Welcome, Guest
Username: Password: Remember me
Other Platelet Disorders

TOPIC: Blame it on Lupus?

Blame it on Lupus? 4 years 2 months ago #46260

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12444
  • Karma: 11
  • Thank you received: 2325
I've had a new problem lately...very dry eyes. It's so annoying that by the end of the day, my eyeballs feel like they are puckered, like I put Preparation H in them. My lids feel heavy and crusty, but look okay. By the end of the day, I can barely see and it's getting worse. I have always had dry mouth; I take a drink with me everywhere I go and have a packet of Spry.

I mentioned it to my Rheumatologist 3 months ago. She said it is probably due to dry air and heaters. I said, no, I've been through many winters and never had this problem. She basically blew me off then, which makes me mad because it could be Sjogren's and if so, I should know. I decided to once again try to fix it on my own and go with a simple solution...maybe a Vitamin A deficiency. I bought some today, so we'll see if it helps. I also have some eye drops but it only works for a short time, like 15 minutes. I see my Opthamologist next month and the Rheumatologist in March. Maybe one of them will listen? Ha!

Please Log in or Create an account to join the conversation.

Blame it on Lupus? 4 years 2 months ago #46328

  • DanC33
  • Offline
  • Posts: 276
  • Thank you received: 11
Here's a good article about dry eyes and Lupus

www.lupus.org/answers/entry/how-does-lupus-affect-my-eyes

Please Log in or Create an account to join the conversation.

Blame it on Lupus? 4 years 2 months ago #46335

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12444
  • Karma: 11
  • Thank you received: 2325
Thanks, Dan. I did just have a thorough eye exam in December, but have to go back in March to have the Plaquenil testing done. The opthamologist took pictures of the back of my eye and everything looks good (retina, nerves, macula, cornea). I think testing for dry eye is different though, so I'll have to bring it up. Could be Sjogren's, but would need further tests for that.

Please Log in or Create an account to join the conversation.

Blame it on Lupus? 4 years 1 week ago #47765

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12444
  • Karma: 11
  • Thank you received: 2325
I think I do have Sjogren's. I just saw the eye doctor the other day and after speaking to her, she prescribed Restasis. Two days ago, the side of my face swelled up and hurt like heck. I spent the day at Med Express and I have an infected salivary gland. Turns out one main cause of that is Sjogren's.

The Rheumatologist keeps blowing it off when I mention the dry eyes and dry mouth, but there isn't much you can do about it anyway.

Please Log in or Create an account to join the conversation.

Blame it on Lupus? 4 years 1 week ago #47766

  • Ann
  • Offline
  • Posts: 1895
  • Thank you received: 355
I have dry eyes too. They call it sicca syndrome which simply means dry eyes and mouth! It's so common that almost everyone gets it as they get older which is why they don't take it seriously. Air conditioning makes it much worse for me and my eyes get very sore in those conditions. The ophthalmologist told me to wipe the eye lid edges with a cotton bud dipped in a solution of baby shampoo mixed with warm water. I find that does help although I don't do it as often as I should.

Please Log in or Create an account to join the conversation.

Blame it on Lupus? 4 years 1 week ago #47767

  • Melinda
  • Melinda's Avatar
I need to read up on Sjogren's.

Obviously I have a bit of dry eyes thanks to thyroid eye disease [oh shoot I am diseased].

Sandi I have had an infected salivary gland too, this was a few years back - I looked like a person in a cartoon who has the side of their face swollen from a tooth ache. It hurt, it was crazy swollen and I looked quite odd.

Ann my ophthalmologist told me to close my eyes and the wash my eyes with baby shampoo - and not to be gentle either. As we age the oil in the lid oil glands gets thicker and can block up the pore - she told me to use the baby shampoo and also moist heat on the eyes. Both help some. She said to do it 4x a day, I can get in 2x.

Please Log in or Create an account to join the conversation.

Blame it on Lupus? 4 years 1 week ago #47769

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12444
  • Karma: 11
  • Thank you received: 2325
Both the dry eyes and dry mouth came on suddenly a few months ago. I guess it doesn't matter if it's Sjogren's or not, the treatment is the same.

The dry eyes are so severe that I can barely keep my eyes open past late afternoon. They feel gritty all the time. I wore contacts for many years and know that dry eye feeling. This is much worse. I'll try Restasis and see what it does.

Please Log in or Create an account to join the conversation.

Blame it on Lupus? 4 years 1 week ago #47770

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12444
  • Karma: 11
  • Thank you received: 2325
Melinda - I'm glad to know that I'm not the only one who gets weird medical problems. Who gets infected salivary glands? I thought it was a tooth abscess, first time I ever got my own diagnosis wrong. I'm still convinced it's Sjogren's because it's all too coincidental. I'd been having weird pains in that area when I bite food for months and blew it off. Obviously a salivary gland problem.

