I was diagnosed with SLE just over a year ago. The last lab work that I had ran for him was back in May and my last appt I had with him was back in June. At that time the labs came back ok so he didn't schedule another appointmend until Dec. Since then I have had several episodes of endless itching. Almost like an allergic reaction to something or maybe a medication was building up in my system or something. I have also started swelling and having a lot of joint pain so I figured I was in a flare. I made an appointment to see my Rhumie again.
I have a specialist for just about everything in the book. Everytime I go to see my Family Doc if something is wrong all she does is just refer me to another specialist. All of my doctors know that I have lupus but they don't seem to connect all the dots. My GI doc can't seem to figure out why He can't seem to stop the bleeding episodes. He knows that I have lupus and I have read that it can be one of the complications of lupus. When I have brought this up to him he says that I will have to talk to my Rhumie about that because he doesn't know about Lupus. As far as the bleeding goes he says unless I am bleeding for more then 3 days in a row not to worry about it.
Back to my appointment that I made with my Rhumie. I went in and told him that I was itching and having all sorts of pain. He looked at my record and the last labs that were ran in May he said were fine so what I was experiencing now couldn't be because of Lupus and to go see a dermitologist. He just totally dismissed the pain and swelling. He said all he could do for me is give me a steroid shot and re-run the labs if I wanted but there was nothing else he could do and for me to go to a dermitologist. I did have the labs ran again and they came back last week. My ANA is off the charts again and a few other labs are abnormal. This justifies what my body tells me was going on but now I don't know what to think about my Rhumie. I feel like a ping pong ball. Any dr I go to doesn't seem like they want to deal with what is wrong they just want to pass it off to another dr and collect their copay.
There is only one Rhumie in the city and the next closest is over 2 hrs away. I have made an appointment to see him but that is in a few more weeks. Until then I don't know what to do. I feel so lost because when I feel bad I don't know who to go to anymore for help. Most of the Dr just want to treat symptoms and put me on more medication and I told them that i don't want that. Some have gotten upset with me because I didn't ask for a refil of pain killers. I don't want to get addicted and would rather live with the pain that there is then become addicted. I am so lost and don't know where to turn anymore.
Hi, Opal. I certainly understand the ping-pong feeling when you have to see a lot of specialists and you feel like each one of them is telling you something different. But when you have a chronic illness like lupus, and a lot of different specialists, it's important to have one doctor who can coordinate your overall care, and make sure nothing slips through the cracks. Usually this would be your family doctor, but it sounds like she is intimidated by the lupus and doesn't feel comfortable treating it. So it might be a good idea to find an internist (a specialist in internal medicine) to take you as a patient. Internists have several years of specialized residency training and are used to treating a variety of health problems. But it's important when looking for a different doctor to make sure you find one used to lupus patients. If there is a lupus support group in your area, the members may know of some good doctors. You might also ask your rheumie and your GI doctor to recommend an internist.
Lupus can cause chronic itching - if you look in the Symptoms forum, you will find several posts abut itching - it is definitely a common problem! My doctor prescribes a low dose of a medicine called doxepin, and also a doxepin cream - this is the only thing that seems to stop my itching episodes. Steroid creams and oral steroids will help some - I also find the Aveeno bath products are helpful. This type of lupus itching isn't caused by an allergy, but scented soaps, laundry detergents, etc. with added fragrance can make the itching worse, so it's good to use hypoallergenic products when you can. Many dermatologists are actually more familiar with lupus than family practice doctors, so you might have better luck getting treatment from your dermatologist if you have one.
Has your doctor done any tests to rule out the cause of your GI bleeding? Because for any type of GI bleeding, your doctor needs to rule out a serious medical condition before he tells you it is nothing to worry about it. So you may have to get very assertive about this, and insist he does the appropriate tests. Tell him to ignore the fact that you have lupus, and do whatever tests he would normally do for a woman your age with GI bleeding.
