Author Topic: B12 & Iron injections post-ribavirin (Read 26670 times)

KimInTheForest · « **on:** September 02, 2015, 03:36:17 pm »

My B12 and blood iron (ferritin) levels are both quite low 5 weeks after my Harvoni+Riba treatment. My GP is recommending I get an injection of each, which I am scheduled to do next week. Just wondering if anybody else has had either or both of these shots before, and what your experience was?

My hemoglobin and red blood cells fell pretty low during treatment due to the ribavirin:
Hgb=95 (normal=120-150) g/L
RBC=3.1 (normal=3.8-4.8 ) tera/L

And even now, 5 weeks after treatment, they have not climbed back up much:
Hgb=103 g/L
RBC=3.5 tera/L

The fever and mystery illness that had me in bed post-tx has lifted and my appetitie has finally returned (YAY!). But I still have a lot of fatigue. I would like to bootstrap myself out of this anemia situation faster than my body seems to be doing on its own. My GP's advice is an injection of B12 and of iron.

My current B12 level is 225 (normal=150-650)
My ferritin is 29 (normal=15-180, but anything between 15-50 is "Probable Iron Deficiency")

Anybody had either of these injections? I have been reading about weird side effects from B12 injection, like feeling swollen all over or having racing heart. Don't want to leap out of frying pan and into fire here…

kim

Patience · « **Reply #1 on:** September 02, 2015, 07:58:49 pm »

I give myself injections of B12 every 28 days. Never had anything but positive reactions from them. They help me with fatigue and I can usually tell when it's time for the next shot. My doc said that as we age, we don't make use of b12 as well, and the injectable kind works better than pills. The stuff is pretty inexpensive and, for me, really does some good. Hope it will work for you too!

KimInTheForest · « **Reply #2 on:** September 02, 2015, 08:40:33 pm »

Quote from: Patience on September 02, 2015, 07:58:49 pm

I give myself injections of B12 every 28 days. Never had anything but positive reactions from them. They help me with fatigue and I can usually tell when it's time for the next shot. My doc said that as we age, we don't make use of b12 as well, and the injectable kind works better than pills. The stuff is pretty inexpensive and, for me, really does some good. Hope it will work for you too!

Thanks Patience!

kim

Tess1971 · « **Reply #3 on:** September 03, 2015, 05:22:16 pm »

Your numbers confuse me as in my blood work HGB=12.7 (normal 12.0-16.0 GM/DL)
Only numbers I show in your range is for PLT + 265 which is platelets. Is yours a total hemoglobin rather than a breakdown which I have titles as CBC with PLT and CBC W/O DIFF and the HGB is in the listing.

KimInTheForest · « **Reply #4 on:** September 03, 2015, 07:16:06 pm »

Quote from: Tess1971 on September 03, 2015, 05:22:16 pm

Your numbers confuse me as in my blood work HGB=12.7 (normal 12.0-16.0 GM/DL)
Only numbers I show in your range is for PLT + 265 which is platelets. Is yours a total hemoglobin rather than a breakdown which I have titles as CBC with PLT and CBC W/O DIFF and the HGB is in the listing.

Hi Tess. Sorry. I should have put the units in. My hemoglobin numbers are in grams/litre. Yours are in grams/decilitre. So my hemoglobin at lowest was 95 g/L, which is 9.5 g/dL. And the reference range (i.e., "normal" range) for hemoglobin in those units is 120-150 g/L at my lab, which is 12-15 g/dL.

I used to make that distinction on the units (giving both versions) every time I posted. But it seemed to be confusing people, so I stopped. haha! that'll teach me! I went back to my original message and added some units for clarity.

kim

Tess1971 · « **Reply #5 on:** September 03, 2015, 07:45:34 pm »

Oh, okay, well that blood work I had was done at 14 weeks post and still was not as high as it was prior which was 14.1…………They will do all that blood work again (4 pages of it) at the 1 years follow-up. All other blood work like liver, kidney, VL and basic potassium etc was good at 32 weeks, so we will see.
My concern is that my age will make healing take longer…haha

KimInTheForest · « **Reply #6 on:** September 03, 2015, 07:56:51 pm »

My hemoglobin at start of treatment was 119 g/L (or 11.9 g/dL).
My red blood cells at start were 3.9 TI/L.

