Anyone dx with lupus after chemo?

mombos

mombos wrote:

Has anyone else been dx with lupus after chemo? I started having
symptoms 3 years out after treatment such as recurring fever, pain,
scaly scalp, off and on hair loss, mouth and nose sores and very dry
eyes etc. The doctors are talking about lupus. I can't help think that
this is a result of chemo. Given what chemo does to the immune system
it does not seem out of the realm of possibility that long term it could
cause an autoimmune disease. I just wanted to know if anyone else had
experienced this.

clarkjennifer

My friend Angela was diagnosed with ovarian cancer 2 years before. She got the complete treatment with surgery and chemotherapy. She was fine for the 1 year after the treatment but after 1 year she had recurrence of the tumor and than again complete treatment was done by the doctors but now she is not felling well and doctors are saying she has not so much of time. 

notmyfavcocktail

I actually just did a google search to see if there is a connection between chemo and lupus or other autoimmune disorders and stumbled on your question--doesn't look like too many people can relate, I guess.  
I finished my chemo (Taxotere and Carboplatum) in May of 2012, finished Herceptin Dec of 2012, and have been on Tamoxifen since June of 2012.  Last April I started to have incredibly weird and powerful symptoms/side effects/reactions...drastic temperature fluctuations (profuse sweating with being overheated and chest seizures from the chills), sharp heart pains, incredible joint and muscle pain that affected my ability to walk, Reynaud's Syndrome, and a rash on my face that wouldn't go away (though it was not the typical butterfly rash you see with Lupus), scaly scalp, nose and mouth sores, etc.  The pain got progressively worse throughout the summer and after multiple body scans and tests, it was assumed that I had drug-induced Lupus...however...none of the drugs I was on are on the long list of drugs that can cause drug-induced Lupus.  Symptoms began to subside that August after I stopped taking any drugs whatsoever and I slowly reintroduced them to my system and seemed fine for a while.  The pain was always there though and, again, began to intensify at the end of October.  Since then I've acquired a dry cough after a cold I just had and it won't seem to go away (it's now been 6 weeks)--I've had a low-grade fever off and on for two months--the Reynaud's symptoms are back--I'm having headaches, which I've never had before--and generally been feeling like crap.  I've had a few ANA tests and some came back positive, some negative.  It's been almost a year now and let's just say I passed the 'frustrated' period a while ago...

No doctor has told me that it's Lupus, though they have thrown the word around a few times as possibilities, so I'm not sure what they're looking for to verify that...but with all this going on I can't help but think how damaging chemo is to the body and the potential for it to affect our immune systems just seems logical to me.  
Can I ask what you had for your treatment?  Have you discovered anything since you first posted this?  Where is your joint/muscle pain?

Xrayalli

Not sure if you know this or not but some doctors actually treat patients who have lupus with some forms of chemotherapy. Lupus is an over active immune system and patients who have lupus don't usually have problems with their disease while undergoing chemotherapy for breast cancer. This does seem to be the case for me. I've had lupus for 17 years and I actually think it's helping protect me against germs, for example, my husband has had a nasty cold for over a week. I have low WBC and all I have is a sore throat (mild) and a little cough. I work in a hospital, too. As far as a lupus diagnosis after chemo, I would guess it would not be related, but of course I have no basis for that.  Good luck!

steelersluver

I can verify first hand that chemo can put lupus into remission.  I had 7 months of chemo (AC, then Taxol) and went into remission.  I had zero lupus flares during chemo...just exceptionally bad mouth sores.  It stayed away for about a year after chemo, and my hair started to come in thick. It came back though about 6 months ago, complete with thinning hair, mouth sores, Reynauds and pain.  Given the timing, I think the chemo had to have been the difference.  My rheummy also mentioned that chemo is sometimes used in smaller doses to treat autoimmune diseases.

Tammie

Anonymous

I was just logging on to post almost the identical question; however, with one caveat: I was diagnosed with lupus four years after my BC, but I did not do chemo. I've been wondering if anyone had the same experience? Seems the few I can find had lupus first, then BC later. I would be interested in hearing from someone with a case like mine. It took almost two years for the docs to diagnose the lupus... I thought it was mets to my brain and bones from the severity of the symptoms. I'm wondering what the connection between the two diseases may be, if any. 

