Multiple autoimmune conditions and too many meds

Posted by t2swim09 @t2swim09, Aug 20 8:54am

I an a 60 yr old female with out any underlying medical problems (diabetes, heart problems, high, cholesterol etc)
I was diagnosed and treated with early stage Melanoma in 2004, treated by surgery with clean margins downbtobtje fascia.
I 2005 I was diagnosed with Crohns disease, no one else in the family has it although we believe my deceased grandmother (1961) that was raised in an orphanage was of German/Jewish decent. She passed from ovarian/stomach cancer at the agebof 48.
Moving forward I then was diagnosed with rheumatoid arthritis, then, Then got a P.E. out of no where and was diagnosed with antiphospholipid antibody syndrome (a clotting disorder) then Fuch's corneal dystrophy (had to have both corneas replaced in 2019, and Idiopathic Intracranial hypertension (where the cerebral spinal fluid builds up in my skull and causes severe migraines, memory and Word recollection problems, balance issues, vision disturbance(this can make you blind due to the optic nerve swelling and is irreversible) gait disturbance( I fall all of the time and fatigue. Usually they put a shunt in your brain to drain the excess fluid but bc of my clotting disorder an Crohns not a candidate (I was seen at John's Hopkins)
Is there any ONE doctor that specializes in auto immune diseases that i could see? I have to take 26 pills a day and know a I am having difficulty swallowing, food and pills are getting stuckninmy esophagus so I'm basically on liquids and have lost 40 lbs in less than a year .

Does anyone know of any such Doctor that will take on all auto-immune diseases/disorders and try to reduce the amount of medication on. Cause and effect! I don't know if all of the drugs are helping or hurting me!

Interested in more discussions like this? Go to the Autoimmune Diseases group.

@t2swim09, I think you are asking exactly the right questions. It is not uncommon for people to have more than one autoimmune condition as fellow members like @kathrynmc @migizii @laneyh @SusanEllen66 @givinghope will tell you.

It sounds like it is time for an overall medication review. This could be done by your PCP, rheumatologist or even a gerontologist. Another great member of your care team is your pharmacists. A pharmacist can review your medications with you. This is a great time to do it since as we age, we metabolize drugs differently. The combined effects of numerous medications that once helped you may now be harmful.

T2swim, Are you in the care of a rheumatologist? Do you get all your prescriptions from the same pharmacy?

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@t2swim09 You certainly do have quite a bit to contend with! And, no wonder you’re upset with the number of pills you take. You say that you’re having difficulty swallowing and now take only fluids. Have you seen a gastroenterologist for a swallow evaluation? That might be the best place to start before you loose any more weight.
Have you thought about going to The Mayo Clinic? They are located in Rochester, MN; Jacksonville, FL; and Tucson, AZ. Here is a link. Talk with your doctor and get her to help with a referral.
https://MayoClinicConnect.in/1mtmR63
There are also hospitals in the country that specialize in rheumatology.
https://health.usnews.com/best-hospitals/rankings/rheumatology.
Do you think you could peruse these suggestions?

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@colleenyoung

@t2swim09, I think you are asking exactly the right questions. It is not uncommon for people to have more than one autoimmune condition as fellow members like @kathrynmc @migizii @laneyh @SusanEllen66 @givinghope will tell you.

It sounds like it is time for an overall medication review. This could be done by your PCP, rheumatologist or even a gerontologist. Another great member of your care team is your pharmacists. A pharmacist can review your medications with you. This is a great time to do it since as we age, we metabolize drugs differently. The combined effects of numerous medications that once helped you may now be harmful.

T2swim, Are you in the care of a rheumatologist? Do you get all your prescriptions from the same pharmacy?

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Actually my rheumatologist and. Neurologist are more like my pcp than my pcp. I'm seea new pcp next week
I do use the same pharmacy and my Neurologist reviews all of my meds but says…like Topiramate, I have to take it for IIH and it has caused kideystones in both kidneys, vision, gait and memory (word recollection) side effects. If you have to take something with those side effects, which I have, what do you do?

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@becsbuddy

@t2swim09 You certainly do have quite a bit to contend with! And, no wonder you’re upset with the number of pills you take. You say that you’re having difficulty swallowing and now take only fluids. Have you seen a gastroenterologist for a swallow evaluation? That might be the best place to start before you loose any more weight.
Have you thought about going to The Mayo Clinic? They are located in Rochester, MN; Jacksonville, FL; and Tucson, AZ. Here is a link. Talk with your doctor and get her to help with a referral.
https://MayoClinicConnect.in/1mtmR63
There are also hospitals in the country that specialize in rheumatology.
https://health.usnews.com/best-hospitals/rankings/rheumatology.
Do you think you could peruse these suggestions?

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I am also under the care of a new(er) GI and they are running tests.
I had an uncle pass from ALS on my father's side and 2 other siblings of his that had swallowing problems most of their life that went undiagnosed, both have passed from cancer.

I also dee an oncologist for my clotting disorder so I hope maybe he'll get more involved with the bigger picture.

