Undiagnosed auto immune disease, put on Leflunomide

Posted by lisabeans @lisabeans, Feb 13, 2017

I have auto immune issues but am still undiagnosed. I have joint and muscle pains sometimes to the point that holding my son’s hand hurts. I have sensitivity to light and sun where I get very dizzy, nauseous and my face gets red on my cheeks and nose. I have an positive ana 1:160 homogenious. My rheumy started me on plaquanil and it worked okay but still has a lot of pain. Then tried sulfasalazine but my liver count went through the roof so we stopped that. Methotrexate made me very sick so now I am on Leflunomide. That has helped a bit but still have burning pains and my face is still red. I am seeing a new rheumotolgist in May while still seeing the guy I have been seeing. I do have ulcerative colitis which is in remission. I also have dry eye and get mouth sores. I am so confused (going on 2 years trying to get diagnosed). Any one else have similar symptoms and were diagnosed? I feel so lost.

@pjc820

I was diagnosed with Sjogren's syndrome it sounds very similar to a symptoms that I have right now. Ask your rheumatologist or your neurologist to have the test done on you it's very simple to have done. The Plaquenil is the drug that they have given me and it does only help a little bit. But have the test done. I'm surprised they haven't suggested that for you. Look it up and you'll see what I'm talking about.

Jump to this post

be very careful with plaquenil. it can cause very bad issues with your vision. have your vision checked every 3 months, with this drug….kozlo52

REPLY
@pjc820

I was diagnosed with Sjogren's syndrome it sounds very similar to a symptoms that I have right now. Ask your rheumatologist or your neurologist to have the test done on you it's very simple to have done. The Plaquenil is the drug that they have given me and it does only help a little bit. But have the test done. I'm surprised they haven't suggested that for you. Look it up and you'll see what I'm talking about.

Jump to this post

Hello pjc…what tests please?

REPLY
@woahitsval

I am a 21 year old female, height 5'5, weight 130. I am relatively active when I am not sick and eat a healthy diet. I have always had a poor immune system. Growing up I caught every virus, infection, etc. and even had shingles by the time I was 11. I have had chicken pox, countless cases of strep throat, bronchitis, walking pneumonia twice, digestive issues, endometriosis, and I get the flu hardcore every season usually multiple times. For the last 4 years I have gotten much sicker than normal, being that every time I get the flu I become hospitalized, I had 3 kidney stones one month after another, and a stomach ulcer. This year in 2019, I started off with a really nasty flu. I got better for 3 days then I got really sick again with walking pneumonia. Now just 3 weeks ago I came down with what I thought was stomach flu, throwing up violently, bad diarrhea, fever, and muscle aches. The doctor said that virus was unlikely due to the length and nature of symptoms and checked my blood, did an ultrasound of my gall bladder, and ordered stool samples to check for parasites. Everything came back normal. She ordered an endoscopy/colonoscopy for next month to check for something like Crohn's disease. By the time my vomiting and diarrhea stopped and I could keep food down, I got better for about a day and a half and then I noticed an intense feeling of fatigue/malaise and body aches. Every day my throat felt more and more sore and was very red and my lymph nodes were swollen so I went to urgent care to check for mono or strep throat. They both came back negative and the doctor gave me a steroid to help with the inflammation. After the steroid my throat felt much better, but the intense body aches were the same. Everyday I became more congested and my ears would hurt, and I would have splitting headaches at the base of my skull. Today is the third week of being sick and I can hardly do anything. OTC medications barely get me through, and I even have been trying accupuncture which helps a little but not a whole lot. I am only on one medication which is a prescription vitamin D supplement for deficiency. Does anyone have any idea what this could be?? From what I have researched it sounds like it could be an autoimmune disease. What do you guys think? Sorry for the long message and thank you!!

Jump to this post

@woahitsval Oh you poor dear so many for so young. Welcome to connect we here care and let you know of our experience.We aren't Dr,s but are caring. Have you seen an Infectious Dr? You didn't say what kind of Dr you are seeing.With the pain I suggest a rheumatologist also .The Dr doesn't have you On any other med.but Vit D. ?Mayo is great at rare diseases Sounds like you should maybe see a University hospital or try Mayo if your close to any.I'm sorry for your problems

REPLY
@lioness

@woahitsval Oh you poor dear so many for so young. Welcome to connect we here care and let you know of our experience.We aren't Dr,s but are caring. Have you seen an Infectious Dr? You didn't say what kind of Dr you are seeing.With the pain I suggest a rheumatologist also .The Dr doesn't have you On any other med.but Vit D. ?Mayo is great at rare diseases Sounds like you should maybe see a University hospital or try Mayo if your close to any.I'm sorry for your problems

