Low Grade Fevers

[Mitch]

Maybe I haven't looked far enough to find an answer to my question, the question being, is it normal to run low-grade fevers? They seem to be coming almost daily now. At first they were rare; however, every time I had one, I would develop some paralyzing neuropathy in a new place. Any input would be helpful.
Mitch

[RCOSSIO]

You could be flaring...expecially as you mention frequent fever and neuropathy. Have you change meds recently..dropped pred or switch immunosuppresants???

Go get some bloodwork and schedule appt with Rheumy...remember WG can spead like wildfire suddenly.

[Mitch]

Richard, thanks for your response. I am so afraid. (I'm Danell, Mitch's wife, responding.) I just don't know what to do....I want to scream for help!!! It is so difficult to see him in this situation...

[Sangye]

Mitch, I agree. Call your doc right away. Something's not right.

[Mitch]

Thank you, Sangye.

[Mitch]

Somebody, please help me!!! I'm at my wit's end. This is my husband who is almost bedbound! Breaks my heart to see a healthy, active person reduced to the bed. Is there any help for the caregivers? I'm speaking from an emotional standpoint. Breaks my heart to see him in this condition in spite of the fact that he has such a good attitude.

[RCOSSIO]

Danell...hang in there. WG is treatable and can be contained...but I STRESS, you can't delay. Low grade fevers and joint pains can be managed...but if it starts attacking his kidneys, or lungs....its not worth the wait. Go to your local hospital today...have them run some blood work especially his creatine and sed rate. That will give you enough information as to what is going on. I don't normally like to discuss other WG patients...but one of the patients my Rheumy cares for took too long to see him, and now has to do dialysis to restore his kidneys function.

Put him in your car, take him to the hospital and have them run blood work...

Again I stress its easier to control now..

[Sangye]

Danell, I agree with Richard's recommendations. Whenever you go to an ER, make sure they order basic bloodwork, a sed rate (aka ESR), a CRP (C-Reactive Protein) and a urinalysis.

As far as caregiver support, we do have a few caregivers who post on here. I wonder if it'd be a good idea to give you a unique area to post, since that would encourage others to post as well. But you should always feel free to ask for help, rant, whatever you need. Take things one day at a time. The great thing about Wegs is how quickly things can change.

[JanW]

I agree with Sangye and Richard. Get to a hospital.

[Mitch]

Richard, never hesitate to give me advice. I appreciate any and all. Actually, he saw his kidney specialist last week and his creatine and sed rates were normal. I will call his/our internist on Mon. morning. Initially, this stuff attacked both kidneys and lungs. We were fortunate that his doctors restored function in both areas. Lungs were filled with tumors which are almost non-existant at this point. His kidney specialist says he is clinically in remission. Doesn't seem like remission to me. Do you have days of weakness so overwhelming that you can hardly get out of the bed? No appetite? I know that WG's is different for all patients; I'm just looking for answers, I guess. And last night, I was especially not understanding the constant fevers; he's had them in the past, but these seem to be more prevalant. I did look at a Weg website this morning and one of the symptoms was fever. Gave me, though not him, some relief. I then went to the subject of fevers and found that anything up to 100.4 should be left alone because the body is naturally fighting its own inflammation. Today it shot up to 101.9. Not good.
Well, thanks for listening and responding. You have no idea how much I appreciate any input.

[Mitch]

Sangye, you always seem to be there when someone needs you. What a good soul you have! I'm writing down the tests you suggested, in spite of the fact, as I told Richard, all of these things were normal last week. Thank you. D.

[Mitch]

Thank you, Jan!

[Daggar]

Hey Danell... like Richard said... take him to ER asap!! The kidneys are something that cannot be messed with -- the sooner they treat what is causing the fever/fatigue the better. I wish every day that I would of bypassed our GP and headed into the ER earlier than we did. I read in Mitch's profile that he is off the cytoxan -- what is he currently on for meds? Did his last lab work indicate any elevation in liver enzymes? Doctor's orders -- We're watching for the symptoms you mentioned but it sounds like Mitch isn't on anything that would cause this.

As a "caregiver" I hear your anxiety loud and clear!! When first administering the drugs to Holly I had that sickening feeling that I could be giving her something that could damage her more than the disease itself. It is hard to stand by and watch someone close to you struggle with WG. I always over-analyse things to find the answers and with this disease things are just not that clear cut. If the doctors are sometimes confused.... we as parents, patients, spouses have a right to be as well -- you're not alone in the confusion of it all! :confused1:

The folks on this site have helped a lot in lessening that confusion!

