Author Topic: Overwhelmed . . . and now, maybe Lupus too!  (Read 203 times)

SjoGirl

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Overwhelmed . . . and now, maybe Lupus too!
« on: May 18, 2019, 08:00:46 AM »
I recently wrote about feeling overwhelmed by having so many things wrong with me. Even though I can function well it's disheartening to think about so many issues to be battled and it's exhausting. I have literally been much more fatigued and got quite ill the other night.

My face looked like a battlefield, which it turns out may have been lupus rash. I saw my PA yesterday and that was her thinking so she ordered bloodwork to check. Results so far suggest that it might indeed be Lupus (low WCB, low ABS neutrophils and low ABS lymphocytes low C3, low creatine (just), low RBC (it's always just a bit low). The ANA will not be back until next week.

This was a diagnosis that should have been made a decade ago when I saw the first rheumatologist that I visited. I know that because I went back to that clinic last year to try to participate in a clinical trial, the intake nurse said you had all the signs of Lupus. I said well, guess what, you never told me. They called and said all that was wrong was that I had low sodium.

I do still see my rheumatologist, at least until he leaves for the VA in mid-June then I will be handed off to another doc. Until then all I can do is keep putting one foot in front of the other and pray.

Thanks for listening.
Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.

araminta

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Re: Overwhelmed . . . and now, maybe Lupus too!
« Reply #1 on: May 18, 2019, 09:44:31 AM »
I'm so sorry to hear you might have this, Sjogirl.   It's horrible waiting for results to come through.   I think a lot of the advice for Sjogrens is the same for lupus - pace yourself, find ways to relax, healthy diet etc.   The better you look after yourself, physically and mentally, the better you will cope.    And it doesn't have to be a severe disease, it can be mild.   But I hope that the results do not show lupus.

Keeping my fingers crossed for you.
Dry eyes (MGD), nose, mouth, labyrinthitis, rashes, dry skin (occasional eczeme), mouth ulcers, constant but fluctuating fatigue.  Blood tests and Schirmers negative,no Sjogrens dx yet.   Flax oil, multivitamins,  saline nasal spray, Hylo forte, Lacrilube, organic castor oil for eyes, moisturisers.

irish

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Re: Overwhelmed . . . and now, maybe Lupus too!
« Reply #2 on: May 18, 2019, 11:55:34 AM »
Lupus can be enormously hard to diagnose so if they did some tests years ago and nothing was positive that is all one can do.

My Dermatopathologist told me a few years ago that when he first saw me in 2002 he had me pegged for lupus and did the tests and I was negative. He has watched me all these years still thinking positive blood work would occur and it hasn't./

Then my Immunologist who first saw me in 2006 said that I had all the markings of a lupus patient but not much red face. He did all the blood work over the years and always negative. I am at that clinic every month for IVIG plus forwent drs appointments and they see me a lot so know what my health is.

I not have 5 autoimmune disease plus more non autoimmune diseases that are giving me fits....but no lupus yet. All I can say is that you need the symptoms treated no matter what the diagnosis. If the Methotrexate, Cellcept, etc don't help then it is time to have then or the neuro check out the other biologics or whatever new drugs there are on the market. Sometimes we get in a flare or whatever you want to call it and we are pretty miserable for a time. Have they done Prednisone?

You may have to find another opinion to see if you can find meds. Please try to get rested up before you start hunting for a new doctor caused I know how it goes. We get so out of sorts and tired, anxious trying to get help that it is sometimes hard to even express how lousy we feel. I know that doctors can sort of blow us off at times. Soooo frustrating, I know the drill.

Have you got a patient advocate at any medical clinic that can help you get your story out and help you get help. Autoimmune patients can be so miserable (me included) that we can hardly express or even have boy language that shows how much we are suffering. You have been suffering for so long that I know this needs to be addressed. Have you access to a therapist such as pain therapist, etc who could advocate for you. If I remember correctly you have lots of neuropathy which sure is another way of saying pain.

Hope you can get some help. Keep us updated. Irish

Carolina

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Re: Overwhelmed . . . and now, maybe Lupus too!
« Reply #3 on: May 19, 2019, 04:36:38 AM »
Dear SjoGirl,

My heart goes out to you. Irish has the best advice since she speaks from experience.  She truly knows your misery.

Your' list' is already full, and there is no relief  It is truly unfair.

And yet......I know you will face this, SjoGirl.  You are an inspiration to us all.

Love, Elaine

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SjoGirl

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Re: Overwhelmed . . . and now, maybe Lupus too!
« Reply #4 on: May 19, 2019, 12:03:21 PM »
Hi all,

Thanks for your words of support and wisdom. Here's what I can tell you:

1. I would probably be dead or on disability were it not for my fabulous PCP, who also has a top-notch PA. It was the PCP who realized that I had systemic issues 11 years ago and sent me to doc after doc until I got the help I needed.

2. My rheumatologist for the past 2 to 3 years has been marvelous, it's just that he is leaving to take a dream job with the VA (he's a veteran and from a military family so wants to help vets. For all I know the new rheumatologist to who he is referring me will be marvelous I just don't know her.

3. The neurologist is not useful and I won't bother with him unless I need to.

4. I've been on Imuran for about 1.5 - 2 years and it has helped enormously. My RA has been well under control.  My OA pain has been helped by the Celebrex that he put me on. I also have to take PPI daily and Evoxac. I have occasionally taken Medrol for a flare because I can't tolerate Prednisone. I also can't take Plaquenil (tried it twice, I developed seizures and multiple other side effects) and also can't take Mexotrethate (it nearly killed me).

The bloodwork came as a surprise as it had been fine since taking Imuran. Oddly, though maybe not so, I wonder if the change is because I started exercising more. I have read that exercise can actually trigger changes in how the bone marrow works and I've had issues with my bone marrow in the past. When I had a bone marrow biopsy years ago I had zero storage iron, turned out it was from my AIs.

The other possible culprit is heat and/or sun. We've had a beautiful spring and I've been out walking a lot. When I first got sick I could not stand to be in the sun, for years I was fine, now I wonder if my issues are back (maybe from the meds?).

Thanks again all, I'll keep you posted.

Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.