Ann - I've never heard of baby shampoo for the eyes. I've been using drops but they don't work for more than a few minutes. The opthamologist said it's probably an inflammatory thing, hence the Restasis.

Please Log in or Create an account to join the conversation.

Blame it on Lupus? 4 years 1 week ago #47772

  • Melinda
  • Melinda's Avatar
Sandi you know me, I do the odd things. That infected salivary gland was something else.

The Restasis should help - it's supposed to be good. My dil's ophthalmologist uses it.

Know someone who has been washing eye lids with shampoo for a few years now - it isn't all that uncommon to have to. This is from the American Optometric Assoc
www.aoa.org/patients-and-public/eye-and-vision-problems/glossary-of-eye-and-vision-conditions/blepharitis?sso=y
Directions for an Eyelid Scrub:
1.Wash your hands thoroughly.
2.Mix warm water and a small amount of non-irritating (baby) shampoo or use a commercially prepared lid scrub solution recommended by your optometrist.
3.Using a clean cloth (a different one for each eye) rub the solution back and forth across the eyelashes and edge of the closed eyelid.
4.Rinse with clear water.
5.Repeat with the other eye.

Please Log in or Create an account to join the conversation.

Blame it on Lupus? 4 years 1 week ago #47774

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12444
  • Karma: 11
  • Thank you received: 2325
Interesting. I might try that.

You know what's weird? I have worn contacts since I was 18 years old. I've had dry eyes from contact use....the eyes are sticking kind of thing. I switched to glasses in December because contacts can't correct my vision any more and I couldn't see far or near, only middle vision. The dry eyes got worse since the glasses. I told the eye doctor and she said that the contacts probably protected my eyes from the air. Most people have the opposite problem with contacts blocking the air. I did notice that the dry eyes got worse a few months before the change to glasses, but it's even worse now. What a trade off.

Please Log in or Create an account to join the conversation.

Blame it on Lupus? 4 years 1 week ago #47775

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12444
  • Karma: 11
  • Thank you received: 2325
The antibiotic is causing a very disturbing side effect related to bowels. I can't leave the house!

Please Log in or Create an account to join the conversation.

Blame it on Lupus? 4 years 1 week ago #47795

  • Ann
  • Offline
  • Posts: 1895
  • Thank you received: 355
Which antibiotic is this? I have that problem with several too. I'm lucky in that the one I take every day.. Septrin.. is okay. I have others at home ready to use in case of infections and they are not so good.

Please Log in or Create an account to join the conversation.

Blame it on Lupus? 4 years 1 week ago #47797

  • Melinda
  • Melinda's Avatar
If the antibiotic is causing that much trouble you need to contact the doctor and get off it and on another! Are you taking a probiotic or eating yogurt?

Please Log in or Create an account to join the conversation.

Blame it on Lupus? 4 years 1 week ago #47808

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12444
  • Karma: 11
  • Thank you received: 2325
Augmentin. I should have never agreed to it. :sick: No warning at all. I've been taking Imodium.

Yep, Meinda. I have yogurt and have been eating it.

Please Log in or Create an account to join the conversation.

Blame it on Lupus? 4 years 1 week ago #47813

  • Melinda
  • Melinda's Avatar
That's a potent one. Have you informed the doctor?

Please Log in or Create an account to join the conversation.

Blame it on Lupus? 4 years 1 week ago #47820

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12444
  • Karma: 11
  • Thank you received: 2325
No. Imodium seems to be helping. I'll give it a few days.

Please Log in or Create an account to join the conversation.

Blame it on Lupus? 4 years 1 week ago #47841

  • Ann
  • Offline
  • Posts: 1895
  • Thank you received: 355
You're not supposed to take imodium with antibiotics. I don't know why though but they always warn against it.

Please Log in or Create an account to join the conversation.

Blame it on Lupus? 4 years 1 week ago #47843

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12444
  • Karma: 11
  • Thank you received: 2325
Thanks Ann. I'll check it out.

Please Log in or Create an account to join the conversation.

Blame it on Lupus? 4 years 1 week ago #47849

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12444
  • Karma: 11
  • Thank you received: 2325
I couldn't really find anything about Imodium and antibiotics. I also looked on Drugdigest for interactions and there were none. After today I'll try to limit the Imodium, but I have to go somewhere this evening.

Please Log in or Create an account to join the conversation.

Blame it on Lupus? 4 years 1 week ago #47857

  • Melinda
  • Melinda's Avatar
C-diff

I wouldn't mess with this Sandi, I'd let the doctor know what the antibiotic is doing to you!

Please Log in or Create an account to join the conversation.

