Well, I look like a prize fighter with one swollen eye and lesions on my forehead and scalp.To make matters worse, I now have what seems like a cold on the same side as the shingles with a runny nose and congestion, It hurts to touch behind the ear on that side. Do any of you nurses know about the complications of shingles on the face? I see my opthomologist tomorrow about the eye involvement. So far, only the eyelid has been affected. The enbrel people called for their routine followup but were no help whatsoever. They are only interested in their research for enbrel and refered me to my regular doctor. My GP thinks I should retire but that means losing my health benefits. I see my rheumy on Wednesday to get her input. I am so sick of being sick.
Not a nurse but have had shingles in the exact same area. It took a whileLinda,
I was worried about you because of it being on your face and near your eyes. Now that I've read more I am very glad you are going to the eye doctor tomorrow.
There are complications:
"In some cases, blisters can become infected. Scarring of the skin may result. Your doctor can prescribe an antibiotic treatment. Keep the area clean, and try not to scratch!
There are other problems to watch for. If blisters occur near or in the eye, lasting eye damage or blindness may result. This can be very serious. See an eye doctor right away.
Other problems may include hearing loss or a brief paralysis of the face. In a small number of cases, swelling of the brain (encephalitis) can occur. It’s very important to go to the doctor as soon as possible— especially if you have blisters on your face."
Source is : http://www.niapublications.org/agepages/shingles.asp
So you had better get to the doctors pronto. Hopefully it is much more benign than this.
My grandmother had it and it was painful. But she didn't have any other complications. You are going to have to stay away from children. It only increases your chance of getting it.
I'm so sorry you have this. You didn't need it and I wouldn't post this information, but it could be serious. Please, please let us know what the doctor says.
Deanna, thanks for the good information. I have one blister right on the eyelid where the lashes attatch that is causing me trouble. So far, the eye itself has not been affected. Are you on MTX and or any of the biologics? They are supposed to make yo more susseptible to infection.So glad to hear it is not in your eye. You know you had some good instincts in insisting on getting this looked at again. The quicker that happens, the less problems.
I am on MTX, Enbrel, Plaquenil, Prednisone, Toprol XL. Vicodin, Tylenol, Mobic, Diovan, Diurectic, Potassium, Klonapin, Notripline, Nitroglycerin as needed, Albuterol as needed, Folic Acid, Calcium and other vitamins. Also use Xatalan for my glaucoma. My meds, with insurance cost about 0 per mo.
So, I do worry about catching this kind of stuff. When I was around my grandmother, I was really worried about it. But the medical doctor said it was no problem. Guess she didn't know what she was talking about. It seems it is a big problem with RA patients.
It happens because we were vaccinated with chicken pox as kids and we carry it in our systems. Because our systems are now immune compromised, we are very susceptible to it. Being exposed to children who have been vaccinated increases your chances.
They say it isn't curable. I hope that's wrong. I'm sure you are just as tired at hearing uncurable as I am. Maybe your outbreak will be minor and then gone. They don't necessarily take you off of the MTX and Enbrel.
You might ask your RD again about teaching though in light of the shingles. Do you get any retirement or disability benefits from your teaching?
You are in such a fix. Would like to trade bodies with someone, but think I'll skip you right now. So sorry this happened to you. Guess we have very similar problems. The world of RA sure can suck.
It is such a double edged sword. Do what you can not to lose your health benefits. It is so hard to go without, as I am living through that right now myself.Gosh Linda, I feel so bad for you and know you are miserable right now. I also agree that the cold may have triggered the outbreak. I have had outbreaks off and on for years. About 10 years ago I had a major outbreak (not my first) and got blisters and sores all over my face and body. It was the middle of summer in las vegas and I had to wear long sleeves and pants to cover it up. [One holistic doctor I was seeing took me off all flour, sugar, red meat, nightshades and only allowed a little fruit. I have to say that once the outbreak was gone (went away on it's own ... not really a result of the diet) I stayed eating that way for about 6 months and had never felt better, as well as being very trim.]
Anyway, as of Wednesday, I am suffering another outbreak. My 'normal' ones are on my hip on the sciatic nerve going down my leg. I normally have sciatica pain, but when the outbreaks happen, it's extra bad.
I really hope you will be feeling better soon. Mine usually last about 7 days....
Thanks all. I get so much help and support here. I have slept the last two nights so I must be improving some. I am still having trouble with the eye and have sinus and ear pain. I think the virus is in that whole area and I am guessing my cold-like symptoms on the same side of the face as shingles are connected. I can't believe this is something that can happen again. The rheumatologist said it's a once in a lifetime experience but I think you friends know better.
Tara, hope you're feeling better. We seem to have many diseases and meds in common.
