So, here I am once again, playing the waiting game. My last Rheumatologist suspected SLE with antiphospholipid syndrome. My insurance has changed, and now I'm waiting to get in with Washington University's Rheumatology division. Meanwhile, I've started up with lots of flare symptoms, and for the first time in a few months, my eyes are red, and I'm running low grade fevers. Last time this happened, new, more specific SLE type symptoms started showing. I normally run 97.0 to 97.5. Last major flare I would get up to 99.1-99.4 in the evenings. This time around I'm running 99.6-99.9 and my body has no strength at all. My PCP doesn't seem to have a clue as to what to do with me. She says she wants me to see Rheumatology ASAP, but will they even take that seriously? I'm not on any steroids or immunosuppressants. I'm scared because I feel like the symptoms are only going to get more severe, and my kidneys at one point were looking like they were starting to be affected (transient increase in creatinine), so where will it go from here?
Does anyone know if a rheumatologists will even care to bump my case up in priority at all? I feel like I'm going to be waiting for months.
Do not be scared. Once you see a Rheumatologist they will look at the blood work as well as your symptoms. Keep a journal of your symptoms daily. This will help them to see what is happening to your body. The rheumatologist knows what is the best and most recent new treatment for you. The creatinine increase maybe temporary,, lets hope. You would have to have significant elevated BUN and Creatinine test to indicate kidney failure. The Rheumy may test your GFR to see if you have indication of kidney disease.
I do hope you can get into the Rheumatologist fast. They are the best people to get you out of your flareups and feeling better. Not a totally cure or improvement but feeling some better
I go to a Rhuemy! If it wasn’t for him I don’t know what I would do… He’s the one that told me I had sle. If one Rhuemy dose not help go to another I go to the best one around here. Everybody from all over go to him. He’s the best!! You will find a good one.
My first visit with my rheumy took a month to get in. Perhaps your PCP requested ASAP when she made the referral? I'm having lots of fevers, but sometimes I'm not sure if they are fevers or hot flashes? When I mentioned this to my Rheumie this week, he didn't say anything...
Please keep us updated on your progress, and hang in there...
I'm also waiting to see my Rheumy to get tested for SLE. I was supposed to see him this Tuesday, but the appointment was cancelled due to fact that he is not going to be present in the office that day. I have however been diagnosed with APS. I Had a massive blood clot in my right leg and huge clots in my lungs two years ago. I have met the criteria for diagnosis, as I have had 1 clotting event and I've tested positive on two separate tests performed a year apart for Lupus Anticoagulant and Beta 2 Glycoprotein 1 (LgG) Antibodies. I tested 98 for the Beta 2 Glycoprotein Antibodies on both tests. So I have high levels of these Antibodies in my blood. I've read that up to fifty percent of people who test positive for APS will also have SLE. It will either be primary SLE with secondary APS, or primary APS with secondary SLE. I personally have been living with crippling fatigue and depression for many years now. I have a lot of bowel issues, where I can go from constipation to Diarrhea all in the same day. At one point before I started taking pain killers which I attribute to a remission in my bowel symptoms, I was going to the bathroom up to 11 times a day. I had to time my entire day around this. It was very hard to do as a truck driver. I couldn't even get half way through a meal and I would have to run to the bathroom after explaining to the waitress that I would be back. People used to look at me like I was crazy. I haven't had that problem since taking pain meds for my chronic pain that stems from the blood clot in my leg that went undiagnosed for a few months.
I have what feels like low grade fevers most of the time - although I never check my temps. My head often times feels like it's burning. I have a constant headache. It's a medium grade headache that never goes away. I go for days where I literally feel like an 85 year old man and I can sleep for up to 18 hours and still feel tired. When I was driving I used to work all week drinking caffeine, taking energy drinks, and popping nodose to keep alert. Then I'd check into a hotel for the weekend and sleep for two days straight, waking up for a few hours in between to eat food, smoke some cigs, watch television and then back to bed till check-out time on Monday morning. I have chronic skin problems such as rashes and folliculitis that never goes away. I never had this when I was younger, but now it never goes away. If I was asked at gun point to remove my shirt, I would not do it because my skin looks that bad. Any how, I'm sorry for being so graphic about what I have been dealing with, it's just that my doc's seem to dismiss everything.
I have fatty liver, some left ventricular hypertrophy indicated by two different EKG's at least two years apart from one another. I have a large lymph node noted in my chest from a CT scan. I have had Bells Palsy - which is one sided facial paralysis three times in the past 20 years. That could be the presence of the Epstein Bar Virus, which is also associated with mononucleosis. I have high cholesterol, high triglycerides, and high blood pressure - at times when I am working I can feel the blood pounding in my neck. This symptom has been greatly reduced since being placed on blood thinners. If you look at all of these different things separately, they can be written off as being a fluke thing. But when you put them all together, I think it paints a broader picture of what is going on with my body. Any how, just know that you're not alone in your plight to find out what's causing your flare-ups. Always remember that you have to be your own advocate. If something is not right, you need to stand up and say something. A lot of my doctors think I'm a hypochondriac, but my story never changes. I know what my body feels like. I'm sending you some positive energy and offering up prayers that your doctors will be receptive to your concerns, and perform the necessary diagnostic testing to get to the bottom of what is going on with your body.
My Rheumy always recommended I go to the emergency room if there was any sign of a flare up. Especially fever. Can your PCP do another to test for creatinine levels? This way you know for sure if your kidneys are being affected.
I just read your post. Are you still working? Are you considering disability? I have been thinking of cutting back on my full-time job. I will probably have to sell my home to survive financially. I have started the process to make the time to cook at home, whole natural foods and cut out the processed foods. I am exhausted when I come home from work, but I need to push myself to be good to my body by eating healthier and starting some form of exercise routine before I am totally bed-ridden. As it is I spent my last weekend isolated, blue and sleeping most of the time. Can never get enough sleep.
Girasole957 said:
My Rheumy always recommended I go to the emergency room if there was any sign of a flare up. Especially fever. Can your PCP do another to test for creatinine levels? This way you know for sure if your kidneys are being affected.