Swollen lymph nodes--need info from anyone!!

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kimliz59
Regular Member


Date Joined Feb 2012
Total Posts : 298
   Posted 4/2/2012 12:00 AM (GMT -6)   
Has anyone here with RA ever had swollen lymph nodes that were related to the RA?  How long did it last, and what (if any) tests were run to determine the cause of the swelling?
 
When this all started, my first thought was lymphoma, as I've been on Enbrel for many years, but I don't have any of the other symptoms associated with that.
 
I am 52 years old and have had RA since I was 26.  This is my first time posting on the RA forum.  My rheumy has been running blood tests monthly (CMP and CBC), and all the tests have come back normal.  I see her again April 12th, and she said if my nodes are still swollen, she will send me for a CT scan of my neck and left armpit.  (These are the two most swollen places.)
 
I already had an ultrasound of my left armpit months ago, plus a mammogram (just in case).  The mammo came back ok, and the ultrasound showed lymph gland swelling consistent with infection, but not cancer, they said.
 
Please, please, if anyone has had anything remotely similar, would you post your experience?  The swelling has been going on for the last five months, and I've had so much anxiety about it that I've begun having panic attacks.
 
about two months into the (sometimes painful) swelling, I began having symptoms that I believe are fibromyalgia, and at my last rheumy visit, she wanted to start me on gabapentin for that, but I declined, because I didn't want to muddy the waters in the quest of a diagnosis for whatever was going on with my lymphatic system.
 
I don't know if the lymph swelling could be related to the fibromyalgia, but I've been posting on the fibro thread, and most people don't seem to have lymph swelling as a symptom, so I'm still at a loss as to what could be causing this.
 
Sorry this is so long...any replies would be so appreciated!! 
"Life is not about waiting for the storm to pass; it's about learning to dance in the rain."

Possible Fibromyalgia, Rheumatoid Arthritis, Type 1 Diabetes, Grave's Disease, GAD, migraines, panic attacks, chronic hangnails (just seeing if you're paying attention!) : )

Post Edited (kimliz59) : 4/2/2012 10:20:46 AM (GMT-6)


Lemar
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Date Joined Aug 2012
Total Posts : 1
   Posted 8/18/2012 9:27 AM (GMT -6)   
Just wondering if you ever figured out why they were swollen. I have RA but only take low dose prednisone and eat a vegan high raw diet but I noticed that when I eat bad like I had a littlebit of ice cream yesterday and woke up with swollen lymph nodes in neck. I don't know if yours are related to the food you eat. You might try going to a naturopath. That's what I did when I tried telling my rheumy I was sure the food I ate would give me glares and he said there are no studies to confirm that. I also get massages and that helps alot. I know it's hard to but maybe just take a day and get a massage and rest.

kimliz59
Regular Member


Date Joined Feb 2012
Total Posts : 298
   Posted 8/18/2012 10:32 AM (GMT -6)   
Hi, Lemar!
 
Thanks for your reply!  I'm still dealing with the swollen nodes, but seem to be very slowly (it's been ten months) getting better.  My first armpit ultrasound showed four swollen nodes there, and the most recent ultrasound showed one.  The associated symptoms (fibromyalgia-like) symptoms are about ninety percent gone, too.
 
  None of the tests my rheumy ran ever showed anything, and since my symptoms are slowly resolving, she hasn't done anything but monitor me, and I'm down to seeing her every three months.  (Under normal circumstances, I see her once every six months.)
 
I have been vegetarian for almost twenty-five years, and try to eat a healthy diet, although I have a terrible sweet tooth and indulge more than I should in that area!
 
So, the short answer is no, I never found out what it is/was...my doctor said maybe some type of virus, but she's just guessing.  Thanks again for your reply and the suggestions!
 
How long have you had RA?  Best of luck to you!
 
Kim
"Life is not about waiting for the storm to pass; it's about learning to dance in the rain."

Fibromyalgia, Rheumatoid Arthritis, Type 1 Diabetes, Grave's Disease, GAD, migraines, panic attacks, chronic hangnails (just seeing if you're paying attention!) : )

kimliz59
Regular Member


Date Joined Feb 2012
Total Posts : 298
   Posted 8/18/2012 10:38 PM (GMT -6)   
Kate, thanks for letting me know I'm not alone in this swollen lymph node thing!  I've never had anything like this, and it came on so suddenly--I was convinced that it was something horrible from being on Enbrel.
 
To answer your question about DMARDs, I take methotrexate in conjunction with the Enbrel.  Years ago I was on sulfasalazine and hydroxychloroquine.  I guess I've been on Enbrel for about ten years.  What do you take?  I also take a very low dose of prednisone.
 