So I was at or slightly below the bottom end of the "normal" range before I started treatment. Nowhere to go but further below normal. If I had it to do over, I would get my Hgb and RBCs checked 4 weeks prior to starting any treatment with ribavirin. And if they were that low, I would do everything I could with B12 shots, iron shots, whatever, to get those numbers up into the HIGH end of the normal range before starting treatment. I think things would have worked out much better for me in terms of side effects and post-tx problems if I had done that.

Hindsight is always 20/20. Haha!

And I seem to be CURED, which is the important thing. (Won't know for sure til late October.)

best,
kim

Tess1971 · « **Reply #7 on:** September 03, 2015, 09:27:05 pm »

Maybe I should start taking B12 since I do not eat a lot of meat. I do not thing it was ever checked. Is is listed as B12 on blood work?

KimInTheForest · « **Reply #8 on:** September 03, 2015, 09:44:07 pm »

Quote from: Tess1971 on September 03, 2015, 09:27:05 pm

Maybe I should start taking B12 since I do not eat a lot of meat. I do not thing it was ever checked. Is is listed as B12 on blood work?

Hi Tess. I think it is a special request your doctor writes in on the main form that shows all the usual tests. It isn't listed directly on the form. At least that is the way it worked for me here in Canada. My doctor offered to give me a b12 shot right in her office without the lab work. She was pretty sure I would need it. She was right, but I am so cautious I wanted to see my lab results first. So now I am going back in next week for the shot. And iron too if she wants to give it to me. I am low on both. I have read that taking b12 (methylcobalamin) orally/sublingually as pills is just as effective as injections but will take longer to get your levels back up. I have been living with the effects of this ribavirin induced anemia for more than 3 months and I just want it to end. So I am going for the injection.

If you ask your dotor for a b12 test, it wouldn't hurt to ask for a ferritin (iron) test at the same time. I was low on both, and that is slowing my hemoglobin and red blood cells from returning to normal.

good luck!
kim

Tess1971 · « **Reply #9 on:** September 05, 2015, 03:22:05 pm »

Thanks for the info. Seems the vitamin I take does have 25 mcg of B12 so I am getting some other than food sources.
I do the Weil Vitamin Advisor to see what vitamins I can take based on my health, age etc and then check off the ones I want. It works out great for me. Been into Dr Weil since the 60s and like his approach.

KimInTheForest · « **Reply #10 on:** September 05, 2015, 04:18:28 pm »

Quote from: Tess1971 on September 05, 2015, 03:22:05 pm

Thanks for the info. Seems the vitamin I take does have 25 mcg of B12 so I am getting some other than food sources.
I do the Weil Vitamin Advisor to see what vitamins I can take based on my health, age etc and then check off the ones I want. It works out great for me. Been into Dr Weil since the 60s and like his approach.

I will check that out - the Weil Vitamin Advisor. Thatnks.

I too like Dr. Weil's approach.

From what I have read, 25 mcg of B12 in a powdered form within some other vitamin (like a B-complex) that you swallow is pretty much unabsorbable by the body. It needs to be taken as a sublingual tablet that goes directly into blood stream as it slowly dissolves beneath tongue, or as an injection. At least that is what I have read. But the other B vitamins can be absorbed by a tablet through the gut.

kim

Tess1971 · « **Reply #11 on:** September 05, 2015, 08:39:46 pm »

His vitamins are highly absorbed, all from food sources etc and NO, I repeat NO mega doses of anything, only balanced. I take his multi w/o iron that suits me, his vitamin c complex which is not like any other I have seen anywhere and his chelated amino acid magnesium which is only 200 mg…..I pay less than $40 for all that with shipping. I tweak every now and then, may add something in my recommended plan list or take one out, but, these are working well for me and SUPER easy on the tummy, not like things I have used in the past.
I have used one of his herbs and probably will again also.

KimInTheForest · « **Reply #12 on:** September 05, 2015, 09:38:51 pm »

Thanks for the info on Dr. Weil's vitamins, Tess. I am going to look into that!

