Author Topic: persistant sore lymph nodes? (Read 15836 times)

beto · « **on:** May 29, 2016, 02:10:10 pm »

Hey all,

This is not an EOT blues post, however I have to get it out there in case someone else has had a similar experience. Whats going on likely has nothing to do with post harvoni oddities, however, whether it does or not, I thought best to put it out there.

Just over three weeks ago I returned from a very stressful business trip and had completed a very stressful time period. I woke at night with inflammation on the right side of my neck...was sore and felt like a cyst...sudden onset. The inflamed node subsided in a few days, however, a persistant off and on neck node tenderness continued and moved around my neck...more to the left side now and under the Adam's Apple around the windpipe and particularly near the trachea. I have had chronic fatigue, night sweats, feverish, lightheadedness and a bout with chills. All of the symptoms are intermittent. The pain and soreness will greatly subside and my energy will return one day (enough to go to the gym) and the next I could be weak, fatigued and very lightheaded.

I have not had an internal sore throat with this,just sore to touch on the outside. Nights are worst and I have awakened with pain all over my neck, head, and teeth. Yes this could be a million things but very atypical of anything. EBV, CMV, thyroid, Valley Fever, pharyngitis, oral infection...so many things. Yes I am going to the doctor and am not looking for a lay diagnosis. But the thing is, I have never had anything in my life quite like this...and it doesn't get much better.

Has anyone ever had a similar experience? Or, has anyone post treatment experienced this? The strange thing is, usually swollen nodes turn into a cold or flu or some manifestation or the soreness goes away in a few days. Also, ibuprofen cuts it down considerably...meaning, it is inflammatory in nature. Maybe a hyper immune responce..

I will go to see my doc next week...very frustrating and curious. The internet has been mostly useless. I doubt a relapse ... Not like me to post weird symptoms out of the blue, but this is just so odd.

KimInTheForest · « **Reply #1 on:** May 29, 2016, 03:21:52 pm »

Welcome to my world, Beto. What you are describing (swollen lymph nodes, fever, night sweats, lightheadedness, extreme fatigue) is what I have been living with for ten months now, ever since completing my Harvoni/ribavirin treatment last July. Some days/weeks I am pretty much bed-ridden. Then it subsides and I am able to get a few basic survival things done, like grocery shopping. Then it returns for more days or weeks. My life is completely on hold - no writing, no income, I can scarcely take a walk.

I really do not understand why people (doctors and patients alike) are so reluctant about saying these post-treatment health problems may be connected to treatment. In all likelihood it has everything to do with treatment. I had none of these problems going into treatment. I had never had an illness like this or symptom cluster like this before in my life. This is a new thing for my body that arose during treatment and never left.

Maybe in your case, Beto, this all started recently, in which case the treatment itself is not so likely an explanation. But in my case, most of my symptoms began during treatment and were passed off at the time as treatment side effects... but they never went away! In fact they worsened post-treatment.

And before people jump in and start lecturing me - of course I am seeing a multitude of doctors and having a multitude of tests done every month. That really goes without saying. So let's not assume I am so dense or clueless that I cannot seek competent medical advice and tests. (Comment not directed at you, Beto, but others.)

Anyway - good luck, Beto. I will be interested in hearing anything you find out about your situation. And I will post any news I have about mine, if there ever is any.

Best to you,
kim

KimInTheForest · « **Reply #2 on:** May 29, 2016, 03:38:21 pm »

One thing I should add is that, while I have many enlarged lymph nodes post-treatment, they are not sore. Just wanted to clarify that, since soreness is part of the title to this thread.

kim

KimInTheForest · « **Reply #3 on:** May 30, 2016, 01:40:41 am »

Sorry if I scared people off this thread with my ranting. This prolonged post-treatment illness has made me cranky. You asked a good question Beto, and I hope others who have experienced these symptoms you describe will also reply.

kim

FutureThinker · « **Reply #4 on:** May 30, 2016, 11:18:31 am »

Kim, just want to say that we are here for you and while we may not know exactly what to say, we are here for you and want you to get over this period as soon as possible. None of us is happy to hear about this very hard time you're going thru. I hope some answers are available for you with the continued follow-up appointments.

