This is driving me insane! After a year on Humira, I welcomed LLS. Following biopsies, the dermatologist was ready to break the news of Lupus, when I reminded him of the side effect from Humira. LLS ended up as his diagnosis. The doc says I do not own the disease, only the symptoms. ARGH! This hurts! Haven't found a med without this side effect. The disease is already depressing. Now not only my joints hurt, but the skin and muscles too! And I have to stay indoors. My skin is also reacting to flourescent light. I find myself covered from head-to-toes in all buildings except my home, even in the hot summers of Florida. Help, anyone.
Gelita, I am not sure what LLS is and will do some research. Can you explain some of the skin symptoms?
These infusions to treat PsA carry a side effect of "Lupus-Like Syndrome". Check all the literature your pharmacy and the Pharmaceutical Companies information packets send you. It is a rare side effect, but not fun to have. It is like having Lupus. Sun and light affect your skin (photo sentitive), you break out, itch like crazy, your skin and muscles sting and hurt. My dermatologist is a well known and the top doc in the State of Florida, and he says he has taught about it, warned about it for many years, and I was his very first patient with it. (He kept bringing his Fellow students to see and feel my skin during appointments)
It is like Lupus, because while I am in any of the PsA medications, I will have it. If I do not take any, the syndrome no longer bothers me, although I keep the scars the rash leaves behind. Any part of the skin exposed to the sun is scarred, while the rest of the skin is normal.
So, now my joints hurt, but also my muscles and skin. The only relief is ice. At night, I make myself a bed of ice bags to be able to sleep.
I've also read that mtx can also cause LLS. Sorry for your troubles. I hope you find some relief.
Gelita, thank you for the explanation. I have skin issues other than psoriasis (vitiligo; sun sensativity; rosacea) the sun makes me itch and sting on my arms (I felt better when we were up north and not so close to the sun as we are in FL). I am sorry you are so miserable with this and hope they will be able to find something that can give you relief.
I also have Rosacea, plus Ocular Rosacea, which prevents me from seeing some days. One of the things I am learning from this online support group is that it happens to be common to PsA patients to own other conditions besides the PsA itself.
Luckily, I see Dr. Fenske at the University of South Florida who is very knowledgeable. An employee of the USF told me he was the best paid dermatologist in the State of Florida. He writes columns on newspapers and magazines answering dermatology questions. He runs not only the department at USF, but also the Fellowships. He keeps me and my Rheum doctor on our toes. They are partners in research in Psoriasis and PsA. And yes, I'd love to go to the beach someday with the family and enjoy a day in the sun! O, well....
DMaraJade said:
I've also read that mtx can also cause LLS. Sorry for your troubles. I hope you find some relief.
I know. Most medications carry that posibility. Something I have to live with.
Sounds like you have some great docs in your corner. I am glad to hear that and wish I was closer. I like my docs but I also know they don't seem to be on the cutting edge either.
I've been scouring the internet for any information about people who have gotten lupus like syndrome from Humira. I started on Humira last summer, and in March started getting lupus symptoms (no face rash, but I have the chest pains and swollen, painful joints all over). I stopped taking Humira mid April (took that long to see a rheumatologist about it), and I still have bad symptoms. Did you stop taking Humira? If so, how long did it take for your symptoms to go away? I've been on prednisone and it helps, but it doesn't make it completely better. I've read a lot of forums and for some reason everybody is talking about getting the symptoms but nobody logs in after they end to say that the lupus is gone... does anybody know how long these symptoms will last?
P.S. I don't have psoriatic arthritis, but I do have psoriasis which is why I started taking Humira. 12 year sufferer!
I don't have Psoriasis, but PsA. My skin showed a bad rash, itched, and it felt as if "the sun was charbroiling my skin". I went to a Derm. He opened his eyes wide and said he needed to do a biopsy, which turned out being 5. His diagnosis was Lupus, but secondary to PsA. He called my Rheumy and he gave me an appointment. Rheumy's diagnosis was Lupus-Like-Syndrome, or Lupus of the skin. He IMMEDIATELY stopped the Humira and changed my biological to Enbrel, which is the mildest of the group, as he explained. All of these biologicals activate the LLS. After a couple of years dealing with it, I am learning how to live with LLS. It is not easy, but as in everything in else in life, We adapt after accepting it.
I have to have a biological. LLS comes along with it. No way out. I have noticed though, that it feels lonely at my corner. LLS seems to be rare.
Now, even when I have stopped Enbrel, I am still photosensitive at a lesser degree. As soon as I go back to it, it is full bloom.
I was on Humira from late September through October last year. Lots of side effects- rashes, nosebleeds, but most prominent was a pronounced malar rash. (I have had a malar rash for years that comes and goes. The only doctor who had ever seen it is my endocrinologist, who was quite concerned.) The rash from the Humira was bad enough that a friend who is in her late 80s and is legally blind asked about it. It finally faded in March or so. That time of year I couldn't really tell whether or not my photosensitivity was increased. My rheumy stopped the Humira immediately, but did not diagnose LLS. She recommended a consult with a dermatologist, but was unable to find any that took new patients AND insurance. I guess there's too much money in Botox injections to make it worth practicing medicine anymore.
