Please Help...Neg ANA High POS anti dsDNA

Hello Amber Rose and I want to say how sorry I am at the appalling appointments you have been through.

To have a Dr rolling his eyes at you, at any time is inexcusable and his opinion is already invalid in my book !

It sounds to me as if you have had one bad appointment after another. For your first Rheumy to suggest she won't prescribe immunosuppressants suggests to me that she knows very little about autoimmune diseases and Lupus. The whole point of effective medications is to STOP the organ damage rather than wait until it has done it's worst before prescribing. I would not spend another minute under her care anyway. You are very reasonable to question this policy of hers.

Next..... most people's hair loss through SLE is calmed right down when their system is calmed with meds...yours obviously has not been well managed and your body has not got to that point. It is true that Discoid can cause scarring...and I agree that he is getting muddled up with that, which makes me roll my eyes !

I would think to know whether Fibromyalgia does/doesn't exist he would have had to run a very extensive research program and it sounds like a personal opinion to me, which has no place in medicine.

Do you have any other Rheumy you can go to, even if it means travelling ? Do you have any family support whilst going to these appointments? somebody who is calm but assertive ? That can be really helpful.

It is also good to go with a plan of what you need to say in a reasonable, concise and intelligent manner; so writing it all out and questioning in a rational way can make the time spent more fruitful; however, I am not sure that you would have much faith in their responses anyway given their track record so far.

There are good Rheumy's out there , so don't give up and do keep a daily diary of events noting your pain/symptoms and pain grading them, note what they stop you doing and how you feel, jot down the weather pattern and the activities you are doing. Make specific observations ie I can't lift the pan out of the cupboard etc That way they can assess how well controlled you are with your joint /mobility pain...or not.

I am glad you felt you could come here...... let us know how you get on and what your next step is....whatever is going on with you...it needs to be sorted and if they say it is not Lupus and/ or fibromyalgia...then the question is...What is it and what is causing the high anti ds dna ?.......................Take care, Claire

Hi, I just wanted to reach out to you and reply. It is my observation of lupus by talking to people that the hair loss with people with SLE grows back once on meds and the disease is under control. Those with skin disease get scarring unfortunately. I have found my hair follows a pattern and the loss is in the same places, my hairdresser notices when it grows back.

As for the antibodies, they fluctuate and a good doctor should know that. I have had a very low positive ANA and positive anti ds DNA, so I wouldn't be surprised if you had the result you got. The main thing is you had lupus activity and if it was high then action needs to be taken.

I am on DMARDS for my joints, the lupus was hitting them hard and made any activity unbearable and just downright miserable. Life is much better now and it got the fever under control as before I had a fever every day just on Plaquenil. So don't be afraid to push for what you know your body needs. Your neuro is obviously behind you.

Take care.

I am sorry to hear you are being treated so poorly. Unfortunately I have heard of other doctors with some of the same views, especially about Fibromyalgia. In your same situation I would ask my PCP or neurologist for a referral to see another rheumy. It may mean going out of town but it would be worth it to get the care you need.

My rheumy has said that if someone looked at my bloods now they would say I didn't have Lupus. The ANA fluctuates between positive and negative depending on how I am doing. This pattern didn't begin until the addition of one of my meds. Once we found the right timing for the dosage my labs revealed the improvement. Without the medications this would not be the case. Prior to my present cocktail of meds my ANA was always positive.

Alopecia or hair loss can be scarring or non scarring. When I flare I get general hair thinning, no scarring both on my head, eyebrows and eye lashes. Once the disease is under control the hair grows back. It isn't just noticeable to myself others can tell when they look at me. Other Lupus patients I know have similar experiences. Only one in my support group has scarring yet we all have Lupus.

Keep pushing for answers.

Take care,
Lazylegs

sorry i just repeated the last message, i don't quite know what i'm doing here.

but thank u 3 so very much for your responses, i really appreciate them & feel so much better knowing i'm not alone & that every legitimate piece of research i have read concur w/what these responses say. i should know better & trust myself but i never do. ANA's fluctuate, like most of the bloods can fluctuate. that's a fact, not an opinion. so its scary that this doc's opinion is based on an ideal i don't think any patient actually functions at (i.e. having 100% of the tests be + 100% of the time).

And my hair loss presents as definite thinning all the way to balding on top, depending on how much i lose. it never scars. and the hair loss happened at its worst b4 i re-began taking plaquenil, then, after about a year of taking it, my hair grew back. yet this doc said "nothing will make your hair fall out faster than plaquenil, another reason to stop taking it." it did not fall out from plaq, i wasn't even on it at the time. i do still have hair loss on my arms & legs, but being female i don't complain about that, i'm just curious if thats common in lupus??? well anyway, thanks again so much, its good to have someplace to come & talk about lupus to people who actually know about lupus. i think thats vital.