Jump to this post

Hello,
Thank you for welcoming me into the group! I have only seen a primary care doctor for these issues, other than the urgent care and emergency department doctors I have seen over the years. I see her again tomorrow for a follow up but they never reccomend what other doctors to see so I have no idea what direction to go in. They keep trying to say it's just viruses but never take into account my medical history and how often I get sick to find the root of the problem. Yes I am only taking vitamin D supplement at the moment. I live in Salt Lake City, UT and all my doctors are through university of utah health.

REPLY
@woahitsval

Hello,
Thank you for welcoming me into the group! I have only seen a primary care doctor for these issues, other than the urgent care and emergency department doctors I have seen over the years. I see her again tomorrow for a follow up but they never reccomend what other doctors to see so I have no idea what direction to go in. They keep trying to say it's just viruses but never take into account my medical history and how often I get sick to find the root of the problem. Yes I am only taking vitamin D supplement at the moment. I live in Salt Lake City, UT and all my doctors are through university of utah health.

Jump to this post

@woahitsval If it's only viruses they should put you on a antiviral meds For me when I was in my late 20,s I had a bad case of mono it's Epstein Barr virus I was told to make sure I take Vit. C and other Vitamins completely So a good plant based vitamins,minerals is what the Dr gave me.But make sure you be your own advocate ,you know your body better then anyone so Advocate for yourself it's your right.

REPLY
@woahitsval

I am a 21 year old female, height 5'5, weight 130. I am relatively active when I am not sick and eat a healthy diet. I have always had a poor immune system. Growing up I caught every virus, infection, etc. and even had shingles by the time I was 11. I have had chicken pox, countless cases of strep throat, bronchitis, walking pneumonia twice, digestive issues, endometriosis, and I get the flu hardcore every season usually multiple times. For the last 4 years I have gotten much sicker than normal, being that every time I get the flu I become hospitalized, I had 3 kidney stones one month after another, and a stomach ulcer. This year in 2019, I started off with a really nasty flu. I got better for 3 days then I got really sick again with walking pneumonia. Now just 3 weeks ago I came down with what I thought was stomach flu, throwing up violently, bad diarrhea, fever, and muscle aches. The doctor said that virus was unlikely due to the length and nature of symptoms and checked my blood, did an ultrasound of my gall bladder, and ordered stool samples to check for parasites. Everything came back normal. She ordered an endoscopy/colonoscopy for next month to check for something like Crohn's disease. By the time my vomiting and diarrhea stopped and I could keep food down, I got better for about a day and a half and then I noticed an intense feeling of fatigue/malaise and body aches. Every day my throat felt more and more sore and was very red and my lymph nodes were swollen so I went to urgent care to check for mono or strep throat. They both came back negative and the doctor gave me a steroid to help with the inflammation. After the steroid my throat felt much better, but the intense body aches were the same. Everyday I became more congested and my ears would hurt, and I would have splitting headaches at the base of my skull. Today is the third week of being sick and I can hardly do anything. OTC medications barely get me through, and I even have been trying accupuncture which helps a little but not a whole lot. I am only on one medication which is a prescription vitamin D supplement for deficiency. Does anyone have any idea what this could be?? From what I have researched it sounds like it could be an autoimmune disease. What do you guys think? Sorry for the long message and thank you!!

Jump to this post

Hello @woahitsval, I would like to add my welcome to Connect along with @lioness and other members. I’m sorry to hear you are having a difficult time getting a diagnosis. There is currently another discussion for undiagnosed autoimmune diseases where your post may receive more visibility. I'm tagging our moderator @ethanmcconkey to see if we should move your post to the following discussion where you can meet other members with similar symptoms.

> Groups > Autoimmune Diseases > Undiagnosed auto immune disease
https://connect.mayoclinic.org/discussion/undiagnosed-auto-immune-disease/

I thought this video maybe helpful to let you know you are not alone. What happens when you have a disease doctors can’t diagnose TED talk by TED Fellow Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome.
https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose

Have you thought about getting a second opinion? If you would like get a second opinion from Mayo Clinic, you can find the contact information for
the Minnesota, Arizona and Florida campuses here http://mayocl.in/1mtmR63.