I too have sero-negative RA...I've read that about twenty percent of RA sufferers are sero-negative.  Does RA run in your family?  My grandfather, his sister, and my mother's sister all had RA...I can't even imagine the pain they went through.  My great-aunt was in a wheelchair by age forty.  : (
 
How long have you had RA, Kate?  When you get these infections, do you find out what they are, or do they just resolve on their own?  Just interested...if I'm being nosy, ignore me!  : )
 
Kim
"Life is not about waiting for the storm to pass; it's about learning to dance in the rain."

Fibromyalgia, Rheumatoid Arthritis, Type 1 Diabetes, Grave's Disease, GAD, migraines, panic attacks, chronic hangnails (just seeing if you're paying attention!) : )

KathleenC
New Member


Date Joined Aug 2012
Total Posts : 15
   Posted 8/23/2012 7:45 AM (GMT -6)   
Kim,
I had a normal mammogram right before I started MTX and by the time my next annual scan my lymph nodes under my arms were alarmingingly swollen. I had an ultrasound immediately and the doctor wasn't overly concerned once i explained that i had RA and was on MXT. I had recommended follow-up ultrasounds and mammograms every 6 months and kept my rheumy informed. I was able to sleep better after I spoke to the radiologist and asked him, "if I were your Wife, Daughter, Mother, etc, would you recommend I not worry and just get scanned every 6 months?" He smiled and responded, "Absolutely!" That made me feel a lot better. If it were something to be very concerned about they wouldn't send you home and tell you to come back in 6 months.

FYI, by the time i stopped MTX and went on Humira the nodes shrunk back down.

I wouldn't stress about it, just keep an eye the situation, get the recommended follow up's and keep the communication lines open between all your doctors/specialists. Make sure every other doctor sends their reports to your rheumy.

Kathleen

kimliz59
Regular Member


Date Joined Feb 2012
Total Posts : 298
   Posted 8/23/2012 9:15 AM (GMT -6)   
Thanks for your reply, Kathleen!  At my last visit almost a month ago, my rheumy was concerned that I still felt like I had swelling under my left arm, as in another month or so, it will have been a year.  She sent me for another ultrasound and told me that if it showed the same swelling, she wanted me to have a biopsy. 
 
The ultrasound showed one swollen node, where there had been four when it all started, so she held off on ordering a biopsy.  I'm a bit nervous, though, as some the other symptoms (burning pain across my chest/breasts, around my waist and on the left side of my rib cage) have resurfaced in the last couple of weeks.  These symptoms are not nearly as bad as when I first experienced this, but  they're worse than they've been for several months, which has me concerned.
 
I don't know how uncomfortable/painful a lymph node biopsy is, but I'm almost hoping my rheumy orders one at my next visit, if I'm still having symptoms...at least it would put my mind at ease about some kind of malignancy.  (Provided the results were negative, of course!)
 
I've been on methotrexate for more years than I can remember...fifteen, maybe?  Maybe longer, so if it was a reaction to that, I would think it would have occurred before now, but I guess it doesn't always work like that.  rolleyes  
 
When I first had symptoms, my calves that the funniest swollen sensation--not really painful, but tender, and when I started looking on the internet, I found that this can be a reaction to methotrexate, but my rheumy didn't think that was it, and chastised me for going off of the drug.  (Believe me, the withdrawal and/or RA symptoms I experienced by doing this were worse than any lecture she could give me!)
 
I know that swollen lymph nodes can be part and parcel of RA, but when it goes on for this long, I can't help but be concerned.
 
Regardless, thanks again for your reply...how long have you had RA?  Best of luck to you!
 
Kim 
 
 
 

"Life is not about waiting for the storm to pass; it's about learning to dance in the rain."

Fibromyalgia, Rheumatoid Arthritis, Type 1 Diabetes, Grave's Disease, GAD, migraines, panic attacks, chronic hangnails (just seeing if you're paying attention!) : )

Post Edited (kimliz59) : 8/24/2012 8:24:05 AM (GMT-6)


KathleenC
New Member


Date Joined Aug 2012
Total Posts : 15
   Posted 8/24/2012 7:54 AM (GMT -6)   
I've had RA for 19 years.  It's always something isn't it?  RA is never dull and just when you think you've dealt with it all, it surprises you with a new little trick.
 
It sounds like you are doing the right things, you know your body better than anyone else and if you think something isn't quite right, then investigate and get the answers. 
 
You do sound super stressed and anxious about it, try to relax and slow down (easier said than done for sure).  The best advice I've had is to deal with what you know right now.  There is a big world of "what ifs" out there that can overwhelm you. 
 
Bless your heart for staying on MTX so long!  After a couple of years I couldn't take it anymore:  the sickness and side-effects.  I decided on my own to quit taking it.  I too got the lecture from my doctor and you are right, the lecture wasn't even close to the pain and agony I brought on myself.  Lesson learned the hard way.  So many of life's lessons must be learned and cannot be taught.
 
