BC & Autoimmune Diseases: How many? What does the research say?
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Spoonie, An 18 year MS patient and a 7 month BS patient here. I do have a few ideas and recommendations. Please forgive me if I mentioned these in another post. One thing about MS, it does create some memory issues . First I found a wonderful forum from Mass. General Hospital, called Brain Forum. I made life long friends on that forum. I haven't been on it a few years now, but I believe it's still very active with info, clinical trials, etc. Next, I learned a lot about different MS drugs. I started on Copaxone, went to Mitoxantrone (a chemo drug) and one dose of Tysabri. I have been on LDN (Low dose Naltroxone) for many years. LDN is my favorite, off label and has worked very well at controlling MS attacks.
When I do have an attack that is or was significant, such as Optic Neuritis, I would be prescribed IV Solumedrol. It is proven to limit the effects and cut the time to healing of the lesions. I do not take any type of anti-fatigue med, but would highly recommend talking to neuro about that if needed. I'm very drug sensitive and if I recall, tried Provigil and did not have a great response. So listen to your body and when you are severely fatigued, climb in bed and chat on forums. lol. I suffer from insomnia greatly. I worked it out with Benadryl, doctors approval. I wean myself off every so often. I suffer from significant bladder issues, neurogenic bladder. My bladder has prolapsed and I need a pessiary ring, which I dislike, but use. I have a number of bladder infections, so I test myself and keep an antibiotic RX handy, with the urologists permission. Headaches and pain, I use Aleve and take a daily 81 mg aspirin, Vit. D, Vit. B, Cranberry capsules, Amitiza for IBS, LDN, 4mg, and Tumeric.
I learned a great deal about patience with symptoms. Pseudo attacks are a thing, so I usually give my symptoms a 3 day period of time before sounding the alarm. If you do need solumedrol, please, please make sure you are prescribed a tapering prednisone RX and follow the dosage exactly. Stress is a major factor of MS symptoms. So is your food intake. Fish, fish and more fish, followed by sunshine, limit sugar and frankly due to LDN, no alcohol period. No major pain meds allowed as you will suffer a very adverse reaction and possible hospitalization, if you choose LDN.
My last significant attack occurred with cancer diagnosis and mastectomy. I could not have steroids due to interfering with healing, so it's taken some time to get back to my previous baseline EDS level. I'm hoping to get there, but it may take more time. Vitamin D is usually depleted in MSers, so add that to your daily take. As for MRI's, I've stopped them. They are expensive, it is what it is and I have zero desire to change meds. I have friends with Primary Prog. MS, zero lesion load and they are far more significantly impacted by MS, then me, with a large number of lesion thru the spinal chord. So lesion load does not necessarily equate to disability. I suppose if I was severely digressing, I would consider complete MRI's and change meds, but I've already been on the big guns to knock it back, so I can walk better, not lose bladder control constantly and swallow better, though it's not perfect. Bowel control is another issues for me as the signal is interrupted. My vision has been left with deficits in the field of vision, but central vision is good. I've lost hearing and suffer from tinnitus. Nothing has helped, not even cortisone shots in the ear. Based on some cognitive difficulties, I chose to stop driving. I did pass my DL exam though, but use that license just for ID. In an emergency I could drive, but prefer not to.
The most important thing I can say about having MS, it makes you slow down. I strive to maintain my mental capacities by reading and I walk as much as possible and stay out of the heat. If you look at me, you would not know I have MS. 15 years ago I was bed bound by a significant attack, so chemo was my answer and it worked extremely well at resetting my immune system. I have more good days then bad!
Best of wishes to you.
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Spoonie, I know I should be able to give you all kinds of info but it is difficult. I basically ignore that fact that I have MS. Since my stage IV dx, I have concentrated on that and made that a priority. My neuro at the time actually told me to do that. I don't even go to a neuro now. The one I was seeing here left and his partner is the ONLY neuro in my city. That office is the most patient unfriendly place I have ever been. They put reflective contact paper on the check in window so you don't even know if anyone is there. The last time I went there to see the NP, she would not deal with me because I refused to have an MRI. (They own their own MRI machine and that is the biggest source of their income.)
