Autoimmune sufferers?

ChrisNM

All-

Is anyone out there with auto-immune issues, especially birdshot chorioretinapathy?  Also, trying to track down info on paraneoplastic syndrome.  Anyone out there with any good suggestions or resources?  I have the birdshot and am currently treating with Cellcept, but have some other as-yet-undiagnosed auto-immune stuff going on (Granulomas in lymph since first cancer diagnosis, unexplained low oxygenation at night,  extreme fatigue, high sed rates) Sarcoidosis has been pretty much ruled out presently, but paraneoplastic syndrome has just been brought up, and I am hunting for info.

Thanks for anything you can point me to!

Chris in NM

mary625

Well, I don't know if this qualifies or is what you are looking for, but I have auto-immune thyroid disease (Hashimoto's Syndrome) and have had it since age 19.  My naturopath says that it is corrolated with breast cancer...not a cause and effect, but rather that there is just a higher number of women who have both.  I then found out through my naturopath that I am gluten intolerant, which is also correlated with Hashimoto's.  I'm eliminating gluten and working on trying to optimize my immune system so that there's not some constant internal war going on...except of course against cancer. 

BUNKIE10

I already had Sarcoidosis and Sjogrens Syndrome before I was diagnosed with BC. They are also watching my thyroid after Rads. A real kick in the butt.

I usually have an overactive immune system but have had it slowed down by prednisone and that made it hard to treat the cancer. There is some thought that immune suppressants do not work with fighting cancer but the jury is still out on that one. I just know it took much longer to heal from my lumpectomies and for my skin to heal after Rads. I finished Nov 13th and my skin is still red and peeling. I also caught a cold right after rads and have been fighting it for 4 weeks.

SaveMyBoobsp

I have hypo thyroidism, diebeties, and high cholesterol. I've been on meds for all except the diebeties. Now with BC, I know I have to get my act together, and work on everything as a whole, health enter action. That being said, I need to meet the new year with a diet, and exercise, plus Tamoxifen. It is really difficult when you have autoimmune disorders, losing weight, healing from surgery, and the various aftermath procedures. We are in a fight for our lives, so we must make the adjustments, and give it everything we have! Good luck to everyone fighting cancers!

MarleneFlorrie

ChrisNM

I hope your feeling better now. I have a question for you, have you been diagnosed with the paraneoplastic syndrome and what where your symptoms? I had breast cancer 5 years ago and I had building neurological symptoms of over a period of several years and I worked with a naturalpathic doctor and the nerve and muscle and immune problems increased, I had muscle jerking and twitching to pins and needles in my toes to electrical tapping crawling sensations throughout my body and finally I was refered to a neurologist that ran lots of tests and encouraged me to have cancer screening mentioning the paraneoplastic syndrome and my family history of cancer, my Mom had breast and ovarian cancer which she had basically at the same time and she passed away from the ovarian cancer 5 years before I was diagnosised with breast cancer. The neurologist said that they see these kinds of symptoms with these types of cancer, it is more rare though, I eventially after some months had my first mammogram at age 43 which did find the breast cancer. I also had toxic levels of vitamin B6 which can cause painful neuropathy so I stopped my B100 suppliments and just did B12, that doesn't become toxic in tha body, the neurological problems after some months did'nt go away so I had the mammogram and had the cancer removed, I haven't been having the nerve stuff like I had, I get what I think are flare ups once in awhile, the neurologist I saw told me if I start to feel the nerve problems going up my legs to get checked for cancer again type of thing. I am grateful I had these problems so I was able to be diagnosed with the cancer,that was a blessing. I was told by our family friend who is the head of our pathology department where I live that I had the breast cancer for probably 7 or 8 years and that makes sense that I had these problems building for as long as I did. Paraneoplastic syndrome is autoimmune. I also was diagnosed with endometriosis while on tamoxifen, I'm sure I had this for many years the tamoxifen aggravated it and because of the increased abdominal and pelvic and tailbone area pains it was diagnosed through a laporascopic procedure, this is also autoimmune.

I sure hope you are feeling better now, I look forward to hearing how you are doing.