Keep posting!
-Kathleen
 
 
 
 

kimliz59
Regular Member


Date Joined Feb 2012
Total Posts : 298
   Posted 8/24/2012 9:46 AM (GMT -6)   
Hi Kathleen~
 
Yes, I am "super stressed and anxious" about this, and your advice to slow down and deal with what I know is sound.  I am a terrible "what-iffer", and that can be overwhelming, to be sure!  It's just that when this all started, the symptoms were so profound and so different from anything I've experienced in my almost thirty years of dealing with this disease that I couldn't help but feel that something was seriously amiss, and to still be having symptoms after almost a year with no diagnosis in sight is difficult to deal with.
 
That being said, life goes on, doesn't it?  It sounds like you've experienced some of methotrexate's not-so-fun side effects, but I've been lucky in that I've never had to deal with any of them, unless my present issues are related. 
 
How did you deal with the "withdrawal"?  When I discontinued it on my own (cold turkey, which I'm not sure is recommended), more than a resurgence of RA symptoms, I just had head-to-toe, every-fiber-of-my-being pain that felt like the most severe muscle pain imaginable.  Did you experience this?  Does it go away after a period of time?  What did you take instead?  Sorry for the barrage of questions, but it was so incredibly unpleasant that I'm wondering how you got through it!
 
You're so right about life's lessons being learned and not taught--ain't that the truth?!  rolleyes   Thanks so much for your insight, and you keep posting, too!  tongue
 
Kim
 
 

"Life is not about waiting for the storm to pass; it's about learning to dance in the rain."

Fibromyalgia, Rheumatoid Arthritis, Type 1 Diabetes, Grave's Disease, GAD, migraines, panic attacks, chronic hangnails (just seeing if you're paying attention!) : )

Abqannie
New Member


Date Joined Jan 2013
Total Posts : 3
   Posted 1/31/2013 11:09 PM (GMT -6)   
Hi Kim,
Your situation sounds very similar to mine. I'm 48 and have had RA since 18. I've also been on Enbrel and methotrexate for a long time. about 10 years ago, a swollen lymph node was found under my arm. I had lots of pain with it for quite a while. I had a CT scan, needle biopsy, but nothing was found. I've gone for yearly check ups since but they didn't find it again. Now I recently had a Breast MRI and a few swollen lymph nodes were found again under the same arm. This time I guess they appear "Asymmetrical". So, my Breast Dr., has done a core biopsy and I'm waiting on the results. I'm thinking/hoping its all from the RA. If you haven't had a biopsy yet, its not very difficult. I go to a Breast Specialist who is a surgeon so I trust her. Let me know how you are doing! I haven't spoken to any one else with these same symptoms.

kimliz59
Regular Member


Date Joined Feb 2012
Total Posts : 298
   Posted 2/1/2013 3:01 AM (GMT -6)   
Hi Abqannie!
 
First of all, I hope you get good news regarding your biopsy--I'm saying a prayer for you!!  Please post on this thread and tell me what you find out.
 
Thanks for sharing your story...you seem to be about the only person who's had anything similar to me, also.  It's now been a year and a half since I first experienced this, and I still have a swollen feeling under both arms, (left one worse) as well swollen sensations a few other places.  I don't often have the sharp pains that I had at the beginning, but the burning sensations occur occasionally, usually in my armpits and below there about six inches, and sometimes at the sides of my waist and on my upper back.
 
My rheumie took forever to decide what to do with me, and she finally ended up doing nothing...no biopsy or anything.  She told me that enough time had elapsed, and I wasn't getting worse, so she offered me gabapentin, and that was it.  She did send me for a follow-up ultrasound of my left armpit, which had shown four swollen nodes when this all started.  (The radiologist said then that the nodes looked "reactive" as opposed to cancerous.)  This later ultrasound showed only one swollen node, but I still feel swollen, so I don't know what to chalk it up to.
 
I'm about ready to kick my rheumie to the curb...she's just not the kind of doctor I want.  Problem is, I live in a rural area, and rheumie's aren't that easy to come by.
 
I've read about something new (to me) that might help RA, but I'm just in the process of trying to find out if it's legit or not.  I won't waste time asking my rheumie, because if she didn't recommend it, she won't consider it.  Very frustrating...
 
Well, I'm so glad to hear from you, and again, I hope you get nothing but good news.  Take care!
 
 
"Life is not about waiting for the storm to pass; it's about learning to dance in the rain."