REPLY
@woahitsval

I am a 21 year old female, height 5'5, weight 130. I am relatively active when I am not sick and eat a healthy diet. I have always had a poor immune system. Growing up I caught every virus, infection, etc. and even had shingles by the time I was 11. I have had chicken pox, countless cases of strep throat, bronchitis, walking pneumonia twice, digestive issues, endometriosis, and I get the flu hardcore every season usually multiple times. For the last 4 years I have gotten much sicker than normal, being that every time I get the flu I become hospitalized, I had 3 kidney stones one month after another, and a stomach ulcer. This year in 2019, I started off with a really nasty flu. I got better for 3 days then I got really sick again with walking pneumonia. Now just 3 weeks ago I came down with what I thought was stomach flu, throwing up violently, bad diarrhea, fever, and muscle aches. The doctor said that virus was unlikely due to the length and nature of symptoms and checked my blood, did an ultrasound of my gall bladder, and ordered stool samples to check for parasites. Everything came back normal. She ordered an endoscopy/colonoscopy for next month to check for something like Crohn's disease. By the time my vomiting and diarrhea stopped and I could keep food down, I got better for about a day and a half and then I noticed an intense feeling of fatigue/malaise and body aches. Every day my throat felt more and more sore and was very red and my lymph nodes were swollen so I went to urgent care to check for mono or strep throat. They both came back negative and the doctor gave me a steroid to help with the inflammation. After the steroid my throat felt much better, but the intense body aches were the same. Everyday I became more congested and my ears would hurt, and I would have splitting headaches at the base of my skull. Today is the third week of being sick and I can hardly do anything. OTC medications barely get me through, and I even have been trying accupuncture which helps a little but not a whole lot. I am only on one medication which is a prescription vitamin D supplement for deficiency. Does anyone have any idea what this could be?? From what I have researched it sounds like it could be an autoimmune disease. What do you guys think? Sorry for the long message and thank you!!

Jump to this post

I hate that you are going through this! When you see your doctor next time, request extended bloodwork (IgG, IgA and IgM for example) and a referral to immunology. There are many immune deficiency syndromes that can be detected through bloodwork-if the provider is willing to look. I have found that young age often works against you in this fight. Many, many medical providers (some at Mayo included) can have blunders on when it comes to what conditions someone of a certain age can have. Keep pushing until you get answers. Best of luck to you!

REPLY

I am a 21 year old female, height 5'5, weight 130. I am relatively active when I am not sick and eat a healthy diet. I have always had a poor immune system. Growing up I caught every virus, infection, etc. and even had shingles by the time I was 11. I have had chicken pox, countless cases of strep throat, bronchitis, walking pneumonia twice, digestive issues, endometriosis, and I get the flu hardcore every season usually multiple times. For the last 4 years I have gotten much sicker than normal, being that every time I get the flu I become hospitalized, I had 3 kidney stones one month after another, and a stomach ulcer. This year in 2019, I started off with a really nasty flu. I got better for 3 days then I got really sick again with walking pneumonia. Now just 3 weeks ago I came down with what I thought was stomach flu, throwing up violently, bad diarrhea, fever, and muscle aches. The doctor said that virus was unlikely due to the length and nature of symptoms and checked my blood, did an ultrasound of my gall bladder, and ordered stool samples to check for parasites. Everything came back normal. She ordered an endoscopy/colonoscopy for next month to check for something like Crohn's disease. By the time my vomiting and diarrhea stopped and I could keep food down, I got better for about a day and a half and then I noticed an intense feeling of fatigue/malaise and body aches. Every day my throat felt more and more sore and was very red and my lymph nodes were swollen so I went to urgent care to check for mono or strep throat. They both came back negative and the doctor gave me a steroid to help with the inflammation. After the steroid my throat felt much better, but the intense body aches were the same. Everyday I became more congested and my ears would hurt, and I would have splitting headaches at the base of my skull. Today is the third week of being sick and I can hardly do anything. OTC medications barely get me through, and I even have been trying accupuncture which helps a little but not a whole lot. I am only on one medication which is a prescription vitamin D supplement for deficiency. Does anyone have any idea what this could be?? From what I have researched it sounds like it could be an autoimmune disease. What do you guys think? Sorry for the long message and thank you!!

Liked by lioness

REPLY

Hi @woahitsval I wanted to join the others in welcoming you to Connect. You may have noticed I moved your post to this existing discussion so that you can connect with others who have undiagnosed autoimmune diseases. Simply click VIEW & REPLY in your email notification to get to your post.

How are you feeling today?

