i got a dx of lupus yesterday and also very low growth hormone on labs

[andreamarie]

Yesterday I say Dr. William Pachas, a rheumie at Mass General. My sleep specialist there referred me, saying "he's a great resource." I'd seen him six wks ago when he was fairly matter of fact and sent me for many labs. His door says "Fibromyalgia Specialty" so I knew he believed the whole shebang when I walked in.
First he went over my labs with me. My vitamin D is still low and he increased it. He gave me a very scientific explanation of it's possible importance.
Then he showed me the very low human growth hormone test but said it's not his specialty, it can fluctuate throughout the day, and made a referral to an endocrinologist.
Next he told me I had a positive test that ONLY lupus patients get. This was not shocking to me because doctor's have been looking for lupus for over thirty yrs in me. I've had CFS for sixteen. He said somehow my body was not showing the typical lupus signs because of some immune mechanism. He wanted me to try Plaquenil and ten mg of prednisone to see if I felt any better. I told him I'd been on Plaquenil for Sjogren's and it upset my stomach. I tried to get him down to five mg of prednisone but he said it wouldn't do anything. The lupus thing has come up SO many times in my life that I simply paid no attention until this a.m.
I put a call into the rheumie who I saw last yr. to discuss it with him.
Dr. Pachas did not say I don't have CFS; he said lupus could be making it worse. He spent an hour and a half with me and went way back to my Crohn's dx in '65. I felt like he knew me as a real person.
He is aware of how limited my activities are. He discussed XMRV.
I'm doing nothing now because I went to a wedding this wk and got a dreadful cold.

 

[serenity]

what did he say about XMRV?
well, i'm not sure whether to say sorry or congrats. it sounds like it was good to see a doc who knew so much & get a diagnosis. i think that is always helpful to us.

 

[ukxmrv]

What was the test Andreamarie?,

It may pay to see if that is something that people with CFS are also showing/not showing. Sometimes doctors disagree on tests and exclusions.

 

[andreamarie]

He still thinks i have CFS but lupus making fatigue worse. Docs have been giving me lupus forever, long before CFS, but this is first time i tested so positive. He talked about XMRV for a long time. I had to stop him cause he was using so much of my visit up. He's fascinated by it, but doesn't know what part it plays. He did say we forget it took yrs to find meds for HIV after it was discovered.
I want second opinion on lupus cause I don't want to take dangerous meds.

 

[andreamarie]

he sees lots of CFS/FMS patients. I asked him if they tested positive to these tests and he said no. There is one test for lupus that is significant only for lupus. I forgot to get labs, will have them sent. He did tests cause I have Sjogrens's and Crohn's and if you have one autoimmune disease you get more. Also, many Sjogren's patients have lupus.

 

[ukxmrv]

Thanks Andreamarie for the extra info, that's really hard. Good luck with that second opinion. Hope that the cold clears up soon.

 

[serenity]

wow! a doc that went on & on & was excited about XMRV! that is fantastic!!!
i want your doc!

 

[L'engle]

Hi Andreamarie,

I was mildly positive for both ANA and Anti-DS DNA antibodies... does this ring a bell with you? I was told I may have something on the bell curve of lupus... but its still quite murky. I don't have sore joints or any other lupus symptoms other than fatigue... I've read that system strain can cause auto immunity... hope you can get some answers and relief soon! I too would be wary of taking heavy medication.

 

[garcia]

Wow - a doc who is excited about XMRV! This guy definitely sounds like a keeper.

On the subject of growth hormone, which test did you have done? Was it blood GH itself? Or IGF-1?
Blood levels of GH are pretty meaningless since as your doc says it fluctuates throughout the day, so normally docs look at IGF-1 as a proxy-indicator of GH (GH raises IGF-1). However although IGF-1 is the most common way of assessing GH, it is prone to error as the relationship between GH and IGF-1 is far from exact. A much better way of measuring GH is to do a 24-hour urine GH measurement, since this will tell you how much GH your body is actually producing over a 24-hour period, which is really the most important measurement. Although 24-hour urinary GH is a new, and far from common test, and many/most endos may not be familiar with it.

Having said that you almost certainly have low GH, like most of us. GH output correlates directly with stage 4 (delta) sleep, and as you know unrefreshing sleep is a symptom of this disease.

Unrefreshing sleep = low stage 4 / delta sleep = low GH output.

garcia.

 

[andreamarie]

L'engle, the lupus thing is not new. Thirty five yrs ago I had symptoms that no one could figure out. My internist sent me to a gifted rheumie who watched me for two yrs and finally told me I didn't have lupus. I did have Sjogren's syndrome. I've been seeing the same rheumie for twenty five yrs and he put me on Plaquenil, but it upset my stomach and he stopped it. I had many episodes lasting months when my mother would come up to care of me because I was bedridden and would have severe nausea and other symptoms. The fatique was not like the CFS fatigue I have now. I have Crohn's disease, interstitial cystitis in addition to the Sjogren's. These are three diseases that are risk factors for lupus. I did call the rheumie who followed me for twenty five yrs and he was skeptical at first until I read him a particular test. Then he said it was a 99% marker for lupus. He and I have become very close over the yrs and I am almost sure from the sound of his voice (I'm good at that stuff) that he didn't give me that test in the last few yrs. and was upset with himself. I told him I'd like to skip this yrs appt because I'm going to too many docs but I'd be back next yr. He's been there for me for a long time and has seen me through a lot of tough times. He felt it was worth trying a short course of the meds to see if they gave me some energy. I am wary of prednisone (I wrote two long published articles on it and have been on it) but compared to the meds many on this board are taking for CFS, plaquenil is pretty safe. Also, I know Komaroff has quietly used it. I am not upset about it but a bit stunned because docs have looked for this for thirty five yrs. and it would explain episodes I had before CFS. My regular rheumie knows Dr. Pachas and he said sometimes he's over the top but isn't in this case. I do wonder if the hair loss (which reversed itself) was a symptom. All the derms said it was female pattern baldness, which simply didn't happen or make sense. The dx could be to my benefit because although Sjogren's is a very serious disease, docs don't take it as seriously as lupus.