[Sangye]

Richard, never hesitate to give me advice. I appreciate any and all. Actually, he saw his kidney specialist last week and his creatine and sed rates were normal. I will call his/our internist on Mon. morning. Initially, this stuff attacked both kidneys and lungs. We were fortunate that his doctors restored function in both areas. Lungs were filled with tumors which are almost non-existant at this point. His kidney specialist says he is clinically in remission. Doesn't seem like remission to me. Do you have days of weakness so overwhelming that you can hardly get out of the bed? No appetite? I know that WG's is different for all patients; I'm just looking for answers, I guess. And last night, I was especially not understanding the constant fevers; he's had them in the past, but these seem to be more prevalant. I did look at a Weg website this morning and one of the symptoms was fever. Gave me, though not him, some relief. I then went to the subject of fevers and found that anything up to 100.4 should be left alone because the body is naturally fighting its own inflammation. Today it shot up to 101.9. Not good.
Well, thanks for listening and responding. You have no idea how much I appreciate any input.
This is where you really need a Wegs specialist involved, to differentiate between active disease, damage or complications from disease and drug side effects, as well as determine if something else is going on.

The damage Wegs causes isn't necessarily permanent, but it does affect what remission looks like. Remission won't necessarily look like "before Wegs." It might be close or it might be far from it. Many of us--including me-- suffer from the overwhelming fatigue thing. For me it's more prevalent than the days I have more energy.

I'm very concerned about Mitch's fevers. That's not normal. It makes me wonder if he has an underlying infection that's being camouflaged by pred. (Pred suppresses fevers and hides symptoms of infection)

[elephant]

Either way it needs to be checked out soon as possible. Having a fever that long could indicated a bad infection and that can get nasty, on the other hand it could be Wegeners screaming at the top of its lungs, " I'm alive!" I agree with the above statement.

[drz]

An infection should show up in lab work especially if off Cytoxan. My WBC went up even when on Cytoxan though sometimes it only increased to normal range. I believe I also had some fevers just as a side effect to some of the meds I was taking, but usually it was an infection. Regular ER doctors should be able to sort that part out and recommend treatment if needed.

[Sangye]

drz, infection won't necessarily show up in lab work when you're on pred. That one drug really does complicate things!

[drz]

drz, infection won't necessarily show up in lab work when you're on pred. That one drug really does complicate things!

My WBC always went up whenever I developed a bladder infection. I have never got off prednisone yet and was on much larger dosages at those times. Of course they found evidence to confirm it in the urine specimen too plus the symptoms I had. A culture of any suspected area should also show signs of infection if present if it can be cultured.

[Mitch]

Well, we haven't found a Wegs specialist YET because they all live up north! :sad: However, regarding the low-grade fevers and Mitch, our internist, in conjunction with our neurologist, is trying to get an appt. asap at Duke for a plasmapheresis (blood cleansing). I surely hope this is headed in the right direction. They neither one think it seems to be an infection...but buildup of " trash" in the blood from the prednisone and cytoxine. Thank all of you for listening to my rants! I truly appreciate your points of view. Wishing all of you the very best...feel like I've found a new family...
Danell

[RCOSSIO]

Well this is the place to rant..thank goodness! Imagine if you did not...you would be just another Coke bottle shaken and ready to explode. Keep us informed...Wish you well!

[Sangye]

LOL What a perfect image, Richard. I was a shaken coke bottle before I found this group!

Danell, I keep forgetting where you're located. Could you post it in your profile? (Just the state is enough) Plasmapheresis is used to treat Wegs also. I have no idea if it's done differently. I don't really know anything about it other than there is currently a study underway.

[Mitch]

Thank you, thank you, Richard! I know I'm not the only person who feels ready to explode, and as I see all of these wonderful people on this website who are so positive, I feel guilty with my feelings. It's just been a bad week. Very bad week. Wondering if my husband will live at this point. He is sooo weak, can't walk without braces and cane...will not eat...seems so depressed...so difficult to stand by and watch this once vibrant man going down the tubes. I apologize for my outbursts. I'm impatient with a couple of docs trying to get this plasmapheresis started. Thanks for listening. Times will be better.

[Sangye]

Please do not apologize. If you saw how often I cried over my condition or frustration with docs, etc... you wouldn't feel so bad.