Beto, same is true for you. Hopefully, between the two of you, someone will get this figured out, and soon. FT

beto · « **Reply #5 on:** May 30, 2016, 02:18:27 pm »

Kim,

We should not hesitate to divulge news that sounds less than positive. We are all here to support but also to discover and learn. I am pretty sure my recent situation has to do with a tenacious infection, however, I feel my body and immune system have changed since I completed tx. Not necessarily a bad change but, indeed a change. I like FT, am very concerned about what you have gone through and want to continue to be there for you.

My intention was to see if anyone has had a similar experience. There could be a virus going around with these symptoms. Then again if 10 people posted that they have had the same experience, It would point to interesting possibilities. My heart and prayers go out to you. I believe that you will begin to balance out eventually. Your issues sound like lupus or something auto immune. You are not alone...I have seen a few others struggle to the degree you have.

I know that discussions about possible post issues are not very popular. Nor are relapse stories. We are all blessed to mostly read about SVR 4, 12, and 24. Most of us are so lucky to have gotten the meds and cleared the virus. We can't ignore possible issues (even long term) from this cure experiment. It is our duty to report and chronical everything. Face it...who will if not us?

While despairing a bit with my recent down turn, I found a lab document my insurance had sent me. It had a page that compared the past 3 years of bloodwork that we do every year that gets us a lower premium. I was in such denial for the 1st two years that I had never opened the reports when they came in. This was because ALT,AST and GGT were in the mix. As I compared the numbers the 2 prior years had horrible numbers and when set next to this year, the new numbers were fantastic. This reminded me that I was saved from something that was killing me.

JackN · « **Reply #6 on:** May 31, 2016, 12:41:23 pm »

Beto and Kim

I'm right there with you both. Having very odd health issues. Sometimes my head feels like one big cramp, my neck feels stuffed with cotton, and sore. I have had two upper respiratory infections, now a cold since EOT. My sense of smell is out of this world. My immune system feels super hyper right now. I am seeing hematologist and having many many tests. The fatigue is horrible. I'm hoping though, in the near future, I will be back to my old self. My cryoglobulemnia seems to be improving though. I have just resolved myself to the fact it is going to take my body a while to recoup from the meds and the virus.

JackN · « **Reply #7 on:** May 31, 2016, 01:00:49 pm »

Also want to add my appetite also increased, almost to the point that I could eat all the time. I have to contain myself (have gained 8 lbs). I also fell asleep on my own last night (haven't done that in a long time). Fingers crossed all will improve.

fourlocos · « **Reply #8 on:** June 01, 2016, 10:19:25 am »

I wanted to pipe in to this post and let you know that I also have had swollen lymph nodes post treatment. I am 16 months post and since treatment stopped I get them in my groin area as well as the back of my head. That head ones are freaky and hurt! They respond to the slightest thing. Like I nicked myself shaving the bikini area so my glands swelled. And with my head, I had a bite of some sort and then they swelled up again. Sometimes I don't know why they swell. Add that to the constant joint pain in my hands and feet and I am a party waiting to happen!

morab · « **Reply #9 on:** June 02, 2016, 03:10:09 pm »

To all of you with symptoms after tx, I hope to see in the near future that you are all doing fantastic. I think it is very important to let the forum know these issues so that others may learn things to watch for.
I am half way through my 12 week Harvoni tx and it is getting easier!
My lymph score was high on my 4 week lab so I am a little concerned as to what that means.
Good luck to us all!
Morab

beto · « **Reply #10 on:** June 03, 2016, 12:24:56 pm »

Jack et all,

I too have gained weight...maybe 10 lbs. So I went to the doctor and gave 9 vials of blood...haha...I though that s%$@ was over. Anyway, my situation is looking to be Thyroiditiis (perhaps). My neck below the Adam's apple has been inflammed and sore. My BP and pulse was through the roof in spite of meds. If it is thyroid it is most likely auto immune because that is the most common reason...or, a virus that attacked the thyroid. I am getting ahead of myself, I know. I could get labs that indicate otherwise. Thing is, I have very paradoxical symptoms of hyper and hypo thyroid...almost textbook. I raise this because, I have heard lots of stories on this forum over the last year of thyroid difficulties before, during and after treatment. There has also been the suspicion that we come out of TX with over active immune systems. Obviously we don't know if that is the case. However, HCV doesn't sleep and our immune systems were on high alert for sometimes decades 24/7. Then bam!! HCV Gone!!!

Again, I am not trying to keep a, now tired subject alive and am not trying to demonize the treatment. I also do not want to be a profit of doom at a time in peoples lives where they mostly need assurance and comfort. Also, I suspect that I have had burgeoning issues of thyroid for sometime (if that is what is going on).

Anyway, I'm not going to apologize...all of the information is valid and we all have a choice of what thread to follow. I hope all of us equal out and achieve a healthy homeostasis.

morab · « **Reply #11 on:** June 03, 2016, 12:50:35 pm »

Yes beto
It is good for all of us to stay informed of any possible side effects after tx!
This forum is my lifeline of therapy since I began tx and will continue to be for many years ahead!
Morab

KimInTheForest · « **Reply #12 on:** June 03, 2016, 12:52:45 pm »

Thanks for the update, Beto, and the mention of thyroiditis. I too continue to wonder whether a now-overactive immune system post-treatment is somehow related to my post-treatment issues & unwellness/imbalance.

I gave about 12 vials of blood on my last labs for all this. It was so much for me with my anemia and low hemoglobin that I became light-headed and couldn't drive home until I ate a banana and drank a juice in my car. My TSH was normal, so no one is looking further at thyroid in my case.

My GP and I are making a big effort to get my iron/ferritin up (with supplements) to see if some of my symptoms will go away. Many (but not all) of my signs and symptoms could be explained by the anemia, including night sweats, enlarged spleen, rapid heart rate, and of course the low hemoglobin and RBCs. But of course there are other possibilities as well.

kim

beto · « **Reply #13 on:** June 03, 2016, 01:02:17 pm »

Kim,

This is probably moot, however, I believe having a T3 t4 test can show Thyroid issues even if TSH is OK. Anyway, you might at least bring it up to you Doc. 12 vials...holy cow!

. I hope a day come soon where we are all looking back at this time and smiling because all we had to do was wait it out. peace

KimInTheForest · « **Reply #14 on:** June 03, 2016, 01:06:57 pm »

Quote from: beto on June 03, 2016, 01:02:17 pm

Kim,

This is probably moot, however, I believe having a T3 t4 test can show Thyroid issues even if TSH is OK. Anyway, you might at least bring it up to you Doc. 12 vials...holy cow! . I hope a day come soon where we are all looking back at this time and smiling because all we had to do was wait it out. peace

Hi Beto. On my labs, there is a note that says the T4 order was cancelled because the protocol recommends no further testing if TSH is normal. So in other words, if I want the T3/T4 test, I might have to pay for it myself since BC Phamacare doesn't consider it necessary with normal TSH. (I had to pay for my Vitamin D test myself.) I'll mention it to my doctor. But I think in my case, thyroid is not the most likely suspect.

best,
kim

HazelAustralia · « **Reply #15 on:** June 04, 2016, 10:39:34 pm »

I just wanted to say that I am concerned and receptive to reading posts from people who are suffering these or other symptoms following treatment. I do not find them negative or typify them as "end of treatment blues" posts. I want to know what is happening for people in this community. I am having some - minor compared to some - after effects from treatment, and it is also valuable to have those coming before me to base my decisions upon. Best wishes to you all and thanks.
Hazel

beto · « **Reply #16 on:** June 06, 2016, 07:54:11 pm »