Yes I would be open to going to Mayo.
I was referred to a Dr at Cedar Sinai and I didn't even get to finish my paper work and she came out and apologized telling me my case was too complicated for her?!
Then John's Hopkins but they would only look at CSF and when they realized I couldn't be shunted, they was it for them.

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Regarding your Question about one doctor to cover all the issues related to immune diseases, disorders, etc. i don't think there is anyone like this today that would identify as a one stop shop for autoimmune problems. It may sound crazy to you but what I've been doing over the past few years is experimenting with how low of a dosage my body will tolerate and keep the symtoms at bay. I have CIDP, Rheumatoid, Psoriatic and Osteoarthritis. We have to be vigilant, taking prescription drugs can cause more harm than good. We've heard this before, "the cure is worse than the disease itself." What is key for me is to eat good food and exercise as much as your body can do. I am very blessed to have a physical therapy provider who allows me for a token monthly fee to use their indoor heated saltwater pool for water aerobics. I am double bless as well to have a spouse who drives me to do what I can when I can. Also, I have recently found a acupuncturist / herbalist who I am working with to improve digestion and neuropathy in my feet and hands caused by CIDP. There are good days and there are bad days but each day I try to remind myself that I am a child of God and His plan and will for me is good.

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@tedjones77494

Regarding your Question about one doctor to cover all the issues related to immune diseases, disorders, etc. i don't think there is anyone like this today that would identify as a one stop shop for autoimmune problems. It may sound crazy to you but what I've been doing over the past few years is experimenting with how low of a dosage my body will tolerate and keep the symtoms at bay. I have CIDP, Rheumatoid, Psoriatic and Osteoarthritis. We have to be vigilant, taking prescription drugs can cause more harm than good. We've heard this before, "the cure is worse than the disease itself." What is key for me is to eat good food and exercise as much as your body can do. I am very blessed to have a physical therapy provider who allows me for a token monthly fee to use their indoor heated saltwater pool for water aerobics. I am double bless as well to have a spouse who drives me to do what I can when I can. Also, I have recently found a acupuncturist / herbalist who I am working with to improve digestion and neuropathy in my feet and hands caused by CIDP. There are good days and there are bad days but each day I try to remind myself that I am a child of God and His plan and will for me is good.

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Check out the PBS Program titled “Eat Your Medicine” by Dr Mark Hyman of Cleveland Clinic. He is a 30+ year practitioner of functional medicine

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he's one of the best

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I was dx with MS at 24 years of ago and almost 25 years ago. I’ve Been on so many DMT therapies with Ocrevus so I have my Ocrevus infusion at KU on in March and then I found out in April I had breast cancer. The number one side effect of my MS I’ve had over 20 years is fatigue and my neurologist always put me on Adderall or Riglin and you know it unless you have it you don’t get it and so now with my cancer my college just put me on some verzenio and that causes fatigue and then my neurologist have had me put on try a new MS medication and I’ve been feeling like beyond exhausted the last few weeks since I’ve been on them weak.

They are a terrible combination of diseased to have.

Let me know if anyone figureds out how to be functional after all these damn meds they have me on!

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Hi all, I just found this forum. I have SLE, Antiphospholipid Antibodies, Sjogren's and Colitis. I have been having a miserable time the past couple of years after a period of remission. Paying for that now!
I am also having trouble with lots and lots of falls. The worst episode caused me total blindness for about 1/2 hour. I actually asked to go to the ER (I HATE hospitals.) I had to stay there for a week. So I understand all the weird symptoms we experience, that oftentimes defy explanation.

I have had to run from rheumatology to hematology to neurologyy, etc. and it is totally frustrating. To make it worse, I moved across country. I went from Dr. W at Cedars in LA to random docs here across country and am still trying to settle in with a good care team. Because I have been ambiguous about my condition, I have ended up in the hospital 3 times this year. After the blindness episode, I am no longer ambiguous. I had a TIA. I am now making the rounds of the "ists" to line up the proverbial "ducks."

I take high dose aspirin and Gabapentin for the neuropathy as well as high blood pressure meds. There are so many different sets of symptoms that I think we have to be careful and make sure that anything our of the ordinary needs to be checked.

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What a sad journey!
After reading about your TIA the thought came to mind that I hope your daily high dose aspirin doesn’t lead to a hemorrhagic stroke.
Careful! That happened to a friend. Wishing you happier times!

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A friend has been recently using Cymbalta to treat years of neuropathy, and for the first time in decades says she feels relief. She passed on her good news to three friends suffering frm arthritis who were also experiencing significant relief.

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Hi, I can sympathize with you after coughing for months I was diagnosed with ILD (lung) AFIB, and finally the root of all, RA rheumatoid arthritis!
I understand your frustration, It seems that we aren’t heard by some of the medical professionals.
I am fortunate to have a good team now. I encourage you to seek second opinions and if you can see a specialist at the Mayo Clinic.
I have a suggestion for swallowing pills, take a sip of water place pill in you mouth take another sip turn your head to the right and swallow. It work for me and for many others I taught this to. I hope you find a great doctor. Best Jilly❤️

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