You made me laugh! Yet, it's sad. Also, there is an outbreak of skin cancer that keeps them busy.
My rash came after months (over a year) of using the product. My uncle is a physician (Internal Medicine) and says it is not Lupus but Skin Lupus. It is supposed to go away when you stop the meds, but mine only improved.
I had to notify the FDA about the reactions I got from Humira. Have you? Call Humira (You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call ) I got this from the Humira web site. I called my insurance and they connected me straight to the FDA saying it was very important that I talked to them.
I have heard that "sun therapy" helps Psoriasis. (yikes!)
I did talk to the FDA. A few months after I quit taking Humira their patient support people decided to start calling me every few days to see how I was doing. Day late and a dollar short, as usual! They put me in touch with the FDA. I agree with you that it is important to notify the FDA about side effects.
=)
Figured I should follow up if anybody else is looking for information on lupus-like syndrome. I had been lowering how much prednisone I was on and am now completely off it.... because I started on methotrexate almost 3 weeks ago... because my rheumatologist now thinks I have psoriatic arthritis. She does think I had the lupus-like syndrome (lasted about 6 months) but that it is gone and now I have arthritis. Guess I chose a good forum to join, huh? My mom has rheumatoid so i'm not surprised or anything, but I'm only 31 years old and not happy to have this added to my problems. We're trying methotrexate for now because I'm scared to try Enbrel after what happened on Humira. Some of the scaly patches are coming back now, too. Yay....
Jessticles, I am on Methotrexate and it has almost completely cleared up my psoriasis. I am currently injecting 25mg MTX weekly along with Sulfasalizine. I hope to switch to Enbrel as it seems the biologics are the only meds so far that stop the damage of this disease. Sorry to hear you had issues with Humira. My PSA started in my late 20's, diagnosed early 30's and now 41. Hope you have success with the MTX :-)
Jessticles said:
Figured I should follow up if anybody else is looking for information on lupus-like syndrome. I had been lowering how much prednisone I was on and am now completely off it.... because I started on methotrexate almost 3 weeks ago... because my rheumatologist now thinks I have psoriatic arthritis. She does think I had the lupus-like syndrome (lasted about 6 months) but that it is gone and now I have arthritis. Guess I chose a good forum to join, huh? My mom has rheumatoid so i'm not surprised or anything, but I'm only 31 years old and not happy to have this added to my problems. We're trying methotrexate for now because I'm scared to try Enbrel after what happened on Humira. Some of the scaly patches are coming back now, too. Yay....
The action of Enbrel is completley different than that of Humira. Just because you had LLS with Humira doesn't exclude you from other Biologicals. There is less chance of antibody production with Enbrel than any of the biologicals and less yet when on MTX. (Its believed its antibody production that causes the LLS) I certainly understand your concern with trying another bio but the conversation may be worth having a bit further up the creek...... Best of Luck with the MTX
Jessticles said:
Figured I should follow up if anybody else is looking for information on lupus-like syndrome. I had been lowering how much prednisone I was on and am now completely off it.... because I started on methotrexate almost 3 weeks ago... because my rheumatologist now thinks I have psoriatic arthritis. She does think I had the lupus-like syndrome (lasted about 6 months) but that it is gone and now I have arthritis. Guess I chose a good forum to join, huh? My mom has rheumatoid so i'm not surprised or anything, but I'm only 31 years old and not happy to have this added to my problems. We're trying methotrexate for now because I'm scared to try Enbrel after what happened on Humira. Some of the scaly patches are coming back now, too. Yay....
Ask your doctor about Dimethyl fumarate.The drug is less immunosuppressive than most current drugs and is used for psoriasis, PsA, and MS. Heard it also treats lupus short term.
I haven't tried Dimethyl fumerate, but so far, the lack of a bio only diminishes the symptoms, the LLS doesn't go away. MTX gave me no symptoms, and I tried large amount of doses. Prednisone has not made any difference into the LLS.
On Enbrel now and the LLS is stil there.
My only protection is covering myself and avoiding all and any light.
I never had the skin rashes or sensitivity to light, only the severe joint and muscle pains. Still have those some, so I'm getting a second opinion from another rheumatologist because my symptoms have been a little confusing this year. I was getting swelling in places that I shouldn't- like the bridge of my nose and in my jaw under my teeth. Luckily that stopped and hasn't returned. My latest blood work said that the lupus factors are going down so they don't think I have real lupus. I didn't have joint problems before this year which is why I'm wondering if this is legit arthritis or still some pesky side effects from Humira that haven't fully gone away. Have any of you heard of biologicals causing you to get arthritis? And then keep having it?
How long until methotrexate starts working? My doctor said about 2 months, does that sound accurate? I am finding that Advil is a wonderful thing in the meantime.