Do I have Autoimmune

Posted by mjbrew @jkjoshua, 2 days ago

I am HIV positive. Over 4 years ago my doctor ordered along with the usual by annual HIV lab an ANA test and it came back with a 1:80. I have since gone to see an RA specialist who ordered the Avise test. The test came back showing negative for Lupus or Rheumatoid Arthritis. Since then my ANA has gone back and forth between 1:40 and 1:80. For the past 10 years or so, I have always experienced mild to moderate muscle and joint pain - it comes and go but after my coronary angioplasty procedure in my LAD last year and my cardiologist prescribed Rosuvastatin 20mg my muscle and joint pain paint seemed to get worse. My last ANA number from a few weeks ago is 1:320. I’m not sure if my Rosuvastatin is the culprit causing the extra discomfort or my body just inflamed all on its own. I am going to see my cardiologist in a week and will talk to her about reducing the dosage (Statin). I am doing my best trying to make a healthier lifestyle changes. I have started a 3 mile morning walk every day for the past 3 months. I am willing to make changes with my diet as well but i dont how much more I have to do.. :-). Thank you in advance for your input…

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Keep on walking.There are other statins to try and different lipid lowering agents out there.
Have you tried CoQ10 it is helpful even when you aren’t on statins. It is important to know your inflammatory test numbers. The atherosclerosis theory has moved on to focus on chronic inflammation as a major risk contributor.

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I don't tolerate any statins. I tried lifestyle and supplements, but finally had to resort to Repatha, Plavix and blood pressure management with two meds.

That does not rule out an autoimmune disease of some sort, but many people find themselves unable to tolearstatins.

If you have other health conditions it is very important to consult all of your care team before starting any supplements. These can have unexpected interactions with medications.

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@jkjoshua Welcome to Mayo Clinic Connect! I’m so glad you found the site. The members on the site are very knowledgeable about autoimmune disease and their own health. BTW, how did you find Connect?

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Profile picture for seniormed @seniormed

Keep on walking.There are other statins to try and different lipid lowering agents out there.
Have you tried CoQ10 it is helpful even when you aren’t on statins. It is important to know your inflammatory test numbers. The atherosclerosis theory has moved on to focus on chronic inflammation as a major risk contributor.

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@seniormed thank you - yes I have been taking CoQ10 for the past 3 years. Seeing my cardiologist next week and will discuss about reducing my statin or other options. Not sure what my inflammatory test number is but I’ll ask my primary Dr.

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Profile picture for Sue, Volunteer Mentor @sueinmn

I don't tolerate any statins. I tried lifestyle and supplements, but finally had to resort to Repatha, Plavix and blood pressure management with two meds.

That does not rule out an autoimmune disease of some sort, but many people find themselves unable to tolearstatins.

If you have other health conditions it is very important to consult all of your care team before starting any supplements. These can have unexpected interactions with medications.

Jump to this post

@sueinmn thank you for your reply. I will talk to my cardiologist this week to see if she can either reduce my statin or other options.

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Profile picture for Becky, Volunteer Mentor @becsbuddy

@jkjoshua Welcome to Mayo Clinic Connect! I’m so glad you found the site. The members on the site are very knowledgeable about autoimmune disease and their own health. BTW, how did you find Connect?

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@becsbuddy thank you. I found Connect using Google search.

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The first thing my RA does when I see him is look at my hands. Are they swollen? Are your wrists painful? He takes them into his hands and then I have to make a fist while he looks. It must be a regular test that RA patients get because he does it every visit. How are your hands?

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I would request more testing for autoimmune either thru your current Dr. or switch to another Dr. Something else that might help is to see a Functional Medicine Dr. I am currently seeing one, I have CVID-Common Variable Immune Deficiency, Primary Immune Deficiency, so I see an immunologist. I get lots of sinus and upper respiratory infections. I have been having fatigue, muscle aches and pains/joint pain too, sore throat, coughing, hair loss, dry mouth and difficulty swallowing. The Functional Medicine Dr. did a whole slew of blood work (a whole lot!), it took the lab staff about an hour to prep all my vials/paperwork ready/supplies, etc.. I have majority of my labs back, getting more done tomorrow. Anyway, what is showing up is problems with my Thyroid- I am high and getting abnormal responses in my lab results. I have an appointment with a Rheumatologist soon, going to show her the results and see if she wants to do any additional testing to see if I have an autoimmune issue involving my thyroid. Functional Medicine Dr.'s are very different, they do accept insurance however insurance doesn't always cover everything. Whatever insurance doesn't cover, you will be required to pay for. It has been pricey, however I am worth it and my health is worth it. My Dr spent about 1 1/2 hours with me my first visit, going over my paperwork, other labs and test results I have had done in the past and asking me questions. My next visit was about an hour or so, with the Nurse going over my medications/supplements and medical history and the Dr. came in and recommended supplements for me and vitamins. It was discovered from my labs that I was deficient in vitamin B. My next visit was with the health coach. She wanted a food diary for 5 days and I did that and sent it to her. She went over changes that I should make to help me feel better and lose weight (as I am overweight). I am complex and rare with the CVID. I'm having memory problems, where the part of the brain is shrinking where your memories are stored. I have numerous gastro issues/tummy issues/swallowing issues/TMJ, sleep apnea, etc... Research Functional Medicine Dr's in your area and consider a change to seeking help from their expertise. They run numerous tests and thru those numerous tests they find things that other Dr's don't test for. I had an alternative Internal Medicine Dr. that did extensive food testing on me and he said I was gluten and whey intolerant. He instructed me to cut out all gluten/wheat and dairy. I have felt so much better cutting out those foods, it is difficult eating out and finding foods I can eat, it is worth it. I just had new food testing done and now eggs are added to the list of foods not to eat. If you haven't had any food testing, try getting food testing done. 2 types out there and both are great, you need both as you get 2 different results. 1st kind is from your allergy Dr and it is the "prick" kind of testing with a needle on your back or arm. They have told me several times I am allergic to strawberries and other berries and citrus. However, if I eat a small bowl of berries or strawberries I am fine. It seems to be when I eat too many berries at one sitting, is the problem. The problem occurs when I have a large glass of orange juice, my tongue will swell and burn and lips will swell. 2nd type of food test is from an alternative type Dr, like the Internal Medicine Dr I saw, or a Functional Medicine type Dr. This is extensive bloodwork/labs that they take and test and you get a long report back about it online and hardcopy. This is how I found out that I have an intolerance to wheat/gluten, dairy and eggs. I believe food takes a huge tole on our body and affects us greatly. I would highly recommend an alternative or Functional Medicine Dr for further testing, in addition to the Rheumatologist doing further testing for other auto immune conditions. Good luck and I hope you get to the root cause of what is going on with you.

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Wow now that’s a long reply/advice :-). Thank you very much for your reply.. I’ll talk to my family doctor when I see him mid march. I’m not sure if my insurance will cover the specialist you mentioned but I’ll find out. Again 🙏

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