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Have a few autoimmune disorders - now have consistent low grade fever

Posted by blindeyepug @blindeyepug, Apr 28, 2017

Hi, I usually try not to complain, but I am very frustrated. I have RA, Sjogren’s and Fibro along with spinal stenosis, osteoporosis, depression. I try really hard to stay active, stay away from pain medications and stay positive. Well, I am really down. I have had a low grade fever (99.8 to 101.2) for over two months together with, if possible, even more exhaustion than usual. I am really struggling. I have been to my rheumatologist who took bunches of blood tests. All came back within normal except I have low B12 and slightly elevated C3C. I recently had chest, abdomen and pelvic scans taken that came back clear. Now I am suppose to go to an infectious disease specialist. I am very frustrated and really tired of feeling sick and tired all the time. My boss (I still work part time), husband and family do not understand the exhaustion. I am getting “those” looks again like I did when I first started having fibro symptoms. I just wonder if any one else has had this happen and, if so, what was discovered? I just am super depressed. I feel as if I have taken ten steps backwards.

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

oldkarl | @oldkarl | May 17, 2017
In reply to @oldkarl "Yes, to make it short. But a couple lab tests might give you a clue.First, though,..." + (show)
@oldkarl

Yes, to make it short. But a couple lab tests might give you a clue.First, though, understand that I have been diagnosed with all you have mentioned. Have you been tested for SERUM Free light Chain(c)? And done a 24-hour urine collection and had them studied for mis-folded protein? Amyloidosis? There are over a thousand mutations of this, and if a doctor tells you that you do not have any of it, without testing through Mayo, Stanford, Mass General, or other specialty labs, run, don’t walk, to the door. If they show ANY reading outside the reference range, get thee to one of these hospitals/clinics I mentioned for further high-tech testing. And contact Amyloidosis.Org for lots of info. And watch and listen to Mayo videos in their Grand Round series with Morie Gertz, Martha Grogan, Angela Disperienzi and others talking about diagnosis, treatment, etc. There is a lot of info available, so educate yourself. Any of the top labs will help you. And tel us how you do.

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You should know that your local doctor will probably send the tests to Rochester, and it probably will be covered by your insurance. You also should make sure your doc is working with Mayo or one of their trained persons to make sure the proper work is done. Mayo is happy to work that way.

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Amy | @larsona10 | May 17, 2017
In reply to @oldkarl "Yes, to make it short. But a couple lab tests might give you a clue.First, though,..." + (show)
@oldkarl

Yes, to make it short. But a couple lab tests might give you a clue.First, though, understand that I have been diagnosed with all you have mentioned. Have you been tested for SERUM Free light Chain(c)? And done a 24-hour urine collection and had them studied for mis-folded protein? Amyloidosis? There are over a thousand mutations of this, and if a doctor tells you that you do not have any of it, without testing through Mayo, Stanford, Mass General, or other specialty labs, run, don’t walk, to the door. If they show ANY reading outside the reference range, get thee to one of these hospitals/clinics I mentioned for further high-tech testing. And contact Amyloidosis.Org for lots of info. And watch and listen to Mayo videos in their Grand Round series with Morie Gertz, Martha Grogan, Angela Disperienzi and others talking about diagnosis, treatment, etc. There is a lot of info available, so educate yourself. Any of the top labs will help you. And tel us how you do.

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Thanks so much, Karl – I’ll review that with the Mayo Clinic. I know my doctor will be happy to work with them – he’s a real blessing, also, just like you. God bless!
Amy

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oldkarl | @oldkarl | May 17, 2017
In reply to @oldkarl "Yes, to make it short. But a couple lab tests might give you a clue.First, though,..." + (show)
@oldkarl

Yes, to make it short. But a couple lab tests might give you a clue.First, though, understand that I have been diagnosed with all you have mentioned. Have you been tested for SERUM Free light Chain(c)? And done a 24-hour urine collection and had them studied for mis-folded protein? Amyloidosis? There are over a thousand mutations of this, and if a doctor tells you that you do not have any of it, without testing through Mayo, Stanford, Mass General, or other specialty labs, run, don’t walk, to the door. If they show ANY reading outside the reference range, get thee to one of these hospitals/clinics I mentioned for further high-tech testing. And contact Amyloidosis.Org for lots of info. And watch and listen to Mayo videos in their Grand Round series with Morie Gertz, Martha Grogan, Angela Disperienzi and others talking about diagnosis, treatment, etc. There is a lot of info available, so educate yourself. Any of the top labs will help you. And tel us how you do.

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Larsona10, I also wanted to remind you that Mayo has a series of clinics and hospitals which covers part of Wisconsin. La Crosse is one of the towns. I suspect it would be helpful to check out the arrangements for these tests at those facilities. We have family in La Crosse, so we have visited there.

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irishlady | @irishlady | May 30, 2017

I had a sister who had a low grade fever for at least 3 years and it was only when she developed a brain tumor and was going through a series of tests that a Doctor discovered she had pheunomia in the tip of her lung that was there for at least 3 years that all other Doctors had missed.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | May 30, 2017
In reply to @irishlady "I had a sister who had a low grade fever for at least 3 years and..." + (show)
@irishlady

I had a sister who had a low grade fever for at least 3 years and it was only when she developed a brain tumor and was going through a series of tests that a Doctor discovered she had pheunomia in the tip of her lung that was there for at least 3 years that all other Doctors had missed.

