I was diagnosed with Lupus nearly 3 years ago. (Ro and La positive) and have struggled with it ever since. I was finally weaned off predisalone in May this year after 2 years. Still on Plaquenil 400mg a day for the Lupus. (plus alot of other meds!!)
For a few months now though my hand pains have been worsening, my left wrist is so painful to the touch, swollen and when I wake up the first thing I feel is that I want to cry. My middle finger on my left hand (PIP joint I believe) is very swollen and purple and basically my hands are useless for anything except to cause me pain. I had my clinic appointment on 24th June and my rheumy said that the swelling and hand problems were of concern for him and that he didnt think Lupus was causing it. He took more tests and said he may have to think of putting me on a different medication to treat the hands.
A letter came yesterday and it had a new part under my diagnosis. Inflammatory Arthritis of the hands. I was gobsmacked, didn't really expect that. I had just thought that my worsening hand pains were just another Lupus thing. Not really sure how to deal with this new thing.
Rheumy has booked me in for a chest x-ray on Monday and results allowing, he will start me on methotrexate. I have heard lots of scary things about this drug and so was wondering if anyone here has any experience with it. Also does anyone else have a secondary diagnosis besides the Lupus? How do you deal with it? The Lupus has taken over my life since my diagnosis and now this new thing on top which is already disibilitating me around my daily life. I feel like my husband will get beyond fed up of all my mounting illnesses and just..leave.. :(
Im scared now that my hands will just continue to deteriorate and end up deformed.... I am scared that this will affect how well I can do things with my kids...
I just dont know how to deal with any of it and could be doing with a friendly ear. xx
Hi again Nikki! I answered some of the questions in the the other post but I will be a bit more specific here since you asked them directly.
1. Yes, once someone is diagnosed with an AI (auto immune ) disease it is very common for them to get "overlapping" diseases. Many of us have 2, 3 or even 4 of them. I wish I had better news
2. I am on MTX and have had no problems with it. I am sure that you have read about a higher incidence of cancer but that is very rare on the doses that we take (just like plaquenil and eye issues). One of the things you do need to watch with MTX is avoid pregnancy. MTX has been used as one of the "morning after pills" so it can cause problems with having another child.
I know how hard it is to be in a place where no one understands what you are feeling and going through. You are no longer alone. You are a member of our family now and we will support you in whatever way we can
Thanks for the reply, I am pleased that you havent had any problems with MTX, so far everyone I spoke to made it sound really scared with the need for monthly blood tests and constand x-rays etc etc.... Oh and no worries about pregnancy! Jeees the 3 I have are enough work for me!! lol
My husband tries to understand but obviously he will never fully know what it is like. Sometimes he gets frustrated with my being ill alot. I know he doesnt mean to but it does put alot of strain on us both as a couple. I get angry at him for not being more supportive etc, its a vicsious circle really.
Nixxie, I do hope the doc can get your inflamation under control for a good gap of time. I have osteo-arthritis in my pelvis, hips and shoulder. Even when i am not in a flair that can get pretty ouchie.My mom had arthritis of her wrist and hands badly, but she found a way to keep them moving and took nsaids. She managed for years as she held the grand babies. I am 53 and I stretch through the pain 3x a day and go walking daily when I am not horribly ill. I am fighting to prevent a joint from freezing up. Can you get physical therapy to keep joints moving? Just a thought.
i have fibromyalgia as well as lupus.
i also take methotrexate weekly.
as well as a few other drugs.
due to my daily and weekly drugs.......
my lupus is well under control.
my fibro is not.
go to my profile page and read a little about me.
talk to your rhuemy about anti inflamitory medication....
it helps me a lot.
I wouldn't panic just yet. Arthritis is a symptom of lupus. Inflammatory arthritis is pretty obvious really, you had terrible painful inflammation, hence inflammatory arthritis. You knew this before the doctor gave it a label : ) I also have a mild inflammatory arthritis cause by lupus. Wait to talk to your doctor about it, by the sound of it, the doctor has listed it because it is significant, where as mine is not ever mentioned, because it is insignificant.
I guess you deal with it much how you have been, nothing much will change now that it has a label.
It really does sound like you need something a bit stronger than the old plaquenil. Regarding medications and treatment... you always have a choice : ) And it is your choice alone. If you feel your symptoms are not worth the side effects, you have the right to refuse certain medications. As long as you are well informed of the risks of all your choices. But if your hands are so bad that you cant even use them... I cant imagine you refusing treatment.
Regarding the hubby... if he loves you, he will stay. Sometimes it really is hard for them to understand or even show interest. But truly, if he loves you, when it comes down to it, he will be there for you. You need to communicate with him, I find complimenting them gets their attention LOL Tell them how much you appreciate how they are handling your (and then list off your issues)... its the only time my partner pays enough attention to retain the information. Just remember, men are a tad bit self interested and sometimes they need to be reminded to be empathetic : )
Originally Posted by Nixxie
Sorry to hear how it's making you feel...i find it a total nightmare at times never knowing what one day to the next will bring.
Regarding you just being diagnosed with Inflammatory Arthritis, i'd strongley suggest asking about Raynauds because it was when you mentioned the purple issue and your middle finger, i've got the same on my right hand and besides my middle finger the next finger down i've told my dermo if they was chopped off i would'nt miss them one bit and my hands swell and my fingers are terrible.
Refering methotrexate i'm unable to help but my dermo wants me on it besides Dapsone tablets for my skin and the methotrexate to surpress my immune system regarding my SLE but my rheumo is sticking to the plaquenil he as me on.
Lupus can take over your life it's done it with me since i was 18 and now coming 43 with ailments which lupus can cause and was'nt diagnosed with Lupus till 3yrs ago, all because no furthur bloods was run.
Well if your husband loves and respects you then he should take your illnesses aboard also...because everyone comes across something in their lifes and needs somebody.
My heart goes out to you mate and all the worrying your doing...it's such a terrible issue to deal with at times.
Hugzzz Terry xxxx
Originally Posted by Nixxie
I was diagnosed with Lupus, RA and Fibro. My fingers and hands are by far worse than the rest of my body. Even though, I have pain in my hips, shoulders, neck and back, the hands and fingers are much worse.
My rheumy has put me on Methotrexade about 18 weeks ago, I inject once a week, and I am now feeling some relief, it is working. I wish I would have taken it sooner, because my fingers are already starting to be deformed, 4 fingers have nodules and start to be crooked, I can't close my hand into a fist, the fingers are to stiff. But my doc said the MTX is going to prevent further damage.
It sounds like your rheumy is on the right path, with your meds.
I hope your husband will start to understand your illness soon, he might need a little more time to get used to the idea.
Please keep we updated on how things go refering your hands and how you feel and i hope your day is a less pain free one.
Love Terry xxxx
Thanks so much for all the replies you are so very kind and helpful!!
On my left hand, I also cannot make a fist, due to the stiffness in my fingers. My left hand is much worse. Like you, although I get pain elsewhere, legs, feet, back, neck and also pelvis (I have an upslip of the sacro-illiac joint), my hands and fingers are much much worse. My ability to use them well has definately decreased, which is upsetting as I am an artist at heart and spend alot of time digital scrapbooking. Have started to struggle doing this now, I cannot use a mouse anymore at all. Too much pain.
Originally Posted by debbie-b
I had my chest x-ray yesterday and have an appointment on Friday at the nurses clinic to get started on MTX so all is heading in the right direction.