Could be Lupus or DILE - newly diagnosed and feeling devastated.

[Kathy1465]

Hi - I was diagnosed with RA five years ago. I fought using a biologic for three years before I finally gave in and started Humira. It has been amazing for my RA for two years now. However about two months ago I developed a photosensitive, nasty and burning rash on my face. Went to the dermatologist, who because of my RA ran Ana and ds-DNA tests. The Ana was negative however it has been positive in the past and the ds DNA was mildly positive. She gave me elidel cream, which was helpful, and sent me to my rheumy. He ran the labs again and both came back negative. He took me off Humira and put me on plaquinel. Two weeks after that he ran the labs again and they showed equivocal Ana and mild positive ds DNA. Go figure! I still have the rash which gets bad if I don't use the elidel cream daily. The rheumy said I could have drug induced lupus from the Humira or I could just have another autoimmune disease to go along with my ra which could be here to stay.

All my other labs (CBC, SED rate and CMP) are normal right now. I am grateful for that. I am feeling so upset about all of this. I have been doing so well for so long so I am having a hard time coping with this new diagnosis and possible lupus. I have wrapped my head around RA. But lupus has me very scared. I feel like the doctors are very reactive rather than proactive. Like I will just stay on Orencia for the RA and plaquenil until something bad turns up in my blood work. i have my normal ra pains and the rash. I do get bad migraines which have started to last days at a time around my period for the past year. I also had three episodes of vertigo like symptoms in the last few months.

I feel like I have been trying to manage my worries but today a coworker mentioned her mom having lupus and a long list of serious medical problems she has had since her diagnosis. So I found myself crying most of the way home from work tonight.

Sorry this is so long. I should also mention that I am going through a divorce right now and have two children that I had hoped I would be able to care for for many years to come. Now I just don't know what to think. Any advice or support would be much appreciated. I should also mention I live in the US.

Kathy

[Chris21]

Hi Kathy

Sounds like you have an awful lot going on in your life at the moment, have you any family or friends that are supportive?

Lupus, like many auto immune diseases and other illnesses can affect people In different ways. While some are very poorly others manage to live a normal life with just a few illness along the way.

This forum is brilliant for sounding out and advise. In the uk we have the lupus organisation which has some great leaflets and advice, there has to be one in the us that you could contact.

Have you been to your doctor recently? It might be worth a visit as it sounds like you have a lot of worries going on as well as your illness, which sometimes makes us feel worse.

Keep posting, we all listen to each other.

[Ouch123]

Awww bless ya , no wonder you are upset Hun with all that going on , I don't know nothing about lupus but with the rymatoid arthritis I was told by my doctor that now a days there is no need to become disabled now a days as the mess are sooooo good ,also you might want to go doctors and tell them about your divorce as stress can be bad and make symptoms worse and I don't know what you view is on antidepressants are but mine have worked wonders for me , and iv seen things a lot clearer and calmer , as you do seem to have more than your share of problems , what ever you do I wish you all the best Hun xx

[Kathy1465]

Thank you for you words of encouragement.

[Hidden]

Hi Kathy. I agree with Chris about this. As with RA - Lupus, Sjogrens, Scleroderma and Vasculitis all come in a huge spectrum of severity and there are many different presentations of Lupus too.

Personally I try to see this as one big rheumatic disease. Some symptoms arise or flourish as others die away. You are already on treatments for your RA so these will be dampening down your immune system and the Lupus may well just be a mild secondary that doesn't affect you half as badly as your RA has in the past. Especially likely if your sed rate is normal.

I was diagnosed with RA five years ago too. Mine was largely stamped out by MTX injections and Plaquenil plus two others. But I had to stop taking them because Plaquenil and Sulfasalazine both gave me severe skin rashes (I was also given Elidel). The dermatologist and rheum did not identify the Plaquenil as cause of this second severe facial rash for four or five months - but my GP suggested I stop it for a few days and the rash (mouth swelling too) immediately died down. He said this was a slow form of anaphylaxis caused by Plaquenil.

Now it transpires I was probably misdiagnosed with RA and actually have primary Sjogrens, which can present as non erosive RA. Like many others I used to think that Sjogrens only affects the eyes, mouth and privates - but mine is very systemic and is affecting my nerve fibres everywhere.

I was so horrified when I was first told I had RA, and learnt so much about it. Now I've had to do the same thing for another, much more misunderstood connective tissue disease, and it's very hard at times.

I felt like I, and others, knew so much about Rheumatoid Disease compared to what most people know about Sjogrens Disease - if they have ever heard of it that is. But I'm getting there slowly but surely with the help of people from this community.

There are plenty of people here who will support you and answer questions because many of us have a lot of overlap, same as you.

Take care and be extra kind to yourself while you are going through a divorce - it's a hell of a double whammy for you. Twitchy

[Paul_Howard Partner LUPUS UK]

Hi Kathy1465 ,

Anti-TNF treatments like Humira are unfortunately one of the most common causes of drug-induced lupus. How long ago did you stop taking it? Did your consultant give any suggestions about how long you may have to be off it before they can tell if it was drug-induced and is likely to go away, or whether you may have developed lupus as an overlap of your RA?

It sounds like you have a lot of stress to deal with at the moment, which is going to have a negative impact on your health. Do you have friends and family who are able to offer some additional support during this difficult time? It may be worth mentioning this to your doctor too so that they are aware and can possibly offer some additional help.

If you need more information about lupus, all of our publications can be read and downloaded at lupusuk.org.uk/publications/