Best,
kim

GLCII · « **Reply #13 on:** September 06, 2015, 11:54:16 am »

Hi Kim

I've been doing the B-12 since I started the treatment, along with B Complex, D & E. I know alot of B's but the body expels what it don't use. I think. It seemed to help with the sides some what and deffinitly helped after the treatment was over. I still take them. I think you should go for it. Get the shot and then, maybe stick with the pills or liquid after that. As I said, I think it helped me not feel so run down after the treatment.

There's a Sublingual liquid B-12 made by Natures Bounty that I used. It's about $12.00 for a 2oz bottle and is equal to 59 doses that you put under the tongue.

Good Luck

KimInTheForest · « **Reply #14 on:** September 06, 2015, 12:09:54 pm »

Thanks GLCII.

It sounds like B-12 really does make a difference. Last week I started a sublingual B-12, along with B-complex, liquid D3, C, and iron. (I was low on iron too.) I plan to go to Dr. in 2 days for a B-12 shot. Thanks for the encouragement on that! Sounds like B-12 is making a difference for a lot of people.

I will be interested to see if my hemoglobin and red blood cells manage to get their butts back into the normal range by the time I go for next blood work Oct. 1. I will be 9 weeks post-tx by them and would like my Hgb and RBCs back.

kim

GLCII · « **Reply #15 on:** September 06, 2015, 01:17:20 pm »

No problem. I hope it works well for you.

My RBC stayed between 4.73 & 5.12 while my hemoglobin stayed between 14.5 & 15.4, while on the Harvoni. But I didn't do the ribavirin which I would assume is the culprit in your case.

The last time I did the Inter/Riba the doc ended up putting me on Procrit for the hemo being in the 9.0 range. It made a differnce!!!

KimInTheForest · « **Reply #16 on:** September 06, 2015, 01:26:43 pm »

Quote from: GLCII on September 06, 2015, 01:17:20 pm

The last time I did the Inter/Riba the doc ended up putting me on Procrit for the hemo being in the 9.0 range. It made a differnce!!!

My hemoglobin was between 9.0 and 10.0 for most of my 12 weeks on Harvoni+Riba. Five weeks post-tx, it had only climbed up to 10.3 - still well below normal. I am not keen to get a Procrit shot. Some risks there. Would rather resolve it with iron and B-12 now that I know I am low in both of those. We shall see how that goes. I will keep everyone posted.

best,
kim

dearprudence · « **Reply #17 on:** September 06, 2015, 06:17:39 pm »

Hi Kim -
Good to see you are feeling better. My GP has given me shots of B12 in the past - no bad reactions.
I take B12 and D daily. Was always told to stay away from iron because it's not good for the liver - is this true?
Best to you - Prudence

KimInTheForest · « **Reply #18 on:** September 06, 2015, 06:58:26 pm »

Quote from: dearprudence on September 06, 2015, 06:17:39 pm

Hi Kim -
Good to see you are feeling better. My GP has given me shots of B12 in the past - no bad reactions.
I take B12 and D daily. Was always told to stay away from iron because it's not good for the liver - is this true?

Hi Prudence. I have always heard the same thing about iron - stay away, bad for liver, etc. And I was especially told to stay away from it during the riba-anemia, because that anemia is not caused by iron deficiency but by oxidative stress on cell wall of red blood cells. Nevertheless… a person can become iron deficient for all kinds of reasons. And apparently I was/am, judging by my recent blood test for that. In fact, I probably started treatment iron deficient. My RBCs and hemoglobin were essentially sub-normal on Day 1.

I think if you know from blood tests that you are iron deficient, and you also have anemia that is not recovering quickly, it's a good idea to take iron. But it's true, I would not take iron supplements without knowing for sure I was deficient.

I think I may have gone overboard all these years on the whole Fear Factor thing about not getting too much iron with Hep C. I was basically vegetarian prior to treatment, and I was probably mildly iron deficient for many years, recently exacerbated during treatment by the riba-anemia.

