Lupus Questions - Feeling Unwell

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00hope00
Regular Member


Date Joined Nov 2017
Total Posts : 20
   Posted 11/28/2017 9:16 PM (GMT -6)   
Hello all,

I am here for some advice and insight from others who might have experienced something similar to me…I apologize for the long post in advance. I am a 34y old female with no children.

I returned from my 3 week honeymoon on Oct 16th and from the 12th I actually started feeling pretty bad. Initially, it started off with severe chest pain and shortness of breath exacerbated by mild walking. I was admitted to the hospital and after a host of tests, I had an Idiopathic Sinus Tachycardia diagnosis and some other questionable test results, but not enough to alarm the attending cardiologist. I was discharged home with Beta-Blockers. The pain persisted, but it had changed to having the pain at rest, when sleeping, breathing, eating, moving, and radiating down my left arm, neck, and back. I had several ED visits – probably every other day as I was feeling worse, with weakness, severe nausea, fatigue, joint pain, abdominal pain and weight loss of 17lb in a month. I was only able to sleep elevated due to pain laying down. No one provided any insight and some ED docs labeled me with anxiety etc. After 20ish ED visits, I was sent to an Internal Medicine MD who ran some tests for autoimmune diseases as he mentioned it sounded inflammatory in nature, and my values are as follows:

ANA: 1:160
AntiDsDNA: 23
C3 &C4: lowest value of normal - right on the cusp
CRP: Normal
ESR: Pending

Prior to this event, I’ve had random episodes of unwell-ness, but was able to bounce back and continue life as normal. In the last four years I’ve had body rashes and hives (painful and itchy), kidney issues, oral sores, sore and swollen red knees, the face butterfly rash, unexplained fever of 38.2 for a month or so at a time, abdominal pain/burning and bloating, back and hip pain, elbow and wrist pain, and unbelievable neck and head pain. The headaches feel like pain near the base of my neck, which is excruciating. It sometimes feels like shooting sharp electrical shocks. In those moments I cannot concentrate or think at all and almost feel like I’m about to have a seizure. Before these four years, I was healthy and never had any health problems. Throughout the last four years I just thought these symptoms were part of aging, or life stress, or body fluctuations. I lived life as normal and didn't dwell on them because they seemed to improve. But now, I am home bound. It is my longest episode and the symptoms with the bloodwork align with a possible autoimmune diagnosis as per the Internal Medicine MD… so here are my questions for you guys:

1-How quickly do your rashes appear and disappear? How long do they last? Do they feel burning sometimes?
2-What about pleurisy or pericarditis? Can it go away in a day or so or does it normally last days/weeks?
3-Can you feel bad for part of the day, but good for the other part? Can Lupus symptoms fluctuate and change drastically thru out the day so quickly?
4-Can your knees swell for just a few hours and return to normal after for no reason?
5-Can an AntiDsDNA value ever change back to negative…?
6-Does an ESR have to be elevated to confirm Lupus flare? My GP said that the CRP and ESR have to be elevated to confirm flare, but I read online that it's not the case always...
7-Also, can I take NSAIDS daily as preventative measures for the inflammation? Is that something normal?

I guess I’m just wondering if what I am feeling is in line with something like Lupus. Some of my symptoms have lasted a whole entire month with no relief, while others change throughout the day. It’s so incredibly odd…

In advance, I really do appreciate your time for reading and posting. I am suffering with so much anxiety from this having lasted 6 weeks with no real answers, that I am desperate for relief. I am waiting to see a Rheumatologist to discuss further. Any questions I should be asking?

Thank you kindly to all. Sending health to everyone.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7699
   Posted 11/29/2017 10:11 AM (GMT -6)   
00hope00 said...