When I was first dx'ed it was a year before I could stand long enough to brush my teeth. I'm still in terrible condition more than 4.5 yrs later, but nothing like those days. He will survive and get stronger.

[Mitch]

Thank you, my friend. It seems from some patients that initial symtoms seem vague and progress from there...maybe slowly. In our case it came down very suddenly....a bomb! It was diagnosed as pneumonia...then lung cancer...then Wegener's within a period of 3 wks.. Thank you, again, for giving me some perspective....that's what I needed...specifics regarding symtoms and time periods. I wish you well and thank you once again. You always uplift me. Danell

[pberggren1]

Thank you, thank you, Richard! I know I'm not the only person who feels ready to explode, and as I see all of these wonderful people on this website who are so positive, I feel guilty with my feelings. It's just been a bad week. Very bad week. Wondering if my husband will live at this point. He is sooo weak, can't walk without braces and cane...will not eat...seems so depressed...so difficult to stand by and watch this once vibrant man going down the tubes. I apologize for my outbursts. I'm impatient with a couple of docs trying to get this plasmapheresis started. Thanks for listening. Times will be better.

I can understand how hard it must be. I had a very dear friend of mine pass away on my birhtday last year after a few years of horrible health problems and cancer. I found it hard to see her continually going down hill. Mitch needs you more than ever right now and it is totally OK to feel the way you do. You can rant and vent on here all you like and we will understand.

[Mitch]

Oooooh, thank you. I'm sitting here at the computer...so thankful for you and others...feels like a life-line to this awful disease. Soooo very sorry about your friend. I'm sure it was devastating for you, so you have an idea of what I'm going through...although it has me on rock bottom at the moment. I'll be better, I know...just haven't slept in nights and am on edge right now. I'm always strong in Mitch's presence. I understand that he must see me in this light. I need to give him my strength, but right now my strength seems to be ebbing. I sound like a weepy, cry baby. This has only happened in the last week...this sadness... Thank you.

[Mitch]

Sangye, I'm in NC. I cannot tell you how much you and this site has meant to me. I've learned sooooo much. I'm going to see if I can paste a link on plasmapherisis .....hang on.Facts About Plasmapheresis | MDA Publications (http://www.mdausa.org/publications/fa-plasmaph.html) Don't know if you can actually click on this, but you can put it in your browser. Nite! D.

[Daggar]

Hello Danell,

I'm confused ... as usual ... is Mitch only on 20 mg of prednisone without an immune suppressant (cytoxan, rituximab, methotrexate, imuran)? I noticed in the profile that he "stopped" cytoxan -- was there a replacement drug?

Holly had plasma exchange as part of the initial treatment in ER to save her kidneys. They wanted to hit the disease quickly and with everything possible to lessen the potential kidney damage.

I'm not sure how the plasmapheresis would work without controlling what appears to be active WG? The plasma exchange is used for "present danger" to vessels but it usually works along side an immune suppressant.

[Mitch]

The nephologist has explained that Mith will be put on on methotrexate or imuran, but at this point he is not on anything but 20 mg. of predisone. Now I'm really beginning to be concerned...wondering if the doctors are handling this thing properly. It's my understanding that this blood cleansing technique is for the purpose of removing the toxins...residue...left there from the use of these immune suppressing drugs. I'm not understanding why the need for the methotrexate in order for the procedure to work properly. Guess I need to read more extensively on the subject. Have I made any sense here, Daggar? :unsure:

[Daggar]

It is very possible that it is used in that way - removing toxins from the blood... if that is what they feel is causing Mitch's symptoms.

In Holly's case the plasma exchange was "part" of the treatment for severe cases of Wegener's with organ involvement -- a "quick fix" if you will to eliminate the antibodies in the blood that were causing the damage to the blood vessels. The immune suppressants were implemented to keep her immune system in-check and stop the production of the harmful antibodies.

I'm not sure if you can have one without the other in a Wegener's patient? Has anyone been treated with plasma exchange alone??

Is it possible they are preparing him for the immune-suppressant but his blood counts were too low?

[RCOSSIO]

Not sure why he is not on any immunosuppressant. From what you are describing based on the above...he has active wegs. The initial regime is cytoxan and once the patient is stabilized, Imuran, Methotraxate or Cellcept.

Danell...is Mitch being treated with a Wegs Specialist...no doc would ever get a patient out of immuno drugs unless that patients showed absolutely positively no signs of active wegs.

