Sun before ANA Test?

Hello again...


I think it was karajo that once told me that when you have your ANA taken that if you get sun it helps it be more pos +.

So I'm seeing a rhumie for the 1st time next tuesday and I'm assuming he'll order a re-test (my labs were neg- when I was tested early January). So I was wondering, since we are getting even more snow here in philly this weekend, if like just sitting on my sofa in the sun is enough and if so for how long before the test? The possibility of me being able to sun bath out here any time soon looks slim LOL. I don't think this snow will ever melt. I'm so ready for spring-summer!

Any suggestions? My lyme doc also ordered an ANA re-test for later this month so it seems I'll have it done a couple times. Should be interesting to see the results.

[karajo]

I know the rhematologist tell lupus patients to even stay out of tanning beds.  That could be an option, but be very careful.  They are much stronger than the sun when it comes to burning.  You don't have to roast in order to get the elevated ANA affect.  

I feel for you.  Cold makes me feel bad all by itself.  We live in the deep south and don't have much cold, but it doesn't take much to set symptoms off.  

Keep us posted on the results. I know sometimes it takes a week or so to get the results back.  Be sure and tell the nurse or dr. that you would like to have the results either faxed to you or available for you to pick up.  This way you will have a chance to look them over and do your own research prior to your follow-up visit.

[renschwa]

Thanks karajo-

Well as you might recall I was pos+ for lyme and am on antibtioics and am not supposed to be in the sun with them either. I really do not find that I'm sun sensitive at all,  in fact I like sitting where the sun comes in. Granted we have not had much of it lately (as I watch snow fall now). I do think I will feel better come spring, no matter what disease I have.  

My LLMD did an antibiotic challenge and I did come up more pos+ for lyme, CDC positive actually. But it is me that is pushing to see a rhuemie.  

Kara, do you know if having symptoms that come and go within like a minute is typical of lupus? For example, my right hand will ache or I'll get burning in my left shoulder that lasts a couple seconds and then leaves, or a sharp pain in my left eye/face. That can happen throught the day in various body parts, comes and goes, and moves around. Many of my symptoms do this, they come and go quickly and vary every day. I've done some reading on lupus but I haven't found this mentioned. Only that the disease tends to flare and impacts everyone differently. I've also seen mention that lupus causes fatigue, the most common symptom, which I do not have much of actually. But having Raynauds (which does happen w/ lyme) and an ulcer in my mouth is leading me towards an auto-immune disease over lyme. My primary disagrees but still gave me a referral. She said it is b/c my ANA and lupus markers were all neg- in early january when they tested me. But I know none of these tests are perfect...

I'm anxious to see what happens. I assume the rheumie will re-test me and my lyme doc also ordered an ANA for later this month, anxious to see what comes up and how it differs at all. I'll let you know the results when I get them...

Just FYI- my LLMD told me that she often finds that her patients have elements of auto-immune disease symptoms, and that the connection is not yet known. Sometimes these symptoms go away after lyme treatment, sometimes they don't. So I'm prepared for the fact that my tests might come back normal and we still might not know for sure what disease I really have... it's hard being in limbo. Believe it or not, I'm actually excited about going to the rheumie just to hear what he has to say, even if it is that I probably have lupus. I know lupus isn't the greatest disease to have but at this point I just want to know what I have and treat it, and move on with life. It's been 4 months of constant strange symptoms, seeing various docs, and logging symptoms etc. It would be great just to get an answer.

[karajo]

Hey girl, I know how frustrating all of this is.  I felt the same way with urologist.  Did I understand that you have been to 22 neurologist?  It was the same way with urologist.  I felt like I was wasting my money.  I would go to a gastro dr., who would send me to a urologist.  Then my gynecologist sent me to yet another, then my GP sent me to yet another.  I ended up going to 7.  # 5 asked me what number he was.  How rediculous.  I told him that other drs. were looking at the same pictures and scans he was and saying there was something wrong with my urinary tract.  He just didn't get it, he was more concerned about what the other 4 said than how to help me get better.  Enough with my sad urology story.