MOMBOS: My symptoms were extraordinary fatigue, neuropathy, brain fogginess, joint pain, back pain, hair loss, sun sensitivity, facial rash -- all of which ebbed and flowed, occurring suddenly and mysteriously. After being evaluated for various possible mets, MS, and a host of other things, my onco finally suggested a rheumatologist to consider lupus. If you haven't been told yet: there's no definitive test for lupus; dx hinges on the patient meeting at least four of eleven criteria to be deemed as having the disease. I hope your health turns out well, and I'd like to know the outcome.

Take care.

lynn7478

I have lupus sle and bc ,but I had sle first and was on methotrexate for 5yrs and got bc,they treat cancer with methotrexate,and sle if they can't control it.

windingshores

I wonder if any of you had Lyme or other hidden infection that became more apparent with chemo.

windingshores

I have had a diagnosis of lupus for about 12 years but also had Lyme and some docs think MS, one biopsy said dermatomyositis. Labels don't matter to me: it is autoimmune, which is in some ways a too strong immune reaction, not too weak.

It had occurred to me that chemo might help my lupus. We'll see...

My surgeon doesn't want to do radiation due to the lupus, which means mastectomy. I am happy with that.

hydeskate

They thought I had wither Lupus or Sjogren's after finishing chemo. After testing I had Primary Sjogren's and a crap load of other stuff to go along with it. Though I may have had the Sjogren's before chemo but it didn't affect my life until freaking Chemo, it caused my immune system to go Nuclear. On the bright side they think it is keeping my cancer in check.

Michelle42

I finished chemo in Nov, 2014 and continued with herceptin in August, 2015. I've been in pain all over since chemo ended. Just last month I had labs drawn with a holistic dr and she said that my labs point to lupus. My oncologist agreed after seeing my labs. The oncologist thinks I had lupus prior to cancer though and by finishing chemo, my body went into a flare with lupus. I have all over joint and muscle pain/weakness, extremely elevated cholesterol (never had), elevated ANA and dsDNA levels as well as the butterfly rash (I always thought I had rosacea). I've read that having lupus predisposes you to getting breast cancer. I'm seeing a rheumatologist in May. Looking forward to feeling better someday! Good luck to you

Dlia

During my chemo in 2011 my cheeks and nose were broke out and so red. I saw the oncologist and she just said you are really red so I continued on with the treatment and it went away. In 2012 when I got the implants I broke out on my chest and breast area and the plastics surgeon asked what is going on here... I've always broke out on my back and was told that it was a form of excema. After chemo I was told I had blood in my urine tested for everything but doctors never found anything. Then in 2013 developed vertigo so severe that it could last for two weeks straight. Spinning sitting, standing or laying and walking side ways as if I had been drinking. I go to my oncologist and asked them to take my blood because my legs were experiencing pain again and I thought my vitamin d might be down again. She did a complete blood work and called me on that Monday and told me that my vitamin d was low and that my neutrophils were low that they wanted me to see a blood specialist and would need to have my numbers checked again. Not sure what that meant so I asked and she said it could be a number of things that I could be just getting over being sick.... uh no. It could be leukemia, lymphoma or lupus and that I needed to not be in a large group of people and to keep washing my hands or keep hand sanitizer available. I go to the dermatologist on last Monday for the break out on my back an chest and the first thing she ask is do you have lupus? Uh... does it look like lupus? Well I don't want to answer that I want to do a biopsy to rule it out. I asked if she could check my hair because it has not really grown back like it was it is really patchy and hair that had grew seemed to have come out and my chemo/Herceptin was over in 2011/2012. So we did the biopsy she checked my hair and now the wait is on for the results to come back some time this week. My sister was diagnosed after her bc and my cousin too. Does it sound like lupus to any of you?

Lori271

I had bc treated with chemo followed by neuropathy, rheumatoid arthritis & fibromyalgia. I felt the diagnosis of the last two was kind of sketchy based on my complaints & high inflammatory markers in blood. I moved & my new dr requested more in depth lab testing which is now ruling out ra but points to lupus. I had triple neg bc.

What have you found to help with lupus

Motherofall6

I was diagnosed with ra another autoimmune disorder 12 years prior to my breast cancer , and wondering what that will effect chemo 🙄