experiences these differently as you will discover from the posts on this site. My flares start with eye problems (either uveitis or copious amounts of discharge, itching and redness). Other symptoms such as inflamed joints are always there but more severe in a flare. Good luck.

  • Thank you for the info. It's all slowly starting to make sense and helps hearing very similar stories. I had already started to change my lifestyle until the recent bout of pancreatitis but am starting to work onit all again :)

    This site is great and everyone seems very kind with helpful tips.

    Long may we all continue to share and get better :D x

  • It's interesting to read how we're all using trial and error. It's particularly tough because we are affected in different ways. I agree with what's been said already but I would say that food allergies seem to be a personal thing.

    I have porridge (organic if poss) every day and have not had a problem with it but I'm aware that it contains some gluten (not as much as wheat) and this be difficult for some. There is a history of coeliac disease (can't tolerate gluten) in my family anyway. For this reason I try to balance my diet so that I eat rice instead of pasta sometimes, for example. Recipe books for arthritis say to exclude things like tomatoes but I feel OK after eating them. Alfalfa is also on the list to avoid, which is a shame as I thought it was a superfood.

    I would say that the easiest way to start looking at your diet is to exclude as many processed foods as possible - I totally agree with removing Benzoates but I also avoid anything artificial or chemical if I can. I'd rather have a little sugar than low-cal sweeteners. Make as much as you can from scratch. I'm OK with dairy but I do switch to non-dairy milk from time to time and buy non-dairy spreads (like Pure and Flora). Although I do have a little butter sometimes. I've had various reactions to face creams etc, even though I'm careful what I buy. I once had a full skin test at hospital where they cover your back in lots of tiny samples. One of my reactions was to the preservative used in mascara - so found the reason for sore eyes even though I was later told I had Sjorgrens. I do use mascara sometimes but only on the ends of my lashes and buy a good make-up remover.

    Regarding drugs, I was lucky to only need Plaquenil for Lupus (for about 20 years) and gradually weaned myself off as my symptoms got better as I approached middle age. However, I'm more aware of the Sjorgrens now and have a few aches and pains that I'm reluctant to put down to old age. Can't get a referral back to the Lupus Unit right now. Have been getting a irritable cough that I can't shift. It was at it's worse before Christmas after a bout of flu (?) and ended up at the hospital where I was given a steroid inhaler. I've never had asthma so never had any sort of inhaler before (I'm in my 50s). It was a brown (preventative) Clenil Modulite 100mcg CFC free inhaler. I had to take two puffs, 4x a day. It was brilliant. If I can get an appointment with my GP (it takes a month) I'll have to ask more about this as my pharmacist was surprised I didn't have a blue inhaler too.

    I was advised to rinse my mouth out after inhaling to prevent thrush. I seemed to avoid this but my pharmacist said it was common with inhaler use and I could get an special mouthwash if I ever needed it.

  • Hi Chris, my story similar to everyone else. Lupus was undiagnosed for 5 years and all the while was happily damaging my lungs. Constant chest infections were the key, I would have for them so regularly, and no amount of antibiotics would help. After very nasty period of ill health which led to me being hospitalized and then house bound for a number of months the rheumatologist diagnosed Lupus and i was put on a concoction of medication which made me even worse in the short term. Thankfully when it kicked in it helped to calm my immune system down a little and I now do the best that I can within my limitations. I have a number of problems with my lungs and so suffer breathing difficulties, associated fybromyalgia (not sure if that's how you spell it lol) muscular pain and joint pain. I exercise when I am able to but like I say, I have to be realistic, otherwise I run the risk of making myself more poorly.

    The medication I am on is Mycophenolate, Hydroxychloroquine and prednisolone (maintenance dose 4mg, in case of mild flare 10mg and in serious flare a short term dose 30m), complicated I know, but being able to self medicate means i can head off a flare at the very first indicator. This does not stop the flare but i am sure that it has prevented them becoming more serious on a number of occasions.

    My flares usually indicated by a raise in temperature, increasing pain and inflammation, utter lethargy, headaches, and then the more random things like terrible itching but no apparent rash (this is awful), lung pain or chronic ibs... the list goes on!

    I really hope you get sorted soon :)

  • Your lymph gland symptoms will be part of lupus,ive sufferd ten yrs of lymph issues ,its the body reaction to an immune response ,the fact that you have a heavy infection will put more strain on them.a flare is absolute exacerbation of all symptoms and more ,ive been in a flare for 12 month so if theres any chance of you devloping one cos of antibiotics ,change as you wouldnt want this,i wish you well ,brave

  • I have Lupus and Sjogrens ( 10 yrs) I also have asthma when I have a cold or in cold weather. I find if you rinse out your mouth well you should be ok.with inhalers. Eye drops for Sjogrens from GP for itchy eyes and I use E45 shower and bath oil for itchy skin. Also Neutrogina do a v good skin cream in a big tub, reasonable price and lasts and is non perfumed (Boots)

    Doxycycline caused a flare and swollen mouth and tongue with me too. Allergic reactions to antibiotics are a problem for Lupus sufferers. Hope you are feeling better soon.

    The St Thomas's Hospital site is great for help in understanding Lupus also the Arthritis site

    and of course LupusUK.

  • Thanks for all the advice,seems like walking through a mine field!!! :)

  • Thanks for comments never been keen on blogs in the past but this is great help. Had a dangerous vitamin D level two years ago was put on 50,000 a week to bring it back up had tough time with GP for prescription rheumy prescribed it doc had to obtain permission off his board to give it probably cos expensive. I now take 5,000 alternate days which seems to help

    Chris I found steroid cream Elcon mometasome and double base gel (Got this one on the net ) helped with the itching and burning caused by the rash. A flare with me starts with unbelievable fevers I can sometimes wakened up as tho I've stepped out the shower!!

    Anyone heard of the paleo diet ???? have looked and digested it an sounds interesting may go down that road. Do give coconut water a try for dry mouth tesco wait rose sell it its helped me hopefully others too.

    Thanks to all speak soon

    Thenomadxx

  • Hi Chris,

    Have you had one of our free information packs? If you haven't and you'd like one, please send me a private message or email paul@lupusuk.org.uk with your name and address and I'll send one out for you. You may find it helpful.

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