View Full Version : I have "mild" lupus

12-18-2009, 05:40 PM
I recently got diagnosed with lupus 2 months ago but this all came about when I went to my GP and found out why I was soo tired. It was because I was severly hypothyroid, which was so new to me. Then my ana was off the roof. I went to a rheumy to do more blood work regarding my ana and he found out I had lupus but he said he wanted to see me in like 3 months so that my severe TSH levels could get normal. He said he doesn't want to deal with my symptoms because he doesnt' know if it could be the hypothyroidism or lupus. Anyways 2-3 months later I saw my rheumy today. I told him my thyroid levels are normal and he asked if i had any symptoms and i said yes, headache, muscle soreness in leg, itching in leg, fatigue and raynauds which last a long time. for headache he said see an ENT dr , for my raynauds he said wear gloves, for the leg itching take benadryl and for the leg soreness and fatigue he said he really can't do anything because he doesnt want to put me on meds yet for lupus. he says my lupus is mild but that i need to see him in three months. All this lasted about less than ten minutes. I feel soooo frustrated. I was looking fwd to going to the dr so that he could hear me out. I know my symptoms aren't bad like other people but my fatigue and my muscle soreness really affects my life. I'm 31 yrs old and I used to have more energy...now I just focus on going slow and not stressing myself out due to fear of having a stupid flare the next day. Does anyone else go through this?:crying:

12-18-2009, 10:06 PM
hi malayaleetexan,

i have not heard of anyone who was diagnosed with lupus and the dr. did not start them on plaquenil. It is a pretty aggressive medication, but it really helps slow the progression of lupus. So, if your case is mild, then slowing the progress might keep it that way longer....hmmm, do you live in an area where you have other choices for a rheumy?

if you have a local support chapter of the lupus foundation, they might have recommendations for drs. I think i would seriously consider getting another opinion. My first rheumy was supposedly "one of the best in atlanta"....well, i certainly did not feel that way after seeing him. I called other drs., and have found a wonderful dr. who truly cares about helping me.

keep us posted....and by the way, welcome to the group....

12-19-2009, 03:26 AM
hi mountaindreamer,

Yah I know most rheumys start the patients on plaq usually. I'm a nurse and one of the doctors I work with is not a rheumy but he was wondering why I haven't been started on the medicine because he said my cells are being killed. Maybe my rheumy doesn't believe in aggressive meds...which is fine with me..because I don't either. It's just that I don't want to get worse down the line. I don't know all this is new to me. Yest was my final visit to him. I don't like how he "assesses" me. When he listens to my lungs, he ask me to take a deep breathe, by the time i'm done with my First exhale he's done listening to front and back....this is the second time he's done that. I think he's the only dr that "listens" to my lungs like that. I know he's not hearing anything. I have an appt for anothing rheumatologist in two weeks. I hope it goes well..:embarrassed:

12-19-2009, 04:24 AM
Hi Malayaleetexan,

Welcome to our group. Many of us have had similar experiences with Rheumotologists. Seems as though most of them are in too much of a hurry to deal with people with Lupus. Or, they are just an incompetent jackass plain and simple. In my opinion, you should have been started on Plaquenil. It's really an effective drug and most people respond well to it, and tolerate it with little or no side effects. I would tell, not ask, your new Rheumo to start you on it, and refer you to an opthamologist to monitor your eyes. Plaq can cause retinal damage when taken in higher than recommended doses, but retinal damage is very rare. I've been on Plaq on and off since my SLE diagnosis in 2004 with no ill effects at all. I cannot imagine how bad my nearly constant flares would be without the Plaq.

Anyway, you are doing the right thing by learning about your condition, and by seeking out a second opinion. More often than not, we have to learn to be our own advocate. Don't be afraid to be assertive, as these specialists sometimes forget that they work for us, and not the other way around.


12-19-2009, 03:57 PM
hi malayleetexan i agree with rob and phyllis you need to be firm with your doctor and tell him you wish to be put on plaquenil to control your symptoms rob is right alot of these doctors are jackasses and if you do not keep at them they just dismiss you do not let your symptoms get worse while waiting for your doctor to take action its your body you be the one in control i hope you get help soon hugs kiml

12-20-2009, 09:43 AM
I, too, agree that your doctor could, at the very least, start you on Plaquenil. It is a relatively safe medication with few side effects and it can help with your fatigue also. As you can see, we are all in agreement on that issue.
I can understand that your doctor may not want to start you on steroid (Prednisone) medication or immunosuppressant (Methotrexate etc.) medications because they do have side effects and if your symptoms are mild, there may be no need for them right now. But, to do nothing with a disease that can be progressive is borderline negligence in my opinion.
You have the RIGHT to demand that your symptoms be treated, regardless of his unwillingness. It is unfair to ask you to suffer because he doesn't want to treat you. If he is unwilling to treat you, then tell him to refer you to a rheumatologist who cares about you and DOES NOT want you to just suffer! As we've all said, at the very least, he can start you on Plaquenil. This is a slow-acting drug that can take 2-3 months before you truly see its benefits, so you need to start it now. Especially if your Lupus is mild, this drug may be able to prevent your Lupus from escalating.
Please call your doctor and/or his nurse immediately and tell them that you will not just idly sit by waiting for your symptoms to worsen and you will not rely upon over-the-counter medications to treat your Lupus. Since you are diagnosed with Lupus, you want to be started on Lupus medication!
I wish you the very best, please let us know what you decide and what your doctor prescribes.

Peace and Blessings

12-20-2009, 11:46 AM
thanks everyone for your input. as a new lupus pt this has been very confusing for me but i'm glad to hear that you all agree that this rheumy is a moron. Lol. I think he forgot I was a nurse or something because he doesn't take the time to explain things to me like my GP who explains things in detail to me.
I saw good reviews for my new rheumy and my mother who does not have lupus stated that she saw him once and he wanted her to take plaqenuil for her raynauds. So i'm sure he'll start me on plaqenuil. Anything to help my fatigue.
I think maybe this rheumy thinks i dont look that bad or something but i do. I dont look like i'm sick ya know but that's cuz i spend hours just to get ready because I don't want peopel to know that i'm not feeling well.
thanks for welcoming me to the group.

12-23-2009, 08:08 AM
Hi Malayaleetexan... I'm glad you have found another rheumy to try that looks promising. I hope you will stay in touch and let us know how your appt goes. Jump right in anywhere and chit chat with us.