Butterfly rash and long term issues

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

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

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.

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 😱

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,!

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.

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 thanks again for helping me through this rough time

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

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. 

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 

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!