To answer your question, YES, lupus can make you feel horrible and within an hour you feel like you had never been sick at all.  Joints will hurt so bad you can't use them, but wait 30 min. and it is fine.  

Have you asked anyone on the lymes forum if symptoms come and go like that?  It would be interesting to know.  

But your primary is right, most people w/ lupus are very tired.  I have days that I feel better, but on flare days I am so fatigued I am in nuetral.  My joints hurt for months before they began to swell.  I'm thinking around 6 months.  As far as the rash goes, 35% of patients w/ systemic or discoid lupus report a butterfly rash.  So obviously not everybody has the rash.  (The Lupus Book by Dr. Wallace)   It seems the rash I have has gotten worse the longer this has gone on.

I understand about the antibiotic and sun exposure.  That might actually help because it would cause your skin to absorb more than otherwise.  (just my personal observation)  The worse case flare I had was after I had spent the day outside on a drizzly, rainy day.  The sky was overcast all day long.  I didn't even think about being exposed to the sun.  The sun make me feel good, but the next day, or even the next, I have a flare.  Another thing that causes a flare is STRESS!  And it doesn't take much to bring one on.  Another thing is stairs.  If I have to climb stairs, I have a flare the next day...guaranteed.  

I know lymes can make one very sick.  I'm praying that that is what you have.  If caught early enough, they can treat it.  

Keep me posted.
God bless, Kara

I like cats too.

[renschwa]

Hi Kara-

No- only 2 neurologists and that's bad enough LOL, and no one can agree on what's going on with me. One neuro and my posiatrist said I could have lupus, see a rheumie. All my other docs disagree but I finally just said- I want a referal, I'm going. I used psoriatic arthritis as an excuse.

So to date it has been 2 neuros, 2 internal meds, LLMD, podiatrist, dentist & soon an eye doc, rhuemie, and oral surgeon. This started Oct. 26th with a visit to the ER for a sore calf and then an avalanche of symptoms came on weeks-months after that, non-stop now for 4 months (but seems much longer than that to me). From what I've read about lupus, even if the doc thinks it is lupus I doubt he'll have enough now to DX me unless something comes up in my labs this time. I read it often takes time to get a Dx.

One of the hallmarks of lyme is the coming and going and always changing nature of the symptoms.I sometimes have every symptom I've ever had in one day, then the next day all I'll have is eye pain, and then the next day I'll have a burning shoulder that went away for a couple weeks and decided to come back. Very odd. Docs look at  me like I'm nuts. (except for my LLMD)

I must say that I do not get that fatigued, occasionally of course, but it's bearable and does not keep me from functioning at all.  I saw that as one of the earliest symptoms of lupus. When this first started with my calf it was a little swollen and my hands occasionally get swollen, to the point where my wedding rings are a little tight but it's not noticeable to others that they are swollen. Instead I have a lot of  muscle aches (feels like ran a marathon when I have not )- burning shoulders/neck with crackiness, achey (achy)/burney hands & feet, neck pain and weird neuro stuff- muscle twitching, tingling, pricks, sharp pains in my face, hands, feet & all over really, ear popping/clogged ears- the list goes on. And yes, I've been checked twice for MS. Both say no b/c of the muscle aches stuff and that it's all over my body, not MS like. Tests are normal too. LLMD says this is classic lyme. Not sure why I'm skeptical though. I do live in and have travelled ot places that are tick havens. I'm juist not an out doorsy girl, still wondering where I picked up a tick I guess. (My kitties are pampered indoor cats LOL)


