[Postie]

As you may know about my different symptoms and the fevers I had wrote about, here is an update and I still didn't find any answers out.

I'm very confused about fevers in Lupus people. I know you get fevers but sometimes do you get them everyday for awhile or is it just a sporadic thing. My rheumy's office called me back about the fever questions. This is what the nurse said. You don't get fevers like that with Lupus. Has anyone found out any differently?

I have CFS and my specialist told me that some people with CFS get fevers and it means their body is trying to fight it. Now get a load of this--the nurse slipped up. She told me he said you don't get fevers like that with lupus. I said the doctor never told me that I had lupus for definite because he wasn't sure. She said I meant to say connective tissue disease. I asked her if CFS was a connective tissue disease and she said no and then she told me he doesn't deal with CFS. So he is saying I have lupus.

They also said he could run two blood cultures to see if there's infection but he said my white count is really low. So in other words, I am not doing it because why bother.

Can anyone help me to make some light of this?

CindyLou

 

[Maia]

Fevers in lupus are low grade the vast majority of the time when they are due to lupus activity itself. This means 101.5 degrees or less, typically just over 100. In my case, these fevers can last for 2 weeks tops. Often just a few days. I have heard from others who report it just lasting a day here and there, or a month or more.

Higher than 101.5 generally means there is an infection of some sort, such as bladder infection that is symptomless or some other infection viral or bacterial. On rare occasion, it has been believed that lupus itself will cause a higher fever (sometimes rationalized to be lupus attacking the part of the brain that sets the thermostat for instance).

If your white count is really low, and you are only being treated for CFS presently, I think it's time to ask your doctor about starting treatment for a connective tissue disorder. The low count could be caused by lupus itself, and only treating lupus will improve that count.

 

[Postie]

Maia

Now with me, I have had fevers since I became sick in 1998. So it's nothing new. This week was the first time I have them since 5 months. Most of the time when I get fevers it is around 100 or 101 point something. But it always fall back to normal by evening or late afternoon.

Why did the rheumy say with lupus you don't get the fevers--did he mean the temps I get? Also if your ANA goes up--what does that mean?

Would you ever know if you have an infection ever since 1998? Wouldn't there be symptoms by now? Especially like in bloodwork or just your own self? Also about the white count--it's 2.1. January was 2.3. Ever since 1998 my white count has been in the 2's or once in awhile a 3 but mostly low 2's. But why would my ANA go up and white count drop--or don't they have anything to do with each other?

CindyLou

 

[Raglet]

infection usually causes high wbc, but on occaision it can cause a low wbc. So, a low wbc isn't an automatic rule out for infection.

Sounds like you need to talk to your rheumie rather than the nurse. Fevers can be a part of lupus, but they are not really a dx criteria as they can occur with so many conditions.

Connective tissue disease covers a wide range of disorders, including lupus, so a person with a CTD does not automatically have lupus. Actually the term is more commonly used when there is not enough symptoms to dx a specific disease (otherwise they would use the name of the specific disease).

Have you talked to your rheumie about this ?

cheers

raglet

 

[Postie]

Raglet

I guess I didn't mean the word infection. I was thinking maybe a virus since I got sick in 1998 and there seems to be really no answer. Maybe a virus causes low wbc. I did test positive for Epstein Barr Virus but it isn't in now a stage. It was only positive way back. So that wouldn't be it.

The very first hematologist I went to when I became sick did every kind of bloodwork and couldn't find answers. He did the bone marrow aspirate as he thought I had leukemia. I went to another hematologist and he said the bone marrow is good. He said when the white cells enter the bone marrow, everything is fine. The problem is when the white cells leave the bone marrow and enter my bloodstream is when my body is attacking my cells.

The first hematologist said I have a virus but it will take a year before it goes away. That was 1998 and I still have it. That's because nobody has answers. The first rheumy I went to about 5 times. The first time he said I know what you have and I said what and he said I think you have lupus. The tests came back negative. Then next time he said I think you have mixed connective tissue disease. So he was guessing all the time. I left after 5 times. So now I have been to this one for 3 years. He knows all about my low wbc and in fact he's concerned that my ANA is higher now and my wbc dropped but all other labs are same.

CindyLou

 

[mysharonna]

Hi Postie,

After reading this post...I felt so frustrated for you I just wanted to scream!! I can relate to what you are going through, I was similarly in limbo before receiving proper diagnosis. However, many of my labs were negative, so I can (sort of) understand my doctors reluctance to push forward.

You have been seeing the same rheumy for 3 years with worsening bloods...I'm just curious what is his rationale for not starting you on any medications..even without diagnosis to see if you improve? Maybe you can talk to him and see if he can start you on something so you can start feeling better.

