Butterfly rash and long term issues

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After years of this ache and that ache early menopause, bilateral Achilles tendinitis, multiple neck surgeries serious back injuries, constant joint pain at one time or another, I was seen by my new primary care for a severe bad back which he thinks was caused by the flu overreacting and attacking my spine. He asked me if anybody has ever gotten to the bottom of the reason why I have all these troubles and I explained that I have had a positive ana in the past which Nick went negative, haven't worked up for anti d s n a r o and all those things that were negative. He told me that he still feels like I have some sort of anto immune disorder, as the markers are unreliable. I couldn't figure out why he felt so strongly about this but I realized that I do have a fairly strong rash right now going on and maybe he saw that and just didn't say anything about that. Is there a way to post the rash here so anyone could look at it? He put me on 40 mg of prednisone a day, for my severe back pain. I've read that you don't usually use Prednisone for normal osteoarthritis so he must feel pretty strongly about his suspicion. I feel very happy that I have a doctor who wants to get to the bottom of all my issues however I'm worried that I will be sent off to another rheumatologist who will disagree. In the meantime I'm in the middle of the flu season on high doses of Prednisone and he has prescribed two refills so I'm assuming he thinks I will be on this for a while. Wish I had some answers after all these years but not really wanting to go through testing again. If I could confirm that this rash is definitely suspicious at the same time as having joint flares I would feel more confident in his concerns. I know that most suffers from SLE I've had to go through similar situations in order to get diagnosed. There are also a number of other autoimmune illnesses this could be. I'm very thankful for any comments or suggestions on how to move forward or just bury it and give up . haha... I am a nanny for three families and want to be reliable for them but right now with this severe back I will be out for at least another week, and I am concerned about my long-term health and being reliable enough. I am 54, mother of three grown but still need kids, Nanny of three other families where I overdo things a lot, I have 15 very well cared for cats, and have worn myself down to the point of complete exhaustion and possibly a flare. Thanks any much for any help or advice that can be offered! Wishing you all the best in your Journeys. If there is a way for me to post a pic here can you please advise? It looks so classic to me that I can't really figure that anybody would say it's not

, but maybe I'm way off. smile (Probably just looking for some validation, keep thinking maybe I'm just overheated but the pattern on there, being on the nose and not the forehead or upper lip at all, doesn't seem like something that would happen. Thanks again

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  • Posted

    Hi Anne. I feel your frustration.  It took 3 years for my SLE diagnosis. I was in so much pain, couldn't get out of bed with it some days, and the fatigue was unreal. My rheumatologist at the time said I was showing all the signs of RA, but my bloods came back negative time and time again apart from a raised ESR. I was also having terrible bowel problems and was referred to a gastroenterologist. It was my gastroenterologist who was running my bloods regularly, every 2 weeks, when I eventually got a positive ANA and a positive anti dsDNA blood result along with a very high platelet count etc etc. Along with my many, many symptoms and blood results, I was eventually diagnosed with SLE. I don't get the marlar rash on my face or upper body, but on my scalp, and when active causes a burning sensation and irritation, and my hair falls out. I know doctors are reluctant to give an SLE diagnosis without both positive bloods and symptoms. I went years with negative blood results, but all the symptoms, I have also still had negative blood results following strong positive blood results. It always seems hit and miss. Lupus is a great mimic of many other illnesses which makes it hard to diagnose. You definitely need to get to the bottom of this, for your own sanity. You know something is going drastically wrong in you body. I'd get your doctor to run more blood tests to include another ANA test, but also an anti dsDNA, CRP, vit D etc. Your life is so busy, I don't know how you cope. My bad days overtook my good days quite a while ago, and it's a daily battle to do 'normal' everyday tasks. Take care of yourself and rest as much as possible, good luck!

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    • Posted

      Thank you very much for your reply and sharing your story. It is very interesting to hear how your blood work did it eventually show the evidence of SLE. It does confirm what my doctor said about the markers not being reliable enough. I actually would be happy enough if he would treat me on the basis of suspicion and not have a diagnosis based on the fact that the outcome is still the same, if my overall health improves. My sister is very opposed to me being on prednisone. So that is where my conflict lies. I truly appreciate your support and wish you also the very best and healing and pain relief. I'm so sorry that this has impacted your life to such a degree. Do you mind me asking if you do take prednisone or other medications and what has worked and not worked?

      Thanks again!

      Annie

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    • Posted

      Hi Anne. I've had periods of remission since my diagnosis. Although I will say the joint pain has been a constant to some extent. My chronic fatigue gets me down a lot, to the point I struggle to get out of bed some days. I have trouble with my eyesight and feel like I haven't got my glasses on, but I have, if you know what I mean. I have taken Prednisilone In the past but the dreaded weight gain gets me down, and the additional weight impacts on my joint pain. Catch 22 I guess.  At the moment I take: Co-Codamol, Tramadol, Pregabalin (for nerve pain). My migraine headaches have increased tenfold (another symptom of lupus). For this I have Imigran Nasal Spray. I also suffer with severe reflux (another ailment we lupies suffer with), for this I take Ranitidine (Zantac). I also suffer with bowel problems which can also go hand in hand with lupus. I got a very severe ear infection last May which caused a massive flare, one which I have not really recovered from. If you're coping with your life, and you feel your Prednisone are helping you do so, then I'd continue with them. If you're on Facebook, there are some great groups all about lupus, and you can get a great deal of information from them! Take care

