Hello to All,
I am new to all of this and after reading everything so far, Iím feeling a bit overwhelmed. Unlike most of you I have not been searching for a diagnoses to explain the long list of symptoms. I simply went to my doctor and told him that I had arthritis (as do most of my aunts) and needed some meds to relieve the pain and inflamation on my joints. It has become a daily thing now and over the counter drugs were no longer working for me. He ran the RA blood test. They came back neg. So he ran a few more, then he ran the ANA. And they came back ... Hep-2 Substratet: Positive, Titer: >1/640, Pattern: Homogeneous. So he sent me to a rhumatologist. There I was told I had Lupus, and that ďitĒ was causing my arthritis. I was shocked to say the least! He asked if I had all these other symptoms and I told him yes but... I had a reason for every one of them.... And it was not lupus. I had him re-due the test just to be sure. They all came back the same. He put me on Celebrex 200mg daily(which help alot!) and Plaquenil 200mg BID. Four weeks later I get this rash on the back of my upper arms and torso that looked like an allergic reaction to antibiotics. It was mild and only lasted a day or two. I called my rheumie and he said ,Ēyes itís lupus rash, youíll get those.Ē I told him that I have never had them before I started the meds. He thought nothing of it! Then six days later I woke up in bed with vertigo, stiffness and the rash came back! It was very angry, itchy, burning at the same time with dime sized weals that lasted three days. My family Dr. Suggested that I used Hydrocortisone and lidocaine creams along with Zertic to get relief. Thank God it worked! Itís odd that after being told I had lupus, I get a rash a few weeks later... My husband and I are beginning to think that I am becoming a hypercondriac, manifesting my own symptoms since my rheumie thinks it is not the meds! I donít think my rheumie is a good doctor at all. But Iím stuck until I can find one that is accepting new patients. Iím thinking hard about stopping the Plaquenil if the rash comes back. Any suggestions?
The following user gives a hug of support to Franlfdj: Nonza (05-20-2011)
Fran, greetings and welcome. I'm sorry you've had a shock, and I think you're asking good questions. Here are a few thoughts... but I'm only a patient, so please read in that light, OK?
LABS. Did you get copies of all? Did you see any positive results OTHER than for ANA? I ask because my understanding is that, in & of itself, ANA doesn't prove lupus. That's because ANA may be positive in a number of conditions. Also, I believe homogeneous pattern can be seen in lupus, but in other conditions, too. (Rimed is the pattern considered peculiar to SLE.)
To see how lupus should be diagnosed, look at the "sticky posts" at the top of the thread list, the one with the 11 criteria. (You should scan all the stickies, actually.) Imagine each being checked off in indelible ink, once you've met it. (That's another way of saying that you can meet them over time, meaning not necessarily simultaneously.)
SYMPTOMS. There's a "sticky" you could browse. Were these the ones the rheumatologist queried about?
RASHES after starting two meds. Were you in the sun? Whether you were or not, like you say, I think you definitely MUST consider the possibility of a drug reaction. I've read Plaquenil can cause rashes in a small percent of patients; and when it does, that it MUST be discontinued! For Celebrex, you could read the drug info. And you could also call your pharmacist for a quick take on both.
Lupus seems "plausible" (positive ANA, homogeneous pattern; arthritis, etc.) but I agree that your dr. apparently didn't convey enough to understand why he'd diagnosed it. In your shoes, I'd read all the stickies, maybe borrow some of those books from the library; line up specific questions (you could even dry-run your questions here & ask for more input); then contact your dr. to discuss. Honestly? Had I been told as little, I'd have been dubious and confused. After years of seeing specialists, I finally saw a big-city rheumatologist who literally made checkmarks on my paperwork, to indicate which diagnostic criteria I'd met; and the dermatopathologist he also sent me to see was similarly concise. I wasn't happy but was certainly convinced.
I hope you find out more ASAP, especially about your rashes since starting those meds. And post more soon, OK? Meanwhile, sending my very best wishes to you, sincerely, Vee
Vee, Thank you for your reply. Yes I did get copies of my labs. It seems that the ANA was the only Lupus type test that was done. But here are some of my other results. My doctor didn't seem concerned with them since they were still with in normal range or "not to far off".