Interestingly, although I had major appetite suppression during treatment (hence my malnutrition), I became ravenous for meat and was eating it daily. Still am. Body seems to want it right now...

kim

dearprudence · « **Reply #19 on:** September 07, 2015, 07:01:05 am »

Hi KIM, very interesting information. I too am vegetarian and am waiting to see how the anemia is going. The difference being with my vpak I was hungry all the time. My appetite has stabilized now and I have lost the excess weight. Please keep us posted on your journey.
All the best, Prudence

KimInTheForest · « **Reply #20 on:** September 08, 2015, 01:10:17 pm »

Just back from my first-ever B-12 injection at my doctor's office. All I feel so far is a sore shoulder. No burst of uncontrollable housecleaning energy yet. But I suppose I should give it more than 10 minutes to take effect, eh. I am born Year of the Horse. And we Horse people are impatient.

My doctor thought it was a good idea for me to continue with my daily oral supplements of iron (25mg), B-12 (1,000 mcg) and liquid D-3 (1000-2000 IU). I am also taking a B-complex and C.

I will keep checking my hemoglobin, red blood cells and ferritin monthly until everything looks good.

best to all,
kim

terih · « **Reply #21 on:** September 08, 2015, 04:50:42 pm »

Well darn it, Kim! I thought sure you would be knee deep in soap suds by now!

Bree · « **Reply #22 on:** September 08, 2015, 04:53:53 pm »

Hey Kim, even when I am peak energy, I don't have sudden energy bursts for house-cleaning which is why I'm on the forum right now;)

KimInTheForest · « **Reply #23 on:** September 08, 2015, 04:54:07 pm »

Quote from: terih on September 08, 2015, 04:50:42 pm

Well darn it, Kim! I thought sure you would be knee deep in soap suds by now!

Actually, I became very sleepy and went to bed at noon after my B-12 shot. It seems to be having a reverse effect on me… But I'm sure it will help in long run.

kim

GLCII · « **Reply #24 on:** September 08, 2015, 05:48:56 pm »

Hi Kim

If you get that sudden burst of that housekeeping energy, let me, I could use some myself.

I don't think the B-12 will overwhelm you with tons of energy but I think it will help level you out so you don't feel so blazay.

Edit: My wife buys vitamin C in a box of 1000mg packets called Emergen C that you mix with water that I take every now & then. She really likes it. So do I when I take it.

Patience · « **Reply #25 on:** September 08, 2015, 08:08:34 pm »

If I get an urge to clean house, I've learned to lie down until it passes.

terih · « **Reply #26 on:** September 08, 2015, 08:24:20 pm »

Patience, me too!! hahaha!!

Kim, sorry it knocked you out, maybe you needed the sleep?

slats1056 · « **Reply #27 on:** September 08, 2015, 11:41:42 pm »

You guys are too much, I love the sense of Humor in the face of adversity. Keep it up, a good laugh is always needed!!!!

KimInTheForest · « **Reply #28 on:** September 10, 2015, 12:36:54 pm »

It has been 48 hours since I took my first ever B-12 injection. And I have felt much worse every minute since taking it, than at any time for the week prior. I have bad headaches, nausea, diarrhea, appetite suppression again (like when I was on treatment), muscle weakness, and tremendous fatigue, worsened insomnia and just a sick blah feeling all the time. None of this was the case right before my B-12 inject. I had pulled myself out of all that with oral supplements.

I even had itchy feeling inside ears as well as sore throat last night. Yes, this could all be some unrelated problem that coincidently developed within minutes of the injection. But I don't think so. I have just been googling "why do I feel bad after my B-12 shot?" Quite a lot of people have this reaction to B-12 injections. I had not read this stuff before, so this isn't a case of me inducing these symptoms in myself through power of suggestion.

The causes for people feeling bad after b-12 shot can be anything from allergy/sensitivity to cobalt, to the stabilizers and preservatives that are in any injection, to the fact that the body perceives an injection as a foreign invasion and so the immune system goes on high alert.

For the week prior to the B-12 injection (after finding out from lab work I was low in iron and B-12), I had been giving myself daily oral supplements of iron, B-12, B-complex, C and Vitamin D… and feeling great! I was getting noticeably better each day, putting weight back on, eating normally, resuming my creative work, returning to my old self. If I had just stuck with that, I would have been on my way. Now I need to recover from my B-12 shot just to get my health back to where it was before I took it.