Fibromyalgia, Rheumatoid Arthritis, Type 1 Diabetes, Grave's Disease, GAD, migraines, panic attacks, chronic hangnails (just seeing if you're paying attention!) : )

Abqannie
New Member


Date Joined Jan 2013
Total Posts : 3
   Posted 2/5/2013 8:11 PM (GMT -6)   
Hi again,
So I received the news that the nodes are benign/no malignancy noted. I really think this is all due to the RA. I have had inflammation at some point in my body, every day, for about 25 years now. Its got to cause havoc on the lymph system. Although, I'm sure its a good idea to keep a close eye on it, considering people with RA have a higher risk of lymphoma and all the meds we take cause the same.
I hope you are feeling better,
Annemarie (Abqannie)

kimliz59
Regular Member


Date Joined Feb 2012
Total Posts : 298
   Posted 2/6/2013 4:27 PM (GMT -6)   
Annemarie,
 
So glad you got good news!
 
You might be right about the lymph problems being related to RA, but it is kind of nerve-racking when (as you said) both RA and some of the meds taken for it can cause lymphoma.  That was my first thought when I had all of this lymph node swelling.
 
How old were you when you got RA?  I was 24, and am 53 now.
 
Have you ever heard of low-dose naltrexone?  I came across it on a health blog that I read, and I did some online "research" into it, and apparently, it's helped a lot of people with autoimmune diseases, especially MS and RA.
 
I haven't decided if I'll try it yet, but after some of what I've read about it, I'm tempted.
 
The drug (naltrexone) has been around for many years, and is now available as a generic in the 50 mg. dosage, where it's used to help people addicted to opiates like heroin.  In using it for this purpose, some folks discovered that it helped their autoimmune conditions, too, but that one needed a much lower dosage to achieve this effect.  (3-4.5 mg.)
 
Anyway, if you're interested, I have some websites and such, or you can google "low-dose naltrexone" or "LDN", and you'll find several sites.
 
I should tell you that I'm not one to try every snake-oil that comes along, and as you probably know, there are a million "cures" for RA out there on the internet.   rolleyes     I'm very discerning, but this actually seems like it may have potential. 
 
If you do happen to look into it, let me know what you think.  I'm just taking my time and reading everything I can get my hands on about it before I make a decision.  I did see that there's a book on Amazon called Up the Creek With a Paddle:  Beat MS and All Autoimmune Disorders With Low-Dose Naltrexone--I thought I might order it.
 
Regardless, best of luck to you in the future--keep in touch!
 
Kim
"Life is not about waiting for the storm to pass; it's about learning to dance in the rain."

Fibromyalgia, Rheumatoid Arthritis, Type 1 Diabetes, Grave's Disease, GAD, migraines, panic attacks, chronic hangnails (just seeing if you're paying attention!) : )

Abqannie
New Member


Date Joined Jan 2013
Total Posts : 3
   Posted 2/6/2013 11:22 PM (GMT -6)   
Interesting. I'll look into it. The LDN that is.

I started having symptoms when I was a teenager, but then it hit me full on when I was 24. I'll be 49 in a couple of months. I've had swelling of some sort everyday since then. I've tried almost everything out there. I've been on the new drug Xeljanz most recently, but stopped taking it because I started gaining a lot of weight in my abdomen and was excessively thirsty. So much so I couldn't sleep at night. Also started having terrible sinus problems (but I've had those with almost every biologic, etc). I was on Enbrel for over 10 years and it worked better than anything, but then the last couple of years it stopped working.

I'm wondering, do you have itchy skin along with the swollen lymph nodes? Maybe you mentioned it. I did - very itchy arms, I get rashes. The Dr said it was due to the meds, which could be true.

I noticed you are from NW Illinois. I was born in Chicago; lived in Glenview, Evanston and Crystal Lake. Now I live in New Mexico - I've been here the last 16 years.

I'm seeing my Dr next week - I'll ask her about the LDN.

Thanks for the correspondence!

kimliz59
Regular Member


Date Joined Feb 2012
Total Posts : 298
   Posted 2/7/2013 12:32 AM (GMT -6)   
Hi Annemarie,
 
Interesting that you were born and lived in the Chicago area!  I've been through New Mexico, and it's beautiful.  If I lived there, I would miss the four seasons, but right now avoiding winter sounds like bliss!  tongue
 
I, too have had bouts of simply maddening itching, maybe once every few years, but not on a permanent basis, thank Heaven.  It's the kind that no matter how much I scratch, it never "reaches" the itch, and in fact, makes it worse.  It can last for months, but I don't generally have any visible evidence of the problem...not the rashes you describe or any redness, or anything.
 
I've only found two things that help my itching when it occurs and that is to never, ever start scratching, as it only inflames and escalates the sensation, and Solarcaine spray (made for sunburns) as it contains a topical anaesthetic.
 