MarleneFlorrie 

ChrisNM

Thanks, Marlene and all for sharing-

My onc doesn't think I currently have paraneoplastic syndromw, nor does the rheumatologist.  The rheumatologist suspects I have some other auto-immune process in addition to the birdshot, but we need to get the birdshot treated, and the immune-suppressant I am on (cellcept) is used to treat many auto-immune things, and so it may actually help with whatever else is going on.  I keep slugging through the days, and hope to gain more energy and catch fewer viruses and feel better.  My eye sight does seem to be improving on the medication, so I am grateful for that.

Praying for all of you dears dealing with multiple bad guys in these poor bodies!

Chris in NM

Alicethecat

Hi Chris

What are your B12 levels like?

Mine were low when I was diagnosed with pernicious anaemia, an autoimmune condition, 18 years ago.

http://www.patient.co.uk/doctor/Pernicious-Anaemia-and-B12-Deficiency.htm

You mention low oxygen levels at night and other symptoms.

If it is pernicious anaemia, it's easily fixed with a B12 vitamin injection every three months. I have this and I'm well.

Good luck

Alice

hydeskate

I was dx with Sjogren's Syndrome, Fibromyalgia, & Rheumatoid Arthristis to go along with Stage IV cancer.

Rdrunner

Did you have a biopsy to rule out Sarcoidosis ? Did they check CRP, ESR and ACE levels ? Im currently going through testing.. sarcoidosis is top of list, will be having biopsy, but they did mention paraneoplastic syndrome thing, but think its most likely sarcoidosis. My chemo has been stopped because I got so sick, and my oxygen was low too, but CT scan of chest show the typical enlarged lymph nodes in sarcoidosis. Waiting for the biopsy appointment. 

I think I was having mild symptoms before being dx but chemo made everything flare up which is weird because in theory auto immune disorders should improve during chemotherapy. One thing I know is common with the paraneoplastic syndrome is fevers, have you had fevers ? I had a fever of for  18 days, absoloutly no infection and white cell counts were normal. The put me on prednisone and everything stopped within days. Unfortunately had to stop it so there is somethign there to biopsy. Are they sure about the bird shot, sarcoidosis effects the eyes too.

ChrisNM

Sorry for you troubles, Rdrunner! 

Sarcoid was diagnosed three years ago by mediatynoscopic lymph node, but it does not appear to be active in my lungs or elsewhere at present.

I have a clinical dx for birdshot-- the lesions in my eyes are consistent with birdshaot, not sarcoid-type uveitis.  Also, I have a soft genetic marker for birdshot (it is HLA A29).  It is one of those things that not everyone with it has birdshot, but everyone with birdshot has it, and I do. 

My Onc doen't think my symptoms are consistent with paraneoplastic syndrome, so I am letting that drop for the time.  But if you are still mid-treatment, that is something for you to check out.  If i understand it correctly, that often resolves itself if you get rid of the cancer, so I will pray that you can get into that category.  You sound like an amazing warrior!

I have never had any fever.  That must have made you feel miserable! 

In case you haven't yet found it, there is excellent info at the sarcoidosis support site here: http://www.inspire.com/groups/stop-sarcoidosis/ 

Hope you get sme answers-

Chris in NM

LuvSnow

I was just diagnosed with Hashimoto's Thyroiditis. I was also told as a teen I have RA, but, as an adult no one can explain my aches and pains.  I am not "hypo" yet.  I have been monitored for the past 10 years due to multinodular goiters and complex cysts.  A few days before my BMX I had a thyroid biopsy, results showed Hashimoto's.  My recent blood work shows thyroid antibodies are elevated, so that confirmed the biopsy report.  My doctor says we just sit and wait....though I have read some doctors believe giving thyroid hormone will slow the progression of the disease.  Seems odd to me to just sit and wait while my system kills off my thyroid.  I am wondering if this is why I am so tired, foggy, achy?  I am also on Tamoxifen, so who knows!

ChrisNM

So sorry for your troubles, momof5kids.  Tamoxifen made me foggy, but I have read stuff about the bc itself causing that as well.  And if you have 5 blessings in your home, that could also add to the fog!  :-P Praying you can make a good plan and get a good doc who is really on your team to help you wade through all of this.

I am coming to the conclusion that when something goes hay-wire in our bodies (like cancer) then other things go haywire.

Chris in NM

Paulette23

hi! I have NUMEROUS autoimmune pbms and overlap syndromes...add the systemic damage from years untreated due to miss dx......how are yall doing w/ lupus, mixed connective tissue disease, raynauds,...the list goes on!