Deanna and Arizonara thanks for the support. Right now I feel I'm the patient no one wants. I have so many problems and just seem to shuffle between specialists. My GP basically said he can't figure me out that he and the RD consult about me and think maybe I have mixed connective dissease problems instead of just OA RA Sjogren's and fibro.I just want them to fix me so I can have some kind of a like.
I definitely have the mixed connective tissue disease. It seems several people here do. It just means your autoimmune diseases overlap. Well, okay it's a bit more involved than that. I need to look it up again some time. But then I'll just worry about it.
But basically, you probably will get better overall treatment because they will be treating a more overall picture. You are not that strange. It's the disease. And yeah, it would be wonderful to have a life again.
Just hang in there. Didn't you ever have the hankering to be a mysterious woman?
Just came from the eye doc who said the vision is 20/20 in the affected eye. It's still real uncomforable because I have a scab right at the eyelash line. The swelling has gone down so at least I look better. I'm tired of being the mysterious woman with so many things wrong with me. I don't get much sympathy since I generally look well and much younger than my years.
Deanna, have you ever had a comprehensive evaluation at some kind of a center that specializes in autoimmune diseases? Do you reccommend any places for evaluation? I live in Monterey, CA.
Linda, I'm glad your eye is okay. No I haven't ever had a comprehensive evaluation at any kind of center. What I did was stop going through my primary care doctor for everything. But I certainly wouldn't advise that because they can find other things. I just really, really hated the treatment I got from the last one.
I started centering all my care around my RD, which says a lot about how highly I think of him. And, from what I read here, it seems he is following a good form of treatment. In fact, I think he has done extraordinary with some of the complexities that I have presented with.
I have heard the Mayo Clinics will do such an evaluation. John Hopkins sounds like they are very good. I don't know if either of them are in CA. We do have a Mayo Clinic here in Phoenix. With the Mayo, they do a full battery of tests for a certain price and you get evaluated by a whole team. A lot of people do this. They even have an RV park next to the hospital for patients who come all over the country to be treated.
I did quick search and found this one in LA. You might want to check them out.
Some teaching hospitals cater to this kind of treatment plan as well. I think it is a wonderful idea to pursue. If you have trouble finding something, let me know and I'll do some more looking.
Thanks Deanna, I'm looking for a new GP since my insurance requires I go through one every time I see a specialist. I appreciate your website on cedars sinai. I will definitely look into it.You might want to work backwards on finding your next GP. Find out what centers that you would like to go to are covered by your insurance and then call those centers and find the name of a really good GP that's also covered by your insurance. The Sinai place seems to have a good mix and you might see if any of the medical centers near you have something similar available. Then ask absolutely everyone you know how good a facility it is.
If you get a chance in the future, switch to a PPO. They cost more up front, but when you consider all the wasted time waiting for referrals, etc., it is well worth it. If my RD says I need to see another specialist, I just call and get an appointment within a day or a week's time. With the HMO thing, I had to wait four months for each referral. Four months of not being treated can kill you.
Did the eye doctor say any more about the progression or repetion of shingles?
Hi Deanna, I haven't asked my eye doctor about the progression of shingles but I will when I see him in 10 days.I now have a horrible cold on top of the shingles that is in my head and chest. I can't believe I'm in for another week or two of being sick.Okay, that's just too much. You are not allowed to have this cold on top of everything else. When do you see your RD? You have to be very careful with chest and head colds on some of these meds. I barely had the symptoms of a cold and it was bronchitis.
Maybe you should see a doc. I went to Urgent Care for that initially and got an antibiotic started right away.
You followed your instincts before. Go with them now.
And feel better. You need a break from this.
It must be the time of the year I am having some problems with that too, I know it is from having so much problems with my sinuses right now and still recovering from the sinus infection. I am still off the arava and the enbrel. Linda are you continuing your enbrel and mtx? The reason I ask is usually with infection or other things, like the shingles, you need to come off r the immunes suppressing meds because it only makes it worse. Hang in ther folks it can only get better xoxoxox memeWell with all this shingle talk, my psoriasis is acting up too!!!
Hope you're feeling better soon!
Thanks guys. I went back to school for the first time in a long time. I still have cold symptoms but the shingles seems under control. See my rheumy on Wednesday so I'll let her assess whether to put me back on enbrel and MTX. It's sad to say good bye to students I've worked with for years. They were so sweet. One of the boys helped me box up my things. Another pregnant student said she was screwed since I would'nt be there to help her next year. Another boy with all kinds of stitches in his face from being attacked by gang members was so worried about my face. He gave me pictures to remember him by. Another gave me copies of poems I helped him write for English class. I love these kids and I worry about what will happen to them when I'm not there.You've already imprinted yourself on these kid's lives. That's what my teachers did for me and it has always stayed with me. Glad you are some better though.
Sad to say good-bye.
Linda-that's so great how you have been able tobe a