I'm currently on Enbrel, and it has worked for me for many years...maybe twelve or thirteen.  I've never even heard of Xeljanz.
 
So what are you taking now?  I probably mentioned it before, but when I first had this lymph swelling, I immediately stopped taking both the Enbrel and the methotrexate, and the resulting pain was beyond excruciating.  I hope you're not dealing with that now.   shakehead  
 
Do you have a lot of joint deformity?  My hands and feet are (I suppose not surprisingly) the worst.
 
I'm asking a lot of questions here...I hope you don't mind. Do you see a rheumatologist?  I assumed that's what you meant when you said you see your doctor next week. 
 
I ask because I've corresponded with a few people online regarding this LDN therapy, and all of them said not to be surprised if your rheumy has never heard of this or won't prescribe it even if they have.  Most said they had better luck with their general practitioner when it came to getting a prescription, but even then, I guess it's often not easy.  One website I was on (I can share it with you if you're interested) even had a page you could print out to give to your doctor to read...it was designed to be brief but informative, to maximize the chances that your doctor would at least become informed as to the way the drug works and how it's used for autoimmune diseases.
 
The problem with getting a prescription for an autoimmune disease lies in the fact that because this drug was developed many years ago for another purpose (to combat opiate addiction--e.g. heroine, etc.), it's now generic.  Since it was generic before it was discovered to be helpful for autoimmune diseases, no drug company will spend the money to do the research to prove that it's helpful for that use, as they can't charge big bucks if it works, and so wouldn't recoup their research dollars.
 
Because of that, the naltrexone is only available in the 50 mg. dose, and not the lower (3-4.5 mg.) that's useful (supposedly) for autoimmune diseases.  This means that if you can find a doctor to prescribe it for you, the prescription will need to be sent to a "compounding pharmacy" that will make up the low-dose pills for you.  There are lists of these pharmacies on some of the websites, and they will mail you the prescription once it's made up.
 
There's a second way you can go about getting this medication, and that's to buy the 50 mg. pills from a Canadian or Indian pharmacy, then you crush the pills and split them into the smaller dosages yourself.
 
It sounds kind of fly-by-night, I know, but there are so many people who say this has helped them tremendously, without any of the life-threatening side-effects of the biologics.  I have read some comments by people who said they tried this and it didn't help them, so it's not a guaranteed thing, but I'm thinking about trying it.
 
Another noteworthy piece of information is that you can't be on any immunosuppressive drugs when you take this naltrexone.  (I read that you can be on prednisone as long as it's less than 10 mg. per day, and ibuprofen and other NSAIDS are ok, but no methotrexate or biologic agents).  This is because (again, supposedly) that the naltrexone works by making your immune system that of a normal person, and so immunosuppressive drugs would combat this.  
 
Each dose works for one twenty-four hour period, so you take one dose per day, and it's to be taken between ten p.m. and two a.m.  I can't remember the exact reason for this, but it's something to do with the natural rhythm of our immune systems.
 
Well, I'm sorry I went on so long about this, but I thought I would give you the gist of what I've learned about it, in case you wanted to look into it yourself.  Again, I have some websites that seem "legit", and would be glad to share them, and if you come up with any, I'd truly appreciate if you'd share them with me.
 
I started a new thread with "LDN" as the subject, but no one has posted on it yet...I was interested to learn if anyone had tried it or knew anything about it.  From what I read online, it's been used most extensively for MS, followed by RA, but it's supposed to help with other, non-autoimmune problems as well...Parkinson's, some types of cancer--there was quite a list.  Again, this is what I've read, not what I know to be true.
 
Well, I've rambled on far longer than I meant to--I hope I haven't put you to sleep!
 
Thank you, too, for your correspondence!  :-)
 
 

"Life is not about waiting for the storm to pass; it's about learning to dance in the rain."

Fibromyalgia, Rheumatoid Arthritis, Type 1 Diabetes, Grave's Disease, GAD, migraines, panic attacks, chronic hangnails (just seeing if you're paying attention!) : )

cliffzig
New Member


Date Joined Apr 2013
Total Posts : 3
   Posted 4/19/2013 5:15 AM (GMT -6)   
Hey there.  I am glad to see others with this as well.    My lymph nodes have swelled as well but I've also been ridiculously tired, major chills (no fever) light headed and had a bruise that seemed worse than it should be.   So I went to the General Dr who did a urine test, Blood work and a chest xray.  Everything was normal but my iron was way low.   Unfortunately my symptoms persist.  However, I do have RA.  I was diagnosed at age 5 and it was so severe it nearly killed me due to related complications that RA can cause. 
 