1-How quickly do your rashes appear and disappear? How long do they last? Do they feel burning sometimes?
2-What about pleurisy or pericarditis? Can it go away in a day or so or does it normally last days/weeks?
3-Can you feel bad for part of the day, but good for the other part? Can Lupus symptoms fluctuate and change drastically thru out the day so quickly?
4-Can your knees swell for just a few hours and return to normal after for no reason?
5-Can an AntiDsDNA value ever change back to negative…?
6-Does an ESR have to be elevated to confirm Lupus flare? My GP said that the CRP and ESR have to be elevated to confirm flare, but I read online that it's not the case always...
7-Also, can I take NSAIDS daily as preventative measures for the inflammation? Is that something normal?


1. Rashes and other symptoms often come/go on a day to day basis without much rhyme or reason.
2. Not sure, but I think this usually lasts longer and doesn't go away without treatment.
3. Yes, Lupus is very unpredictable. See 1. That said, I generally found things change day to day, not within a single day. But every presentation of Lupus is different.
4. Yes, see 1 & 3.
5. Yes.
6. No, they don't have to be elevated. Take what a GP and/or an internist say with a grain of salt. They may know a little about Lupus, but they are NOT qualified to diagnose or treat it -- that's the rheumatologists job!
7. You could, but make sure you read the warnings on the NASIDS bottles. Not good to take too much all the time, you can (permanently) damage liver & kidneys.

When is your rheumy visit? In the meantime, read our post Lupus 101 - it has lots of information including lists of what to take to the Dr and hints on what to ask about. Let us know if you have more specific questions.

Best wishes.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

00hope00
Regular Member


Date Joined Nov 2017
Total Posts : 20
   Posted 11/29/2017 6:26 PM (GMT -6)   
Hello again,

Thank you to all who have answered smile

So I have my appointment with the Rheumatologist on Dec 4th Monday. I received my ESR as well and it was normal...I just don't understand it, but like it's been mentioned, it can test negative. I wish I would understand the physiology behind it all.

I'm feeling a bit better today in terms of the pain, but I've tried changing what I eat as I read online that can help as well. I basically can only eat pureed food so...I also started some vitamins so here's to hoping to more improvement. I'll keep this discussion posted in case someone else can benefit from this experience down the road too. Plus, I really appreciate the support. Grateful.

One more question:

Is it worth looking into a food sensitivity test? Would that be something to do to help an autoimmune disease? My GP said it's not worth it, but I noticed that foods have affected me more so in the last few years than before...I'm just wondering if others have benefited from taking this test?

Thank you all for your time and thoughts. Hope your night is good.

beave
Veteran Member


Date Joined Mar 2007
Total Posts : 1669
   Posted 11/30/2017 5:11 PM (GMT -6)   
Food sensitivity tests aren't reliable. The skin prick testing for food allergies has lots of false positives; and the IgE blood tests just show you have antibodies, but that doesn't mean it's necessarily an allergy or intolerance.

The best to do, really, is to eat as healthy/well as you can. If you find certain foods bother you, avoid them. Do a food diary if necessary and track what you eat and how you feel. Obviously, if you have an actual allergic reaction to a food, that's important to know and you have to avoid that food.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7699
   Posted 11/30/2017 8:33 PM (GMT -6)   
If you are diagnosed with Lupus, you might want to look into reading the commonly called "lupus bible" - the book "The Lupus Book: A Guide for Patients and Their Families", by Dr. Daniel Wallace. It makes reference to a few foods that aren't great for Lupies - such as legumes. And most people these days are aware of the fact that sugar is bad for any inflammation.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

00hope00
Regular Member


Date Joined Nov 2017
Total Posts : 20
   Posted 11/30/2017 10:38 PM (GMT -6)   
Hello,

@beave thanks for the input..I'll leave the sensitivity tests aside. Wish there were more reliable tests out there.

@lynnwood - I bought the book on iBooks and started reading it already. I usually eat very healthy. My weight is 135lb and am 5'8.. Except I have gone down to 120lb in the last 6 weeks thru out this episode. All I can eat are soups and puréed foods.

I want relief so bad...so sad it takes so long for diagnosing..

Hope you are all having a good night.

