Hi fourL,

Before I did tx, I had years of immune issues from vomitting migraines and newly forming food/chemical allergies to debilitating arthritis and horrendous skin rashes. The medicos decided it was auto-immune but... it wasn't lupus,or RA, or pretty much anything they could 'test' for so I found the specialists were ....ummm... not at all helpful or caring or the least bit curious about what could be the cause or what I should do, and that was that.

(believe it or not but I waited 3 months with itchy rash on my arms,chest and back to see "the best autoimmune" Dr and she recommended I soak in a mild bleach bath twice a day)

Then I got treated and like you, am over 12 weeks post treatment SVR.

As you know, a functioning liver is really important for immune health, I still have some arthritis( but less frequently) and allergies (but the symptoms are less severe), I still get peripheral neuropathy in my feet and hands(don't know if that will ever lessen).

I am really hoping that caring for and rebuilding our livers might eventually help with the other stuff.

take care

Alison

Sorry you are having continued joint problems, 4L.  In hopes of easing your mind a bit about the Vitamin D pills, I take 5,000 IU a day and have for over a year due to a very low Vitamin D level found after treatment. My level is tested every 6 months along with the regular check up testing. After a year on Vitamin D, I am finally testing at the low end of normal. Good luck hope you feel better soon.

Hi thanks tig and wendy.  Yes I took the sublingual about 6am.  Still kept me awake at night.  I did have all kinds of test at the Rheumy office.  That is who found the vitamin level of B12 and D quite low.  Yes I still am doing 2-3 miles a day with my dog.  I actually feel better afterwards.  It's mainly my feet but generally I am achy all over as well.  Not as bad as the feet.  Some days better than others.  They decided I do not have RA.  It's a relief for sure.  She didn't ask to see me again either which was odd.  It was like here take some vitamins and go see your primary.  Off to the woods for our very windy and cold walk today.....

Hi 4L - wanted to share that I take a B complex in the morn with the rest of my vitamins and pop another with my lunch. That way it is not too late in the day as I have enough trouble with sleep as well. Just a thought Hope you find some relief soon.

Hi 4L,

Good to hear from you! Sorry your feet are still bothering you, what does the doctor say about it? Is the pain just in your feet? Any neuropathy in your feet?

I heard about that sublingual B12 and couldn't find it at the first store I went to. Still bought something similar because my last serum B12 was low. What were your last results? You might request a full battery of tests to determine those levels. Too much or too little of one will throw off another.  I found this great Vitamin website through Oregon State University. It's very informative: OSU:VITAMINS

I hope you're doing well otherwise. Are you still taking your dog on the long walks? I was glad when you were able to start those up again. Let me know how it's going when you get a chance. Be good!! 

Sorry haven't checked in for a bit.  So B12 sublingual are what I have been trying.  I do feel a great burst of energy from them.  Even half the dosage is causing me to not sleep!  So that becomes another concern.  I do better with rest.  I lay awake for hours with my head just buzzing along.  I can't seem to shut down.  Some might say why not ask for sleeping pills.  See that is a stupid idea to me.  To have to take, in my case a half a valium that I had in the house, to sleep is nuts when the vitamin is causing it.  So stopped taking them and I sleep well again now.  I am on the Vitamin D but they also say to take Vitamin K with it.  I can't find much to say whether Vitamin K is safe for the liver.  It is conflicting things I have read and I don't want to risk it till I know for sure.  This whole vitamin deal for me has been worse than Harvoni!!   Haven't gone to see my primary about it.  I have tried two forms of B12 now and one causes me horrid headaches and the methy one is great if you want to go without sleep forever in my case.  I did like how much energy I had.  Strange that they are like pure speed for me.  In the meantime, I am still having terrible pain in my feet.  It isn't going away I am assuming since it is over a year now.  I just live with it.  Rarely taking anything for pain since I am trying to treat my liver well so that it hopefully recovers.  As far as retesting once your on B12, it will always show it went up.  You have to stop taking it for several months to get a real test result.  I am on a group for B12 deficiency.  And many that inject it themselves daily don't sleep much.  I find that disturbing.  They seem addicted to it!  They are like over the top with it. 