I have never taken any MS drugs or solumedrol. I do have some of the sx mentioned by Irish but didn't think of them until she mentioned them. Bladder issues leading to lots of UTI's. Bowel problems leading to lots of panic and stress worrying about accidents. Tinnitus, yes. Weakness in all extremities especially legs. Right now, I am barely mobile. But could that be caused by my extended use of AI's? My body basically folds in half at the waist. I can talk myself into straightening up but almost immediately fold again. I need to go to PT and learn the proper way to use a cane. Can't talk myself into it right now. Stage IV has a way of letting you put things off. Like, why do them?
I have never had the typical exacerbations of RR MS. I just have slow decline. VERY slow. Kind of like my cancer. I do have some small paralysis after general anesthesia. That happened once. And once a quicker decline. Both of these times, I took high dose prednisone orally. I was dx in 1991. I have a PhD in statistics and read clinical trials. (Never say that to a doctor. You will be immediately thrown out of their office. Only made that mistake once.) I was unimpressed with the drugs available at my dx so declined them all. There are many more out now. The one I would consider if I were younger and didn't have stage IV BC would be Tysabri. I know several people who do really well on it.
I forgot everything you asked but patterned my reply on what Irish said. Hope it helps. More questions welcome anytime.
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I am a BRCA1 + woman who has had a number of autoimmune conditions (asthma, Sjögren s s syndrome or rheumatoid arthritis) before a 2004 diagnosis of ovarian cancer. After a scare I had a prophylactic double mastectomy with saline reconstruction because I also have MS and now celiac disease. All of these conditions- even the cancer- are essentially immune system malfunctions.
The best thing I have learned is to get a primary care dr who can help me sort through the differing recommendations from different specialties.
When I see a specialist I ask about the impact of his recommendations on my other health problems.
I have also found that eating a healthy diet and exercising to the best of my ability helps.
Physical therapy has been a tremendous help and motivates to continue on down days.
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AnnaDT- I too have RA and Sjogrens. Don't know many ladies with Sjogrens even though statistics say there are many out there. Yes I agree that cancer and the immune things correlate together. And from what I understand, we with autoimmune disorders cannot be treated with immunotherapy for the cancer. Sad, because immunotherapy seems to be the up and coming thing to treat cancer.
Good that you can use your PCP to sort thru everything. My PCP wants the rheumy to handle the autoimmune stuff and the onc to handle the cancer. The PCP wants to do regular stuff- immunizations, blood pressure, colds and flu, etc.
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Thanks ladies for the wonderful, lengthy replies full of suggestions and advice for this MS newbie. I'm feeling very lost in this new world of dx. Both my primary and my Neuro suggested I get a second opinion from someone who only specializes in MS treatment. Unfortunately the soonest I can be seen by anyone in the 2 major MS centers here in my state is in Feb 2020. Le Sigh.
My new MO and I had an interesting and enlightening, yet a bit scary of a conversation yesterday. Due to my intolerance of Tamoxifen, my allergy to Zoladex, and my new dx of MS she is very against my having any further endocrine treatment and/or surgery to decrease the estrogen available in my system. This was a shock to me but a bit of a relief to not have another dr try to convince me that I MUST have treatment. Yes, my risk are betweeen 28-35% for a RR/METs BUT that may never happen, while MS is here to stay. She doesn't want to antagonize it or speed its progress by prematurely dropping my hormones. Maybe this way I will have another 10 years or so before natural meno hits me and maybe brings on MS decline. IDK but at least I have a dr on my team that sees that my "plate" is full and I should be focusing on the battle that's here not one that may happen in the future.
Anyway, I just wanted to say thank you for sharing your experiences with MS and what's helped you. I'm still getting my footing and trying to figure out what symptoms are MS and what are my other conditions....it's very very very difficult to do. I'm hoping when I see my specialist in Feb that she will be able to do additional testing to establish a baseline for cognitive and motor functions and help me figure out what I should be tracking/monitioring/etc.
Do any of you have any suggestions for a good forum to join for MS? I haven't had any luck finding one that equals something like BCO. Would like to connect with some younger women with MS and there doesn't seem to be many support groups near me, so the internet may be more helpful. Forgive me if you mentioned them already, my mind is a bit of mush lately. Ugggh, so much going on. Can't wait for OCT to be over and I can have my life settle back down a bit, at least medically.
Hoping you are all doing as well as can be....so thankful to have found ya'll and to continue to be a part of this helpful thread.