My results Normal Range
GFR 59 >60
BUN/Creat ratio 20.0
Granulocyte 75.0 30.0-65.0
Lymphocyte 23.1 35.0-50.0
When I asked my doctor about these last two, he said it was more than likely due to some viral bug I had picked up.)
WBC 4.444 4.0-11.0
RBC 4.46 4.2-11.0
Hgb 13.o 12.5-15.5
Hct 39.9 37-47
MCV 89.0 78-100
MCH 29.0 27-34
MCHC 32.6 31-37
Platelets 156 150-450
RDW-CV 13 12-15
Sed rate 5 0-20
I did scan all the stickies, as well as a lot of other stuff on the internet about lupus. I have had so many of it's symptoms for so many years that I truly never thought much of it. Just thought it was part of life. And a part of me still dose I guess. But here is a list of my symptoms and roughly how long I've had them...
Symptoms that I have had from about the age of 12yrs;
Dry eyes/mouth (use to put water in my eyes because they were so dry)
Headaches/Migraines (missed a lot of school because of them)
Poor sleep pattern
Fevers (missed a lot of school because of them)
I was tested as to why I was having the headaches, but they couldn't see any thing so they told my mother I was just trying to get out of school. As for the fevers and glans, well I was a kid, and kids pick up viruses here and there. So It was just part of life.
Symptoms that I have had for at least 20yrs but thought nothing of it!;
Painful or swollen joints (arthritis... everyone gets it)
Headaches most every days ("migraines" stopped after age 35, but still have headaches)
Trouble thinking/memory problems (every day!)
Poor sleep pattern
Low grade fever
Recently-in the last 2-3yrs;
Sensitivity to the sun/sun burns
Painful Respiration walking up stairs/cold air
Red rash/ Hives (only in the last few weeks)
Now as far as specialists go, my rheumatologist dose not seem very interested
in going any further to clarify things for me, or even testing to see if it could be anything else, or if it is lupus, then what else in my body is being affected other than my skin! When his nurse finally called me back about the rash (after it had started to clear up "thanks to my MD".) She told me that if it came back or got worse to let him know. I have been trying to find another rheumatologist but they are few and far between. Plus they are not taking new patients! I feel very stuck and not sure what I need to do at this point. You sound very wise in your journey of being a patient, and I have no doubt that your burden has enabled you to enlighten many. So any suggestions?
And thank you for you time.
Hi, Fran. Did your GP recommend the rheumatologist? If you get along well with your GP and still can't book 10-15 mins. with your rheumie, maybe your GP could review basic questions with you? Again, I'm only a (dumb) patient, but here are some things I'd ask. I'd make my list succinct, going just for the "biggies" the first time out. For example:
LABS THAT WERE DONE:
* GFR looks on the edge of high? (I don't know what it is, sorry.)
* BUN/CREATINE on edge of high? Was urinalysis done to check for renal impairment? If not, why not? Who will be monitoring?
* PLATELETS edging towards low? Who will be monitoring?
LABS APPARENTLY NOT DONE:
* Urinalysis? ( I'd insist on this.)
* Specific autoantibodies? (I think these are useful to understand "odds". i.e., certain autoantibodies are more likely to affect certain organ systems. Also can raise red flags for ADDITIONAL problems, like secondary Sjogren's syndrome, per your mention of dry eyes. Also, antiphospholipid syndrome, aka "APS" or "sticky blood", the clotting disorder for which a different therapy is sometimes necessary. Headaches are a possible symptom, per the "sticky post" on APS.)
IS LUPUS THE ONLY POSSIBILITY?
* Which ACR criteria were considered fulfilled? (As a dumb patient, I'm wondering about sun sensitivity, oral ulcerations, arthritis, and positive ANA.)
* I'd also wonder about Sjogren's syndrome (per above), for which best test is probably a lip biopsy?
* I'd also want drs. to rule out APS (antiphospholipid).
DO I NEED OTHER CONSULTS?
* Nephrology? (If BUN/creatine deemed worrisome, and/or if urinalysis reveals something amiss.)
* Eyes? (re: previous visual disturbances. PLUS, people who take Plaquenil should have a "field vision test" done regularly.) And if headaches persist, I'd want more tests!
WHAT ABOUT RASH?
* If it could be a reaction to Plaquenil, must I cease taking Plaquenil?