Blame it on Lupus? 4 years 1 week ago #47863

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12444
  • Karma: 11
  • Thank you received: 2325
Antibiotics and Imodium cause C-Diff? I've been eating a lot of yogurt to try to avoid that. I'm doing fine with one Imodium a day. No further problems. I'll be finished with the antibiotic soon.

Please Log in or Create an account to join the conversation.

Blame it on Lupus? 4 years 1 week ago #47864

  • Melinda
  • Melinda's Avatar
No, an antibiotic can cause C-diff - and it sounded like you had diarrhea pretty bad. You should let your doctor know what was going on!

Here's what the Mayo Clinic says about anti-diarrheal meds & antibiotic associate diarrhea (I have done the underlining etc):
www.mayoclinic.org/diseases-conditions/antibiotic-associated-diarrhea/basics/lifestyle-home-remedies/con-20023556
"Ask about anti-diarrheal medications. In some cases of mild antibiotic-associated diarrhea, your doctor may recommend anti-diarrhea medications, such as loperamide (Imodium A-D). But check with your doctor first before taking anti-diarrheal medications because they can interfere with your body's ability to eliminate toxins and lead to serious complications."

Please Log in or Create an account to join the conversation.

Blame it on Lupus? 4 years 1 week ago #47866

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12444
  • Karma: 11
  • Thank you received: 2325
The day I got the antibiotic, I took one before I went to bed. As soon as I woke up the next morning, Big D began. It's a reaction to the drug. It couldn't have been C-Diff that fast. The same thing happened when I took Augmentin the last time and I shouldn't have agreed to it this time. I used Imodium with it in the past and all was fine. I've had bowel sensitivities ever since I used MTX. Another wonderful bit of damage from that drug.

Melinda, I know you are right. I am great at giving advice but I'm not good at taking it. I don't want to start over with another antibiotic at this point. If anything happens, you can say I told you so. :P

Please Log in or Create an account to join the conversation.

Blame it on Lupus? 4 years 1 week ago #47870

  • Melinda
  • Melinda's Avatar
Never would say I told you so - just wish you would let your doctor know what happened with the augmentin and that it had happened before and don't take it again, don't do that to yourself.

I don't think c-diff would happen that quickly either.

Please Log in or Create an account to join the conversation.

Blame it on Lupus? 4 years 1 week ago #47875

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12444
  • Karma: 11
  • Thank you received: 2325
It was just a doctor at Med Express. I've never seen him before.

Please Log in or Create an account to join the conversation.

Blame it on Lupus? 4 years 1 week ago #47877

  • Melinda
  • Melinda's Avatar
Just talked with nurse friend - she said augmentin is notorious for that side effect. Also said not likely c-diff would start that fast but not unlikely either.

Please Log in or Create an account to join the conversation.

Blame it on Lupus? 4 years 1 week ago #47878

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12444
  • Karma: 11
  • Thank you received: 2325
Thanks! You confirmed what I already knew. :)

I'm fine, just wish the darn gland would get better!

Please Log in or Create an account to join the conversation.

Blame it on Lupus? 4 years 1 week ago #47882

  • SuperDave1
  • Offline
  • Posts: 50
  • Thank you received: 4
BEEN OFF FOR A WHILE
try Vit A , sounds like a plan
better than Drugs !!!
sorry read this so late SuperDave
SuperDave

Please Log in or Create an account to join the conversation.

Blame it on Lupus? 4 years 1 week ago #47891

  • DanC33
  • Offline
  • Posts: 276
  • Thank you received: 11
Sandi, how goes the battle with the antibiotic? Hope you are feeling better.


I just got back from my Ophthalmologist and he said that I also have very bad dry eyes. He said that Lupus can cause it as well as the meds to control Lupus. He said that in his experience that most people with Lupus also have milder cases of Sojourns/Reynaud's or Scleroderma all can cause dry eyes. Right now he has me using these thick gel drops 2-3 times daily. He said that most people with Lupus end up with tear duct plugs. He is also sending me to get a special test because of the Planquinil. Not sure what that test involves.

Please Log in or Create an account to join the conversation.

Blame it on Lupus? 4 years 1 week ago #47892

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12444
  • Karma: 11
  • Thank you received: 2325
Dan:

I've read that duct plugs don't work very well and are rarely used anymore. Restasis is supposed to be much better. It takes about 6 weeks to work. I just picked it up yesterday and haven't started it yet. My co-pay is expensive...I can't keep up with the cost of all these meds! I also have other drops that the eye doctor gave me but they only work for a short time.

Have you had the vision field test? Maybe that's what he's talking about. That should be done every six months when you take Plaquenil. Some eye doctors don't have the equipment. I chose one who does.

Please Log in or Create an account to join the conversation.

BBB Cleveland logo GuideStar Seal NORD Member Badge 2018THSNA logo