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IrishLove - I did look up the brain forum you mentioned that was helpful for you, however Google wasn't helpful in finding it. Do you have a link you could share? I couldn't find it on my own. TIA.
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Hey Spoonie, your plate is definitely full. But there are other means which have been discussed other than lowering estrogen to improve your chances. Did you ask the scheduler at the Specialist's office to put you on a wait list for cancellation. Or you can call every week to see if there's a cancellation, best time is right after they open each morning. Since you're not working you could be available on short notice. You are very smart, you will figure it all out in time. Did you look into the progesterone possibility? Anyways, good luck to you!
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Oh and a MS question for you --- when do you know your'e having an attack?
This wasn't discussed with my at my Neuro appt.
I'm so used to having "flares" from my other conditions that I have no idea if they've been MS related this whole time or not. It's a huge puzzle.
Like can MS cause flares in memory problems? Can it cause increases in body/muscle/joint pain? Can it just be fatigue related? Can it cause low grade temps? Can it cause chronic nausea?
These things that flare up and worsen severely at times and then go back to my "normal". Again, I've thought for years this was Lyme Disease related or RA related or CFS related or Fibromyalgia related, so I have no idea if these are attacks or not.
I've been forgetting my address (my address!!) over the past 2 weeks and it's quite unsettling. The other day I couldn't for the life of me remember the name of our last president and I was a big fan, so when I went to talk about him to someone and couldn't recall his name, again I was disturbed. With my other conditons I am used to the normal type "brain fog" and just having to be more active in remembering things I want to remember, ie making lists etc. But I've never had a history of forgetting important, personal information like my PIN numbers and address etc. Is this normal? Is this concerning? I have NO frame of reference, which is why I need to find a forum asap I think.
Anyway, sorry for babbling. Am just trying to muddle my way into some info. Thanks in advance for any help you can give me. So VERY appreciated ladies!
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I don’t have MS, just a lot of sympathy. I do have autoimmune problems. But I just did a search on MS and progesterone and there are lots of links on the subject. Also there are symptoms with MS similar to depression and other things. I would guess that memory problems fit in there somewhere.
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Memory loss with MS can be due to brain lesions. I just looked it up. Low progesterone aggravates MS. MS is mind boggling I’m afraid.
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Spoonie ThisisMS.com My fav site. Funny I can't recall if all capitals or some capital letters to access the site. May be due to MS. Memory deficits, deep burning pain (especially in my arms and base of spine), neurogenic bladder, Tinnitus and Optic Neuritis (sporadically) are my major symptoms. Oh and of course I forget, memory. Is that an oxymoron? Oh wait I did mention Memory problems. See my point? Now I did take a chemo IV back years ago and I'm convinced he left me with permanent brain fog.
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Irishlove, URL's are not case-sensitive so uppercase or lowercase doesn't matter. I like that site, too.
Spoonie, the only thing that concerned me in what you said was your MO suggesting no hormone suppression. It always worries me when a specialist in one area claims to know something about another specialty. That is rare. My former MO liked to make ridiculous statements about MS as if he knew something he did not. (Typical for him.) I became stage IV when I went off Tamox. Granted, I had "some spots in my lungs" at dx, but "lots of old people have those." (Quotes from former MO again, thus former.) Also, keep in mind that I can hardly walk at all now, mostly due to AI's in my opinion. It still concerns me that you are not on any estrogen suppression given your ER+ status. Maybe I have been brainwashed by the oncology establishment but I still worry.
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candy 678 - I have the same problem with my pcp - I asked if she would be willing to be the coordinator of all my doctors and help me sort them and she said No. PCP & Rheumatologist won't talk with my MO nor my Pulmonary Dr. Frustrating. I have dermatomyositis & scleroderma. I'm being monitored for Sjogren's since I have severe dry eyes and mouth. Is there a specific test for Sjogren's? This is my 3rd Rheumatologist. Not many to choose from in my little town. She just pats me on my hand and says how sorry she is, and tells me she will see me in 4 months.
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I have primary autoimmune Addison's disease. I've had it 20 yrs. it definitely caused some problems during chemo. Now I wonder if it is contributing to my fatigue. Addison's is pretty rare. So my endo had never had an Addison's patient with breast cancer and my MO had never had a Addison patient. The blind leading the blind.