My question is, should I trust my General DR and just wait for my RA visit may 22?  I mean I guess if it's cancer it wouldn't matter if I waited.  (I'm electing no chemo.)  Long story but I've lived long enough.  My General DR did recommend an ultra sound on my lymph nodes.  I suppose I should do that.

cliffzig
New Member


Date Joined Apr 2013
Total Posts : 3
   Posted 4/19/2013 5:26 AM (GMT -6)   
By the way, I've never heard that RA is at all related to lymphoma.  It can cause them to swell but related to cancer I've never read or heard.  The meds however, yes but my DR won't use any drug but Aspirin and Methotrexate.

kimliz59
Regular Member


Date Joined Feb 2012
Total Posts : 298
   Posted 4/19/2013 10:27 AM (GMT -6)   
Hi cliffzig,
 
Like you, I've heard RA connected with lymph node swelling, but not lymphoma...as you said, what I've seen linked to lymphoma are RA treatments like Enbrel and methotrexate.
 
I'm so sorry to hear that you've been battling RA since a very young age--my heart goes out to you!  With the symptoms you're experiencing, I would make an earlier appointment with your rheumie, in addition to having the tests your regular doctor suggested.
 
Is there a reason your doctor won't prescribe anything for you besides aspirin and methotrexate?  That seems woefully inadequate and outdated as a therapy. 
 
I'm currently on Enbrel and methotrexate, but am researching naltrexone--an old drug with the potential new use of treating autoimmune disorders.  (It's in clinical trials for Crohn's and MS right now.)
 
I finally saw my rheumie yesterday, and asked her about naltrexone, but she suggested I wait and let others go through the studies and take the higher risk. 
 
I reminded her that biologics like Enbrel, as well as methotrexate, both have serious side effects, and she said "Yes, but we know what to look for--we know what they are."  Easy for her to say...once I have lymphoma, or worse yet, a "fatal blood disorder", what good will that do me?!
 
Regardless, cliffzig, please go and have your symptoms checked out, and, unless there's a compelling reason for keeping you on your current medication, I would look into getting a new rheumie.  Best of luck to you, and keep in touch!! 
 
 
"Life is not about waiting for the storm to pass; it's about learning to dance in the rain."

Fibromyalgia, Rheumatoid Arthritis, Type 1 Diabetes, Grave's Disease, GAD, migraines, panic attacks, chronic hangnails (just seeing if you're paying attention!) : )

cliffzig
New Member


Date Joined Apr 2013
Total Posts : 3
   Posted 4/21/2013 5:42 PM (GMT -6)   
I didn't know that about methotrexate.  Well, I get an ultra sound this week on the nodes and hes ordering an HIV test due to the fact a had a transfusion after surgery last year.
 
Fortuneately I took very little methotrexate.  My DR is very old fashioned.  He doesn't trust new drugs and prefers aspirin because of its very limited side effects.  I trust him.  He was rated top 8 in DR's in CT so he must know what he's doing.  I hope.  Dr Paul McCarthy.

kimliz59
Regular Member


Date Joined Feb 2012
Total Posts : 298
   Posted 4/21/2013 5:50 PM (GMT -6)   
Cliffzig,
 
Please post and let me know how your tests come out.
 
How are your RA symptoms?  If you have good control of your pain, stiffness, and joint damage, then I would carry on, as your doctor's treatment plan seems to be working for you.  If not, I'd look for a new doc, "top 8 in CT" or not.
 
Best of luck to you!
"Life is not about waiting for the storm to pass; it's about learning to dance in the rain."

Fibromyalgia, Rheumatoid Arthritis, Type 1 Diabetes, Grave's Disease, GAD, migraines, panic attacks, chronic hangnails (just seeing if you're paying attention!) : )

psbg
Regular Member


Date Joined May 2012
Total Posts : 201
   Posted 4/24/2013 1:04 PM (GMT -6)   
Hey Kim,
Was just reading about your lymph nodes being swollen. Just to let you know my husband and I both have RA my husband however came down with lymphoma and RA at the same time. It is my understanding that this is rare but that it can and does happen. He has a very rare form of Non-hodgkins lymphoma and after 12 years now has never had to have a treatment for it. He is on Enbrel and does very well. However he did have the lymph node swelling with the RA. Just thankful that he has been doing very well over these years. I on the other hand have issues...lol I am on Cimzia and prednisone as well as plaquenil for the fatiuge which I keep most of the time..... ugh...
Hope you find the answers you need.
Peggy
Rhuematoid Arthritis, degenerative joints, herniated disc's in back and neck. I take Cimzia injections, Plaquenil, 2.5 prednisone, hydrocodone for pain. And like most of you I fight with fatigue regularly... ughhhh

kimliz59
Regular Member


Date Joined Feb 2012
Total Posts : 298
   Posted 4/24/2013 7:04 PM (GMT -6)   
Hi Peggy!
 
