what has your primary care physician said?

depot

There are many possible reasons for having enlarged lymph nodes, some completely unrelated to RA and RA meds. But.....All of the biologics have potential significant side effects / complications. As depot has insinuated, see your PCM ASAP to have this evaluated. If your PCM blows it off, I would be pushy about getting it evaluated.

Hi depotblue and doodlebug25 thank you for responding. I saw my PCP and initially she was really worried but since the ultrasound report was not so worrisome and at the 2nd appointment she thought it was a bit smaller she thought it was probably a reactive node. I have no other signs of an infection, so I am worrying it's something sinister. I do have an appointment with a head and neck doctor this Thursday so I'm really hoping I'll get some answers because the nodes that I can feel have gotten much bigger since last dose of simponi and one of them continues to feel quite hard. Still pressure in my head and increased swelling in one side of the face.

Saw the head n neck specialist yesterday. He's arranged an MRI and an ultrasound guided fine needle biopsy in the coming week. Felt better after, knowing we'll get to the bottom of this but feel bummed again today. Totally exhausted. Haven't done much but can't put one foot in front of the other. Had to say no to a walk with my husband. Feel like I'm letting him down all the time. I just don't have the energy to do stuff :(. Good to get it off my chest. Hope to be writing with better news soon.

Glad you are getting this checked.
Hope you have news soon, and that you are feeling better and going on walks soon.

Sending prayers, love and light

I was on Simponi for 8 months, and it was a great med for me, until it totally failed one month.

Perhaps you have been on it longer, but I never had a single side effect from it. I think the thing about lymph nodes, is that it can be a sign of cancer. I had this terrible family doctor, never paid much attention to me, and said some rude and unprofessional things in my hearing. But when I walked in with a swollen lymph node in my arm pit, he was on the phone and had me in to see a specialist in a matter of minutes.

I did dump that doctor, found a good one 2 tries later, then moved to another province. Well, it sounds like your doctor is on the ball about this. Have you asked your rheumatologist about the possibility of it being caused by Simponi?

Thanks WG and doodlebug. It's another day, maybe today will be better.

I've been on Simponi almost 8 months now but I was on Enbrel for several years before that. The thought that it might be Cancer, is what's been worrying even as well, given how long I've been on methotrexate and biologics. Sometimes I feel like it should be ok, since aside from the enlarged neck nodes and fatigue, I have no other symptoms of cancer but other times I worry that's because maybe it's just too early yet. It's the unknown that's scary and the thoughts wander :(.

Did your swollen nodes turn out to be something benign? Sorry if it's something you'd rather not share. The specialist said there is a long list of things it could be but he'd rather not bore me with that and that he is more interested in what it 'is'. I think it's his way of quelling my anxiety and putting a as top to speculation. I suppose there is a possibility it could be something totally benign but with multiple enlarged nodes and some that I can feel getting bigger, I just get anxious.

You were wise to change your doctor. No one needs a judgemental doctor when all you need is a caring and compassionate clinician. My family doc has been very good.

I asked my rheumatologist about stopping simponi and even the head n neck specialist and they said to continue with the meds. I guess they definitely don't think it's an infection because if that was they case I know they would asks me to stop temporarily at least.

Been in the eye of a storm last couple days. Went to see the head and neck surgeon about the biopsy results on Monday and was told That the core biopsy showed diffuse large B cell lymphoma. Been trying to wrap my head around what it means, just trying to absorb it all...my husband is devastated and I feel his pain more intensely than my own and not sure I have the capacity to even fully think about what this means for us. I'm coping but only an hour or few at a time. Waiting for a hematologist appointment now and additional testing to determine next steps. I'm sure there is a silver lining in there somewhere, I just have to keep looking for it. No more methotrexate and no more simponi. RA doc said to stop both. Apparently the treatment for lymphoma consists of chemo, prednisone + rituxan, so I'm covered for the RA once treatment starts for lymphoma most likely. It's just the emotional and mental roller coaster I'm not sure how to deal with...

I am so sorry about your biopsy news, and yet am so glad you went in to get it checked and got the biopsy done quickly to get some answers. The hematologist/oncologist will outline your treatment and you may be quite amazed at how very precise and detailed their treatment protocols are for your specific lymphoma. It is quite different from the somewhat nebulous diagnosis and treatment for RA and autoimmune disease. I wish for you a full recovery.

I am glad you told us where you are. This is a good group. Holding you in light and thought. Be strong.

depot

Thank you both. I'm also glad I didn't drop it. I'm going to put up a real good fight! Hugs and best wishes. It truly is a great group. I'll check in now and again. Take care.

I’ve mostly dropped out of the board for the last year and a half. I’m happy to report that I’m in remission. Lots of ups and downs but can’t complain. I feel deep gratitude for all of your support. It really helped me through the initial phase.

Despite all the difficulties I’ve experienced in the last little while I can honestly say it’s helped me wake up to life, learn what’s important and be grateful for so much.

My RA is doing better also. For the first time my ESR and CRP are normal. It’s incredible. I’m only taking a tiny dose of prednisone. My Rheumatologist thinks that after a big illness, like lymphoma sometimes the RA will become quiet. I do still have painful joints but not like before. One knee keeps me from walking too long as it has been grinding and painful but the other joints are very tolerable. I’ve also been on CBD oils which are prescribed by a physician and they’ve made a huge difference in my pain and sleep. My rheumatologist thinks that while they may be helping (known to have an anti-inflammatory effect), they are not fully responsible for my normal ESR/CRP.

I’m still recovering from treatment effects and keeping my fingers crossed that I’ve seen the last of the lymphoma.

Thanks again to all of you for your warm support