Undiagnosed, sick of being sick
I am a 22 year old female with constant pain as my main complaint. Based off of Saysusie's posting on the criteria for SLE, these are the symptoms I have:
Skin: mild butterfly rash
Joints: pain; redness and swelling.
Kidney: abnormal urinalysis (however this was only checked once and I was dehydrated and sick at the time, may be unrelated, but the doctor who noticed this referred me to a rheumie to test for Lupus)
Lining membranes: chest pain, unsure if it is muscle/joint pain or if it is coming from the lungs
Blood: No known problems
Lungs: Symptoms similar to asthma
Nervous system: Migraines since childhood once or twice a week
+constantly fatigued, mild depression (result of constant pain)
So my most recent rheumie (I've been to many over the past 4 or 5 years) decided to put me on plaquenil to see if it would help at all. He decided that if it works we will be able to determine if my symptoms are autoimmune or if they are caused by something else. I've been on Plaquenil for 2.5 months and have the following improvements: significantly decreased pain, asthma symptoms decreased, migraines almost never, and strangely, my periods have become monthly rather than once every 3 to 4 months. I went to see my doctor this morning and he told me just to stay on the medication and that we may never know what it is. I feel like he is rushing through my appointments. I understand that I should stay on the medication considering how much better I feel, but shouldn't we be doing more testing to find out exactly what it is? My ANA etc. came back normal when it was tested.
SHould I try another doctor and see if he/she won't test further? I asked my doctor this morning what's next and he said, "well, you just might never know exactly what's wrong, so for now you'll just stay on Plaquenil". Somehow I'm just not satisfied with, "I just might never know". I'm sick of being sick and I really want answers! What should I do? I don't see him again for another 4 months. What's your opinion??
Many of us stayed on Plaquenil for a year or more. There are some who felt that they no longer needed it because their symptoms had improved. After they stopped taking it, their symptoms reappeared.
It sounds as if your doctor has decided that you do have an auto-immune disorder and that, since the plaquenil is working, he need not test you to find out exactly which one it is unless more symptoms appear and/or your current ones get worse!
Lupus is very difficult to diagnose and the process can take months to years before a final diagnosis is made. It can be frustrating and scary. The problem is that the disease evolves slowly sometimes, symptoms change (the symptoms you have today could disappear and be replaced with new symptoms tomorrow), so many symptoms could be the result of so many other things (as Lupus symptoms mimic so many other diseases).
It is not unusual to see your rheumy every four months (because of the slow progression of the disease and/or due to the length of time it takes to see results of your medications). Depending upon your symptoms at that time, he may order some tests (or you can insist on some tests being run) and lab work. Advise him of the criteria that you believe you have that fits Lupus and ask if he can at least treat you for the symptoms you are now displaying (if you feel that the Plaquenil alone is not sufficient).
Please let us know how it goes and how you are doing!
Peace and Blessings
I am sorry sweetheart. I know how you feel, I am going through the exact same thing at only 23.
Thank you, it means a lot to me knowing there's other people out there who know what I'm talking about. I'm sorry you feel this way too and I hope you find answers soon.
Another question re: Plaquenil
As I read more of your comments about plaquenil, I have more questions. As I said in an earlier Post, My pain and weakness virtually went away in the first 3 months on Plaquenil, then I had a huge flare of Pain & Weakness. I slept all the time, and could hardly walk across the floor. My Dr. prescribed 3 wks of Prednisone (decreasing). I was good for 6 wks. Then another huge flare, and I am again taking predisone. Should I have expected More from the plaquenil. I guess "expect" is a word we learn not to use with this disease. Thanks for your input.
I can't say much because I am very new to all of this, but I have learned through research on the internet and talking with doctors that this is a disease that will never go away. Meaning, that it will come and go as we have flares and remissions. I've heard of a lot of people on medications like Plaquenil who still have the occasional flare up, some worse or more often than others. I think a lot of doctors use a combination of medications with Plaquenil but, again, I don't know enough about this yet to give you a good answer. I hope things get better for you. I'm sorry you're still feeling so bad. Hopefully saysusie will leave one of her excellent posts for you.
Plaquenil and Prednisone are generally prescribed together. You will find, in other posts on these forums, that many people have had to increase their dosage of prednisone each time that they suffered a flare. Also, weaning off of Prednisone is a trial and error kind of thing. Many doctors and patients have to experiment with the Prednisone dosage until they find the one that works best at suppressing symptoms. The dosage is not the same for everyone. I would venture to say that you flared when your dosage of Prednisone was decreased. Unfortunately, that happens to many of us too often.
You may have to take Prednisone for a bit longer at a higher dose until almost all of your symptoms subside for a period of time. Then, you and your doctor can consider decreasing your dosage. Keep track of how many milligrams of your medications you are taking and what your symptoms are like at those milligrams. Also, what your symptoms are and what side-effects you fee at those doses. That way, you can go to your doctor with helpful information that will assist both of you in determining what medications work and at what dosage!
I hope that I've been helpful. Let me know if you need anything further!
Peace and Blessings
I too am only 24 ! this has been the hardest thing for me to deal with....i feel exhausted all the time and my "friends " dont seem to understand or they do but it seems more like pitty then true understanding...
I have all the symptoms and just yesturday my endroconologist suggested that I have raynoud's phenomenom? umong the recent suggestion of fiber malgia from my rhuemo ( i am a horrible speller) but yet no full diagnosis of lupus... girl this whole thing started with scle which involves my skin.. I had it soooooooo bad on my legs that i looked like micheal jackson! back in the day and I'm white!!!! =) so mentally this has been hard and i am so glad that there is other people out here who have the same issues... I finnally feel like I'm not alone! hang in there i knoe this has to get better..