REPLY
@ethanmcconkey

Hi @woahitsval I wanted to join the others in welcoming you to Connect. You may have noticed I moved your post to this existing discussion so that you can connect with others who have undiagnosed autoimmune diseases. Simply click VIEW & REPLY in your email notification to get to your post.

How are you feeling today?

Jump to this post

@ethanmcconkey Good morning Ethan I'm not sure where to add this information The https://www. nccih.nih.gov/node25154 has a lecture on June 10 about how bacteria modulating pain on nerves might be quit interesting .Linda

REPLY

I HAVE UNDIAGNOSED AUTOIMMUNE DISEASES. IS THERE SOME WHERE ONE CAN FIND MORE INFORMATION. THANKS TERESA

REPLY
@quiteachiver75

I HAVE UNDIAGNOSED AUTOIMMUNE DISEASES. IS THERE SOME WHERE ONE CAN FIND MORE INFORMATION. THANKS TERESA

Jump to this post

Hi Teresa @quiteachiver75 — You ask a great question that a lot of people are asking. Unfortunately I don't think there is one answer. A person has to do a lot of reading and research on their own symptoms. This discussion you posted in is a good place to start.

Are you able to describe or talk about your symptoms or the conditions that you have? Hopefully other members with similar symptoms will be able to share their experience with you.

Mayo Clinic has some information that I think can get you started. I like the information under the Prevention heading in this link below.

Primary immunodeficiency
https://www.mayoclinic.org/diseases-conditions/primary-immunodeficiency/symptoms-causes/syc-20376905

REPLY

I really need to post because I’m going crazy!! Quick review of symptoms. Last March- weird sensation under my left arm like a pea in my armpit that grew to the size of grape but x-ray clear. Throughout last year that feeling continued with flank pain on the left side and my vision blurred randomly. All lab work and biliary/kidney US clear.
January this year- left armpit pain is about unbearable. Continued flank pain but also some lower breast pain bilaterally. Mammogram and US negative. At follow- up Flu swab done for new onset nausea. Flu +, placed on doxycycline and tamiflu. 2 days later I had strong electrical pulses running from heart to my neck and a rash on my left shoulder determined to be shingles. Prednisone and valtrex added and doxy stopped. Symptoms continued and several appointments later H.pylori test done and came back positive. Prevpac completed. Intense pain and itching started in my neck and jaw. Moved through my chest and down to my ground and left lower leg. I then tested + for mono. Here we are in June. I have the same pains As before but now also in my wrist, right hand, and back and tachycardia that comes and goes (158 resting) Lupus, RA, Lyme all negative. ESR normal. Abdominal and pelvic CT normal. Chest x-ray normal. All EKGS normal!! I’m taking Motrin only and using hot and cold compresses but nothing is helping and I’m just getting worse. Someone please help.

REPLY

Hello @crazey22, welcome to Connect. Besides the pain and anxiety it must be terribly frustrating not being able to get to the bottom of your health problems and find a treatment that helps. Have you thought about getting a second opinion? Mayo Clinic is really good at diagnosing hard to diagnose health conditions. If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

You mentioned tachycardia that comes and goes. Did your doctors suggest any cause or treatments?

REPLY
@crazey22

I really need to post because I’m going crazy!! Quick review of symptoms. Last March- weird sensation under my left arm like a pea in my armpit that grew to the size of grape but x-ray clear. Throughout last year that feeling continued with flank pain on the left side and my vision blurred randomly. All lab work and biliary/kidney US clear.
January this year- left armpit pain is about unbearable. Continued flank pain but also some lower breast pain bilaterally. Mammogram and US negative. At follow- up Flu swab done for new onset nausea. Flu +, placed on doxycycline and tamiflu. 2 days later I had strong electrical pulses running from heart to my neck and a rash on my left shoulder determined to be shingles. Prednisone and valtrex added and doxy stopped. Symptoms continued and several appointments later H.pylori test done and came back positive. Prevpac completed. Intense pain and itching started in my neck and jaw. Moved through my chest and down to my ground and left lower leg. I then tested + for mono. Here we are in June. I have the same pains As before but now also in my wrist, right hand, and back and tachycardia that comes and goes (158 resting) Lupus, RA, Lyme all negative. ESR normal. Abdominal and pelvic CT normal. Chest x-ray normal. All EKGS normal!! I’m taking Motrin only and using hot and cold compresses but nothing is helping and I’m just getting worse. Someone please help.

Jump to this post

Good info about different viruses that cause Mono…
https://www.cdc.gov/epstein-barr/index.html

REPLY
Please login or register to post a reply.