Rheumatic Fever?? Ongoing Issues

Posted by jess0502 @jess0502, Feb 7, 2018

I am an (otherwise healthy) 32 year old who had my 2nd baby on Sept 29 - no complications, felt fine after. At the beginning of Nov I got strep throat. I began treatment with a 10 day round of penicillin, it seemed to clear up after 24 hours & I finished the antibiotic. 3 days after finishing that antibiotic strep came back, so I went back to the dr & she prescribed Keflex. After 1 or 2 days my sore throat was gone but I continued with the 10 day antibiotic. Half way through that round, ALL of my joints became severely inflamed & painful, I could barely move.

Over the next weeks I had of blood work done & saw my dr. several times. I got Rx nsaids which did nothing to help the pain. I got steroid shots, which helped relieve the pain for about 36 hours each time, but it always returned & was always unbearable. During one visit she swabbed me for strep again (I didn't notice a sore throat) and it was again positive. She gave me twice the dose of my first round of penicillin. As I began to finish that 10 day round, the joint pain finally started to subside without an injection.

At the same time I had an appointment to see the rheumatologist - he prescribed me daily prednisone, at a max of 20 mg a day. I waited a day or 2 to start taking it, because the end of that round of penicillin seemed to knock out the joint pain. A couple days after being done with it, pain was back so I began the pred.

My blood work in Dec when I was severely inflamed showed positive for basically everything. My sed rate was 49. My more recent blood work has shown negative for Lupus, & my sed rate is down to 23 but still showing a positive rheumatoid factor. My Doctor & rheumatologist believe I contracted rheumatic fever from under-treated strep. I have now seen a cardiologist, and had an echo that was clear.

I have maintained a bearable level of joint pain on 5-10 mg of pred daily, until a few days ago. I am sore again, especially my wrists. Since yesterday I have been coughing up thick dark blood. Where do I go from here?

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

John, Volunteer Mentor | @johnbishop | Feb 7, 2018

Hello @jess0502 - Welcome to Mayo Connect. Have you talked to your doctor about coughing up blood? I have no medical training or background and do not want to scare you but this can be a very serious symptom. I would call your doctor as soon as possible. Here are some symptoms that Mayo Clinic shows for coughing up blood:

-- https://www.mayoclinic.org/symptoms/coughing-up-blood/basics/causes/sym-20050934

John

oldkarl | @oldkarl | Feb 7, 2018

@jess0502 Hi, Jess. Coughing up blood is never a good thing, but sometimes can be managed. I have coughed up blood now for about 60 years, beginning in my teens. In recent years I have learned two things that keep this going. First, I have an oversupply of eosinophils in my various tubes, including esophagus and airway. The surgeries i have had on my larynx and thyroid have not helped much. but at least I know part of the problem. Second, my lungs are filled with various growths and nodules, shown on several images and scans. This makes it difficult to breath without stirring the blood-letting. While I played football in my late teens and early twenties, then was actively involved in other sports, Marathons, backpacking, rodeo, lots of fast running, etc., any blow to my chest or back brought up masses of blood and clots. Folks just do not realize how fragile their lungs and heart can be. Make sure you have your airways checked for eosinophils, etc.

Kanaaz Pereira, Connect Moderator | @kanaazpereira | Feb 7, 2018

Hello @jess0502,

Welcome to Connect. I can only imagine how worrying this must be! First, I'd urge you to inform your doctor about coughing up blood, (if you haven't done so already), to rule out any complications. Here's some information from Mayo Clinic, about rheumatic fever: https://www.mayoclinic.org/diseases-conditions/rheumatic-fever/symptoms-causes/syc-20354588

I'd like to introduce you to @freemary @kety @kim4hope @jillianm @marylou705, who, along with others in this conversation, "https://connect.mayoclinic.org/discussion/chronic-erythema-nodosum/" have written about similar symptoms.
I'm also tagging @bevmaier @jannyw @solomio Mentor @windwalker as they have shared their experiences with rheumatic fever, and may have more insight for you.

@jess0502, do you have family/friends to help you cope with the new baby during this difficult time?

jess0502 | @jess0502 | Feb 7, 2018

In reply to @kanaazpereira "Hello @jess0502, Welcome to Connect. I can only imagine how worrying this must be! First, I'd..." + (show)

Thanks!

Yes my husband has been a great help with the baby, and since the initial weeks of severe pain I have been able to maintain a level where I am actually functioning as usual, just a little uncomfortable.

Teresa, Volunteer Mentor | @hopeful33250 | Feb 8, 2018

Hello @jess0502 and welcome to Mayo Connect.

I see that you are dealing with a new baby and Rheumatic Fever - I can see that you have your hands full! I am glad to hear that your echo was normal. I had Rheumatic Fever at age 11 and I have some residual heart valve problems.

I am so glad that you have support and help with your baby, that is wonderful that your husband is able to step up to the plate and be there for you!

I would also encourage you to talk with your doctor about the blood you are seeing when you cough. I look forward to hearing from you again.

Teresa