[lauralee77]

For OVER a month now, I have been having high fevers that sometimes go all the way up to 104. My rhuematologist assumed it was a lupus flare and upped my prednisone twice, but the fevers kept coming back. Basically I am pretty much always running a fever now, even though it may be 99%. I would wake up with horrible night sweats and couldn't get warm in the morning. I would sit in the bathroom under the window and try to warm up. My rhuemie finally admitted me to the hospital and put me on a huge dosage of pred which did nothing for the fevers. I was in the hospital for a week getting every infectious disease test under the sun because that's what they were concerned about with the fevers that I had an infection. They found nothing in any of the tests. Meanwhile my white blood cell count dropped, went back up a tad and then dropped down again to a pretty low level. I think that's the main concern at this point--my white blood count. I had extra protein in the urine and a swollen liver and spleen as well, but no organ damage. After four days of being out of the hospital the fevers haven't abated. I thought they had but got extremely upset and discouraged when I had one of 103.5 this morning. It went down very quickly but fevers this high scare me. I am an extremely anxious person to begin with so this lupus is very hard to deal with. I went to see the rhuemie today after being out of the hospital for four days so basically they can do a white blood cell count and see what our treatment options are. Cellcept was mentioned and maybe a couple of other meds. I'm having serious brain fog so I tend to forget things people tell me. I'm not sleeping much at night because of the predisone and high fevers.
I know many of you have been through your own lupus crises so maybe you have some words of hope or encouragement. I'm really trying to pray a lot and develop a closer relationship with God. I did have another very scary time in the hospital a couple of years ago with my pericarditis and I got through that, but the depression lasted for months. When the doctors act baffled though, that scares me.
Any words of hope, encouragement and even me just writing out these feelings helps.

 

[keebler]

(((Laura)))

I am sending you big, soft, gentle hugs your way.:hug::hug:

I don't have any advise, I just wanted to tell you that I will pray for you.

Have you gone somewhere else for a second opinion?

Please let us know how you are doing. You are going threw so much right now.:there:

Take care,
Lyn
:rose:

 

[K-MARIE]

hi lauralee,
i just wrote out a long letter and sent it to find I wasnt logged in and had to start over,,
anyway in december I had symptoms like yours, One sunday I felt like a flu was coming on, and I began a fever, I never developed a flu or cold so i went to my gp after 5 days , he thought it was a virus, I agreed, BUT it continued and I was feeling so ill, hard to explain So I went back again and again and he was running many many blood test but nothing came back abnormal finally after 16 days my liver enzymes were elevated and also my white cells, then my ankles swelled and so they ran hepititus test and that was neg, a echo for my heart that was normal. I was sent to my rheum and sed rate was high , He thought it was lupus flare which I have never had since I mostly have discoid lupud and not systemic ( although that can appear any time) My fever was like yours 102-104 every night it was worse and the chills were unrelentful. sometimes in the mornings it was lower and i would go to work but always by noon it was on the rise I could feel it by the chills and my eyes would burn, oddly I would get home and wrap in blankets and drink ice water,,( hot inside and freezing outside) I was so concerned and scared because they were not finding a way to stop the fevers, I went to the ER one day and they told me there was nothing they could do that my gp hadn't already done I was desperate.. I sobbed and went home.
After 21 long miserable days the fever slowly went down to 99 and stayed there for 2 more weeks, I was feeling better my ankles were normal and the liver test was back to normal, the chills were gone. They never found infection or made a conclusion definately, only suspect lupus caused this, and I was about to start pred when it got better so didnt need to take it, I feel for you because it was horrible and frightening to know something is happening to make you this ill but no answers can be found. I want you to know that this happened to me and by some miracle at least( I felt it was a miracle)it vanished the way it came, so keep praying and I will pray for you ! keep in touch I really care and know how you feel..

Hugs, Karen R ( k-marie)

 

[lauralee77]

thank you

Karen,
Thank you so much for sharing your story. Each time I hear something like this, it gives me more and more hope. The prednisone has put me in a funk so I'm not at my most positive and I am experiencing extreme ups and downs. I appreciate you taking the time to type it up after you lost the whole thing! This board is great though because we can lift each other up when we are feeling down. Maybe the more I experience, the more encouragement I can give to others. It is an extremely scary feeling not being in control and knowing what the future holds. It is something I'm trying to work out with God right now. I do believe in miracles and positive thoughts and that i can get through this. Thank you so much for your prayers. They are very much appreciated!