I had no signs of active wegs for 2 years but was still on Cellcept and was just bumped up because of minor joint pains...I went right after it, did not wait and schedule all bloodwork and doc appt immediately.

If it was me...I WOULD GET TO A DOC WHO UNDERSTANDS WEGS. NOW!

[drz]

I had lots of plasmaparesis treatments intially. The way it was explained to me and my family the treatment would remove all my plasma with the bad antibodies. They then replaced the plasma with donated clean plasma that didn't have the bad antibodies. Then they tried to kill off the antibodies ones that were hiding and got away from the plasmaparesis by giving me me IV Rituxan, then IV Cytoxan since Rituxan wasn't working, either fast enough or at all depending upon which doctor you talked to, then with oral Cytoxan to keep killing off the undesired antibodies since oral was considered more effective and less risk of adverse reactions. I was also on 1000 mg of solumedrol during this time to try stop the bleeding in my lungs and kidneys. I also needed lots of blood transfusions to try keep my hemoglobin up. I believe the plasmaparesis along with rest of treatment saved my life and my kidneys.

[Daggar]

Exactly drz... same as Holly

Have you ever heard of plasmaparesis on its own? I can't see that unless there was some form of blood count recovery thing happening at the time and they failed to let Danell know a date they planned on starting an immune suppressant again? If there are PR3, or other, antibodies present and they're doing the plasma exchange what's to stop the immune system from regenerating them? It sounds odd.

[drz]

Exactly drz... same as Holly

Have you ever heard of plasmaparesis on its own? I can't see that unless there was some form of blood count recovery thing happening at the time and they failed to let Danell know a date they planned on starting an immune suppressant again? If there are PR3, or other, antibodies present and they're doing the plasma exchange what's to stop the immune system from regenerating them? It sounds odd.

I am just guessing but I think there might be some tests to see how effective the plasmaparesis actually was and period of waiting to see how quickly the bad guys grow back. That might determine what type of immunosuppressant is warranted to try control the bad guys. It is just a guess, but a question the treatment team should be able to explain to the patient and the family. Maybe there has been an adverse reaction to the heavy hitters too or some risk so they don't think it is safe using them either right now. Those are questions that should get answered for your peace of mind. If they aren't recognized experts this is where you ask them to call their colleagues and discuss the treatment options and then explain the choices. I like those choices simple "we try this or you die" or "your case is so bad that we will try everything and hope something works."

[Mitch]

Richard, I am no doctor, but I do believe that Mitch does have active Wegs...the neuropathy has spread in TWO days to other fingers. I would think this would be a sign...along with the low-grade fevers. Unfortunately, we in an area where no wegener's specialists exist...so until I found this site, we didn't have a clue about what to do except listen to our internist, nephrologist, pulmonologist and neurologist. We've sent all of Mitch's records to Duke...such a slow freakin' process. There is a doctor there who has done much research and publication on the subject. I feel like my hands are tied. We were told by the nephrologist only a couple of weeks ago, that this disease was clinically in remission; however, it seems to have come back with a vengance. Oh, me, I can't speed the process on my own and can't just find another specialist with whom to deal. NOW! would be my greatest wish.

[LilyPony]

I live in Cary (near Raleigh). I have spent the last 1 1/2 years trying to get somewhere with Duke. They do wonderful things, but they are severely overbooked and have no business accepting new patients. It took me 8 months to get my initial appointment with firm refusals to squeeze me in. I got in and my symptoms didn't fit neatly into the wegs box, so I was sent on my way to see what happened. Phone calls not returned. My 30-day follow up was many months later. I was put on pred with instructions to call if anything worsened and to return in 2 weeks. That was 6 weeks ago and they are "trying to find an appointment" for me. My phone calls about worsening symptoms were later responded with instructions to find an ENT or a GP to help. Granted I"m not in a life threatening situation, but there is active something going on and in the last few weeks have developed reynaud's and am having issues with that several times a day.

My GP, after a brief conversation with the staff at JH vasculitis clinic, determined that the first step for me was to get established with a local rheum who will consult directly with JH and/or send me there in person depending on what my needs are determined to be. My non-emergency (but somewhat urgent) appointment is scheduled for thursday which is 6 days after GP called. I know you're not in the immediate area, but at least it's somebody in state who has the time, interest, and ability to treat and consult with experts.

