Hi there, I was advised to join this group because I have questions and concerns and looking for other people’s advice/options.
I got diagnosed with skin lupus 3-4 years ago but last year after further tests they said it is SLE. I have been taking Hydroxychloroquine sulfate for joint pain for 6 months and new symptoms have developed and I have now to consider Azathirprine and a steroid injection. I am very worried to introduce other medication mostly due to Covid but also I have my 2 year old grandson living with me and all his childhood illnesses that he will no doubt get.
I think I have had my head in the sand a bit and make excuses for pains or symptoms and tend not to link them with lupus. I have even considered asking for my test to be redone in hope they got it wrong. I really don’t want to sound like a drama queen or a difficult person so looking for other people’s views.
Thank you in advance for any advice.
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NannyDonna
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welcome to the group.youve got to get your head out of the sand I'm afraid.lupus affects organs with connective tissue so heart,lungs,brain and kidneys.lupus treatment isn't just about the aches and pains you've got today its about protecting and preserving organs for the future.I take hydroxchloroquine and mycophenolate. I did try azathioprine but it didn't work for me it made me quite poorly as I developed drug induce hepatitis .it's a case of trial and error until they find the right drugs combination for you.even before covid i had to stay away from anyone inc my children and grandchildren with colds,flu and stomach bugs so social distancing for me was a doddle !
Google the spoon theory and educate yourself. Learn to pace yourself and stick to your boundries.stay out of the sun as hydroxy can cause photosensitivty .Wear hat,sunglasses,factor 50 and clothes head to toe all year.eye tests every year too.
We've all been there and it's all manageable with compromise and adaptions if you accept it and face it head on .xx
Thank you for the reply. Not exactly what I wanted to hear/read but I do know I will have to start to face it. The spoon theory is very interesting as that is exactly how it sometimes feels, though not so extreme. I can relate to that for every day life. I have been so frustrated with myself as I am a bit of a workaholic but I now find myself in bed by 8pm.
I can see why my doctor has been asking me to join here. I must be frustrating the life out of her. She did say you guys would be very honest and let me know how it really is.
Sorry its not what you want to hear. We are very honest in this group as there is no point telling you anything other then how it is .60% of lupies have kidney involvement most without knowing.many of us develop sjogrens secondary to lupus which affects moist areas like the eyes and mouth and if you have1 AI illness there is a good chance you have others as many go hand in hand.the sooner all these are treated the better.i have lung issues,my heart was inflamed in 2014, class v lupus nephritis,thyroid, b12 defiency sjogrens and episcleritis so there is alot that left untreated can make you very poorly x
I appreciate your honesty and sharing so much about your situation. I have not told my family yet. They know I have an illness but I have said it is no big deal. I guess I will need to think about telling them soon. I had never heard of lupus before this and decided not to google it as google is not always a good idea.
No you are right there lol .there is plenty of excellent info on this site.John Hopkins University lupus Centre is good too.there is alot of ignorance around lupus and the more we talk about it the more understanding we hopefully will get.i hope you are able to share it with your family as you will need their help and support at some point especially if you get side effects from meds .it's a chronic life long illness so flares and bad spells are inevitable. X
Yeah I am seeing that now. I am not very good at asking or taking help. I am the helper and the strong one in the family. Thanks again for listening (so to speak). It is now clear that not taking the medication is foolish. X
Neither was I.my OH died in 09 in an rta leaving me the breadwinner with children to bring up.then I became seriously ill after pleurisy lead to lung issues which put me into heart failure all now though to be lupus related.im still fiercely independent but now recognise when I need support . there is help available so please don't struggle with any aspect of our illness. Taking help will lead to a better quality of life long term . Good night sleep well xxx
Welcome to the group NannyDonna. Im undiagnosed but had an autoimmune screen done because of skin problems. They came back abnormal and my gp its likely I have cutaneous lupus which can progress to SLE, my results also suggest sjogrens although as yet I dont have symptoms for that. I joined about 2-3 weeks ago. I've found the people on this site really friendly, supportive and helpful. I've learnt so much.
Thank you. It is going to take a bit of getting used to chatting about fears and concerns to strangers but i am sure it is going to be a good support and already informative.
Welcome NannyDonna. This is a great place for questions and advice. Spaniel gave you a lot of good tips.
A lot of us have a go with denial on initial diagnosis. No one wants to hear or believe that they have this horrid illness. Give yourself grace and time to let things sink in and take care of yourself best as possible. Don’t fret too much about the what ifs right now. Do what you need to do to feel better.
Firstly, It can be very difficult to get to the point of acceptance. Well done for taking the first step by joining this community. 👏
Talking to your family and friends about Lupus is very important. Together you can educate yourselves about the ups and downs and this in turn will support you on your journey both for you and them.
The medication is a very individual thing. I was diagnosed Spring this year and have already found I am allergic to Mycophenolate and Methotrexate. Hydroxichloriquin has also caused an allergic reaction with rash all over my body, severe itxhing and facial swelling. I am currently receiving biologic infusions as my muscles are attacking themselves (myositis). I am waiting for a heart MRI as there is cardiac involvement.
Previously, I enjoyed running, swimming, walking and horse riding to name but a few. I have now been told to stick to walking until they get the situation controlled.
Talking to my family and friends and learning together about Lupus has really helped me keep positive.
If I get any changes I contact my rheumatology department and tell them. They have been a great support.
Please use all the resources available. You will find it helps even if it can be a little daunting.
As someone who already has a haematology illness I had to shield. I understand how difficult it must be for you worrying about passing/catching illnesses from anyone. My two young adults live with me. I take extra precautions with hand washing and keep a watered down bleach spray in bathrooms and kitchen. A quick spray only takes a second to help keep the germs at bay.
I wish you all the best and hope you will find information on this site useful.
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