Does anyone have multiple autoimmune or mast cell disease?

Hi CBMom -- I'm just seeing your thread now. How are you doing? Did you find anything that worked or in the end did you have to forgo RADs?

I also have multiple autoimmune issues, which is one reason I am not able to or willing to take Tamoxifen. I'm sorry that you had such an awful time on that medication, though, given what I've found in studies, there's so much they don't tell us about the rest of our system that it effects. No surprise there I think.

Going in to all this I was hoping that my team would take into acct my other issues, but it seems they didn't really take them to acct, if they had, they would've told me about the impact tamoxifen has on the immune system. But no one did.

I have Myocarditis, Chronic Late Stage Neuro Lyme Disease, Fibromyalgia, Sero Neg RA, Raynauds Syndrome, and Biotoxin Mold Illness (aka CIRS) just to name a few.

I'm following up with my MO this week, she's probably not going to be happy with me about the Tamoxifen, but I just can't do it, not with how it will affect my immune system (so many studies proving how it tanks CD57 and more) and how I have responded poorly to the transfer to a new anti-depressent that was "ok" with Tamoxifen. My QOL right now is more important than a possibility of cancer, maybe, somewhere down the road.

I am hopeful that she will have another idea to try instead of Tamoxifen or shutting down my ovaries. IDK.

My fingers are crossed that you found something that would work for your situation. If you have, let us know what's working. I'll post if there is something my MO comes up with. It seems that there aren't too many options other than Tamox and/or surgery/shutdown for those of us that are Pre-Meno.

Sending healing and hugs...


ETA - For anyone that stumbles on this thread searching for info about immune systems and Tamoxifen, I did quite a bit of research on this while making my decision about horomone therapy. My thread, Any Early 40s Declining Tamoxifen? https://community.breastcancer.org/forum/78/topics/868242?page=1 there are a few posts that link to specific studies demonstrating the effect this drug has on our immunity. FWIW.

I have Grave's and Hashimotos. Yes, at the same time intermittent. At times my thyroid runs too fast and I will get heart palpitations and other times it runs sluggish. I always feel extreme fatigue but have been living with this for years. I do take Tamoxifen. I haven't noticed any change good or bad. I was going through menopause prior to starting. Maybe that's why I'm not noticing any changes.

Hi CBmom,


I hope you're doing well. I'm very new to this community. Still learning to navigate it. I have autoimmune conditions and was very recently disagnosed with fibromyalgia -developed since my mastectomy in Aug. I'm, also, allergic to adhesives. Not tape adhesives, but liquid skin adhesives.


I was curious about your mention of mast cell dysfunction. My diagnosis of sjogrens syndrome, via antibody testing, then discoid lupus, via skin biopsy occurred in 2013. I had been having symptoms for years before I was diagnosed through a rheumatologist and subsequently a dermatologist with a lot of experience in autoimmune skin disease.


After reading your post, I've been contemplating bringing up the potential of mast cell disruption in my next appt.


I've experienced atypical tissue responses, as well as overt sensitivity to anethesia over many years when undergoing surgical procedures. Just wondering if mast cell issues might help explain the episodes that occured in separate incidents including angioedema, ileus, unusual swelling, and hemmorage.


I started some initial research after reading your post. If there is anything you could share re associated symptoms -how you were diagnosed, the diagnostics involved in confirmation of a mast cell disorder, I would greatly appreciate it.


In case sharing this would be of help to you: I saw a new primary care physician this week who brought up the potential of cbd oil in addressing my autoimmune symptoms and most recent fibromyalgia dx by rheum. She explained that she had dismissed cbd products medical validity until recently. She shared that she has been studying reports over last year re efficacy, and has autoimmune patients who have reported much improved symptoms. As a result of that added scope, she is recommending that I consider a trial run.


It was the first time any physician had ever mentioned cbd oil as a potential help in managing autoimmune related issues. She even provided a list of pharmacies that dispence cbd products.


I'm going to ask for feedback from rheumatologist about trying cbd oil, but I am inclined to try it since side effects aren't prevalent. I have been taking plaquenil for several years now. The potential that my symptoms/quality of life would be worse if I didnt use it, makes it the predominant Tx for me. I'd wondered, during first couple of years of use, if I could go off it. It's year four on it. Now, not willing to test it out.


I was prescribed cyclobenzaprine upon fibromyalgia diagnosis with goal of helping with better quality sleep due to increased overall body pain that started developing around week 8, post mastectomy.


I do an organic, sugar/gluten/dairy free diet plan. I, also, do tai chi to try and maintain flexibility and reduce pain in my joints. I think these measures likely help provide some amount of relief.Best to you and yours. Wishing you a peaceful weekend.

