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Discussion Starter · #1 ·
Dear all,

Hello Lupus Forum Community, I hope I am finding u all as well as can be expected. I am reaching out to u for help, as I just had a doc's appt that upset me so much I can barely put it into words & u can help me simply by responding to me w/ your knowledge & experiences.

I am not a newbie to lupus, a veteran rather, as I was officially diagnosed 12 years ago w/ lupus, fibromyalgia, & Hashimoto's & they are what I am on disability for. I live in a small town of NH & there aren't too many rheumatologists to choose from, & not having my own transportation makes me unable to travel far for appts. (I take a shuttle provided by the local hospital.)

My rheumatologist is extremely tough to get a lupus dx from, however she has dx'd me w/it & fibro. I also saw another rheum when I moved away for years, who arrived at the same dx's after doing her own testing. Then I moved back here so I went back to my original one. The problem I have w/her though, is she is extremely conservative with rx therapy & will only rx me Plaquenil b/c, in her own words, she does not rx immunosuppressants unless there is severe organ involvement, and my main issue is my crippling arthritis, my lung & kidney involvement are minimal & under control. But I am in constant pain, my quality of life is low, & I've just been recently diagnosed w/ peripheral neuropathy due to lupus by a neurologist, & he, as well as my PCP, believe that lupus is not only causing me enough pain to warrant something stronger, but is causing me some damage to my body as well.

So on their recommendations, I made an appt w/a new-to-the-area rheumatologist to see if he'd feel different. Unfortunately, this young man is very sick (his office is keeping whatever he has confidential), so at first they kept rescheduling all his appts, but then they had an older rheum from another practice take on his patients as it became clear he would still be out for some time. I went in to see the replacement doc to see if he'd agree to rx me immunosupressants & boy was I thrown for a loop when he said he believed I definitely had the Hashimoto's due to the extremely high anti thyroid antibodies & TSH I always have, but does not believe I have lupus & wants to remove my Plaquenil based on one recent blood panel where my ANA actually came back negative although that same blood showed my anti double stranded dna antibodies to be 1:160 by CLIFT where a result of over 1:10 is considered positive by that lab. My female rheum did these bloods & she didn't say anything about the neg ANA, which has only been neg this one time & is usually a high pos. She only commented on how the high anti ds dna validated the lupus dx.

I also mentioned my hx of elevated ESR's, CRP's, anemia, proteinuria, malar rash, mouth sores, & extensive hair loss on head, arms, & legs which, I said, has since grown back a lot on my head. And he said the ESR's, CRP's & hair loss are all from my Hashimoto's and he ignored the rest. He said lupus hair loss on the head usually involves a lot of scarring and does not grow back, however this contradicts what I have researched. I do know that Hashimoto's can cause hair loss too though, so maybe with that we can't identify which is from which.

I said, "So based on that one & only negative ANA, you think I only have Hashimoto's & fibromyalgia, but not lupus?" and he rolled his eyes, sighed, & replied exasperatedly, "There is NO such thing as fibromyalgia!" He said it like he had already told me 20 times & was sick of repeating himself.

I believe fibromyalgia is real & so does my PCP & the two other rheumatologists who diagnosed me w/it.

So my main question to all of you, and please everyone answer that has any opinion at all b/c I am so upset at this it would really help me to get a consensus of what people who understand lupus think about this. I am very smart but I have emotional problems, and when a doc treats me like this I wish I could just be angry & somehow prove them wrong or simply just not return, write him off as a quack, and be confident in my other docs. But instead I start to question everything, including my own identity, and curl up in a ball, beat myself up for not being stronger, and wish I would just die. I know, pathetic. But that's me.

Anyway, my main question is this:

Have you ever heard of a rheumatologist or endocrinologist believing that high positive levels of anti ds dna antibodies, showing up everytime blood is drawn, being indicative of Hashimoto's & only Hashimotos? And not having it indicate lupus, MCTD, or UCTD? I have Dr.Wallace's book & he says antiDNA ab's mean lupus over 90% of the time (not that 90% of lupus pt's have them, only ~50% do).

My 2nd question: has anyone else ever had a NEG ANA but a POS anti DS DNA from the same bloodwork? and what does this mean? the ds dna is in the nucleus so wouldn't it just mean u don't have antibodies to the entire nucleus right now but you do to the ds dna inside of it? I have no idea, thats just a guess.

My 3rd question is: do you think it right to remove someone's lupus dx & medication all on the basis of one time being ANA neg but still positive for ds dna? since when can a lupus pt's ANA not fluctuate? who is ever 100%, 100% of the time? I understand over 90% of those w/lupus will have a + ANA but so have I every single other time it's been tested, at least 6 x's.

And my 4th question is: is he wrong or right about lupus hair loss being very scarring and not growing back? B/c everything I've ever read says hair loss from systemic lupus is not scarring & can grow back. And I'm thinking maybe he's more accurately describing DISCOID lupus, which only affects the hair & skin but affects them severely.

Please ask yourselves how you'd feel if tomorrow you went to a different rheumatologist and this happened to you after being treated for lupus for 12 or however many years, then please tell me how you would handle it.

I really need help with this kind of stuff b/c I lack emotional reasoning and coping skills and something like this hurts me so bad I don't know what to do with it. I just wish I could go back in time & not have seen this guy.

Please, what do I do or think?

And how do others deal with the doctors that don't believe Fibromyalgia even exists?

I am extremely interested in reading every reply so please, even if you normally read these but don't respond, I ask of you to respond if you will b/c I really care what everybody thinks & I am really hurting for some constructive feedback and/or validation here.

I thank anyone who took the time to read this & thank you even more for responding.

Sincerely & with love,
Amber Rose
 

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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
 

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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.
 

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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
 

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Discussion Starter · #5 ·
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
 

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Discussion Starter · #6 ·
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.
 

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The hair on my arms and legs doesn't seem to be affected. Mine is very light so it is no big deal but to not have to struggle to shave my legs would be a plus.
 

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The fact that you reached out to us is treatment that you do have great coping skills despite what your feelings are. Take very good care. Jolinda

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