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rljes- I do not believe there is a specific blood test for Sjogrens. I had RA Factor, ANA, SSB-Ab and SSA- Ab, plus other lab tests-- all Positive. And with my symptoms of dry eye and my notes from my eye doctor ( did Schirmer's test ) we diagnosed the Sjogrens with a Rheumatologist at a large teaching hospital (2 hours from home). I have read about a lip biopsy, but never did that. My rheumy now is in my town, but he also travels to other towns around me. The next closest rheumy is 50 miles away, then the one I saw initially 2 hours away. Not too many to choose from in our area.
Yes the PCP is frustrating. Seems he just wants to do basics-- vaccines, colds, etc. If I mention the cancer or the autoimmune issues he interrupts me and says to talk to the other docs. He kind of ticks me off since I have been his patient for over 20 years.
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Krose53:
Addisons is typically easily managed by internists with hydrocortisone replacement. Over the years, the recommended doses for a stable outpatient have declined from 20 mg hydrocortisone ( HC) in the morning and 10 in the evening to roughly half of that, but with “stress doses" during major surgeries or serious illnesses. But some patients need a dose closer to the original even when not superstressed.
How much HC are you taking for maintenance? Though many things with BC can cause fatigue ( the chemo, the hormonal therapy, , the emotional upset) especially early on, inadequate HC maintenance dosing can aggravate fatigue. But too much thins bones, osteoporosis, among other problems, so don't just pop extra.
Also, autoimmune primary hypothyrodisim ( Hashimotos in most) can be associated with Addisons ( called Schmidt's Syndrome in the past) , and can cause fatigue, and is easily treated with replacement, so make sure your doctors check a TSH ( thyroid stimulating hormone) for hypothyroidism annually.
Also be sure you wear either a necklace or bracelet Medialert about your Addisons.
If you want another opinion, ask for a university based endocrinology referral
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rjes, I had the salivary gland removed from my mouth and will never recommend this procedure if there are other alternative ways of being diagnosed. It took many months to heal, obviously due to saliva. It left me with a permanent lump and extreme dryness of my mouth and lips, that my lips crack easily. And I do not have Sjogrens.
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Good to Know
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Hi, I appreciate your response. Text book Addison's may be easily controlled but that is not often the case with a real life person. I'm very familiar with the ins and outs of living with Addison's and Hashimoto's for the last twenty years. I wear a medical alert bracelet always and am familiar with the changing dose recommendations. I've always had very good results on all bone density tests. I've worked with my Endo over the years adjusting my dose and schedule. Unfortunately, there are not many endos who are that familiar with Addison patients and are usually advising based on text book knowledge. I have worked with a large university endocrinology program.
Thanks for taking the time to respond
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Hi Everyone,
Is anyone taking IVIG infusions? I just had an EMG Nerve test in right leg/Right arm to start the long process (which I will NEVER take an EMG again, the pain in my leg was unbearable - the arm testing wasn't painful )
My Rheumatologist had mentioned when I was undergoing chemo, that perhaps chemo would help reduce my flare ups of my auto immune diseases. Not. so. My neurologist who administered the EMG said chemo would agitate my auto immune system.
After complaining and explaining how serious my flare up was to my Rheumatologist, she wrote a script for 10 pills for colchicine- which cost $30. I called Insurance and they said a months supply would cost the same $30. My Dr's office refuses to give me 30 (even though I will be on this medication for years) I'm just so frustrated by it all. I need a new Rheumatologist and my little hick town - they are limited.
Thanks for listening to me rave! Rj0 -
I also have Addison’s primary and Hashi’s. I am scheduled for a mastectomy next month and was wondering about you experience? I can’t say that I am confident in my Endochrinologist. Also, I’ve had issues healing with surgery before that they said could be common in Hashi patients. Is there something specific that I should speak to my Endochrinologist about? My surgeons? Ty
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Brashich, I have Hashimotos and I didn’t have any trouble with healing from BMX or reconstruction. I am 5 years out.