I hope you get some answers soon. Keep pushing your doctors and dont give up until you feel confident in their diagnosis.

Take care,
Sharon

 

[Raglet]

Mixed connective tissue disease is a specific dx, much like lupus, with supporting lab work. So if your rheumie said that you have MCTD, then it sounds like you have a dx already. If you google it you will come up with a lot of information on it.

I think it would be a good idea to either go back and talk with this rheumie, or if you don't feel there is much point in doing that, then go and see another one.

Be very specific about what symptoms you are wanting to have treated (joint pain, skin problem, fatigue etc) and ask his/her opinion on appropriate treatment.

It does sound like a second opinion could be helpful. Do you know what level your ANA is ? ANA's do not correlate with disease activity (ie a higher level does not mean worse disease) but a good strong positive ANA can suggest a disease process of some sort.

hope you feel better soon

raglet

 

[Postie]

Sharon

Hi Postie,

After reading this post...I felt so frustrated for you I just wanted to scream!! I can relate to what you are going through, I was similarly in limbo before receiving proper diagnosis. However, many of my labs were negative, so I can (sort of) understand my doctors reluctance to push forward.

You have been seeing the same rheumy for 3 years with worsening bloods...I'm just curious what is his rationale for not starting you on any medications..even without diagnosis to see if you improve? Maybe you can talk to him and see if he can start you on something so you can start feeling better.

I hope you get some answers soon. Keep pushing your doctors and dont give up until you feel confident in their diagnosis.

Take care,
Sharon

Do you have a diagnosis of Lupus? Actually my bloodwork stayed the same over 2 years. I have always tested positive ANA. It was never once negative. My ANA always went back and forth from 160 to 320 and patterns were speckled or homogeneous. Now for the first time the ANA went to 640 and the pattern is both names like mentioned.

CindyLou

 

[Postie]

Raglet

Mixed connective tissue disease is a specific dx, much like lupus, with supporting lab work. So if your rheumie said that you have MCTD, then it sounds like you have a dx already. If you google it you will come up with a lot of information on it.

I think it would be a good idea to either go back and talk with this rheumie, or if you don't feel there is much point in doing that, then go and see another one.

Be very specific about what symptoms you are wanting to have treated (joint pain, skin problem, fatigue etc) and ask his/her opinion on appropriate treatment.

It does sound like a second opinion could be helpful. Do you know what level your ANA is ? ANA's do not correlate with disease activity (ie a higher level does not mean worse disease) but a good strong positive ANA can suggest a disease process of some sort.

hope you feel better soon

raglet

The first rheumy I went to said I have MCTD. But for that diagnosis in one of the labs you have to show a high number and I don't have a high number so I don't have.

My ANA was always positive and either it was 160 or 320 and would go back and forth and patterns were either speckled or homogeneous. The pattern is still both those names and the ANA is 640. It has never been 640 and the white count dropped to 2.1.

My white count is always low but it's always higher than this.

CindyLou

 

[mysharonna]

CindyLou,

Yes, I do have a lupus diagnosis..initially diagnosed as SCLE, but a few months ago, I began seeing a new doctor who diagnsed SLE. Treatment is the same for me, so it does not really matter what I call it.

I agree with Raglet, It seems a second opinion is in order here. I hope you can get to feeling better soon.

Sharon

 

[Postie]

Sharon

How would I get any diagnosis from a second opinion if nothing is showing up positive for Lupus. Isn't it kind of a guessing game right now as I'm between a rock and a hard place.

If I even had a second opinion what would they even tell me because of my bloodwork right now?

CindyLou

 

[Maia]

I history of positive ANAs (especially the 1:320 titres and the 1:640 titre now) is very significant bloodwork. A low white blood cell count is also significant blood work. When you add into that your symptoms, some diagnosis of a connective tissue disorder (CTD) such as lupus or UCTD is quite reasonable, and treatment for it could be started.

You can ask your present doctor about starting treatment (such as Plaquenil or a 1-2 week trial of prednisone to see if it improves your symptoms) for a connective tissue disorder and see what he says; and if he believes it's not necessary then you may want to seek a second opinion because it's our opinion that you should be commencing treatment for some sort of CTD at this time given what we know at least.

If you go for a second opinion, be sure to take copies of all past bloodwork with you, especially the ones that have showed positive ANA and the low white blood counts.

 

[Postie]

Maia

By taking Plaquenil or some other kind of med, how does that help a person feel better? Does it take away symptoms they are having or just lower your ANA to back where it should be?

I don't know anything about this.

What causes an ANA to go up?