WALT CHMELEWSKI, MD
Triangle Arthritis and Rheumatology
2418 Blue Ridge Rd, Suite 105
Raleigh, NC 27607
(919) 881-8272

[Mitch]

I'm writing this in hopes that DRZ, Richard, Dagger and you, Lily, will all see this. Because of what you've all posted, I WILL on Monday call our internist and see that he makes an appt. with Dr. Chmelewski. For the first time, I feel some hope. You have all enlightened me and Mitch on so many levels. We can't thank you enough. Will keep you posted. Danell

[Daggar]

Good luck Danell ... Mitch!! I'm hoping that the feeling something is being done relieves some of your stress about treatment... that's the last thing you need at this time.

[Mitch]

Thank you, Daggar! Thank you soooo much!

[RCOSSIO]

Danell and Mitch wish you well...:smile1:

[Psyborg]

Kind of a related issue. My night sweats have started up again. Just in the past month...maybe from changes in meds? Otherwise I feel fantastic, but I never had night sweats before I got sick so I'm a little concerned, but don't really want to bug my specialist about it either if not needed.

[pberggren1]

I would bug him about Bob.

[elephant]

I get night sweats but not so severe that I am changing my clothes every 5 minutes. I looked up Cellcept side effects and one of them was sweating, so its a hard call. It could be a little wegeners flare or just a drug side effect or infection. Just keep an eye on the night sweats.

[drz]

Kind of a related issue. My night sweats have started up again. Just in the past month...maybe from changes in meds? Otherwise I feel fantastic, but I never had night sweats before I got sick so I'm a little concerned, but don't really want to bug my specialist about it either if not needed.

My philosophy is to report everything that is new or a change since i don't know what is significant or important to my care and treatment. I regard my doctor as the expert and expect him to sort out what is important and not and to tell me what changes if any are needed in my treatment. I usually do this as part of my review of my weekly or bi-weekly lab work results when treatment changes are made. If it is something I think might be more serious I call in between.

[Sangye]

I'm gonna cast a vote in the "Tell your doctor" category. :wink1:

[Psyborg]

Dutifully reported. She asked me to check for a fever, but was low if anything (97.0).

[Psyborg]

Well...the night sweats are ongoing. And I've determined that it only happens from the hips down. I wake up and my legs and hips are drenched in sweat, but my upper body is normal. I don't even know what to make of that, the only reference I could find on the net was menopause...and If I'm suffering from that I want some serious cash out of the deal :)

[delorisdoe]

Mine are opposite...waist up.

[delorisdoe]

Kind of a related issue. My night sweats have started up again. Just in the past month...maybe from changes in meds? Otherwise I feel fantastic, but I never had night sweats before I got sick so I'm a little concerned, but don't really want to bug my specialist about it either if not needed.


ha ha ha...this way of dealing with wg gets me in trouble once and a while.

[Sangye]

Bob, that is very odd. I have no idea what would cause that!

[elephant]

Bob, you need to see an endocronolgoist and neurologist. That is really weird. Did you ever have a MRI of your brain?

[pberggren1]

Bob, you need to see an endocronolgoist and neurologist. That is really weird. Did you ever have a MRI of your brain?

Bob has a brain?:w00t:

[elsawind]

I feel so much for you!!!!! I'm in the same boat, I have been for a long time. My husband had low grade fever for a while and the doctors response was “unknown source of fever” , it lasted for a couple of months and then went away in the same way that it showed up. But almost 102 you should take him to the hospital and make sure to tell them that your husband has WG. Maybe some oportunistic infection.
In regard to the weakness and infinite tiredness, my husband started experiencing at a higher degree about 6 month ago, approximately 6 years since diagnosed.
He was diagnosed first with “mixed connective tissue disorder” and soon changed to vasculitis, first sign of WG appeared on 2007 but 2010 was extremely aggressive and now it is depressing.
Good luck to you and your husband. We need to be strong, for me it is very hard to keep a very positive attitude, hide my tears. But every day I drive him to the beach and we seat on a bench to enjoy the sun and the view and reminisced on past events on happier times.
He was an avid windsurfer as all in our family, we used to row a lot, very active, and it breaks my heart to see him like this.
I guess it is life, we have to create our own sunshine on a stormy times.

[Psyborg]

Bob has a brain?:w00t:

Hey now!!!

[pberggren1]

I was just joking of course! You know how these pred heads work.:rolleyes1:

[Psyborg]

Hehe i know :) As my Pred goes down I'm amazed I did as well as I did last summer lol.

[pberggren1]

I will have to be on 60mg of pred at least another 4 weeks if I can get the rtx.