00hope00
Regular Member


Date Joined Nov 2017
Total Posts : 20
   Posted 12/6/2017 11:23 AM (GMT -6)   
Hello all,

I wanted to update the thread as I have been officially diagnosed with Lupus. I saw the Rheumatologist on Monday and I started Prednisone 20mg/day and Planequil 200mg/day. I am hoping so badly to feel better. The fatigue, joint pain, pleurisy, and overall un-wellness is very hard to deal with. What I also find is that I am so sad. I feel like I am constantly on the verge of a breakdown from the sadness of losing my quality of life. I feel so restricted and badly want to return to work…I feel so unproductive...

I was wondering if others have shared these feelings and if they received treatment for the mental toll the disease brings…I almost feel like I am falling into depression. And I am always scared and worried about being home alone when I feel so unwell. If you have received treatment for it, what worked for you? I’d like to work on feeling better, but right now I just can’t see the light at the end of the tunnel….I was hoping others could share how they overcame their initial diagnosis and dealing with the flares…I feel lost.

Any insight would be very much appreciated…thank you.

P.S. My CRP and ESR were normal, but the Rheumatologist stated these values can be normal and still have a flare (Just wanted to add this for others looking for different experiences).

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7699
   Posted 12/6/2017 12:39 PM (GMT -6)   
Yup, Lupus can be a horrible disease to deal with, especially at first. I lost so much - my career, my business, my social life. Had to close my business (cancel important contracts, lay off employees) and drop out in the very last stages of my PhD. I was a marathon runner.

For me, it got even worse before it got better. I had major cognitive involvement and couldn't even follow a 20-minute sit-com. Slept 18-20 hours a day, couldn't drive 'cause I'd get disoriented at the end of my street, despite living here over 30 years. Couldn't stand for long, couldn't balance on one foot.

Was feeling pretty darn useless, that's for sure! Plus the depression of loosing everything you value in life, your self-worth, etc. And the tiredness from the disease feeds into the depression and you get even more tired! Yes, mental health help in coming to terms with changed life circumstances and medications to help treat the Lupus triggered depression was a necessity.

Eventually I got better. I followed my Dr's instructions and we tried the different medications until we found things that helped. They don't say "remission" with Lupus, they say it goes "quiet". I am lucky, mine has gone quiet. But I will never regain my career, my business, or my PhD, nor will I ever run another marathon. I am content and very grateful that I feel better. I volunteer as I can, here and with older people in my neighborhood. Surprisingly, I've become more a glass-half-full kind of person, and I enjoy plants, animals, and nature so much more. I relish the times I feel good and have energy, I enjoy the naps that I take when I need them.

It's okay to be sad, it's okay to mourn for the things you have lost. One of the best pieces of advice I ever got was to go deeply into the loss for a certain amount of time -- like allowing yourself to weep uncontrollably in the shower for 5 minutes every morning. Then dry your tears and go about your day, looking for the bright spots as you can.

Hang in there, and keep in touch!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

00hope00
Regular Member


Date Joined Nov 2017
Total Posts : 20
   Posted 12/9/2017 11:27 PM (GMT -6)   
Thank you Lynnwood for your wisdom and words of support. They are inspiring to me right now more than ever.

I have some more questions for you all...So since being on the Prednisone and Plan, I feel mildly better. Not a huge improvement by any means, but I feel about 25% better. The pleurisy has subsided and my eating has improved. I am not as achy. The fatigue and joint pain persists and so does the pericarditis pain. My questions is:

1-What does your pericarditis feel like?
2-How long from when starting treatment, did it improve?
3-Could this be something else?
4-Should I be taking something additional like Advil?

This is what it feels like for me:

I feel okay at rest mostly. Worse laying down on my back, side, or stomach. Occasionally the sharp/pinching/burning pain happens when I breath. It always happens when I walk. It radiates to my sternum, left side breast, neck, shoulder, arm, and underarm. Also, when I walk my heart rate jumps up with the increasing discomfort. Is this how it feels for others?