Hi Dtad,

Thanks very much for your kind response. Thank you, as well, for the mention regarding benefits of tamoxifen. I look forward to reading and increasing my understanding and peace regarding decision making.

I started cbd oil and am hopeful that it might mitigate my recently developed, post mastectomy fibromyalgia pain. I was acclimated fairly well to dealing with Sjogrens symptoms that include, significant joint stiffness, etc...but the addition of body-wide muscle and nerve pain is a whopper to endure. I 'think' I may be experiencing relief via cbd tincture. It's too soon to confirm. I'm going to stay with it for a month. I didn't wake up in pain as much, last 2 nights after using cbd tincture as I have since surgery. When I do wake up it seems the aches/pains are not as severe. I am achieving rem sleep, as noted by my recall of having a dream state -which had really not occured since surgery. So...I hope these are solid signs of increasing improvement.

I utilized risk calculater posted. I really appreciate becoming aware of it through this community. It's certainly not the only factor I'm using re making a decision on tamoxifen, but given the resource tool's result, when putting in the pathology features it asks for; It validates/supports my concern about leaning toward QOL issues as a predominant consideration. My risk/benefit metric was the same with and without use of tamoxifen upon plugging in my pathology stats into risk calculator. In addition, given 'relative' vs 'absolute' gains in use of tamoxifen, I can't make a decision in avoidance of autoimmune reality. I'm at high risk of significant side effects with my autoimmune and, now, apparent, fibromyalgia, in tandem with an already thickened uterine wall. My most weighty concern in considering potential side effects is worsening lupus status into systemic lupus, and development of uterine malignancy. But, also, I know any uptick in stiffness/chronic pain would put me over the line in being able to manage from a psychological health perspective. It's already difficult.

I was challenged by uterine fibroids, and subsequent anemia due to heavy periods that developed in my early 40's. Had a myomectomy over 10 years ago in effort to avoid more invasive surgical approach of hysterectomy. And, still, even with that 'gentler' approach, I had complication with, so-called, out patient, laparoscopic procedure. I was admitted to hospital for 4 days the day after myomectomy due to peristalsis interuption of my intestinal tract.

My tissues just don't tolerate surgery/anesthesia well, at all. It gets scary. My previous gyn suggested birth control pills to avoid surgery and uterine ablation. The pill worked quickly and well to address heavy periods/anemia. Problem was...as hindsight is 20/20...gyn kept me on them for 5 yrs. Its been suggested, by more than one clinician, post bc diagnosis, that the hormones in birth control pills may have contributed to (or possibly caused) bc. My new gyn commented that she would not have prescribed the pill after age 50. I've noted, recently, via this frustrating, scary journey, that doctors seem to lean toward avoiding saying 'anything' that cld be viewed by a patient as criticism of another doctor/colleague...which communicates, to me, that there's a tendency by, at least, some doctors to value another doctor's repute over advocating on behalf of their patient's sense of well being, unfortunately. This does not appear to be the case with my new breast surgeon or new gyn, I'm relieved to report.

Anyway, I was on birth control pills when I was diagnosed this year. Obviously, I discontinued use. *shaking my head. I trusted my former gyn's clinical judgment in keeping me on them through to my mid 50's. In all fairness, many women take birth control pills after 50 and don't develop bc. I won't ever know if it caused my diagnosis.

Hopefully, as a measure of 'treatment', discontinuing birth control pills combined with weight loss, organic diet, exercise, raising my vitamin d level from a really low 14 to 40, (aiming for 80, which is suggested as an effective level to lower risk for bc), etc., has/will continue to be helpful in facilitating hormonal parity, given my hormone receptor status.

I meet with my MO next month. On my 2nd visit with him, last month, he told me that he would be supportive of whatever I chose to do re tamoxifen. He is a kind-spirited, Otto Warburg deciple, i.e. cancer-as-result-of-disrupted-metabolics kind of guy...Mitochondrial dysfunction, et al. I'm focusing on learning/doing all I can to manufacture more mitochondria, and facilitate the mitochondria I have in better functioning.

Apologies for the novel, dtad. I think this site has sparked some cathartic energy in my processing that has been helpful emotionally/spiritually. I've been mired in sense of shock/fear. I so appreciate your empathy driven spirit, and you sharing your journey. It has been a relief to encounter your similar challenges with autoimmune in adding edification to my bc journey/treatment contemplations.

Wishing you, and all us gals/our families a sense of calm, sustainable peace and hope as we navigate. Seasons Greetings, and love to all!

Happy Holidays to all!

Checking to see if anyone else has autoimmune hepatitis. I am 46 now was diagnosed 2/2019 and it is in remission. I was just diagnosed with IDC and curious if anyone else with an immune system that clobbers their liver has been able to successfully tolerate chemo or hormone drugs.