Garcia, yes it was a blood test and that's why the doc who did it is referring me to an endocrinologist. He said it was not his area. The endo I will be seeing is at Mass General and it is a world class hospital. Might not be great for CFS (although all the docs there I've seen believe in it and one is doing an XMRV study) but is good for specialists. I'll ask about the urine test if he doesn't recommend it. My sleep specialist is there (he's a neuro) and I will email him Mo. about both things. Also, sleep specialist wants me to have a mito workup. My sleep problem is severe and I'm sure sleep specialist is aware of sleep connection.

I asked doc, who is a rheumie and a fibro specialist, if he sees growth hormone this low and he said he hasn't been doing test that long but hasn't seen one as low as mine.It was practically off the chart. I'm not concerned about this either but have wanted to see an endo forever and couldn't get a good referral.

I'm sixty five but long before that I baffled really good docs; sometimes for the good things. My spontaneous remission from Crohn's after being deathly ill is so rare that before better testing, many docs questioned the dx even though I had surgery and path slides. By now, nothing surprises me.

To Ell and Garcia, thank you for your responses. Now I have to get rid of the vicious cold I'm not supposed to get.

 

[andreamarie]

Something interesting: the NIH does not allow people with lupus to give blood, even if they are in remission. Fear of antibodies being transferred, etc. When are they going to get around to XMRV

 

[L'engle]

Hi Andreamarie,

I'm sorry you have so many illnesses all ganging up on you. From what I've read I don't think my autoimmunity is that strong, so I guess most of my fatigue is CFS. You mentioned that the lupus fatigue you had was different from the CFS fatigue... are there any specifics you can describe? Sorry, I know that's not a very fun question to be asked... only if you are comfortable talking about how the two fatigues vary.

Thanks and take care!

 

[andreamarie]

I don't think I'm having fatigue from lupus. The episodes of fatigue I had yrs ago when docs were looking for lupus were very different. I slept all the time without meds. I never had good days and was in bed a lot. My late mother would come up and take care of me and I'd get better. The CFS fatigue is totally different; even the first three months when my mother did come up. Doc thought lupus could be contributing but if it is I can't tell difference.

 

[L'engle]

Ah, I see, so more of a consistent state of illness for lupus, rather than the ups and crashes of CFS. Thanks very much for sharing your experiences. I hope you can be free of both of them soon.

 

[kolowesi]

andreamarie lupus and CFS

Hi, and I think I'm happy for you! If you have it, you may as well know. And as you mentioned, lupus gets a lot more respect than some other diagnoses.

Several years ago, I had the malar rash, painful joints, hair loss, speckled pattern ANA, and very dry eyes (every Sjogren's symptom but one!). My tests were negative for double-stranded DNA antibodies and negative for Sjogren's. I was dx'ed with "probable mild lupus," and assured it wouldn't progress to the fatal kind.

With your autoimmune history, I'm guessing you showed up with antibodies to DS-DNA. There is an old test with latex in the name, but I don't think they use that any more. I was positive on that, had mildly elevated ANA (highest 1:1200) and one time, elevated RF. I was put on plaquenil and it bothered me as well.

So my rheumy put me on doxycyline, 100 mg twice a day. That really helped me, though I was incapacitated the first week from a herx reaction. So keep that in mind, if you can tolerate it.

I had something previous to CFIDS, starting in my 20's. Joint pain, extreme fatigue and a weird black mood depression. It was triggered by cigarette smoke, or too much sun, and maybe fluorescent lights.

Last year, I had a horrible autoimmune response to allergy shots. So I think it's more than just the infections we are carrying, but who knows.

I am negative by viral culture to XMRV. Wonder if I might have it though as I had very low B and T cell counts when I was first sick. I do take slow-release hydrocortisone, about 7.5 mg, and I still have eczema. Just started low-dose naltrexone, and it is helping. I take a bunch of stuff to sleep as stage 3 and stage 4 sleep were zero percent.

Also, I probably have Lyme and definitely have active mycoplasma at times, so the doxy helped with those. And they may cause autoimmunity.

Please keep us posted. I am also glad you are able to get such good medical care. That doesn't make up for being sick though. It's extremely awesome to hear you put Crohn's into remission!

Best wishes,

Kelly

 

[andreamarie]

L'engle, you misunderstood me. I do now have the up and down crashes of CFS. I also have the sleep disorder. I DID NOT HAVE THESE YEARS AGO IN PREVIOUS YEARS.

 

[andreamarie]

I had an elevated ANA and ANA speckled. I did not have test you mentioned that you suspect they don't use anymore. I was positive for Anti RNP Elisa. Rheumi also prescribed ten mg of prednisone but I have not taken it yet. I've never heard of doxyciline prescribed for lupus. I made an appt with rhuemi who's followed me for tweny five yrs to get his opinion. Thanks for your response.