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@irishlady wow, low-grade fever for 3 years. How is your sister now?

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Moderator
Colleen Young, Connect Director | @colleenyoung | May 30, 2017

@blindeyepug How did you appointment go last week? How are you doing?

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shoregal45 | @shoregal45 | May 30, 2017

Sounds like Chronic Fatigue Syndrome which I had years ago followed by the diagnosis of Lyme Disease. I ran a low grade fever most of the year it took for the meds to work. Good luck.

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blindeyepug | @blindeyepug | Jun 1, 2017

Hi. Blindeyepug here. I have tentatively been diagnosed with Lupus in addition to my other autoimmune disorders. I have just started taking methotrexate. I also take a prescription folic acid with it to help with side affects. At any rate, I am struggling to stay positive. I haven’t been on this site much because I still work part time, and I also care for my mother who has Alzheimer’s and Chron’s (she lives with me). My husband is helpful, but my mom prefers I help her. I will keep you informed as to how the medication works. STILL have low grade fever. But hope it will stop once medication kicks in more. Actually the worse thing of all is that I am just SO darn tired and exhausted – more than ever before. Thanks for all of the suggestions and good wishes. I truly appreciate the people on this site and how so many are willing to help in the midst of their own daunting problems.

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oldkarl | @oldkarl | Jun 1, 2017

Hi, @blindeyepug. I, also, take methotrexate. I started on the pills, but after a few years the doc switched me to injectable. I am very glad he did. I think it works better, and has seemed to slow down my other autoimmune stuff. It now appears I have Cystatin-C or perhaps Gelsolin.

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shoregal45 | @shoregal45 | Jun 1, 2017

Hi Blindeyedpug, I know how difficult these autoimmune problems can be. I had Lyme Disease and back in the early 90’s no one could diagnose it. I was seen by tens of specialists and when I finally wound up in the Emergency Room with migraine the neurologist recommended a doctor outside my area. Was I surprised when I was told it was Lyme. I was on antibiotics for one solid year and each time we stopped along the way the symptoms would resurface. I know how tired you feel. I had an elderly parent who required care and I had an important job so it was very difficult for me. Just be sure you are satisfied with your doctor and if not keep going until you get one who can help you. Are they sure it’s Lupus? Good luck to you.

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shreyasnani | @shreyasnani | Sep 11, 2018
In reply to @blindeyepug "I recently have been diagnosed with Lupus, also. I am 56. I have rheumatoid arthritis, fybromyalgia,..." + (show)
@blindeyepug

I recently have been diagnosed with Lupus, also. I am 56. I have rheumatoid arthritis, fybromyalgia, spinal stenosis and now Lupus. This apparently is what has been causing my recent months of low grade fevers. Well, on ward to figuring out how to fight this new illness.

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Hi I know this is a old thread, but I was just curious how they diagnosed your lupus when you mentioned earlier you had tested negative. I too have several autoimmune disorders and have been running a low grade fever for two months. They've been running tests, ruling things out, including RA, lupus and Lyme. Even saw oncologist because one Dr was sure it was lymphoma (I have a swollen lymph node on my neck.) I tend to think it's an autoimmune issue. I'm being referred to an infectious disease specialist next. I'm really feeling bad with the daily fevers and flu like feeling. On top of my fibro pain and fatigue, and I'm having thyroid issues with my Hashimotos too. Just curious how you were diagnosed with lupus, what other symptoms it causes and how you're managing these days with your health issues.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Sep 12, 2018
In reply to @shreyasnani "Hi I know this is a old thread, but I was just curious how they diagnosed..." + (show)
@shreyasnani

Hi I know this is a old thread, but I was just curious how they diagnosed your lupus when you mentioned earlier you had tested negative. I too have several autoimmune disorders and have been running a low grade fever for two months. They've been running tests, ruling things out, including RA, lupus and Lyme. Even saw oncologist because one Dr was sure it was lymphoma (I have a swollen lymph node on my neck.) I tend to think it's an autoimmune issue. I'm being referred to an infectious disease specialist next. I'm really feeling bad with the daily fevers and flu like feeling. On top of my fibro pain and fatigue, and I'm having thyroid issues with my Hashimotos too. Just curious how you were diagnosed with lupus, what other symptoms it causes and how you're managing these days with your health issues.

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Hello @shreyasnani — Welcome to Connect. I'm tagging @blindeyepug in case he did not see or receive an email notification for your post. When you are replying to or asking another member a question it's a good idea to use their member name to make sure they get an email notification of the post. The following Mayo Clinic page has some information that may help answer your question.

Lupus – Diagnosis and treatment
— https://www.mayoclinic.org/diseases-conditions/lupus/diagnosis-treatment/drc-20365790

Also, you might want to read through the following discussions on Connect that have posts discussing some of your symptoms.

Groups > Autoimmune Diseases > Hypothyroidism/hashimotos, endometriosis/liver lesions high ast/alt
— https://connect.mayoclinic.org/discussion/hypothyroidismhashimotos-endometriosisliver-lesions-high-astalt/

Groups > Autoimmune Diseases > Drug Induced Lupus
— https://connect.mayoclinic.org/discussion/drug-induced-lupus/

@shreyasnani have your doctors come up with any treatments that help you or have you found anything that helps?

John

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