1. < Autoimmune Diseases

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.

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whyus | @whyus | May 11, 2017
In reply to @blindeyepug "@lisabeans Yes, I do have a rheumatologist. Her tests rule out Lupus. I already have rheumatoid..." + (show)
@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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My dermatologist told me that blood tests for lupus are hard to test +. She said the skin biopsy was bitter-sweet. I guess we just have to keep searching. I stay so tired. I could sleep all day.

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Kanaaz Pereira, Connect Moderator | @kanaazpereira | May 14, 2017
In reply to @lisabeans "Have you been to a rheumotologist? If so, I would get a second opinion. Some autoimmune..." + (show)
@lisabeans

Have you been to a rheumotologist? If so, I would get a second opinion. Some autoimmune diseases give you low grade temps (lupus). I would just keep researching and see if you can get another opinion. You know your body better than everyone else. I see you are avoiding pain medicine, but are you taking anything? RA will just get worse and attack your joints if you don't take anything to stop it. I hope you get some answers. We are all here to support you.

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Hi @whyus,

Welcome to Connect. Thank you for joining this discussion and for sharing bit about yourself. You mentioned having lupus e; did you mean Systemic lupus erythematosus (SLE)?

Here is some information from Mayo Clinic that you may wish to view: http://mayocl.in/2pJQ13K

I'm hoping @seesawer @sandpiper09 @jewel8888, will also join in with their insights

@whyus are you taking any medications presently? May I ask if you also have rheumatoid arthritis?

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blindeyepug | @blindeyepug | May 15, 2017

Looks like they found an answer. Now I have Lupus to add to everything else. I am really depressed.

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blindeyepug | @blindeyepug | May 15, 2017
In reply to @lisabeans "Have you been to a rheumotologist? If so, I would get a second opinion. Some autoimmune..." + (show)
@lisabeans

Have you been to a rheumotologist? If so, I would get a second opinion. Some autoimmune diseases give you low grade temps (lupus). I would just keep researching and see if you can get another opinion. You know your body better than everyone else. I see you are avoiding pain medicine, but are you taking anything? RA will just get worse and attack your joints if you don't take anything to stop it. I hope you get some answers. We are all here to support you.

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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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1 reply
Kanaaz Pereira, Connect Moderator | @kanaazpereira | May 15, 2017
In reply to @lisabeans "Have you been to a rheumotologist? If so, I would get a second opinion. Some autoimmune..." + (show)
@lisabeans

Have you been to a rheumotologist? If so, I would get a second opinion. Some autoimmune diseases give you low grade temps (lupus). I would just keep researching and see if you can get another opinion. You know your body better than everyone else. I see you are avoiding pain medicine, but are you taking anything? RA will just get worse and attack your joints if you don't take anything to stop it. I hope you get some answers. We are all here to support you.

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Hi @blindeyepug,

At times life throws us some serious curve-balls, and I want you to know that the Connect community is here for you; you are not alone.
@blindeyepug, did your doctor specify whether you have a certain type of lupus?

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danybegood1 | @danybegood1 | May 16, 2017
In reply to @lisabeans "Have you been to a rheumotologist? If so, I would get a second opinion. Some autoimmune..." + (show)
@lisabeans

Have you been to a rheumotologist? If so, I would get a second opinion. Some autoimmune diseases give you low grade temps (lupus). I would just keep researching and see if you can get another opinion. You know your body better than everyone else. I see you are avoiding pain medicine, but are you taking anything? RA will just get worse and attack your joints if you don't take anything to stop it. I hope you get some answers. We are all here to support you.

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@blindeyepug , Laura? Hi, i hope you dont mind my butting in. I missed you. Are you ok?
Judy

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oldkarl | @oldkarl | May 17, 2017

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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6 replies
blindeyepug | @blindeyepug | May 17, 2017

Thanks so much oldkarl! I have not had a 24 hour urine collection. Don't think I have been tested for SERUM Free light Chain. I go to my doctor on Tuesday (May 23) and will ask about such tests. I will also look up info you mentioned and the videos. I greatly appreciate your help. I am dragging myself out of the depression and beginning to be more proactive - as I have done for my other autoimmune diseases. I will keep you informed, but will probably be after I see my doc. Thanks again!

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oldkarl | @oldkarl | May 17, 2017

Just a bit more for you. I have many dis-eases, and am learning they are all springing from or piggybacking on my amyloidosis. Cancers: prostate, bladder, urethral, kidney, liver, pancreas, stomach, lung, brain, thyroid, melanoma. Cardiac arrythmia, (tachy, low voltage) rheumatoid and psoriatric arthritis, eyelid purpura, Barrett's esophagus, edema, cornea grid, perhaps even the diabetes 2, Sjogrens, Sicca, PN, sleep apnea, gastric blockage. Sounds similar, to me. The trouble is that my doctors seem to be trying to protect the misfolded protein from me instead of attacking it with a strong suspicion of guilt. It is uncurable, but not untreatable, except by doctors who refuse to do the testing and treating.

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oldkarl | @oldkarl | May 17, 2017
In reply to @lisabeans "Have you been to a rheumotologist? If so, I would get a second opinion. Some autoimmune..." + (show)
@lisabeans

Have you been to a rheumotologist? If so, I would get a second opinion. Some autoimmune diseases give you low grade temps (lupus). I would just keep researching and see if you can get another opinion. You know your body better than everyone else. I see you are avoiding pain medicine, but are you taking anything? RA will just get worse and attack your joints if you don't take anything to stop it. I hope you get some answers. We are all here to support you.

Jump to this post

Lupus is a mutation of mis-folded protein, otherwise known as amyloidosis. My sister has it.

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