Recurrent fevers and amyloidosis

I was diagnosed with amyloidosis and multiple myeloma in February of 2008. I receive care from Mayo Clinic in Jacksonville Forida. I have been on a three drug treatment that has been very efffective in supressing the disease process.

However, since December of 2008 I have had four episodes of low to moderate fevers (99.4 to 101.8 range) that have lasted for 5 to 10 days, although my present episode is now on its 29th day. All tests have not been able to identify any cause for these fevers. I recently ran a search on google under "recurrent fevers". In a brief review of links, I found 8 syndromes that can cause recurrent non infectious fevers. To my amazment, 5 of these syndrones had some association with amyloidosis! I am trying to find out if anyone else has had the experience of recurrent fevers; and has any recurrent fever syndrome been identified as the cause.

I would really appreciate hearing from anyone that may have any info that may be helpful about this.

Thanks,

Tom T

By Luu
Posted November 1, 2009 at 9:04 am
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Hi Tom, recurring fever is common from what I've learned. My hubby has had it off and on ever since 2008. It's just part of "amy and MM" I think. Could be the meds, could be the body's reaction from the disease. Just comes and goes. It's a mystery to us also. Living with both of these beasts is a struggle as we've found out, but we're still fighting it with every ounce of strength. Noted you were treated at Mayo, they are pretty good on amy I have heard. Which meds are you taking, we're on Revlimid and Dex, seems pretty effective in bringing the light chain lambda numbers in range. What were your first symptoms? My hubby's kidneys almost shut down completely and that's when we found out amy was doing it. Then, few months later, up jumps the DX of MM. What a year! Did you have carpel tunnel with yours? Take care and better health to you in the future...Luu

By GaPeach
Posted November 1, 2009 at 10:34 am
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Hi Tom,
My name is Paula and I am the facilitator of the support group meetings held at Mayo in Jacksonville. We just had a meeting this past weekend and Dr. Rivera was our guest speaker. If you will send me your email address I will add you to my contact list so you will know about the meetings in the future.

In regards to your questions, it seems that the most common type of periodic fever associated with secondary Amyloidosis (AA) is Familial Mediterranian Fever (FMF). We do have a patient on our Yahoo group that has AA associated with HIDS. When a person has AA amyloidosis, the method of treatment is to treat the underlying disease....colchicine is the most common for FMF. I have been involved with the Amyloidosis Support Groups for the past 3 1/2 years and cannot say that I have ever heard of anyone with a periodic fever syndrome that also has MM. MM tends to go hand in hand with AL Amyloidosis. Mayo is considered to be one of our Centers of Excellence and you should be able to trust their diagnosis completely. Who is your doctor at Mayo? Dr. Roy has attended several of our meetings in the past and Dr. Rivera has set in on a couple now. I would suggest that you join our yahoo group. We have over 700 patients and caregivers on that list now and Ronnie, who is our HIDS patient will be most happy to talk to you about his experiences. To join simply go to www.amyloidosisonline.com. This is a moderated group and we only allow those with a connection to amyloidosis join so you won't be harrassed by anyone trying to sell you something and your email address won't be sold or given to any. Take care and have faith in your docs at Mayo...they are some of the best out there!

Paula Schmitt
Localized Amyloidosis
Atlanta/Jacksonville Facilitator
ASG Board of Directors
www.amyloidosissupport.com

By GaPeach
Posted November 1, 2009 at 10:57 am
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Hello again Tom,
Had I read your profile before I wrote my previous email I would have realized who you are. I also know that you are already a member of the yahoo group. Here is the link just in case you need it http://health.groups.yahoo.com/group/AmyloidosisSupportGroups/. I urge you to post your question to that list and I can assure you that you will receive some replies. I have spoken via email with your daughter, although not recently. I have hopes that one day she will be able to attend one of our Atlanta meetings. In fact, January 23rd, Dr. Seldin from Boston University will be our guest. He would certainly be able to answer any questions that you have about your fevers. I have her email address, so I will be sure to include her in my postings about that meeting. Take care.
Paula

By TomT
Posted November 5, 2009 at 12:00 pm
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Hi Luu,

Thanks for your response. It is interesting that your husband also is experiencing recurrent fevers. I think there is a connection to some recurrent fever syndrome but the doctors don't think so.

The first manifestation of my amyloidosis was the gradual deterioration of my fingernails that started in 2005. Progressively, my fingernails, then my toenails stopped growing and then my hair became pathologically thin all over my head, and eventually most of my upper body hair disappeared. I also developed chest pain on exertion in 2005 which led to to three stents and still chest pain. Once on treatment for amy the chest pain ended, and my hair loss slowed. Amy caused that which appeared to be typical angina and the doctors kept looking for a blocked blood vessel

I was not diagnosed until February of 2008. Four dermatologists had no idea what caused my fingernails to stop growing. I have been on dex, revlamid, and cytoxan since April of 2008 with great reduction in my light chain cells (from 196 to 19).