A lot of ladies here will tell you that the various specialists don’t talk to each other about your total care. Let your endo know what is going on. Robin
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Hi Brashich, I had a bilateral mastectomy and healed beautifully. I had no complications and healed quickly. Just make sure you review your solu cortef dosing with your anesthesiologist. Right before I went in for surgery, I was speaking with the anesthesiologist. He was listing the meds he was going to give me. When he finished, I said what about my steroids for Addison's disease? He had no idea what I was talking about. Went back and reviewed my chart and found the notes hidden in the back. I know some are saying that 50mg are Ok with surgery every 4 hrs but I have always done 100mg w great results. Discuss this all with your surgeon but I'm sure you know that. Good luck!!
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I had no issues with my BMX - but I had no reconstruction either because of my auto-immune diseases. I was told the risk of infection was too great. (I didn't want reconstruction - so it was a mute point) I was told not to have both breast removed because risk of infection, but I did anyway and had no issues. I too had to remind my surgeon to give me steroids.
I just looked up the symptoms of Hashimoto's disease and I have everyone except "Excessive or prolonged menstrual bleeding" (hysterectomy) Interesting. My MO said he would contact my Rheumatologist but he never did. Brashich - best of luck to you for your upcoming surgery.
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Developed Hashimoto’s after chemo and Radiotherapy- I’m convinced it’s related. I read interesting research on Epstein Barr - theory is that it remains in certain tissues deactivated but when immune system is low (eg during chemo) it reactivates, and what we label as autoimmune disease is the body attacking the tissue harbouring the virus.
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I have not identified autoimmune disease ...i have for 15 years, and i was lucky, i don't take any medication and the only symptom i have: photo sensitivity to UVA and UVB. I wear long sleeves during summer, don't go to the beach, wear hats and use sunscreen for my face, because you can not hide your face from sun.
I am used to that condition and it does not interfere with my life too much.
But i am worried now if i will be able to have radiation because of that condition. I did not discuss it with doctors...because i am still waiting for discussing my future treatment plan...but of course i am wondering about it.
My understanding that radiation is different than UVA/UVB....and i don't feel any effect on my skin of x- ray or mammogram.
I know how important radiation treatment is ...and i hope i still can have it.
please let me know if someone had the same symptom and had radiation treatments after surgery?
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SSinUK...I'm also interested in how Epstein Barr is related to autoimmune disease. My health has been horrible since I had mono as a teenager. Presently I have 5 different autoimmune diseases. One of them, polyneuropathy, is debilitating. I was diagnosed with BC almost 5 years ago. I refused anti hormone therapy because my QOL is already compromised. Good luck to all navigating this complicated disease.
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hi tdad - I had my diagnoses of auto-immune diseases before I had cancer, and warned that cancer usually follows, I feel the same way about Hormone therapy - I feel like crap most of the time and cannot imagine how I would manage the Se's of Tamoxifen.
I spoke to my Dermatologist about radiation. He was confident he could help me thru any skin issues. It was my decision not to have Radiation.
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hello.
I got rheumatoid arthritis at 23. Have taken biologics since then. Now I have developed stage 3 breast cancer at 35. I have had to go back on my biologics because I cant function without them. Not much info on whether they cause cancer to return faster so I guess we will just wait and see.
Very worried
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I am not sure how active this thread is but I needed to vent. I have not needed to be on here for ages. I am waiting for confirmation of APS after a mild stroke - at 46 (fit & healthy after my BC.. or so I thought). I had a BMX in 2015 with allergen 410 Naturelle silicone implants(yes, they're on the recall list) and my specialist believes I have implant illness (burning, itching etc) & that the APS is a result of an overreaction to the implants/ possible silicone allergy, which makes them a direct cause in her mind. https://www.researchgate.net/publication/335313745...
Coupled with the Tamoxifen for 5 years, culminating in the stroke. She believes everyone should be tested for clotting disorders prior to Tamoxifen - I agree now- it's a cheap test. If anyone reading wants to request it, it is called: Anticardiolipin IgG & IgM antibodies, Anti Beta 2 Glycoprotein 1 with Lupus Anticoagulant. I have no other APS symptoms nor have I ever had them perfect pregnancies, no DVT or PE etc - just the ones that count, the clinical ones - positive for the auto bodies and a CVA. I have fully recovered, no deficits, thanks to stellar insurance, quick responses from a mobile stroke unit (given tPa in 12 minutes) & being fit. My specialist recommends (very strongly) explant but I don't want to be flat and no one is so keen on operating on me anymore. Thanks, makes me feel better to write it out. hugs to you all.
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