Fatigue

[LauraK]

Does anyone else suffer from extreme fatigue with a flare up? I am on my third flare up this year, seems like I have had it constantly since December. I am HLB-B27 postive and have been dealing with iritis for the past 15 years. These past 6 months are really taking it out of me. I am exhausted and i just want to curl of on the chair and hide from my family.

Laura

[Mike Bartolatz]

inflammation causes associated fatigue when the immune system is in overdrive. are you now showing symptoms of arthritis? any rashes or digestive system problems, gastritis, ulcerative colitis or crohn's disease?
in some women the HLA B27 eye disease starts first and then when they get into their mid to late 30's to eary 40's they start getting symptoms of ankylosing spondylitis in their low backs, rashes start showing up from granulomas on their legs or intestines related to Crohn's or ulcerative colitis. or psoriatic arthritis etc.
if you have fibromyalgia ( many people have this or chronic fatigue syndrome) the fatigue is even more disabling.
sometimes vitamin D levels are low or vitamin B levels or Iron levels. so get in for some blood tests and appropriate treatment if any of these things are also present.

your iritis is of concern too. you need to start a systemic drug to stop this stuff from being recurrent or chonic in nature.
if you haven't tried NSAIDs yet, prescription strenght Celebrex, difusinal or naproxen work well to stop the recurrent nature of HLA B27 related uveitis before the uveitis starts causing other problems with the eye to occur. Cystoid Macular Edema frequently causes permanent vision loss and can lead to retinal bleeding or detachment as well as epiretinal membrane formation. Glaucoma from cells plugging the outflow part of the eye or from steroid use can develop too and in some people Cataracts. I lost vision to cataracts and when they operated I developed glaucoma frm the steroids needed to quiet my eyes down. major vison problems in my left eye and distortion and areas of blind spots in my right.

I hope this helps,
Mike

Please consider seeing an Ocular immunologist for evaluation and use of MODERN treatment in a corticosteroid sparing approach to treatment.

PS: the list is at http://www.uveitis.org in the PATIENT information section of the site or tell me where you live and I will suggest the BEST specialist near you for a consultation. you don't need a referral to get an appointment in most instances. you can EMAIL some of them as well if needed. theywill interact with your hometown doctors from afar so that you will most likely only have to travel a couple of times a year to see them. msb

[LauraK]

Hi Mike,

Thanks for the fast response. I don't know if I am showing other symptoms. I have had cronic hip and back pain, went to a Physiatrist, who sent me to 6 months of PT. My Primary always told me that she was not worried about the HLA-B27 unless I started showing other symptoms, one I had back pain she sent me to the Pysiatrist. I told the Phsiatrist about my iritis and HLA-B27 and she told me that she was not worried that I was too old (37) for a Immune issue to start showing. The PT did help my hip and back, my hips were very much out of alignment but I still have pain in both hips and my lower back.

I asked my opthamogist, last flair up, 2 months ago and he said he was not concerned. That flair did not respond to pred, and he put me on a different steroid which caused my eye pressure to go up so I had to take more drops and wean quickly from the steroid. The opthamologist that I saw yesterday (same practice, it varies who you see when you go in for an emergency) said that I should see a RA and gave me the name of one. I asked him on if I should see anyone else, he teaches at MA Eye and EAR, and told me that I should talk to my normal opthamolgist about it on Tuesday but that it couldn't hurt but he thinks most of my help at this point would come from an RA.

I have an appointment with a new Primary on Friday to start the ball rolling with the only local RA.

I don't think I have Crohns or colitis or anything like that.

Every time I mention fatique to my current (soon to be past primary) she would just run thyroid tests and call me normal.

I am south of Boston and I know I have amazing options in Boston. I just never thought that I needed it. I had always been able to manage it with my local opthamologists and kept it under control.

What do you think?

Thanks,
Laura

[Mike Bartolatz]

PLEASE go to C Stephen Foster MD at MERSI there in Boston. he started the Ocular Immunology and uveitis service at MEEI and he still practices there as well as being the top ocular immunologist in the World. Cambridge is just across the bridge from MEEI where Dr foster's new office is located. contact him through the website at http://www.uveitis.org for an appointment (phone number is present there for office at MERSI) or see his head resident Dr Hinkle if Dr Foster is lecturing out of town.
you have access to the BEST specialists and you don't have to continue with substandard care. I would have done anything to be able to see Dr Foster when I was going blind from uveitis complications.
Once you see a second ophthalmolgist, your insurance won't pay for a real specialist so don't go to anyone but Dr Foster.

your doctors are not knowledgeable about the immune system. most conditions in women occur when they are pre menopausal. then mid 60's they once again develop autoimmune diseases. it can take DECADES before markers appear in serum for many conditions so uveitis can be the first symptom in HLA B27 related disease and then forms of arthritis will show up later on.

DR Foster is also a board certified Rheumatologist. He will explain this stuff to you if you ask him about it.

wishing you the very best,
Mike

PS: I learned about this stuff by attending a conference in Boston back in 2004 by the invititaion of DR Foster. Dr Nussenblatt at the National eye institute spoke there, Dr Vangelder from Washington university St Louis spoke, DR Glenn Jaffe also spoke from UNC and DR Narsing A Rao spoke from Doheney Eye institute in Los Angeles.
I moderate learning about Eye disease forums for the Ocular Immunology and Uveitis Foundation that DR Foster developed 12 years ago as well as my online work here at iritis.org msb

[Mike Bartolatz]

http://www.mersi.com/