Thanks so much for taking the time to respond and  for sharing your husband's experience...my problems are still continuing after over a year and a half, but my rheumie doesn't seem concerned.
 
It is interesting that your husband has never had to have treatment for his lymphoma, but you did say that it's a rare kind.  There are so many awful things to contend with!  
 
Now for the past three months or so, I've had areas just appear on my arms that look like a burn.  They don't itch, and aren't painful, but I have no idea what to chalk them up to.  I've had them on both arms now, probably eighteen or so to date.
 
It figures that I just saw my rheumie last week and didn't mention them. as I hadn't had a new one for a month, and thought that whatever it was had just gone away.  Of course, yesterday I woke up with a new spot by my right wrist.  rolleyes  
 
I'm so sorry that you and your husband both have to deal with RA.  I read an article once on the fact that RA is a bit different depending on the gender of the afflicted person.  Can't remember much more about the article than the subject, though.  RA also varies in severity from mild to severe, so we can never compare ourselves to others with the disease.
 
I thank you again for responding to my posts--best of luck to you, and keep posting! :-)
 
 
 
 
 
 
 
"Life is not about waiting for the storm to pass; it's about learning to dance in the rain."

Fibromyalgia, Rheumatoid Arthritis, Type 1 Diabetes, Grave's Disease, GAD, migraines, panic attacks, chronic hangnails (just seeing if you're paying attention!) : )

psbg
Regular Member


Date Joined May 2012
Total Posts : 201
   Posted 4/25/2013 9:29 AM (GMT -6)   
Kim you may have to do what i do....lol I have to write down questions for my rhuemy on occassion when I have things I need to rermember. I make notes and keep them together so that I ask all of what I need to as when I get in there I completely forget (which is not unusual for me) everything. Hope that you find out what is going one with the spots.
I appreciate everyone on here as they always make us feel better. Nice to have friends that understand.
Peggy
Rhuematoid Arthritis, degenerative joints, herniated disc's in back and neck. I take Cimzia injections, Plaquenil, 2.5 prednisone, hydrocodone for pain. And like most of you I fight with fatigue regularly... ughhhh

kimliz59
Regular Member


Date Joined Feb 2012
Total Posts : 298
   Posted 4/25/2013 11:25 AM (GMT -6)   
Thanks for the tip, Peggy, and I usually do write things down that I want to ask, but this time, I thought whatever it was had run it's course, and I didn't want my rheumie to order a bunch of unnecessary tests, so I didn't say anything.
 
I thought at that time I'd figured out what had caused it--I'd been taking vitamin K, which is a fat-soluble vitamin, and I thought perhaps I'd been taking too much.  (Being fat-soluble makes overdosing more likely, as the vitamin is stored in your fat, as opposed to most vitamins, which are water soluble.  In those, excess is flushed out in the urine.) 
 
Anyhow, I hadn't exceeded the dose of the vitamin K, but it was the only thing I'd done differently, so it was suspect. (Also, when I looked up symptoms of overdose, it said a "rash", which doesn't quite fit what I'm experiencing, but I couldn't find any photos.) I quit taking it, and after a week or so, the spots stopped, so I thought I'd found the culprit.
 
I guess it was coincidence, because I haven't resumed the vitamin K, but I had two more spots show up, and I'm not sure how to proceed...I don't know if I should start with my regular doc, who generally can't wait to get me referred somewhere else, or my rheumie, but I don't know if it's RA-related, and all she's wanted to do the whole time with this lymph-node swelling and pain is give me gabapentin. 
 
I so wish I could find a good doctor...I had one once, but he retired years ago--he'd have had this figured out!  He had a curious mind, and helped me get to the bottom of a life-threatening mystery years ago when other doctors had given up. 
 
Regardless, thank you for your suggestion--I, too suffer from mental lapses on occasion, and if it weren't for lists, I couldn't function!  :-)
 

"Life is not about waiting for the storm to pass; it's about learning to dance in the rain."

Fibromyalgia, Rheumatoid Arthritis, Type 1 Diabetes, Grave's Disease, GAD, migraines, panic attacks, chronic hangnails (just seeing if you're paying attention!) : )

Dakota Krys
New Member


Date Joined May 2013
Total Posts : 1
   Posted 5/10/2013 1:36 AM (GMT -6)   
This is my first time posting. I have had RA for about 13 years. I was diagnosed with RA and fibromyalgia when I was 31. I can't tell you what was worse at first, the fibromyalgia or the RA. Both were quite bad. Now the only time I feel the fibromyalgia is inside elbow on my arms when I get wore out and my RA is mostly manageable.

about 3 weeks or so ago, in the evening, I started getting what I thought was a sore throat and pain when I swallowed. The pain was gone in the morning, but came back mid-evening and has come back virtually every night since it started.