I won't be taking more B-12 injections. But I will resume my daily oral supplements once I recover from the B-12 injection. Haha!

I am a little hesitant to be chucking pills down me right now when I am having problems with nausea and appetite suppression from the B-12.

I know B-12 injections are a benefit to a lot of people. But for some people they aren't the right way to go. Everything I have read says that sublingual B-12 tablets are just as effective as injections, but may take a little longer to get your levels back up.

cheers,
kim

Patience · « **Reply #29 on:** September 10, 2015, 12:55:23 pm »

Wow! I've never heard of a reaction like that! I've only ever had good experiences with B12 injections and some of my friends take it too and swear by it. I was so hoping it would be the solution for you, but it looks like it's the problem now. The stuff is SUPPOSED to be helping, not hurting! I was told it couldn't hurt, but it might help and it did, for me at least. Usually, I'm not the lucky one who gets no SE's, but in this case, I won evidently. My daughter had a similar reaction to yours to a flu shot one year - and she had been taking them for years.

Here's hoping your recovery is quick. What a bummer for you when you get just the opposite of what you expect! So sorry it didn't work.

P.s. Try ice cream - it cures a lot of stuff!

KimInTheForest · « **Reply #30 on:** September 10, 2015, 01:13:26 pm »

I suspect most people who need B-12 are helped by the injections, Patience. But judging by my google search, there are quite a few people who have problems with the shots (but not with the oral supplements). I don't know which type of B-12 was in the injection: cyano-, methly-, or hydroxylcobalamin. And that can make a difference. My B-12 tablets are methylcobalamin, and they were not causing me any problem.

best,
kim

terih · « **Reply #31 on:** September 10, 2015, 07:48:00 pm »

Wow, Kim! I'm sorry for your reaction! I wonder if some benadryl (how the heck do you spell that?!) would help, since it might be an allergic reaction. I've never heard of all this before, so thank you for bringing it to the forefront! Sorry I recommended it to you! I'm one of those that has all of the bad side effects of drugs also and have never reacted like that, so I thought you would be safe, again, my apologies! Teri

KimInTheForest · « **Reply #32 on:** September 10, 2015, 09:08:26 pm »

Quote from: terih on September 10, 2015, 07:48:00 pm

Wow, Kim! I'm sorry for your reaction! I wonder if some benadryl (how the heck do you spell that?!) would help, since it might be an allergic reaction. I've never heard of all this before, so thank you for bringing it to the forefront! Sorry I recommended it to you! I'm one of those that has all of the bad side effects of drugs also and have never reacted like that, so I thought you would be safe, again, my apologies! Teri

No worries, Teri. Many people recommended the B-12 injection to me, including my own GP. Now that I am reading up on this more, I don't think it is an allergic reaction I am having. Apparently B-12 injections on a body not accustomed to it can cause a rapid drop in potassium, which will in turn produce all of the symptoms I have been experiencing for last 3 days, since having the shot Tuesday morning: weakness, nausea, abdominal cramping, mild diarrhea, fatigue, feeling flu-like, needing to stay in bed, etc.

Apparently the theory can be easily tested: take 500 mg of potassium, and if your problems are due to low potassium, you'll feel noticeably better in 30 minutes. Just a few minutes ago, I took 300 mg of potassium (being a little leery of popping potassium). And I could only find time-release potassium. So I don't know if the result will be as decisive. But if I feel better this evening, I'll pop another 2-3. I don't plan to do that for long, and maybe not at all after today. But this problem of people being slayed by a B-12 shot due to sudden drop in potassium is actually discussed quite a bit online.

http://forums.phoenixrising.me/index.php?threads/b-12-induced-potassium-depletion.11180/

My potassium has been in low end of normal range since before starting tx in May. And it still is as of 2 weeks ago. The so-called "normal range" for potassium is 3.4-5.4 mmol/L. But my own GP, plus many people online, say that most people don't feel well if their potassium falls below 4.0 or even 4.3. And I have been below that the whole time, hovering between 3.4-3.7 . So this B-12 shot probably drove it lower… That's my current working theory. We shall see!

best,
kim

KimInTheForest · « **Reply #33 on:** September 11, 2015, 11:55:38 am »

I am revising my theory a bit about cause of my seemingly "bad reaction" to my first-ever B-12 injection. I am revisiting my original theory back in early August about why I became so ill immediately post-tx. (Treatment itself had been fairly easy and I was not sick during tx.) I thought then the post-tx problems I was experiencing were auto-immune in nature, resulting from a temporarily over-active immune system.