CindyLou

 

[Clare.T]

If you want to be surer if you have an autoimmune connective tissue disease, yes you need another opinion , because there seem to be a number of misconceptions floating around

First, an ANA of 1:640 is plenty high enough for a lupus diagnosis. There don't have to be any other antibodies present. About 50% have the ds- DNA antibodies and about 25%- 30% have the anti Sm antibodies that are usually regarded as specific.
Most doctors would take 1:320 as high enough. 1:160 would be high enough depending what other signs and symptoms are present.

Lupus skin doesn't have to be sore or itchy. As biopsy proven lupus related skin is another specific why not follow that up. A dermatologist might have a pretty good idea just by looking and a biopsy could prove it even from unaffected skin or even in some cases unaffected unexposed skin.

MCTD is simply a lable given to define a particular set of rather distinctive symptoms with anti RNP as a hallmark. Saying you have MCTD but you dont because you don't have the anti RNP antibodies is about as silly & unhelpful as saying this is a chocolate cake but it can't be because it has no chocolate in it.
The issue is, are the symptoms due to an autoimmune connective tissue disease or not. Maybe you don't have lupus at all - the mere presence of antibodies doesn't mean there is disease. Maybe you have some sort of simmering pre lupus state, who knows. Symptoms are the most important element and the point of diagnosis is treatment as necessary.

Make sure urine has been tested - ditto thyroid, anemias and diabetes

Good Luck

Clare

 

[Postie]

Hi Clare

How often should I get the ANA tested since it showed 640 in April. When would I get that done again.

I am hypothyroid. That got messed up in 1998 when I got sick. It bottomed out at 199!! Endocronologist couldn't believe it.

But my urine was just tested and good. No sugar or diabetes and I've had that tested before. I'm on med for thyroid.

This whole thing started when I took a birth control pill. I don't know if my body was predistined for Lupus or something already and that triggered it. I'll never know. The first month of being on the b/c pill messed my thyroid up. Ended up also with hypoglycemia. But when I started on thyroid med-I never had hypoglycemia again.

This also caused low blood volume and orthostatic intolerance. I never had a problem with any of that. In fact right before I got sick, I was mowing cemeteries. Loved being out in the sun. Never had a problem with fevers.

CindyLou

 

[Clare.T]

Hello again Cindy Lou

I don't know that there is any point at all getting it tested again and again. It will either go up or down or stay the same. It only has to be raised once for diagnosis. It doesn't normally reflect disease activity.
Lupus is the symptoms. If you have enough symptoms you could be diagnosed now.
I don't know much about CFS except that other possible causes of the symptoms have to be excluded. I doubt that heat sensitivity, orthostatic hypotension or hypovolemia are exclusive to CFS.
I suggest getting a second opinion from a rheumatologist who knows about lupus.
Cheers
Clare

 

[Postie]

Hi Clare

Thanks for explaining some of the things as it kind of clears stuff up. I wasn't sure what you meant when you listed the symptoms and you said you doubted they were excluded from CFS. Did you mean other diseases have them too?

I know with CFS you have to exclude other illnesses to be able to have a diagnosis of CFS.

Here are my symptms and you can see if they go with any other illnesses that you can direct me to.

photosensitivity
low blood volume
orthostatic intolerance
rash on face, neck and chest
fevers between 100-102.
muscle pain in forearms sometimes
11 tender points of fibro
severe fatigue
face gets burnt red if in sun at 15 minutes
low white count of 2.1
positive ANA of 640
If I do anything then I'm exhausted for about a week later

Those are some of the symptoms. There may be more but can't remember. Oh yes, memory concentration and brain fog.

CindyLou

 

[Maia]

You have many symptoms that are actually more consistent with lupus than with CFS; what Clare meant is those particular symptoms (orthostatic intolerance, hypovolemia are certainly not exclusive to CFS and they are found in other conditions).

THose that are more consistent with lupus than CFS include the low WBC, high ANA, rash on face, sun sensitivity. It's time to ask your doctor about the possibility that your diagnosis should be changed to something in the autoimmune realm - with lupus being one such possibility. Treatment could make a big improvement possible, once you get around to treating the right thing!

 

[Postie]

Hi Sharon

How did they diagnose you with Lupus?

CindyLou

 

[Postie]

Clare T

You had mentioned about MCTD. I looked it up and checked out under the symptom list and I don't have one symptom. Also the reason about not having MCTD if the RNA isn't high because in the MCTD website you have to have that if you're diagnosed with MCTD and that's why one of my specialists ruled that out. The first rheumy I went to said I had MCTD but the blood results showed that I didn't have RNA. So according to the website in order to be diagnosed with MCTD you have to have a high RNA--if I'm understanding it correctly.

That's why my doctor ruled that out.

CindyLou