I read somewhere that with lupus the aches tend to be more symetrical than with lyme. For example, if I have achey (achy) hands, with lupus both hands would tend to hurt but with lyme it could just be one (or both). I get pains in both hands, just not usually at the same time, same goes for my shoulders, usually one hurts at a time, one eye at a time, one hamstring is sore etc. Not sure how accurate that is. Just from my reading I feel like I fit the lyme symptoms more but with the recent development of raynauds in my feet and this funky ulcer in my mouth, I thought more about lupus and other auto-immune diseases. I already have psoriasis so I worry about that making me more susceptible to auto-immune stuff. As you might also recall,  I was the one that had the weird finding in my ANA. "Cytoplasmic speckling of unknown significance though generally not consistent with a Dx of Lupus-" is what the lab report says. So I'd rather have it re-taken and hear what the rheumie has to say about it b/c I'll always wonder about it if I do not get checked out.

Raynauds has been assoc'd with lyme but mouth ulcers not so much. I wonder about the Raynauds being associated with my blood pressure med too- inderal. I read that there is a link but my primary would not change my med. She didn't feel it's necessary as she said raynauds is very common and not really a problem. But I would prefer to change it and I may go back to see another doc while she's on maternity leave.... i'm looking to make a change!  

Have you ever heard of anyone having an ulcer on the mouth of the floor that changes sizes throughout the day? It's weird. Dentist said def. not cancer and he does not think it is related to any disease I might have lyme or lupus. He said no, I just think its plain bad luck and this is something unrelated you got here LOL I'm seeing an oral surgeon in a couple weeks, after the rhuemie, b/c I'd like the rheumie to see it too.

[karajo]

Raynauds is tricky.  I also know they have associated it w/ fibromyalgia.  And that can cause some muscle problems.  Usually fatigue goes along w/ that as well.  

Sometimes when my system gets overwhelmed w/ acid I get mouth sores.  Just to see, you could try eating more yogurt and take some acidophilus.  Neither would hurt anything.  

Yes, I've never heard of the cytoplasmic ANA.  

I really wished I could be more help to you.  Fatigue is such a common symptom in lupus.  That is not to say you don't have another autoimmune disease.  There are quit a few.  Some that you might want to check into are Behcet's disease, dermatomyositis, and polymyositis.  I am not personally familar w/ any of these, but think it would be wise for you to reasearch these.  

[renschwa]

You have been helpful! I'll be sure to research those too.

I'm seeing the rhumie tomorrow! I'll let you know how it goes!

So how long should I be in the sun before my ANA test? It's warming up here (and by that I mean in the 40's-50's)LOL.

[matilda587]

hiya,,,do you have any comment about my speckled test...above renschwa.you seem to be quite knowledgable about this stuff.

[renschwa]

Actually it is karajo that knows her stuff. I'm a newbie here, still trying to figure out what is going on w/ me.

No one seems to know what the cytoplasmic speckling of unkown significance means on my ANA test. Some docs say it could be my psoriasis coming through, but no one seems to really know. I'm seeing a rhumie tomorrow. I'll let you know if I learn anything.

[renschwa]

Hi karajo-

I saw the rhumie today... He suspects that I have 2 things going on. Lyme and some sort of auti-immune reaction due to my psoriasis- psoratitic arthritis too. He said infections and trauma to the body often cause psoriasis to go out of control causing some of my symptoms, beyond what you see on your skin (not sure which ones, forgot to ask, but will at follow-up). I asked about lupus. He said that would be lowest on his list of possibilities as I do not fit the lupus pofile very well in his opinion. During the exam he also said, you def. do not have RA either. He said I know you are probably surprised to hear that this can be linked to your psoriasis but he said that psoriatic arthritis is likely involved here (espec given how bad my psoriasis is, family Hx etc). He said this could also have been the cytoplasmic speckling in my ANA result. I'm kind of surprised by this so I'm glad he ordered testing for other diseases (for peace of mind). He told me I'm anal and I will be thorough. I said, good that's what I want. I said test me for everything.

But this is the tests he ordered and he asked me to go to a specific lab for the testing b/c he does not trust others. I go back March 16th for results:

C-Reactive protein
CBC
CMP
Comp ANA panel
Complement Component C3C
Complement Component C4C
Sed Rate
Urinalysis, complete
Vitamin D, 25-Hydroxy

[karajo]

Sounds awesome.