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    • Posted

      Yep I've got all of the gastrointestinal stuff to I had a lower case of ulcerative colitis if you know what I mean for about 6 months 10 years ago it was terrible. I also have severe GERD and get the stomach flu constantly more than anybody else in my house. Also have migraines with aura, and when I get a headache they are very short headaches that feel like somebody is hitting me in the head with a board multiple times and then they go away, but devastating and scary. I guess those are probably cluster headaches. They just come from out of the blue and feel like my head is going to explode and immediately go away. Thanks again I'll look up the Facebook stuff I appreciate all your advice. smile

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    • Posted

      Hi Anne. Yes it's a daily battle and certainly no fun. Yes, look up the Facebook groups. I found out from there, that a lot of the other things I get are lupus related. I thought it was just 'sickly ole me'. They give you lots of help and support, even if it's just to rant about things! I've suffered with ulcers that are like craters, not the normal small ones other people get. I found out that many others suffer the same, and some get them in their nose too, ouch. My doctor is now querying Behcets Disease too. Never ending. Do what you can, when you can, but try and rest as much as possible, but looking at your busy life, the rests may be few and far between 😱

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    • Posted

      I Stephanie thank you for the advice I have been on some of the Facebook pages and that has been very helpful! I had to take two weeks off of work so I have been catching up on meth because I was basically unable to move and I'm hoping that the rest is enough to put out the flare along with the prednisone the I am on. I also came down with a severe case of vertigo. Not sure if that is a symptom of lupus but just one my back was getting better the vertigo set in and I feel like I'm a leave blowing in the wind. I've had Improvement over the last few days though so I'm hoping that with my back and proving and the vertigo that I'm over the hump for now. Thank you so much for your encouragement I hope that you are well,!

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    • Posted

      Hi Anne. I'm pleased you're feeling a little better. I do suffer with light headedness and dizzy spells. I stagger around as if drunk some days, and I don't drink. The FB support groups will help you immensely. You'll learn of what people suffer with, all of which is related to lupus. You'll stop feeling like you're going mad because of all the different illnesses/symptoms you experience, and realise you're not on your own, and it's the illness. My family and friend's look at me as if I'm crazy when I tell them all that's wrong with me, and how I'm feeling. They just can't get their heads around it. Look after yourself, and continue to rest as much as possible.

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      Thank you Stephanie. Would you mind sharing what sort of diagnostic criteria your doctor used to diagnose you? It's interesting to see what different doctors have philosophy are as far as diagnostic criteria because there seems to be such a broad variation in doctors opinions. I am hearing stories of people having protein in their urine and high a n a s, malar rash and still not being diagnosed. It's always encouraging to hear stories of doctors who did diagnose under reasonable conditions smile thanks again for helping me through this rough time smile

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      Oh I'm sorry Stephanie I just realized that you are the one who told me that your doctor was running the test every two weeks and that was very very helpful information. That is actually one of the things that gave me hope that there are doctors who really really try. Thank you for all of this valuable information is giving me hope to continue pursuing answers. Sorry about repeating my question that you have already answered haha. I hope you have some good days and I'm sorry for all that you have endured! Thank you from the bottom of my heart for taking the time to explain all that you have been through! Wishing you Wellness!

      Annie

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    • Posted

      Haha Anne, no worries. It was my gastroenterologist running the blood tests and not my Rheumy by the way.  My rheumy was just running the tests when I saw him every 3 months. I had a severely inflamed bowel, with query ulcerative colitis. I'm in the UK and have a brilliant NHS, but I was seeing the gastroenterologist privately.  I don't know where you live. I know many doctors wouldn't run bloods so regularly but, because I was paying (mainly because of how poorly I felt, and was), I wanted answers, and quickly, I think because lupus can be so 'hit and miss' with regards to blood tests, this is probably the best way of catching it. I was originally just diagnosed with 'chronic inflammatory joint disease'  as they couldn't label my symptoms.  It's a long road, so be prepared for that. Look after yourself. 

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      Wow, sounds exactly like me. I have an appointment with primary care doc tomorrow. I am going to be showing him a pic of a pretty convincing butterfly rash, so Im hoping that going to give me some credibility. Hes already on board all the way, but I just fear that a rheumy will differ and then im back to chronic inflammatory. Either way, the lesson is I will need to start taking better care of my body and not disregard alot of things. I actually had ulceratice colitis, for only about 6 months 20 years ago, and thankfully have never had another flare. There is no record of it though, because it happened so long ago, so that makes it hard.

      Thanks so much for all the tips. It is very encouraging to meet so many positive, courageous people, regardless of what my outcome is, the lessons Im learning are all about dealing with chronic pain and persevering. (And being patient) 

      Thank you for everything! Wishing you wellness!

      Annie 

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    • Posted

      Wow too. It's amazing what you learn speaking to people. Makes you wonder how many are out there with 'Chronic Inflammatory Joint Disease' because they can't diagnose SLE. I don't have the butterfly rash on my face or upper body, but get it on my scalp. When active it burns and irritates and my hair falls out and thins. Luckily I've no bald patches!

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