Hi 4L,

For what it's worth (not an "instead", but rather just "another way" to help resolve your B12 deficiency), if you require "ongoing" B12 boosting, after this B12 shot .... this topic has been mentioned in other threads here i believe, and, I am thinking of a personal experience by a friend of mine ... she had always had, and would always have a tendency, to be in an ongoing state of being B12 deficient, so she, for quite some years, kept going back to her doc for B12 injections which worked and DID made her feel better, she could tell by how she felt that she had waited too long between shots, and when it was time to go back for another. (She has a tendency to let things slide). About three years ago she heard about and started experimenting with taking "sublingual" b12, and was suprized it worked for her, she is not the most regular/on time kind of person - but found the taking the sublingual at home treatment far easier to remember, comply with and do on a regular basis, than showing up at the doc's office for shots, shots which she was often late for. She is a tough gal and said she had no trouble taking the shots, it was worth it to her to feel better.

"Apparently", on her new sublingual method alone now,  she is maintaining an adequate blood level of b12, so far, without having to do any more injections (as yet). But i do not really know, for a fact, if she has had repeat bloods drawn, she might be judging "by feel".

How many times have your blood levels of B12 been done? - from your baseline (for comparison to repeat level tested after injection), should you and your doc find ongoing B12 amounts are needed, then as long as your blood B12 levels are regularly tested maybe sublingual would also effective for you and enough for you to keep them up .... perhaps this "sublingual avenue" could be tossed about between you and your doc as an option, or a future option. Certainly sounds a lot easier to take and less uncomfortable than a shot. 

Just my 2 cents. Sorry for your troubles. You did post (about your low D and B) a while ago now, so i am hoping you are already finding some resolution and relief for these things.  C.

fourlocos wrote:

---

 I am in terror at the thought of getting any shots or taking even vitamins!  I feel gun shy about any medications right now and need help getting through this.  I did better all summer and then things just unraveled health wise.  Started feeling really funky and tired again.  Aching so badly etc. 

---

 HI 4L, good to hear from you again, but sorry to hear you`re so tired and achy. 

I`ve had B12 shots in the past, some years ago when I was suffering from debilitating fatigue and was found to be low on B12, and they gave me an immediate boost in energy.  I was amazed actually!  I would definitely recommend them, from my experience.  I`ve also taken courses of high dose Vit D in the past and found them to be very beneficial. 

I can understand how you feel, but try not to be scared, if you`re extremely short of Vits B12 and D then I`m pretty sure you would benefit from going ahead. 

Let us know how you get on.. good luck!  

Hi Sherri,

The typical tests that are run prior to treatment are fairly routine, with the exception of the HCV RNA/PCR viral load quantification and the genotyping. Outside of that, they will run a CBC w/ differential, Complete Metabolic Panel (Enzymes ALT/AST etc), Clotting times, Thyroid Function, Hep A/B Antibodies, Urinalysis, EKG and a form of fibrosis testing, either by biopsy, blood markers (Fibrosure) or by Fibroscan ( Specialized Ultrasound). They will likely do a routine liver or abdominal ultrasound to assess the liver for size, blood pathways, masses, etc. All fairly routine exams. I also have dealt with the VA testing process and they will drain you of a pint! But they do a thorough job of evaluation. RA testing is not generally performed.

Here is some info that describes it. There are many sources of information on the various tests performed. This is one of many. 

http://i-base.info/guides/hepc/monitoring

I am curious to know if people are tested for RA prior to beginning Harvoni. And, what other tests do they run first? My primary care had me tested for RA as part of a battery when I first went to her. I do not have RA, or any other autoimmune disease. I am a veteran and because the VA has stated that they will treat everyone and anyone with HCV, I signed up for my health benefits. My first appointment it tomorrow. So, if I were to decide to get treatment, I will know going into it that I do not have RA. And, if I end up with these terrible pains that people are talking about (on other forums, too), then I will not believe that I already had RA, if they were to tell me this. Anyway, if you can share what they test for prior to treatment, I would appreciate it. I will find out soon enough for myself, but it's also possible that it varies from doctor to doctor.

Hi 4L,

Don't sweat the B12 shot and vitamins. I know how you hate all that stuff, but they will help. I haven't had those levels tested for quite awhile, so I'll mention that next time I get to see a doctor. Low B12 can really leave some people fatigued. Since you're sensitive to medications anyway, I bet you'll be one of those people that really benefits from it. It will be an easy resolution to some of your complaints if they turn out to be a vitamin deficiency. Do whatever you have to to get past this and I'm going to be positive for you! You have accomplished a lot this past year, don't let this slow you down! Get that B12 out of the way and start the Vit D. Don't forget to drink your milk and get some extra sunshine, that'll boost your D level as well!

You battled your Dragon and won, you can do this too! Stay tough ...

