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Fri Jul 6, 2018, 07:36 PM

Lupus, then shingles, now staph. Should I worry?

Iím on maintenance chemo for Lupus (SLE). Came down with shingles. Doc said itís fairly common with my lack of immune system. Then it became infected. Today lab results came back that itís staph and concerned about MRSA. Local doc ordered antibiotic. My Lupus doc is in Philly (about an hour and a half away) and closed for the weekend. The local doc knows nothing about Lupus. I mean NOTHING.
Anyone here know more than my local doc? Should I be worried?

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Reply Lupus, then shingles, now staph. Should I worry? (Original post)
Tucker08087 Jul 2018 OP
True Dough Jul 2018 #1
dhol82 Jul 2018 #2
Kajun Gal Jul 2018 #3
Tucker08087 Jul 2018 #11
still_one Jul 2018 #4
greatauntoftriplets Jul 2018 #5
Tucker08087 Jul 2018 #9
greatauntoftriplets Jul 2018 #10
Tucker08087 Jul 2018 #7
still_one Jul 2018 #12
Tucker08087 Jul 2018 #14
Nay Jul 2018 #6
Tucker08087 Jul 2018 #8
still_one Jul 2018 #13
Tucker08087 Jul 2018 #15
still_one Jul 2018 #16
Tucker08087 Jul 2018 #18
still_one Jul 2018 #17

Response to Tucker08087 (Original post)

Fri Jul 6, 2018, 07:39 PM

1. Holy smokes! Talk about a run of bad luck

You have my sincere sympathies, Tucker! I wish you much better health after suffering from that triple whammy!

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Response to Tucker08087 (Original post)

Fri Jul 6, 2018, 07:40 PM

2. Check to see if your Lupus doc has anybody covering.

There should be somebody with knowledge covering for him.
Otherwise, is there a hospital affiliation for your doc?
I would be somewhat concerned.

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Response to Tucker08087 (Original post)

Fri Jul 6, 2018, 07:58 PM

3. Surely, they gave you antibiotics or something?

 

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Response to Kajun Gal (Reply #3)

Sun Jul 8, 2018, 05:14 PM

11. Yes, oral and topical

Plus antiviral for the shingles. The issue comes with the chemo that I am being treated with. Without a good immune system, I canít fight the virus. For the antibiotic to work well, I need to consider stopping the chemo. Then I canít fight the lupus. At times, we have to decide which is more dangerous. My doctor emailed me. Heíd like to do better tests, then will decide about the chemo. Also, possible hospitalization just for a few days to monitor.

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Response to Tucker08087 (Original post)

Fri Jul 6, 2018, 08:00 PM

4. Independent of the Lupus, they should have done a culture and sample and determined if it is

methicillin resistant staph aureus, along with other antibiotics the infection is sensitive to

I suspect they did that. If you have a staph infection you need to take the antibiotic.

If the infection does not get better, or you start running a high fever you may consider going to the ER for evaluation


As someone else mentioned, even if your SLE physicians office is closed, they should have someone taking calls in case of emergency.


If you are concerned call the answering service and tell them you need to talk to the doctor on call


It is really unfortunate that they didn't recommend the shingles vaccine earlier for you in your situation

Wishing you all the best





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Response to still_one (Reply #4)

Fri Jul 6, 2018, 08:29 PM

5. I second still_one's suggestion.

I also have an autoimmune disease (one that no one's ever heard of) and came down with a staph infection last year. As a result, I spent one week in the hospital and another six weeks in a nursing home on an antibiotic IV.

Please contact your lupus doctor and see how they want to proceed. Staph is nothing to mess around with. In my case, it had gone into the bone.

Best of luck.

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Response to greatauntoftriplets (Reply #5)

Sun Jul 8, 2018, 05:10 PM

9. I'm sorry to hear that!

I have 3 siblings and all 4 of us have different auntimmune diseases. Not fun at all. I wish you health.

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Response to Tucker08087 (Reply #9)

Sun Jul 8, 2018, 05:11 PM

10. And the same to you!

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Response to still_one (Reply #4)

Sun Jul 8, 2018, 04:29 PM

7. Yes, they did a culture

And MRSA was found. Unfortunately, with chemo as my regular treatment, the vaccine is not recommended. I walk around with a very low white count, and itís a fine line.

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Response to Tucker08087 (Reply #7)

Sun Jul 8, 2018, 05:20 PM

12. They know it was MRSA, so they know exactly which antibiotics will work. I am sure you are taking

them, and hopefully you are noticing improvement. If not, as I said you may want to go into the ER, especially if you develop a high fever.

If you are on chemo or any biological that suppresses the immune system, I can understand why they would want you to avoid the vaccine.