I see Dr. Roy at Mayo in Jacksonville. He is very good, although he attributes my fevers to opportunistic infections due to reduced immune system. I am still curious about a secondary recurrent fever syndrome and and interested to know of other amy patients who have recurrent fevers.

Thanks for your response, and I hope your husband does well with these diseases.

Tom T.

By Luu
Posted November 5, 2009 at 10:23 pm
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Your events sounded very familiar. Hubby started on Revlimid 25mg/Dex 40mg in Aug 08, but without coumadin, only plavix, which he had been on for heart problems since last heart attack. In Nov 08, he developed blood clots and had bright scarlet measle looking spots all over him, especially on his legs. Reaction to Revlimid was the cause. Then switched to Velcade/Dex, then to Thalidomide/Dex. Thal caused bad neuropathy in his feet, swelled so he couldn't even walk. He was on 50 mg one day, 100mg the day after, etc. Then switched to 50 mg per day. Now, he's back on Rev 10mg/20mg dex and he is having the sweating and chilling syndrome again. Temp has been running about 96.3, except when he developed the flu this month, that's been a bad trip. In 2007, he kept complaining about chest pains, shortness of breath, but after heart doc ran his tests, he confirmed that the artery with the stent in it had completely shut down, except 10%. Heart doctor still insisted the complaints he had was not caused by his heart. Then in Apr 08, he went in for carpel tunnel surgery, kidneys were at 26 GFR, then about a month later, went to 14 GFR, which is pretty much near a shutdown and dialysis. We then switched to Nephrologist who DX the amy. Few months later, Onc found the myeloma, so we're just hoping they don't find anything else. Onc was reluctant to put him back on Rev, but since he added the coumadin and low dose Rev, so far it's been safe and very effective as his kappa/lambda ratio is .77, which is pretty good. He started out with 695 Aug 08. We are very concerned about the amy in his kidneys and heart, the heart doc says if it's in the kidneys, it's in the heart, but he's never done a biopsy and isn't in the future plans. It's been a battle to keep his HGB up, it was 10.0 today, so he got his Aranesp shot to bring that up. Between MM and Amy, every day is challenging. He has three fractures in his spine and that's been painful, but oxycontin, xanax, and darvocett helps that a lot. Walking has become a chore, but he can get to the bathroom and outside in the yard a little. Kyphoplasty was done last year, but they said can't be done to help him now, so he lives with it. We have thought about going to Mayo or Ark, but he really doesn't feel like traveling. Most of his doctors are in OKC, it's about 100 mi, so we make it there. They've really been pretty good and very efficient, there's one of the doctors that has a staff I can't say much about, but we try to tolerate it best we can. We learn to adjust, don't we? Hope things get better for you, but that fever and chills is nothing new with this beast from what I hear. Best to you, Luu

By TomT
Posted November 11, 2009 at 11:23 am
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Hi Luu,

Sorry to hear about how sick your husband is and how much trouble he has had with treatment. I am doing much better. I am a Catholic priest and am in an active ministry at a Catholic Church in Pinellas Park, FL. I do have MM as well as amy. I go to Mayo in Jacksonville for treatment and they have been excellent. I am tolerating revlamid well so far and am on plavix for 3 stents and that is helpful in preventing blood clots.

Sorry to be so late to respond, but I sometimes don't check with my e-mail for several days.

Will offer a prayer for your husband today.

TomT.

By TomT
Posted November 11, 2009 at 11:28 am
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Hi GaPeach,

Thanks for your response and for making the connection. Actually I was looking for the amy group but have not used in in over a year; and was directed to Inspire. I see Dr. Roy at Mayo in Jacksonville. I saw him last Monday and he does not think that there is an underlying fever syndrome happening. He believes that my fevers are a result of a weakened immune system and that I am just catching illnesses from others..

Hope all is well,

TomT

By Luu
Posted November 11, 2009 at 11:42 am
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Thank you so much for your prayers!!! That means everything to us. Power of prayer is mighty and everyday I'm blessed by God...so thankful to him for all he's done for us. Jerry just sweats down sometimes, and is so odd, because it's usually from the neck up in the head area, he keeps a towel with him. I'm sorry you have both amy and MM, that's a whammy! Mayo is good clinic, but we have not tried them yet. We use Oklahoma City Hospital, we are very happy with our doctors there. OKC has new Cancer Center also, we'll see how that goes. We've been told the treatment is the same for Amy and MM, but then heard from others, that it's not. What do you think? Weakened immune system causes lots of things, but Jerry said he had read on the Revlimid paper that it could cause fever, I need to get that out again and read it. You take care and best of health to you....Prayers to you also!!! Luu

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