Thanks for the links Tig.  I am in terror at the thought of getting any shots or taking even vitamins!  I feel gun shy about any medications right now and need help getting through this.  I did better all summer and then things just unraveled health wise.  Started feeling really funky and tired again.  Aching so badly etc. 

Found out today that I am extremely low on B12 and D.  Never had a problem with either and never got tested during the past year on that to know.  Suppose to get B12 shots next week.  Anyone have them before?  Should I be worried. Oh hell I am already freaking out....!  And the doctor prescribed Vit D of 50,000 once a week.  Already decided I can't just take that amount at once without easing in.  Funny saw that ringing in your ears can come from very low B12.  Wonder if those that are suffering from that shouldn't get that blood work done?  I decided I never should have seen the specialist!  Nothing is going right since that can of worms opened.

In my quest to find more information on this association, I've found a few links that have information on the subject. Some are dated as far back as 2001, but the association between HCV and RA exists, as does it's association with arthritis. These don't provide answers but explanations for some of the questions. Not knowing why things are happening are sometimes more aggravating than dealing with the problem itself. I'll keep my eyes open for more discussions on the subject and will pass that on as I find it.

Rheumatoid Arthritis and Hepatitis C

Hepatitis C: Joint Pain and Related Problems

Treatment of RA and HCV

I still have hand pain, but it's lessened and my foot pain was very real during treatment as I remember limping when I first got up in the morning, so harvoni definitely causes this. Too many of us with these symptoms for it not to be a trigger at least.

Hopefully you will improve as your liver improves.  Is there any indication that SVR can improve RA symptoms?

Thanks all.  Neurology was my next stop but she wants me to wait till she diagnoses me first.  Often besides the foot and hand pain I have nerve involvement.  But inflammation can cause nerve compression so getting more answers next week will help me figure it out.  I am thinking that Harvoni sped things up that were already happening due to the virus for 40 years.  Enough is out there to read that there is a strong link between inflammatory arthritis and Chronic Hep C.   I might sound crazy but after reading about the treatments out there for RA I am not wanting to treat right now!  I do not want all those side effects.  I am done with medications!

Hi 4L, sorry to hear you're still having the pain in feet and hands.   I too have been experiencing this (also in knees).  Went to a rheumatologist, he prescribed Lyrica in higher dosage for the neuropathy symptoms.  This seemed to help a bit but also increased the brain fog, so with Dr. consent quit taking this.  On Mobic now for the arthritis,  but really dislike taking any meds. 

The doc's really seem to have a hard time diagnosing the cause and finding something to help with these symptoms? Did the virus cause this? The cirrhosis, the tx, or is it aging?  My issues/symptoms did escalate on tx, so I suspect there is some correlation.  I have an appointment with a neurologist in March, perhaps he can correctly diagnose and give some help. 

Hope you get feeling better.  If you find something that helps, please share, I'll do the same.   Thanks

Hey 4L

Nice to hear from your again, thanks for keeping the forum in the loop. it's still early in the game in analyzing the after effects of "Harvoni" all that you can relate will be important in understanding the possible long term effects. Each of us have unique bodies that can and does respond differently to Meds. So you are not an unusual circumstance.

matt

Hi 4L,

It's great to see you again! I'm sorry to hear about the continued trouble with your feet and hands. I remember the complaints you had during treatment. We've been trying to collect some information on the incidence of post Harvoni side effects, so hopefully we can learn more from that. There are others that have complained of the feet and hand pain. I'm glad you're getting further testing done to find out what's going on.

I hope you let us know what you find out after your ultrasound and blood work next week. I'm glad you checked in. 

Hi all since I haven't found much improvement in my hands and feet hurting since treatment I finally went to the Rheumy doctor.  I had x rays of both hands and feet and lots of blood work done.  Blood work was normal but the xrays are showing what they feel is inflammatory joints in my left foot, which is the one with the most pain, and in some joints in both hands.  Even though my RA blood work was normal they are sending me for a special ultrasound next week to confirm if it's RA.  She said 20% of people have normal blood work.  Even though I didn't have this pain till I was 2-3 weeks into treatment she doesn't think it is related to it.  She said that it would take way longer to have the joints in this condition.  Strange.... I didn't have a problem till treatment.  Did that move things along quicker?  No clue what is going on now.  Just hate seeing doctors.  If you look, you will find!  Praying they are wrong and it's going to be okay.  Treatment is tricky she said if I have it because of everything being so liver toxic.