It's great to hear you are moving forward.  

What did the dr. want to do about the psorisis?

Keep me posted.  

God bless, Kara

[karajo]

Hi there,

Please forgive me for not responding to your question sooner.  Had a busy week.  

I'm assuming you are asking about a speckled ANA pattern.  According to "The Lupus Book" by Dr. Wallace, The speckled patter is seen in SLE, numerous other autoimmune diseases and in some healthy individuals w/ low amounts of antibody.  

If this answers your question, what is your level?

Kara

[renschwa]

Thanks Karajo,

I got a call from the rhumies nurse on friday. She said they got my blood work back and that my Vitamin D was "extremely" low and that the doc wanted to call in a script to my pharmacy for something I should take once a month. I have not picked it up yet as I was in Wash, DC this weekend but will pick it up today. I know Vit D has been linked to psoriasis but I'm thinking it must be really low for them to call before my follow up appt on the 16th. But I will not take it until I call my LLMD tomorrow just to be sure this is not something I should worry about mixing with all my lyme meds. I asked the nurse if anything else showed up in the labs and she said the vit D is the only the doc mentioned. I go to him March 16th for follow up.

The meds the rhumie told me to research and "mull" over for my next appt for  the psoriasis is Humira & Remicade. I believe they are injections/IV type meds which does not thrill me and the side effects I read about are scary but that is the case with many drugs. I think there is a psoriasis forum on here so I should probably get myseld on that too...I really do not want and probably can't take these drugs until lyme treatment is done with. The meds for that are rough enough on my tummy!

I hope to get a copy of all my labs tomorrow. I'll keep you posted.... I also see the oral surgeon for consult about this funky ulcer in my mouth on tuesday. Little by little I'll get to the bottom of things!

[Mom2four85]

Just wanted to say a word of caution about being in the sun before an ana test.

Thurs I decided to try to this since Friday I was having my ANA plus alot of other things tested.  I spent about 5-7 min front and about the same or less on back - it was about 50 here which was cool enough I wouldn't get over heated but UV index of 10+ (FL)
The only time I ever remember burning being in the sun was at the beach spending all day once...so this was a surprise when I burned to a crisp and my eyes wouldn't even open Friday morning.
It's taken me until this morning jsut from that exposure to even be able to sit up much. I know last year I started with sun/light sensitivity, but this is the worst episode I've had and with alot less time.

Be careful if you have a sun/light sensitivity if you do decide to get sun before your ANA.

[renschwa]

Thanks for the warning. Hope you feel better soon!

[renschwa]

Hi Karajo-

Just sending an update.... Seems I'm still in limbo

So my bloodwork came back with a pos+ ANA & SSA but everything else was normal so my rhumie said he is not thinking about meds or anything just yet. I thinhe said something like no evidence of active disease- I forget now his exact words. He wants my bloodwork taken every few months to keep an eye on things... He said some people have both of these and never go on to develop a disease. My unprofessional opinion though is that I have some sjogrens going on that was triggered by the lyme disease (I've read about a connection). My LLmd said it is possible and these things often resolve with lyme treatment, but sometimes they don't.

But in general I'm feeling much better and seem to be responding to antiobitoics. I guess that is a good sign. Though this week since it is now getting warm I was outside for a short time, like15- 20 minutes and got a sunburn face! So again auto-immuny type stuff but also a side effect of the Doxycycline too so it is hard to decipher what's really going on sometimes.... But other than that I'm feeling really good. My joint/muscular and neuro symptoms have dropped dramatically.

That cyst in my mouth is something called a ranula- a blocked salivary gland, which hints of sjogrens too in my opinion but the rhumie did not seem too concerned about it. I'm going to ask the oral surgeon if he can biopsy it for sjogrens and lyme, but I'm sure he'll think I'm nuts. That surgery is coming up in April- tons of fun.