Since this is the next day, I hope things are improving for you, and really hope they are able to trigger a remission for you




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Response to still_one (Reply #12)

Sun Jul 8, 2018, 05:27 PM

14. Thank you.

Iím on constant alert for fevers anyway, but they did tell me to watch for this as well. I have noticed a reduction in swelling and less pain, so I think the antibiotic is helping. I wish I had caught the whole thing a week sooner. I really thought it was a series of bug bites until the swelling started.

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Response to Tucker08087 (Original post)

Fri Jul 6, 2018, 09:22 PM

6. As still one said, once they saw that you had staph they should have tested for MERSA. Call

someone to determine exactly what they tested for.

Can you tell us which antibiotic they prescribed for you, and the dosage level?

My husband had two hip replacements, one of which became infected. It was staph, but not MERSA, and he was on intravenous vancomycin for 6 or 8 weeks. He has recovered well, but the earlier you start taking the correct antibiotic, the better off you will be.

Try to find and call the emergency line of your lupus doctor.

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Response to Nay (Reply #6)

Sun Jul 8, 2018, 05:09 PM

8. Dicyclomine

My Lupus doc emailed me. He wants to do more tests because they tested for the staph with a nasal swab and the infection is on my abdominal area. Apparently staph does live in nasal membranes, because it is dark and wet, but a blood, urine, or sample from the actual infected area is more precise.
I feel lousy, but the good news is the swelling of the infected area has gone down and with the lessened pressure, is less painful. (Still hurts like heck, though.)

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Response to Tucker08087 (Reply #8)

Sun Jul 8, 2018, 05:23 PM

13. dicyclomine isn't an antibiotc. Did they give you an antibiotic for the infected area?

I am glad your specialist got back to you and is monitoring your situation


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Response to still_one (Reply #13)

Sun Jul 8, 2018, 05:51 PM

15. Are you kidding me???

I hope I just spelled it wrong, because they told me it was an oral antibiotic and also gave me a topical. Iím going to contact my ďrealĒ doctor, since I just sent him an ďaffirmativeĒ reply about the antibiotics. They really, REALLY donít know how to deal with Lupus here, even in the local hospitals. One time I spent about a week in the hospital in Philly and my doc said he THOUGHT I was okay, but go to the local ER if anything went South. I said, ďDonít send me home unless you know Iím okay because I swear to God I will crawl across the Ben Franklin Bridge before going to my local ER!Ē In all fairness, and I say this with no exaggeration, I almost lost my life in the local hospital, only to go to Philly after 2 weeks with a fairly constant 105 fever and eventually surviving after being treated there, so he knew I was serious. And, by the way, it turned out I had Legionella (Legionaires Disease), although they insisted it was impossible. I was contacted by the CDC. There was only one other case in the USA at the time, and it was a woman from Connecticut who had contracted it overseas. Other people must have come in contact with it, but my immune system was shot, so I was the only person who contracted it.
Two things will always stick with me: The doctors telling me I had 24-36 hours and I needed to say goodbye to my six year old son. (Heís 15 now.) And telling a nurse that I couldnít breathe and could hear rattling in my lungs. (This was about 6 hours before the Legionella diagnosis when they discovered that one lung was 100% under water (fluid) and the other 60%.) She said, ďYouíre just hyperventilating because youíre upset that youíre dying. Try to calm down and be less dramatic.Ē
Now they gave me 36 hours, and this was my second night, so in theory, I should already have been dead, and I certainly think being ďupsetĒ wasnít an uncalled for response, but a bit of empathy would have been nice. I HAD been crying. I thought I was leaving my baby. Even if I had just been hysterical, a bit of bedside manner would not have been out of order!

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Response to Tucker08087 (Reply #15)

Sun Jul 8, 2018, 06:35 PM

16. I think you meant doxycycline, NOT dicyclomine. Just contact your doctor, please do NOT assume the

worst.

I am not a physician.

You said the symptoms are improving. You will get it straightened out. You have been through a hell of a lot of tough breaks, and try not to stress out until you know exactly what you are dealing with.


I am really sorry what you are going through, and specific medical advice needs to go through your phsycian and specialists, not a forum like this


take care






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Response to still_one (Reply #16)

Sun Jul 8, 2018, 06:41 PM

18. You are probably right

This has wiped me out. All I do is sleep! And I didnít have the bottle right in front of me. I did email my doc (using the bottle) and he seemed ok with it, although wants further testing. Heís the best. I wonít abuse it, but he gave me his home cell number just in case. The swelling has gone down throughout the day, so Iím feeling optimistic!

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Response to Tucker08087 (Reply #15)

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