After years of the immune system having a full-time job chasing the HCV virus around 24/7, and then getting prodded even more during treatment to get in there and help out, all of a sudden the immune system is unemployed but still ready to go gangbusters on anything it can find. What's the only thing left to attack and defend against via inflammatory responses? The body's own tissues and organs - until the immune system settles down and finds its new balance point.

I am not the only forum member who has voiced this theory. There have been other threads on it. And just yesterday a new member started a thread on "Post Harvoni and auto-immune issues:

http://forums.hepmag.com/index.php?topic=3302

In his case, his Gastro on Boston who treated him with Harvoni and is now trying to address his post-tx problems said they are seeing people who are having issues with auto-immune problems after Harvoni treatment.

As for what connection this theory has to my mystery malaise and fever that returned immediately after my B-12 shot on Sep 8 (I was in bed all day again yesterday and had a 102 fever at night), this is what I think happened: One of the reasons some people get "sick" after a B-12 shot is because the shot itself (any shot) is perceived as a foreign invasion and triggers the immune system to react with its usual arsenal, whether that is needed or not. I think my immune system had finally started to settle down and so my malaise and fever lifted… but the B-12 shot set it off again.

That's my current working theory. Evolving every day…

kim

Patience · « **Reply #34 on:** September 11, 2015, 05:31:09 pm »

Makes sense to me. So I guess that people who are not reacting are doing so because the b12 is not perceived as a threat since their systems have already acclimated to it. If that's the case, I wonder if smaller doses given over a longer period of time would have helped? Not that you would want to try that now after all the trouble you've had! (Just a curious kind of thought.)

At any rate, I hope you start feeling better very soon!

KimInTheForest · « **Reply #35 on:** September 11, 2015, 06:48:05 pm »

Quote from: Patience on September 11, 2015, 05:31:09 pm

Makes sense to me. So I guess that people who are not reacting are doing so because the b12 is not perceived as a threat since their systems have already acclimated to it. If that's the case, I wonder if smaller doses given over a longer period of time would have helped? Not that you would want to try that now after all the trouble you've had! (Just a curious kind of thought.)

At any rate, I hope you start feeling better very soon!

Thanks Patience. I hope so too.

Yes, I do think acclimation is factor. I may at some point (not now) resume the sublingual B-12 tablets. I don't plan to do more injections. For now, I am just going to try to see if my body will sort itself out on its own if I quit interfering. haha!

kim

terih · « **Reply #36 on:** September 12, 2015, 02:02:53 pm »

Wow, Kim the more I read back to how you reacted to the shot, the more I think your new theory is right! The reason I say this is because, in 1989 I ingested a natural product that was contaminated by the company who made it and I had much the same symptoms as you are having!

I'm not allowed to say which product it was, but think helps you sleep and calms you down, is in turkey naturally and can be had in any health food store! How's that for cryptic!

Any way, I had many of your symptoms and a whole slew more! Was diagnosed with an autoimmune disease from all of this and now that I think back, my end of treatment was a lot like yours. I had just assumed it kicked my prior condition back into gear, since it has come and gone over the years! I had to be on anti rejection drugs for about 3 years for the 1989 debacle. The point to me posting all of this is, that if you got it all calmed down with supplements then you should be able to do that again, hopefully! I'm hoping you feel better soon! And if it persists, see a rheumatologist, that is the only kind of Doc who provided any help in '89!

Sorry if this is a rambling mess, but I have a tough time dredging up those memories! Teri

KimInTheForest · « **Reply #37 on:** September 12, 2015, 09:33:45 pm »

Wow - that's amazing Teri! I think you're on to something. There are quite a few members here describing basically the same thing post-treatment: disabling symptoms that appear to be autoimmune in nature. There is a whole thread going on rheumatoid arthritis post-harvoni, including some people who have never had RA before. And now Bob's gastro in Boston is saying they are seeing a pattern of auto-immmune problems in their post-Harvoni patients.