 

[mysharonna]

Hi Laura,

We rely on the doctors to tell us whats wrong..and then fix us - When even they are stumped, its frightening...and frustrating!

I am so sorry you are going through such a difficult time right now. Just wanted to send you a ((hug)) and will keep you in my thoughts and prayers.

Hope you get some relief and some answers soon-
Sharon

 

[K-MARIE]

Laura, Your welcome.
I know that I wrote on this board when I had the fever, and some told me lupus flares can have fever, no one mentioned having one this long. honestly I thought it might never go away, but as I said it did and I wish so much I had a explanation, I know my doctors were getting very concerned they talked on the phone a hour,( both told me this) they were totally puzzled. I agree its so wonderful to have a place where people help each other and certainly understand this disease, many of us differ in symptoms and severity but I think that this group is very concious of feelings and so supportive, you were in my prayers last night and I will continue, along with others that pray for you, ( bless them all) our voices are heard!
please continue to update us how you are , we all need friends!

karen R

 

[Maia]

I would be scared too (((hugs)))

I will be hoping and praying for you that is is some virus that will eventually leave your system. Lupus fevers are not usually that high... & there are more viruses out there than they could possibly test for I would bet!

I hope you are able to just rest as much as possible & this will pass sooner rather than later.

 

[Stacielee1967]

Karen,

I am sorry your not doing well. I can understand how you feel and I too dfound it frustrating. I had a fever, 104.9 while taking ibuprofen and tylenol (paracetamol) around the clock. This went on for weeks, fever up and down. The doctor wanted me in the hospital but I refused. She thought I had some form of a chest infection but I never coughed. She aso thought I had a urinary tract infection because the urine dip she did had large amounts of proteine and some blood but the culture never grew any bacteria. I was started on prednisone, 60mg and it continued for a few weeks, fever up and down. I felt awful but I finally went away. They just put it down to a lupus flare. It is frustrating! I hope your doing better soon.

Stacie

 

[Katharine]

Hello Laura,

I'm afraid I don't have any experience of high fevers, mine always stay very much low grade fevers and I hardly notice them other than feeling too hot and it alway being a "less good and very tired" day.

I can understand that you would be scared and I hope that this will just go away as it has come.... If it is a virus, that it runs its course...

I'm sorry I can't actually help but sending you lots and lots of strengthening and "cooling" hugs

:grouphug2:

Katharine

 

[Allerian]

Laura,
I understand how you feel. I too have been suffering a lot with fevers, night sweats etc. and they completely drain. When I'm on pred the fevers go away but with in days of getting close to 0 my temp gets back up to 99.5 + and stays that way. I think I'm going to be calling my rheumy again. This is getting a little rediculuous and prednisone isn't an option right now as my foot is broken and needs to heal. If you aren't on pred yet you sound like you need it. And I think adding something like cellcept might be neccessary for you if you are needing prednisone to help control flares.
Julia

 

[lauralee77]

Thank you all for your responses. I haven't had the fevers in 4 days now so I am cautiously optimistic. Maybe I am finally kicking them! In fact when I check my temp, most of the time now it's 98-98.8. It's such a relief to not have that body-on-fire sensation and the night sweats that would drench my sheets. I'm actually sleeping at night now. I go tomorrow to check my white blood cell count since the level was so low. It had gone up a little since my stay in the hospital, but maybe since the fevers have abated, they have gone up more. I'm really feeling okay energy-wise but i do get tired out from walking after being in bed for so long. I'm trying to go out and do more things, but also limiting myself with my WBC count being so low. I don't want to get some infection. I actually am on 60 mg of prednisone right now and have been for over a week. In the hospital they were giving me 150 and it wasn't doing anything for the fevers. This is all very strange to me because i went downhill so fast with the fevers and low WBC count. But then again does lupus ever follow any kind of logical pattern?
Stacie, your fevers sound a lot like mine. It's encouraging to read that they did finally go away.

 

[cmfinnis]

Hi

I am so glad that you're feeling a bit better now. I hope it continues. I just wanted to add my personal story to this thread.

My lupus started with high fevers - in the uk we measure them as 37 degrees being normal. Mine went up to about 38.5-39 and I was in hospital for nearly 2 weeks. The fevers are cyclical - they seem to come on every day at roughly the same time - the late afternoon/evening. They make my body 'burn' at the time they're going and are really scary. The paracetamol does not help much. During the burning times, whatever area is affected in that flare really burns and hurts - joints/ chest/ stomach.

