Sedimentación Rate elevated, Proteína C Reactive elevated for 3 years

Posted by Pandita2011 @ailenbm77, Jun 22 8:42am

Good morning, I have had the sedimentation rate and the
CRP elevated for more than 3 years, Sedimentation at 103 and Protein at 56. It all happened after an episode of intracranial inflammation that ended in neuroretinitis with permanent damage to the optic nerve of the
left eye. I was diagnosed with polyatargia, uterine myomas, nodules in the lungs, a benign cyst in the left breast, nemonitis, EPOC, hepatomegaly,
Until today, and after 6 specialists and two rheumatologists, no one knows what I have, I forgot to mention chronic anemia, as low as 6 that I need a blood transfusion. The ANA tests are negative, all this time, the
altered lupus anticoagulant since
day 1, but my rheumatologists have told me
Chronic inflammation, please, does anyone on this site have any idea what this is about? Blessings thousands.

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

@ailenbm77 I’m sorry you’re having such a time getting diagnosed. Since no one at Mayo Clinic Connect is a medical professional, we cannot diagnose. But members can give you advice based on their own experiences as they have done here. You have often some good suggestions and I’m sure more will come.

REPLY

Your sed rate and CRP are at a quite high level, indicating chronic inflammation, which you know. The combination of your problems you have experienced certainly points to an autoimmune disorder in the rheumatology family. Lupus and rheumatoid arthritis are the most common diseases. Some people with these conditions are seronegative, meaning the usual blood tests to detect these diseases are negative even though you have the condition
( about 5% in lupus and up to 40% in RA) So the.diagnosis can be made by other means. If a rash occurs, a skin biopsy can diagnose lupus. If urine or kidney function is abnormal a kidney biopsy can diagnose lupus. For RA, xray or MRI of a painful joint might show joint erosions. The inflammation causes cytokine release, which causes the fatigue. Your anemia from inflammation is severe. Under the circumstances, treatment can be given even without a specific diagnosis. Chronic inflammation can cause cardiovascular disease as well. It would seem prudent to discuss with your rheumatologist getting some of these other tests, if appropriate, making sure all blood tests for autoimmune diseases have been done and then asking for treatment, perhaps prednisone initially to see how you respond and feel. The Mayo Clinic would be helpful if you don’t feel your workup has been adequate. I hope you get a diagnosis soon and treatment, as your illness seems rather severe and I believe it is dangerous to let this level of inflammation continue.

REPLY

In reading your history translations is there polyarteritis and pneumonitis
that did not transcribe well.? I don’t know what ENOC means.
The lupus anticoagulant and lung nodules may be significant in diagnosis if they are all related. Hoping you can access a university or multi specialty
clinic for specialists to coordinate. Have you had any steroids or disease
modifying therapies.? ESR and CRP are indicative of abnormal cytokine
levels.

REPLY

I have PMR and the pain, CRP levels and fatigue certainly align with that. GCA can impact vision and there is a high correlation between the two (ie. a high % of PMR sufferers also have GCA)

REPLY
@seniormed

In reading your history translations is there polyarteritis and pneumonitis
that did not transcribe well.? I don’t know what ENOC means.
The lupus anticoagulant and lung nodules may be significant in diagnosis if they are all related. Hoping you can access a university or multi specialty
clinic for specialists to coordinate. Have you had any steroids or disease
modifying therapies.? ESR and CRP are indicative of abnormal cytokine
levels.

Jump to this post

Good morning, I was only treated at first with Prednisolone infusions for grade 4 optic edema that ended in optic neuroretinitis. I was diagnosed with chronic inflammation, polyatargia and EPOC apart from everything else I explained. Blessings, thank you for responding.

REPLY
@slkanowitz

Your sed rate and CRP are at a quite high level, indicating chronic inflammation, which you know. The combination of your problems you have experienced certainly points to an autoimmune disorder in the rheumatology family. Lupus and rheumatoid arthritis are the most common diseases. Some people with these conditions are seronegative, meaning the usual blood tests to detect these diseases are negative even though you have the condition
( about 5% in lupus and up to 40% in RA) So the.diagnosis can be made by other means. If a rash occurs, a skin biopsy can diagnose lupus. If urine or kidney function is abnormal a kidney biopsy can diagnose lupus. For RA, xray or MRI of a painful joint might show joint erosions. The inflammation causes cytokine release, which causes the fatigue. Your anemia from inflammation is severe. Under the circumstances, treatment can be given even without a specific diagnosis. Chronic inflammation can cause cardiovascular disease as well. It would seem prudent to discuss with your rheumatologist getting some of these other tests, if appropriate, making sure all blood tests for autoimmune diseases have been done and then asking for treatment, perhaps prednisone initially to see how you respond and feel. The Mayo Clinic would be helpful if you don’t feel your workup has been adequate. I hope you get a diagnosis soon and treatment, as your illness seems rather severe and I believe it is dangerous to let this level of inflammation continue.

Jump to this post

I greatly appreciate your explanation, it has certainly been a long wait and it still continues to this day. Even I, who know nothing about medicine because I studied finance, see the results compatible with many diagnoses. The rheumatologists I have seen only expect a positive ANA. I just changed my primary doctor and I will definitely seek second opinions, because I am tired of feeling so sick. Blessings.

REPLY
@ailenbm77

I greatly appreciate your explanation, it has certainly been a long wait and it still continues to this day. Even I, who know nothing about medicine because I studied finance, see the results compatible with many diagnoses. The rheumatologists I have seen only expect a positive ANA. I just changed my primary doctor and I will definitely seek second opinions, because I am tired of feeling so sick. Blessings.

Jump to this post

I hope your new PCP will be able to help and maybe connect you with a more supportive rheumatologist. If you’re over the age of 50, I would definitely ask about Polymyalgia Rheumatica (PMR). As @kathyv66 mentioned, PMR commonly occurs with a condition called GCA, which can affect the eyes. The treatment is long-term presnisone, so it’s possible when you originally took prednisone it helped with the pain but didn’t completely resolve it.

REPLY

Good morning, for the first time in three years, positive antibodies have just come out. Srjogren SSA and SSB, also Thiroid Peroxidase Antibodies came out, these same laboratories were done by my new doctor, even so, ANA continues to come back negative. My new doctor told me that we will definitely get a second opinion because they have been treating a number and have not treated me, due to the permanent inflammation for a long time and no one has given treatment for it, for he simple fact that they have only been waiting for a positive ANA.

REPLY

There’s a more sensitive test that checks for many of the common autoimmune diseases called Avise CTD, connective tissue disease. It is much more sensitive and may show positive results on tests that standard tests report as negative like the ANA. I would definitely ask your new rheumatologist to run that blood panel. I like your new doctor’s opinion that your inflammation should be treated, and his comment that your lab numbers are being treated instead of your clinical situation, ie YOU!

REPLY
@kathyv66

I have PMR and the pain, CRP levels and fatigue certainly align with that. GCA can impact vision and there is a high correlation between the two (ie. a high % of PMR sufferers also have GCA)

Jump to this post

I would add that Idiopathic Anema is also associated with PMR (poly myalgia rheumatica).
Ask your rheumy if PMR should be considered. It is a default diagnosis since there is no confirmation test available.
There is an entire Mayo Connect group dedicated to PMR. You might want to check it out.

REPLY
Please sign in or register to post a reply.