Also, my lyme docotor gave me a script for Plaquenil, as it is used to treat lyme too apparently. I have to see an ophthalmologist for clearance. I think you've mentioned this drug before? Do you know what side effects I can expect? I'm nervous about taking it. I'm just getting used to the Doxy and do not like taking drugs in general (espec several at same time) but what can you do? and they seem to be working...

Hope this message finds you doing well...

[karajo]

Hey girl, glad you touched base again.  

Did you get yo exact levels on those antibodies? (ANA and SSA)

SSA is present in most patients w/ Sjogren's (dry eyes, dry mouth and arthritis) and 20-30% of those w/ SLE.  It can also cause increased sun sensitivity.  

As far as plaquinel in treatment for lymes, I'm not familar w/ that.  maybe someone on the lymes forum.  (I hope you are in contact w/ them as well).  I think you're right about Doxy causeing sun sensitivity.  I'm on plaquinel for lupus.  Initially it caused some diarrhea, but that didn't last but maybe a month.  

I'm so glad to hear that you are feeling better.  I'm doing well too.  Had a stomach bug earlier in the week, which threw me into a flare.  Reluctantly went on prednisone 12-day pack.  But am feeling much better now.  I forget how bad those flares really are until I'm in a geniune downward spiral.  

You sound like you are keeping a positive attitude.  That is really important and will carry you a long way through this journey.  

God bless and am praying for you,
Kara

[renschwa]

Well it says sjogrens antibody (SSA) >8.0. I can't really tell if there is a number for ANA. It just says pos. Is it the Antinuclear Antibodies? If so that is, 1:80.
The SSB and everything else is neg/normal.

Glad to hear you are on the mend!

[Reshmisusan]

Hi,
I am new here, I had red spots on my leg 2 weeks ago with knee pain and my family doctor ordered blood tests thinking I had vasculitis. The ANA test came positive with speckled cytoplamic pattern. I have to go see my GP tomorrow and see what he says..I don't have any other symptoms....and my leg rash went away in 2 days...Just wondering what could it be?

[karajo]

Autoimmune diseases are usually dx from the lab results as well as symptoms.  They add everything up.  Although sometimes an ANA reading can be possitive years before any symptoms appear.  The amount is important as well as other things like the CRP or sed rate.  The speckled pattern is seen in SLE (lupus), numerous other autoimmune diseases and in some healthy individuals who sho low amounts of antibody.  I've never heard of the cytoplamic pattern though.

Did they also check for platlet counts?

[karajo]

I was looking at a site on RA and found that word "cytoplasmic".  Here is what it said:

Cytokines: These are substances in the blood that communicate with white blood cells. Some of these cytokines organize the attack on harmful events like infections, which results in inflammation. When the immune system is working normally, the attack is ended once the infection has been fought off. However, people with RA have levels of certain cytokines that are too high. This means that the attack and the inflammation go on and on. It's this constant inflammation that causes the signs and symptoms of RA.

There are several cytokines involved in RA. Three of the most important are:

TNF: This is an abbreviation for tumor necrosis factor. In people with RA, TNF is a cytokine that plays a large role in maintaining inflammation.
IL-1: This is an abbreviation for interleukin 1. Interleukins are also cytokines. IL-1 plays a role in the immune system by communicating with white blood cells. People with RA have too much IL-1 in their systems, which is another factor in inflammation.
IL-6: This is an abbreviation for interleukin 6. In people with RA, there is more IL-6 than any other cytokine in the lining of the joints. IL-6 is a major driver of inflammation in people with RA.

http://www.rheumatoidarthritis.com/understanding-ra/default.aspx?s_cid=1069ppcwhi&s=S0343&f=F000409&p=P000517&utm_source=google&utm_medium=cpc&utm_term=symptoms%20of%20rheumatoid%20arthritis&utm_campaign=RA%20Symptoms