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.

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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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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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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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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@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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@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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@blindeyepug

@lisabeans Yes, I do have a rheumatologist. Her tests rule out Lupus. I already have rheumatoid arthritis, Sjogren’s syndrome and fibromyalgia. My sed rate was not high. All blood tests came out normal except low B12 and an elevated C3C (whatever that is). Anyway, scans of chest, abdomen and pelvis came back clear. However, I continue to have low grade fever (for over two months between 99.8 and 101.2) and extreme fatigue – more than usual. My primary doctor doesn’t know what could be causing it, either. She took some blood cultures on Saturday and I have yet to get those results back. But they have ruled out any type of hepatitis, lupus, any sexually transmitted disease (which I didn’t even know they were testing for, but it was clear!) and certain cancers. So, I guess I will perhaps get a second opinion. Very frustrating. I was really adjusting and moving forward with my various autoimmune disorders and my spinal stenosis, but then this happens! Now I am frustrated, tired and anxious once again. Thank you to all who have replied. I greatly appreciate your input and thoughts.

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Dear blindeyepug my name is Beryl…..and I have just read you post,,,forgive me if I am a bit behind on this…..
It seems to me that a lot of us seem to go through a sort of torment before someone gets the reason for our illness and starts,to put you in the right slot…..then apart from having the thing you are at least understood…..difficult with people,that can't understand and think you are shamming,
Is it,possible that you could go to a clinic that deals in difficult cases, such as the Mayo clinic…..I have not been to one but I am being looked after by one and they don't think you are imagining your illness ……I have been attending one of these hospitals for ten years now, the nature of the beast means mine is not going to go too soon…..but I live in great hopes that it will one day…..keep,your chin up and look for the right kind of help……these are the experts……..good luck ….

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@beryl @blindeyepug Please, I would suggest something. First, to get with a top clinic like Mayo, first things first. Get yourself a great team of local docs. not to make a diagnosis, but to reach out to Mayo. Mayo must be convinced that, even if it is their own lab that calls it, nothing is to be believed that the doctor does not see with their own eyes. A strong team of local doctors carries more weight. Without that, you might as well be asking for a diagnosis from a resort operator. Frankly, it will probably be difficult, perhaps even impossible.

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Thank you oldkarl that is very good of you but I really am being looked after very well……I have Polymyalgia Rhumatica and it is slowly getting better but it goes,up and down , it depends how much I do in a day …..thank you again Beryl

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