* If I'm on GENERIC Plaquenil, would name-brand be worth a try? (Are "fillers" sometimes the problem?)
WOULD *YOU* BE COMFORTABLE WITH WHAT'S BEEN EXPLAINED?
* Are there other rheumatologists within 1-2 hrs. travel time whom I should see ongoing, or just to confirm, or at least until I get my bearings? (I believe you're allowed to ask here & that board members may reply with certain info only. See the "FAQ" spelling out what people may say in response.)
* Should I see other specialists (per above)?
* Recommended ways to learn more? (Books? Local support groups, who BTW, also might be able to suggest a clearer-speaking rheumie!)
Fran, I'm sure you can edit or add, yet still keep the list "punchy". Because of where I live, I switched to a teaching hospital rheumatologist, about an hour commute; but once I stabilized, I go in less often. i.e., if you don't have "major organ involvement", then odds would be good that you wouldn't have to travel that often. What major cities/hospitals are you the closest to?
I totally understand how problems for decades can make you accept those problems as "normal". That was my trajectory, too; I call it "the curse of the sub-acute", meaning worse than "skin-only" but less than "major organ involvement". I bet such patients are FAR harder to diagnose than people who present with 100% awful symptoms/labs. But, gee, you DESERVE better explanations at diagnosis, AND you REQUIRE confirmation that nothing more serious is going on. We'll be thinking of you. Keep posting, OK? Sending all my best and a huge hug, Vee
P.S. For dry eyes, I was told to try OTC drops. Also, my eye dr. gives me samples to test-drive.
P.P.S. When you have your regular checkups (GYN, eye, dental, etc.) and you update your medical history, that's a good time to solicit input, by asking those other drs. if they know anyone good at lupus. You can ask blandly without criticising your current rheumie, in case they all play golf together, or something.
Fran, sorry I didn't say this earlier. "GFR" may stand for "glomular filtration rate", a measure of kidney function. If so, and if your value was in normal range, it would suggest that your GP and/or rheumatologist checked kidney function, which would make one feel far more comfortable, yes? I do hope you find that the only real lapse has been in communication. Although not good, that would help you a lot, I think. Looking forward to your next update, hugs, Vee
The Following User Says Thank You to VeeJ For This Useful Post: Franlfdj (02-18-2011)
Hi, and welcome. I just want to add that 25% of Lupus patients also have Fibromyalgia. There is a link to hhs in the sticky posts re: lab tests above that has a wonderful article on the coexistence of the two diagnoses. Also you mention a few of the symptoms of Fibromyalgia, especially the memory problems, sleep disturbances. I do want to point out that you also stated that you have recently noticed sun sensitivity which is commonly seen in lupus. One, such as myself, can have a history of being very sun tolerant and then all of a sudden, it is totally opposite. Sun and UV exposure can trigger flares and percipitate rashes as well. I know I have to be extremely careful as I develop heat rash very easily now. I also would ask re a different generic of Plaquenil or perhaps name brand, as it has been the only med that has helped me. I do know that it takes some time for it to work, so do not be discouraged if you do not see immediate results. Also you may see the doctor have to increase the dosage if you are not seeing some good results. Sjogren's was mentioned in your previous discussion, and it is commonly seen with Lupus and Fibromyalgia. Because of medication issues, I have to use more home remedies than medication therapy and I will mention those in case you may want to investigate those. Vitamin D supplement, using sunscreen & clothing to shield sun exposure, epsom salts baths for pain, heat, water aerobics, topical pain relief (I use Biofreeze), good mattress, and feather topper for sleep issues, comfortable, well fitting support shoes (takes the pressure off joints). I do hope you find some helpful. Just want to add that I saw two other Rheumatologists before I found one that was persistent in testing and working with me to find my Lupus diagnosis and a treatment plan that helped. I asked around and also called several Rheumatologist's offices and asked about their speciality until I found one that was knowledgeable of the current and up to the date and some even controversial treatments. Also knowledge is power in your own treatment plan. I read up on Lupus and Fibromyalgia and I go armed with questions each visit. I am lucky to have found a Rheumatologist that listens and is not afraid to try new therapies. I am even considering a clinical trial for Lupus. I do hope you find a confident and knowledgeable doctor that you can feel comfortable with.