I know it has only been a few days since the treatment, but I am so desperate to move more and be more active. Thank you all for your input.

Hope everyone is having a wonderful night smile

Tinkerbee
Regular Member


Date Joined Feb 2013
Total Posts : 50
   Posted 12/10/2017 5:00 AM (GMT -6)   
Plaquenil takes 3-6 months to build in the system, so Prednisone is usually prescribed for some more immediate relief.

Post Edited (Tinkerbee) : 12/10/2017 4:05:37 AM (GMT-7)


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7699
   Posted 12/10/2017 10:31 AM (GMT -6)   
I don't have any personal experience with pericarditis and don't know very much about it. I would ask your Dr the questions you posted here.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

HJQuinn
Regular Member


Date Joined Jan 2018
Total Posts : 37
   Posted 2/15/2018 10:54 PM (GMT -6)   
I've been experiencing Pericarditis. I think I have drug-induced lupus from Remicade. I was getting Remicade infusions for Ulcerative Colitis when I started having lupus symptoms. The blood test showed inflammation and I've been having pain in different areas of my body. it definitely changes from day to day. My knees will hurt and my feet will be difficult to walk on and the next day they will be fine but I can't use my hands.

I have an appointment with a Rheumatologist March 7. For the past few days the Pericarditis has been relentless. I take shallow breaths and I'm afraid to do any activities because I'm scared I'll lose my breath or have a panic attack. I'm trying to stay calm until I can see my regular doctor tomorrow. I'm hoping he will prescribe the Prednisone so I don't have to wait until March 7. It's a stabbing pain in the left side of my chest every time I breathe or when I lie down or roll over.

00hope00
Regular Member


Date Joined Nov 2017
Total Posts : 20
   Posted 3/16/2018 6:32 PM (GMT -6)   
Hi guys,

HJQuinn- I'm sorry to hear you have been unwell. How have you been doing? Please update us on your appointment and how you've been feeling. Hopefully you were able to get some answers and relief.

Just wanted to update you all on my situation. Hoping it helps someone down the road…

So after the Lupus diagnosis, I have been put on (at different times, but taking them all at once now):

- Plaquenil, Imuran, Prednisone (still tapering), and Colchicine

My main persistent symptoms are the chest pain, shortness of breath, and incredible fatigue, which have yet to resolve. It’s presumed to be serositis. Most of my other symptoms have improved. Unfortunately I also developed Vitiligo I suspect as I started finding white patches on my legs and arms (my dad has this and it looks so much like his). I will ask my MD about this.

I was able to meet with the Lupus Clinic and their standard of care surpasses any Rheumatologist I have seen since this ordeal. I am now being seen by the Lupus Clinic and a local Rheum in-tandem. I do blood work every two weeks. My blood work is all normal now except there has been no improvement at all in my Complement 3 and 4 levels. They are both moderately below normal. I’m not sure what this means, but I guess it makes sense that I don’t feel better? Also, I have extremely high antibodies to my Thyroid…in the thousands. The doctor thinks the Thyroid will be next to go so we are testing this regularly as well.

Because of lung and heart involvement concerns, I will finally be having an MRI of the heart this March 22. So far, the other tests have shown to be okay-ish, but the Lupus Clinic MD is unsure because the other tests (EKG, Echo) do not always identify Pericarditis or Myocarditis. The Cardiac MRI is apparently the best tool next to a biopsy.

Also, I agreed to participate in Lupus studies conducted by the Lupus Clinic…hopefully we can have a better understanding of this disease.

I guess my questions are…
- How long have your flares lasted?
- And once you go into remission, does that mean you don’t feel any of the Lupus symptoms?
- Can anyone offer any information regarding Lupus and the heart from their experience?

It’s already been 5 months since I’ve been homebound because of this and am really hoping for an end in sight. It hasn’t been easy mentally.

Thank you for reading this. I will be posting this to the Lupus Site as well!
Sending health to all.
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