I had about 4-5 attacks of this and was in hospital every time until I was finally diagnosed with lupus. After this I now get treated with iv methyl prednisolone - intravenous steroids - the latest one having been Feb of this year. This kills the fevers and burning episodes within 24-48 hours. I get pretty much the same pattern with every flare - which can be between 1-6 per year (since 2003). I have noticed though that every subsequent flare in a certain organ seems to get less the next time it is attacked. Also that immunesupression does work - azathiorpine (imuran) or cellcept - but in my case, only for a time, and then it 'gains ground' on me again and I have to change the immuneseuppression.

I hope this helps a bit - you are not alone,
thinking of you
Cathy x

 

[classyglrl]

eek! I'm so glad youre feeling better!!

Thanks to you and your experience though, I'm going to invest in a thermometer! So THANK YOU!

 

[Taree]

Glad you're feeling better!

 

[lauralee77]

These darned high fevers came back after being gone for about 8-9 days. I had lowered my prednisone from 60-50 and been on that for about 6 days, when BAM! I'm hit by a 102 fever. Of course I got all upset about it but everyone said maybe it was one of those fluke things. Pretty soon things started getting worse. The fevers are higher....the highest is 104, but now instead of dropping slowly as my fevers used to, they go up and down. Like I can take my temp on a thermometer and it'll be 103. And on the same thermometer, I can take it a minute later and it's jumped to 104. They are so erratic now. My time between the fevers feels shorter and shorter. I believe I only had 6 hours fever-free today. Now that they're higher, I'm constantly sweating. I'm at my wits end. This has been going on now for about 1.5 months now, except for that 1 sweet week of relief.
My doctor said that he discussed my case with four other doctors and they all had different opinions on what to do. My doctor is doing nothing but giving me prednisone. He increased it back up to 60 and has me take half in the morning and half at night instead of the 60 all in the morning. I have been doing this for 4 days now and it seems to be getting worse instead of better.
I also found out that in the past few months, my white blood cell counts had been dropping steadily. He said a low/normal baseline WBC at the clinic I go to is 3.6. In the month of March before all this happened, apparently mine was 1.9! I was taking Imuran as well so when I was in the hospital at 0.7 WBC they took me off of it. I work as a flight attendant (my doc told me this was okay), but don't you think he could've warned me to maybe not work on a plane for awhile?! That's where I might've picked up these mysterious fevers/virus/bacterial/infection.
SO, through my local lupus chapter, my mom has contacted the president about good doctors in the area and she's got a name of a husband/wife team in the area that are good and said she would try to get me in as quickly as possible. We definitely need a second opinion or two. I also want to see all my medical records, although I may see things I don't want to see.
The thing is, he's a highly recommended doctor at one of the best clinics in the states. He's been practicing since 1993 and done a lot of studies in lupus. Every time I m mention him as my doctor, people are like, "Oh yeah, he's good".
In the meantime, I'm trying to keep hopeful and hope that someone will get to the bottom of this! I'm saying lots of prayers.
Laura
:sad:

 

[Lyn57]

Hi Laura,

It sounds like you are having an absolutely dreadful time of it. I am so sorry that you keep having these terrible fevers.

Sending you lots of gentle hugs and best wishes that the doctors can get on top of this.

Take care and good luck. :tinker:

Love Lyn x

 

[Beanbag]

Hi there,

I appreciate how you feel. I to had been feeling unwell and felt as if I had flu coming during Feb this year. I tried working through it (RGN in an ED) but had to sign off work sick. Went to GP as glands in neck painful and swollen and temp 39C+. Told I had a virus but the nect day became alot worse, collapsed at home and sent to hospital by ambulance. I was covered in a rash (looked sunburnt) pyrexial at 40C, couldn't walk and felt gnerally crap. I had my steroids increased and was kept i a week. My rheume is trying to reduce my prednisalone, I can walk short distances now with a stick but Occ Health won't entertain me going back to work yet. It is very frightening, especially as for me this was my first acute flare. As I said, I'm a senior staff nurse in a busy ED and have some medical knowledge, but still find this condition and its effects scary. People think that being a nurse means I fully understand what is happening and can't understand why I get so frightened and down with my condition. It isn't easy but talking to other people with Lupus is making it easier to come to terms with - although still in the early stages - I am used to nursing patients not being nursed and don't like this loss of independence. What I am trying to say is that it is ok to be scared, frustrated, confused etc. but remember that you are not alone and there are many wonderful people who can give you help and advice -just ask and someone out there will have an answer or could point you in the right direction.

Sorry if I waffled on
Take care
beanbag:rotfl: