Author Topic: New Symptom 3 days left (Read 14770 times)

morab · « **on:** July 07, 2016, 06:49:35 pm »

I have 3 days left of 12 week harvoni tx. Today the right side of my neck began to hurt below my right ear. Now there is some swelling in the area as well.
The pain is pretty intense and I don't see my Dr. until next week.
Has anyone experienced this? Is this a lymph node area?
Concerned. I also called the Gilead nurse line today to report all my symptoms.
They did take all my information, were going to document it, yet did not seem that concerned or very interested in general, it must have a lot to do with who you get on the phone.
Morab

gnatcatcher · « **Reply #1 on:** July 07, 2016, 07:14:02 pm »

morab, although I'm not a medical professional, the way you describe it does sound like a lymph node. Whenever I would experience that area (on either or both sides) hurting and swelling, if I got a lot of extra rest/sleep pronto, it resolved itself. But if I didn't get the extra rest/sleep, it usually got worse. (I didn't experience this during treatment, but rather in earlier years when I had a stressful job.)

Can you phone your Dr. tomorrow?

Gnatty

morab · « **Reply #2 on:** July 07, 2016, 07:42:25 pm »

Gnatty
Thanks for the reply. It is doubtful I would be able to talk to my Dr. before my appointment next Tuesday, I will see if I can get some R&R although my household is pretty full these days with activity. I have a 31 year old daughter with CHARGE Syndrome and just lost her overnight caregiver. So Holly now has in home care 5 nights a week. It takes both me and my partner to keep her occupied but I think I might be able to get a little break and have Steve take care of both of us at this point. I am sooooo close to my last pill on Sunday.
Thanks
Morab

gnatcatcher · « **Reply #3 on:** July 07, 2016, 08:00:58 pm »

Morab, you certainly are under a lot of stress. If Steve can let you get a good night's sleep tonight, he has my thanks as well as yours! Here's hoping you can nip this in the bud.

Gnatty

KimInTheForest · « **Reply #4 on:** July 07, 2016, 08:04:07 pm »

I had some pretty massive lymph-node swelling, and body-wide, when I was halfway through my 12 weeks of Harvoni+riba. So yes, I too think it could be a lymph node you are feeling on your neck. definitely tell your dr when you next visit. but afaik, a recently swollen lymph node is not a big concern. persistently swollen lymph nodes could be. I'm no doctor tho!

You are almost done, morab. The finish line will warrant a celebration of some sort!

kim

BillT · « **Reply #5 on:** July 07, 2016, 08:07:15 pm »

Hi Morab.Sorry to hear you're having a problem this close to EOT.I'm no doctor but try to get through it.This may not even be a side effect but one never knows.A lot of us have had strange things happen with these meds.You're so close to the end of this(as I said I'm not a doctor)even if you had to stop now I don't think it would hurt you.That's just my opinion.Just keep thinking about getting over the finish line with the dragons head.

morab · « **Reply #6 on:** July 07, 2016, 08:29:29 pm »

Gnatty, Bill, Kim
Thanks for all the support! I am cooking some squash from the garden and then to bed!
I will complete my last 3 pills and celebrate somehow for sure!
You folks on the forum have been my saving grace for weeks now!
I plan to follow this forum for years to come!
Morab

beto · « **Reply #7 on:** July 07, 2016, 09:42:31 pm »

Morab,

Just sayin' I recently (and still have) had what appeared to be swollen lymph nodes in my neck and painful. I had at 1st a long cyst like leision. I thought...so what lymph. Sometimes the pain would go up the neck to my ear and especially at night. Also, jaw and tooth pain that came and went. After 4 weeks I went to the doc...turned out to be subacute thyroiditis. Well as you can imagine I did some digging. Hep-C and hyper immune states...as well as other sundry viruses can affect the thyroid and cause this inflammitory issue. Anyway there is the adage...if all you have is a hammer...the worlds problems look like nails. You could just have swollen sore lymph for a variety of reasons...however...have your doc consider checking the thyroid. TSH, Free T3 and 4, Erythrocyte sed rat and inflammatory markers...never know.

Other symptoms...chills...fever...or just feeling too hot...fatigue...fast heart rate...higher BP...anxiety attacks...etc...hyper Thyroid crap.

morab · « **Reply #8 on:** July 08, 2016, 06:55:16 am »

Beto
Thanks for all that info. I will call the clinic today and see if I can get in, if not I will try to lay low all weekend for sure.
I wrote down all the tests you talked about to take in to my Dr.
This AM my whole neck is swollen, even my bottom lip, a very strange feeling for sure.
Soon I will be able to detox and hopefully recover from all this.
morab

Patty · « **Reply #9 on:** July 09, 2016, 03:25:23 pm »

Hi morab,
I finished my last treatment yesterday, and yes my lymph nodes have been swollen, I used ice packs to help with the swelling, for the one up around my ear and throat I layed on a heating pad, but yes ask your doctor. Glad you will be done soon, I will post my labs when I get them. Praying for good results. I'm like you I want this stuff out of my system ASAP !!! You have been very helpful and encouraging, it was nice to have someone to talk to through this ordeal. I pray your results are good. Remb to keep drinking water to flush your system out and try and rest as much as possible.
Patty

morab · « **Reply #10 on:** July 10, 2016, 08:14:29 am »

Patty
Congratulations of finishing tx! My new question is will this lymph thing go away? Or is my body attaching my thyroid gland?
Treatment complete and ready to start feeling better!
morab

brie41 · « **Reply #11 on:** July 10, 2016, 10:20:35 am »

Hi Morab,

I never heard of a swollen lymph node causing that much swelling and especially your lip to swell. I would go to a walk in clinic today to have this checked out. I didn't have swelling but weird pains in my neck and jaw at times. Good luck finishing up and I also believe rest is the best thing we can do for ourselves too. Brie

morab · « **Reply #12 on:** July 10, 2016, 11:18:07 am »

brie
I have rested all weekend doing naps during the day, the swelling is going down. Still a very frightening experience!
My ins does not cover walk in clinics, so I wrote down the tests you posted so I can discuss with my Dr. this week.
Just hoping this is not permanent damage to my thyroid.
Looking forward to detoxing and reaching SVR!
morab

Patty · « **Reply #13 on:** July 10, 2016, 10:08:57 pm »

Hi morab,
Definitely see a dr and get some test done. From the research I've done, this medicine puts are immune system out of whack. And you may find that you now have some auto immune diseases that you did not have before, so just be prepared for that. One I keep seeing people talk about is RA. I'm hoping our systems just need to adjust, after all we have been fighting hep c for awhile and have gone through a pretty strong treatment to kill this virus, so I expect we will just have to be patient and be our own advocates. Drs do not know it all, listen to your body do research and ask for the test you want done so you can start ruling things out. I'm not bouncing back so well. I'm miserable. But hopeful

the lymph nodes are swollen because your body easy fighting something, I just keep using ice packs and heating pad to relieve the pain. But I'm not a dr so I strongly suggest you talk to yours and keep a journal. Write down your questions and than hand it to the dr and he him address each one. I always have someone go with me, so the dr takes me more serious and I take notes because I forget what all was said. Best of luck my friend your in my prayers.
Patty

morab · « **Reply #14 on:** July 11, 2016, 09:41:06 am »

Thanks Patti,
Yes taking notes to the Dr office has become a regular thing for me so I remember what to tell him and ask for.
Woohoo this morning grabbed that harvoni bottle out of habit and it is empty!
I am still having a hard time sleeping due to pain issues in my legs, back, hips, feet it is horrid.
I do look forward to detoxing and hope these symptoms will go away!
If anyone out there is detoxing also give us your detox plan so we can all compare and see what might work the best!
morab

beto · « **Reply #15 on:** July 17, 2016, 02:50:59 pm »

Hey Morab,

Feeling any better? Wondering if you got Thyroid and/or auto immune tests. So I am better but still dealing with Subacute Thyroiditis. It's annoying but ma manageable. Well kinda...

.

I too have looked into my situation and indeed HCV and the meds for it can be precursors. Most of the literature was done during the "old Meds" (Interferon). Harvoni is too new. However, it is more likely the virus than the meds that begins the over reaction and the attack on the thyroid and other tissues. There are many viruses that can start the process.

I hope you get tests done soon. Good to rule out possibilities so you have a better idea of what steps to take. I was also diagnosed with Sjorgren Syndrome, which is an auto immune condition affecting the salivary glands. I believe that I have had that for some years because I had the symptoms for so long and indeed HCV could have exacerbated the situation. Now that I finally know, I can take steps to work on it.

There does seem to be quite a few cured folks compaining of auto immune conditions. but, can't forget the ones (and there are many) who have no such issues. I want to agree with patty that we just need to come into immune balance. HCV was a part of us and had its own demands of us...the hosts. We survivors had to come to some kind of synergistic compromise with HCV for sometimes decades. So, if it takes a year or two to get on track...so be it. We got through HCV, we can get through these annoying oddities.

KimInTheForest · « **Reply #16 on:** July 17, 2016, 03:06:05 pm »

Quote from: beto on July 17, 2016, 02:50:59 pm

... I want to agree with patty that we just need to come into immune balance. HCV was a part of us and had its own demands of us...the hosts. We survivors had to come to some kind of synergistic compromise with HCV for sometimes decades. So, if it takes a year or two to get on track...so be it. We got through HCV, we can get through these annoying oddities.

I believe this is the crux of it too, Beto. At least that is the only sense I can make of it. And indeed, throughout my own post-treatment health problems/debility/illness (which no one has yet been able to diagnose), it has felt more than anything like my body is simply 'out of balance'. And now that I am finally getting back to normal, what I am aware of is my body feeling like it is regaining a natural balance - probably a new natural balance in the absence of HCV, which had demanded its own unique balancing act of my body for so many decades. Who knows why some of us are so affected in this way post-treatment, while others aren't?

best to all of us trying to find our way back to balance,
kim

morab · « **Reply #17 on:** July 17, 2016, 07:21:30 pm »

beto and Kim
I had tests run last week and awaiting results. I am feeling a little better!
Feeling very confident that the BEAST is gone for good, now to just find a new normal!
I have no fear of waiting on that big SVR like some do,,,,, so that is good.
I hope to hear my lab results this week about my thyroid etc.
Staying positive thanks to all you here on the forum!
Bless you all my newest dearest friends
Morab

KimInTheForest · « **Reply #18 on:** July 17, 2016, 07:32:43 pm »

Good luck on those lab results, Morab.

kim

AussieRosa · « **Reply #19 on:** July 18, 2016, 10:56:20 am »

Morab, congratulations on finishing treatment, and good luck with these tests. Wishing you all the best for good health and SVR.

morab · « **Reply #20 on:** July 22, 2016, 11:11:53 am »

All my recent lab work for EOT have come back normal! I am slowly beginning to feel better and some days I actually have energy!
Thyroid tests were normal as were my liver enzyme tests!
Looking forward to SVR 12 and 24.
Morab

FutureThinker · « **Reply #21 on:** July 22, 2016, 01:27:49 pm »

Excellent news, Morab!!

While I was browsing in a gift store yesterday, I came across a small 6" plate that read "This will be my year".............. to say the least, it was a must-have! Still being positive and feel I'm still UD due to increasing energy, initiation and endurance...... but will know in a month for sure. Glad to hear things are looking up for you, FT

AussieRosa · « **Reply #22 on:** July 23, 2016, 06:12:56 am »

Great news, Morab! As FT said: here's hoping this will be your year. You deserve it. You've got SVR to look forward to and I'm sure you're going to make it.

Philadelphia · « **Reply #23 on:** July 23, 2016, 06:05:20 pm »

Great to hear your numbers are looking good!

morab · « **Reply #24 on:** July 28, 2016, 11:56:41 am »

I am right about 2 weeks EOT and have had a few days of depression! Anyone else have this effect coming off treatment? I am still having inflammation issues, pain in hips, back and feet, but doing some herbs for that so hoping to get some relief soon.
I was just wondering if the depression is linked to the treatment?
In general I do feel like I am headed in an upward direction and feel I am totally cured even though I have not reached the SVR 12 yet, I just know that is coming and so excited about the BEAST being gone from my system!
Morab

FutureThinker · « **Reply #25 on:** July 28, 2016, 02:41:33 pm »

Morab, I can't speak to the depression question, but to the continued aches/pains: I've taken glycosamine sulfate for years upon the advice of my GP for osteoarthritis and it does seem to help. I purposely went off it for the first 2/3 of my Harvoni treatment, just to see if it was helping or not -- and I determined it was, esp. with my knees, so resumed the last couple of weeks of treatment. It does make a difference for me, and studies support the benefits, so maybe ask your GP about that as an option. Hope this may help, FT

morab · « **Reply #26 on:** July 28, 2016, 05:22:29 pm »

Thanks FT
It seemed to last about 4 days for the depression, I am trying to take some long walks in the woods, but now the seed ticks and chiggers are so bad I think I will stick to the driveway after getting eaten alive. We had some good rain and the creek and waterfall are running so that is very soothing and has helped my mood!
Morab

KimInTheForest · « **Reply #27 on:** July 28, 2016, 05:36:29 pm »

Hi Morab. You might trying buying/eating lecithin, see if it makes a difference with the depression. I know that is an unusual suggestion for depression. But I have been researching this a bit lately because I started having brief but intense plunges into depression while on treatment. I assumed it was the ribavirin mood swings. And then that continued post-treatment. I do not have any history of depression, so these were very new feelings for me. And this depression was so swift and inexplicable that I could tell it was not "context-based" as in: 'My health is crap now, boo hoo'. It was quite clear to me that something had shifted biochemically in my brain during treatment, along with all the many other shifts and unbalancings that occurred throughout my body at that time.

Specifically, my feelings of abysmalism would occur right as I was waking up - either from a night's sleep or a daytime nap. Interestingly, I discovered that they also occurred the day AFTER taking medicinal cannabis oil, which I was trying briefly a couple of months ago when I was so ill from post-tx mystery malaise. So in reading up on cannabis oil, I discovered it can deplete the neurotransmitter acetylcholine, and that affects our mood. Lecithin is a good source of precursors to acetylcholine, so I thought - why not? I tried some today and I think it helped.

I am sure this problem will go away for me once everything else in my body is back to normal. And I hope it does for you too morab.

Good luck!
kim

morab · « **Reply #28 on:** July 28, 2016, 05:52:15 pm »

Thanks Kim for the idea!
Yes it hit me like a ton of bricks and I was not expecting to feel depressed, everything just seemed to make me cry or feel bad and depressed. Today I walked it off but the heat and humidity here is so intense I don't want to be outside for long.
Morab

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Author Topic: New Symptom 3 days left (Read 14770 times)