The big problem both doctors and patients often have is we start to assume every new symptom is due to lupus, and forget other things can go wrong too! So sometimes you have to put lupus out of the picture, and start a diagnostic workup from scratch, without any preconceived ideas. If your GI doctor isn't willing to do this, you may have to find a GI doc who will. GI bleeding is too important a symptom to ignore in hopes it will go away. And if you are taking prescription or over-the-counter aspirin or anti-inflammatories (advil, ibuprofen, aleve, clinoril, etc.), GI bleeding could be a sign of serious side effects. So please be persistent in getting this checked!
You didn't mention whether you or on any medications for your lupus. I know you may hate taking pills, but if you are starting a flare, it's important to get it under control. And don't be afraid of taking pain medicines - unless you have a history of alcoholism or substance abuse in your family, you are unlikely to become addicted to pain medicines if you take them as prescribed for pain. I have been taking very strong high dose painkillers off and on for six years, and have never had any problem with stopping them when I don't need them. Addicts take narcotics to get high - people in chronic pain take them to stop hurting and rarely get a "high" even with strong narcotics. And constant pain is physically stressful on your body and may prolong the flare. There are also non-narcotic pain medicines available if you do have a family history of addiction.
If there is a chapter of the Arthritis Foundation anywhere in your area, they usually offer exercise programs, massage therapy, water exercises, and many other resources to help people with joint programs - many people find that massage and gentle water exercise help their joint pain. If there is no program in your area, ask your doctor about referral to a physical therapist to help with your joint pain.
I know this is a hard and stressful situation. But trust your own body - you know when something is wrong. You may have to keep pushing for answers!
Thanks for your advice. I will have to look for an internist. When searching for one that is knowledgeable with Lupus do you just ask that over the phone when you call them?
My Gi doctor has done many tests. I was diagnosed with Ulcerative Colitis about 5 years ago after going to the dr for bleeding and they did a Colonoscopy. They put me on some meds and the bleeding persisted and they did a sigmoidascopy and said there was nothing other then the Colitis. When I moved down here a few years ago the bleeding flared up again and I had to go to the ER. The GI dr I was refered to down here did a Colonoscopy/Endoscopy and found Colitis,Gastritis and a Hiatal Hernia. He put me on meds. I seemed to calm the bleeding but I still had episodes. I didn't like this dr so I switched to a different GI and have had several more Colonoscopy/endoscopy. This Dr said there was no sign of Colitis but he did see some hemrrhoids. He bound them earlier this year and the bleeding continues. When I go into him because I have had another episode it seems he just keeps giving more meds. and has become flustered himself because he can't get it to stop. He has even talked about getting a surgeon involved and severing the veins that flow there. I have long taken myself off any meds that could possibly thin my blood.
I am currently taking meds for my Lupus. I was taken off steroids back in June when the last round of labs came back okay. Since then I have had numerous sinus,respiratory and other infections that my docs have treated with steroids and antibiotics. There is no history of addiction of anything in my family. I just see so much about it on tv and it concerns me. I will try to not be so resistant to the pain meds. Thanks for your help.
If you call doctors listed in the phone directory, you can certainly ask if the doctor has experience with lupus patients. Usually the receptionist or a nurse in the office will know. Since lupus is such a complex disease, you really don't want a doctor who will be learning about it with you as the object lesson!
I find it a little strange that your current GI doctor found no signs of colitis when two other doctors had found it during their exams. Even though ulcerative colitis goes through periods of flare and remission, the ulcers themselves usually leave scarred areas when they heal, which should show up on an exam. So a referral to a surgeon for a second opinion might not be a bad idea - your GI doctor sounds out of his depth. If you are having abdominal pain or diarrhea along with the bleeding, then it sounds like the colitis could be active again. If the bleeding is painless, some other cause might be involved. If you are having a lot of bleeding, your doctor should also be checking your blood count to make sure you aren't becoming anemic.
I also used to have a lot of sinus and respiratory infections, and found that an air purifier in my bedroom seemed to cut down on them quite a bit. So you might try that too - can't hurt and might help!
I was having intense, continuous itching. I found out my Vitamin D level was extremely low. Now that I've been on a supplement, the itching is gone. It also was causing extra fatigue.