Well not persistant sore lymph nodes...Auto immune thyroiditis and Sjogrens syndrome (also auto immune). My thyroid is being attacked by antibodies. By my body. Hyperthyroid by all indications, however, I am gaining weight and have brutal fatigue by days end (hypo symptoms). Resting pulse 105 bps (paradox). High BP. I'm on betablockers now...and they kind of make me feelingless. Anyway, gonna beat it. Walk in the park right? Pain in the ass actually...haha

let's all keep a lookout for autoimmune issues...peace

beto · « **Reply #17 on:** June 06, 2016, 08:09:27 pm »

good news is...when I got my bloodwork back with all the auto immune markers jumping off the page...my ast/alt was 12/13...all other bloodwork was impecable. Platlets were 312. damn yo's.

KimInTheForest · « **Reply #18 on:** June 06, 2016, 08:31:19 pm »

Quote from: beto on June 06, 2016, 08:09:27 pm

good news is...when I got my bloodwork back with all the auto immune markers jumping off the page...my ast/alt was 12/13...all other bloodwork was impecable. Platlets were 312. damn yo's.

Nice platelets and AST/ALT, Beto! My platelets have come up to 141 at last count (reference range 150-400), which I am happy enough with for now. Better than my low of 94 just 2 weeks earlier. And ALT has been good since Hep C gone.

You mention auto-immune markers. I seem to have been tested for some of those this last time around. One abnormal result was:

Nuclear Ab Titre and Pattern

Result: 1:80 Titre
Reference Range: <1:80

Speckled pattern may occur with antibodies to extractable nuclear antigens (ENA) seen in SLE, Sjogren's syndrome, MCTD or scleroderma. Usually in titres <1:160, a positive ANA may be seen in about 5% of healthy individuals, especially in the elderly and in females. Clinical correlation is required.

HEp-2000 cell substrate for indirect immunofluorescence shows improved sen-sensitivity for SS-A/Ro antibodies.

Another abnormal result under Immunology was:

Neutrophil Cytoplasmic Ab
PR3-ANCA

Result: 1.1
Reference range: <1.0

Tested by a multiplex flow immunoassay (BioPlex) method.
----

All other tests under Immunology came back negative or unflagged, including Rheumatoid Factor, Smooth Muscle Ab, Mitochondrial Ab, Tissue Transgutaminase Ab IgA, and some other things.

So I am not sure what the 2 out-of-range ones mean. Will ask my doctors, of course. They don't look very out-of-range. Right on the border, really.

kim

beto · « **Reply #19 on:** June 06, 2016, 11:22:10 pm »

Interesting. All these tests right? I'm pretty solidly deep in range for a few things but not in many others. Here is a tidbit...I have West Nile antibodies. I don't know how common that is. Interestingly though, my uncle died of West Nile Virus about 6 years ago and I have this memory of the two of us siting on his back porch in North Carolina talking, when a swarm of mosquitoes attacked. We moved out butts quick into the house...hehe. I have always wondered if that is when he was infected. I guess now I can wonder if that is when I was exposed. Mosquitoes love me...heheh...could have been Costa Rica, Mexico...or my own back yard. Makes ya think though...

gnatcatcher · « **Reply #20 on:** June 07, 2016, 06:10:47 am »

Kim, you are correct that your titre is near-normal. When I google Nuclear Ab Titre, the only results that come up are for the Antinuclear Antibodies (ANA) test, which is something I've had periodically to assess my SLE/MCTD (the rheumatologist was undecided as to which label fit me better; the nephrologist called it "lupus nephritis" since it damaged my kidneys). What you posted mentions SLE, MCTD, and ANA in the text, so I assume it's the same test. At the labs I've been to, the normal range for ANA is negative and the titre amounts increase in powers of two. My results have ranged between 1:320 and 1:2560.

Beto, very sorry about your uncle but very glad your immune system was able to vanquish the West Nile virus. Oh, those pesky mosquitoes, determined to get enough protein so they can become mothers (yes, it's only the females that play Dracula)! They love me, too -- it really gets in the way of my nature photography.

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Author Topic: persistant sore lymph nodes? (Read 15836 times)