Author Topic: Sed rate  (Read 264 times)

burntout77

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Sed rate
« on: October 08, 2017, 06:41:38 AM »
Does your sed rate have to be increased for you to be in a Sjogren's flare? I guess I didn't know that, never heard that until a doctor mentioned it. I never seem to have an elevated sed rate when looking at blood test results. It usually is a 7.  But yet I have many times where my eyes, mouth and bowels can dry up in an instant when I feel I am in a flare. And my nerves are shot and the fatigue is overwhelming. I wonder if my sed rate is elevated then too? And I not know it. The doctor says that I can have dry eyes and mouth all the time, when not in a flare. According to the sed rate on my test results I evidently don't ever have flares, if that is the case. I don't go to him anymore, however. I was diagnosed with Sjogren's in 2014 and been following the research on it pretty closely; guess I must have missed that sed rate thing altogether. My mother has rheumatoid arthritis and always has a somewhat elevated sed rate. I don't seem to have the rheumatoid arthritis so I am thankful for that. I guess I always thought the sed rate thing belonged with the rheumatoid arthritis, and I know some people with Sjogren's also will have rheumatoid arthritis and in that case they can have elevated sed rate at times.

Hoping that someone can clarify this for me, thanks so much for your help in this!
Positive ANA 1:320  Sjogren's Syndrome, Trigeminal Neuralgia, debilitating chronic fatigue, Hydroxychloroquine, Pilocarpine, Prilosec, Tegretol, Systane Ultra eye drops, Lorazepam.

irish

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Re: Sed rate
« Reply #1 on: October 08, 2017, 02:07:42 PM »
The way our blood work is I doubt that we have to have any elevated blood work to be in a flare. Our blood work is fickle as it can be negative or positive for the Sjogrens markers and we can still have symptoms. I have been suffering for over 50 years and not had any positive blood work until 2005 which was 2 years after bein diagnosed with Sjogrens.

I have never had an elevated sed rate in my life and I have 5 diagnosed autoimmune diseases. The best thing is to just get treatment and not be too concerned about the blood work. We can be ill whether positive or not and we need treatment for the symptoms. Find a doctor who thinks this way. Irish

gurs

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Re: Sed rate
« Reply #2 on: October 09, 2017, 06:17:22 AM »
Im dealing with this right now..have been extremely ill for the past 6 weeks. My SED rate never elevated, but now it is. They dont know if its autoimmune related or infection, which the sed rate can be in either case. I feel like I have infection somewhere, but they cant find it. Infections can cause us to have basically the same symptoms as a sjogrens flare as well. I guess if you think you dont have an infection, then maybe its an SS flare? I dont run a temperature, even though I feel feverish. A few of my docs told me that I wont because of my other immune system disorders etc. Im also on daily steriods, so it makes it super hard. I just wish they had better testing for all this.

good luk
52 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements

irish

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Re: Sed rate
« Reply #3 on: October 09, 2017, 03:14:10 PM »
I have been through that many times also and it is extremely frustrating. My immunologist had me on IVIG for my myasthenia and it was also supposed to help my low t-cells and the infections. I continued to have infections that were hard too find so my doc just put me on antibiotics every time. AI bet I was on antibiotics from 8-10 times a year and sometimes more. This went on for about 10 years and I am also still on the IVIG. About 2 years ago I quite having the infection symptoms and am hardly on any antibiotics anymore. The thing I deal with now is the MRSA that sort of hangs around off and on in nasal cavity so use Muropirocin nasal irrigations periodically. This is the same as Bactroban. If I ever get bad infection it will be IV antibiotics as I am allergic to so many and have been for years. Of course, the MRSA is resistant to almost all the oral antibiotics. Lile is never boring with autoimmune disease.

And, yes, with the autoimmune disease, low t-cells and prednisone you have a hard time raising a fever so the sweats and chills are pretty much your indicator. Also, the rotten sickly fatigued feeling one gets with an infection. I wil be thinking of you....good luck. Irish

gurs

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Re: Sed rate
« Reply #4 on: October 10, 2017, 08:14:25 AM »
Irish, just curious about the antibiotics that seem to  work well for you.  This last month has been an absolute nightmare as you know I had the boil about a month ago and they told me it was not bacteria however I saw some green pus coming out of the boil that was healing and I had my doctor lanced it again and it came back negative in the meantime still deathly sick losing weight and feeling ill been to so many doctors nobody knows what's going on and  now my internist called me yesterday and one of the cultures that they let grow longer from last week shows a slight positive for staff I'm even wondering if it's in my bloodstream I made him do the blood culture yesterday because I don't trust anything anymore they don't realize how sick I am I do not run temperatures and I have an immune system very similar to yours with the Low t cells.  Went to ER yesterday and now I have a massive sinus infection on top of it .  Going to lose my mind it also looks like my  Lance boil might be in Factive going to see the infectious disease doctor tomorrow morning I just have a problem with my stomach tolerating any of these anabiotic's I wonder work what works for you.  Sorry to ramble but I've been so sick and I'm not getting any answers and I know you might be able to help me as you usually do.  Nobody seems to understand that I don't want noon patients and the ones with immune system disorders do not always show like other patients as well it's very frustrating

 Thanks again everyone  sorry for all the typos as I am using my voice command
52 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements

irish

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Re: Sed rate
« Reply #5 on: October 10, 2017, 05:49:08 PM »
I have no oral antibiotic that works for the staph or MRSA anymore. If I get an infection of staph I will need IV antibiotics. Good thing you are seeing immunologist. Make sure the doc does a culture of your nasal passage as I would bet you have staph in your nose with resultant sinus infection.

If it was me I would not mess around with oral medication and ask the doc about IV medication. You may need to be hospitalized but that would be good so that you would have assistance and observation during the first days of the IV infusions. I have no doubt that you are feeling sick to your very core as that is the way these deep infections feel. If you get worse before the doctors apt make sure to go to emergency room. Let us know how thing plays out. They may want to do oral antibiotics and a certain amount of IV antibiotics. They sometimes use several different types of antibiotics. Generally the blood level of antibiotics can't be reached on the oral antibiotics alone. Good luck. Irish