Two weeks ago I had pain in my shoulder as if I slept on it terribly wrong and I couldn't lift my arm. By last weekend, in the evening the pain moved to both arms in the bicep area as if someone was stabbing me with a knife. My neck hurt and I couldn't turn my head and of course the sore throat. Monday morning, my hands hurt quite bad. I couldn't make a fist, had a hard time writing or lifting the smallest of things. I went in for blood tests, but haven't received any results. Each day this week, the morning pain is extreme, but in a different part of my body. My right knee, my left hip, etc... Tonight, like other nights, I'm sitting here with very swollen glands, really bad pain when I swallow, sore neck and sharp pain in the biceps. This migrating and extreme pain is very new to me.

One thing that may or may not be related. Not too long ago 2-4 weeks ago, I took a Humira and Methotrexate shot and suddenly had a hard time breathing, coughing and wheezing that subsided with the use of an inhaler I have for very infrequent occasions of severe allergy attacks. I didn't know if the attack was because of the shot, but I apparently made a "mental note to self" that the shots may or may not have been the culprit of the attack. Last Friday I gave myself a metho shot only and the same allergic-type reaction occurred with a cure from the inhaler. The migrating and more severe pain started last weekend. I don't recall if there were successful shots in between the two reactions that didn't produce an attack. I also don't know if these "allergic" reactions are the cause of all these other symptoms.

I was relieved to see here that others have experienced the swollen glands. I guess misery really does love company. I'm posting because I wonder what others have found as a cause for the swollen glands and if there's a solution and also if anyone else has had allergic reactions to metho after several years of use.

In case this is important to note... I take all my meds in the evening including 1 celebrex, 3 sulfasalazine, folic acid and thyroid meds.

Thanks for any insight and help you can provide. If nothing else, it's sadly reassuring at least some of these symptoms are happening to others.

Be Well,

Krysti

Belinda C
New Member


Date Joined May 2013
Total Posts : 1
   Posted 5/31/2013 9:29 AM (GMT -6)   
Hi There everyone,

This is my first time posting... I've had RA for approx. 10 years. (Rheumatoid Factor Positive) It started in my shoulders and I now have it in my hands, wrists, feet, ankles, elbows, hips and collar bone. I even had heart palpitations and even my eyes would be inflamed at times. For the last 12 months my Lymph nodes have been swollen under my right arm and in my right groin and I have been quite paranoid as we have a strong family history of Lymphoma.

My younger brother was diagnosed with Hodgkin's Lymphoma at age 12. He was given very little chance of survival however he went into remission until he was diagnosed with Non-Hodgkins at age 35. He's been told it's terminal and that he has 5-10 years to live. He has now gone 5 years. On top of all this Dad was diagnosed with Large defuse B cell Lymphoma and was also told his chances were slim. He is now in remission 5 years on. So to say I'm a little nervous about my lymph nodes being swollen is an understatement.

I've had numerous scans, a FNA (Fine needle aspiration) which have come back normal. I have also had a mammogram which I get the results for on Monday. My doctor has put me on the public waiting list to have a surgeon do a biopsy on the lymph node under my right arm but apparently there is quite a long wait here in Australia to have this done. My brother told me it would cost approx. $8000 here to have it done privately.

I forgot to mention that I was put on Methotrexate for a short time but this coincided with the lymph nodes swelling so I took myself off them. Due to my pain levels being unbearable at the time I researched alternative ways to combat RA. I turned the internet upside down and inside out. I also used myself as a guinea pig to find out what works and what doesn't and this is the conclusion I have come to...

I stay away from sugar (I've swapped it for honey) I also became a vegetarian (I still eat fish) and I also cut dairy from my diet and I now drink soy milk and use a dairy free margarine. I have very little processed foods and the results have been incredible to say the least.

When I was diagnosed my CRP levels were 17 & my ESR levels were 47. Now my CRP is 6 (1-3 is normal but I also ate things I shouldn't have a few days before my blood test shakehead ) My doctor said it was the higher end of normal. My ESR levels are now 20 which is normal. I'm still not on any medication and I don't take pain killers either. Like I said the difference is amazing when I think back to the days I couldn't even dress myself.
It appears diet plays a large roll in RA.

So the only concern is my lymph nodes now. My brother ask his oncologist about the link between RA and Lymphoma. He said the link is extremely rare however it is more in my favour than my brothers. Apparently someone with Lymphoma has an increased risk of RA and not the other way around. My Dads oncologist said he has very few patient that have RA.

Anyway I will keep you all posted about my biopsy results. Fingers crossed it is just RA related.

Cheers,
Belinda

PS: Forgot to mention I'm 44 yrs old smilewinkgrin
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