What exactly is a rheumatologist? do they special in autoimmune stuff?

(p.s., I guessed your natural supplement

)

best,
kim

terih · « **Reply #38 on:** September 13, 2015, 11:46:35 am »

I had faith in your guessing abilities!

I had to turn to Google for your answer, since all I knew was that, he was one of two Doctors who didn't make me feel like I was only a woman in need of a sedative! Most of them pretty much told me nothing was wrong and sent me on my way........

Anyway a rheumatologist takes care of joints, bones, muscles and the whole immune system! So pretty much whole body care! Maybe your Doc can recommend one! Teri

Patience · « **Reply #39 on:** September 13, 2015, 12:14:11 pm »

Teri,

Are you trying to trip up your fans with those clues?

terih · « **Reply #40 on:** September 13, 2015, 01:03:02 pm »

Patience! Thanks so much for always making me giggle! You are awesome! I hope you are having a great day! Teri

lporterrn · « **Reply #41 on:** September 13, 2015, 06:43:08 pm »

Hi Kim,
I did a quick read of this thread, and hope I didn't miss something. What is baffling to me is that your RBCs and Hgb were already low prior to treatment. I can't recall if you have cirrhosis or not, but if not, then I am wondering if you have an unrelated problem. For instance, low B12 is very common, and could explain this. Using ribavirin when you already were low must have been quite tricky - I am surprised you didn't end up in much worse condition. Also, has anyone done an occult fecal test or suggested a colonoscopy?

In short, it may be that Harvoni added to the problem but didn't cause it.

KimInTheForest · « **Reply #42 on:** September 13, 2015, 08:21:02 pm »

Thanks for the suggestions, Lucinda!

No, I am not cirrhotic. Was F2 on my Fibroscan prior to starting treatment (will add that to my sig right now).

Yes, I was worried about starting 12 weeks of riba when my Hgb and RBCs were already in the basement (Hgb was 119 g/L; RBcs were 3.9 TI/L on Day 1). But it was the only chance I had in this province for an all-oral cure (unless I was willing to try INF first, which I was not).

And since it was a trial, could could not delay the start date to get those numbers up. I had been vegetarian for many years prior to treatment (although I started eating meat during treatment, whenever I could eat - I had lots of appetite suppression during tx, lost 10 lbs, so I think got further deficient in vitamins and minerals).

Did have an occult fecal test in last year. Everything normal there. No one has ever suggested colonoscopy. I think long-term veg diet, age (60-yr-old female) and perhaps HCV itself? are more likely the cause for low'ish B12 and quite low iron. But I will keep an open mind!

Thanks as always for your advice Lucinda,
kim

lporterrn · « **Reply #43 on:** September 14, 2015, 01:34:06 pm »

That is a reasonable explanation, but plenty of vegetarians have normal iron and B12. (Unless you are vegan - that is a different situation). And without cirrhosis, no reason to think hep C has a hand in this.

Do you know about how B12 sometimes gets lower with aging? It has to do with our digestive system and the fact that B12 absorption relies on intrinsic factors. https://en.wikipedia.org/wiki/Intrinsic_factor

The fact that you have not really come back suggests to me that there was an independent, underlying problem in the beginning, that has continued and may been to be addressed. Sounds like you and your doc are working it out.

KimInTheForest · « **Reply #44 on:** September 14, 2015, 04:22:50 pm »

Quote from: lporterrn on September 14, 2015, 01:34:06 pm

That is a reasonable explanation, but plenty of vegetarians have normal iron and B12. (Unless you are vegan - that is a different situation). And without cirrhosis, no reason to think hep C has a hand in this.

Do you know about how B12 sometimes gets lower with aging? It has to do with our digestive system and the fact that B12 absorption relies on intrinsic factors. https://en.wikipedia.org/wiki/Intrinsic_factor

The fact that you have not really come back suggests to me that there was an independent, underlying problem in the beginning, that has continued and may been to be addressed. Sounds like you and your doc are working it out.

Thanks again, Lucinda!

I will be going in for another visit to my doctor soon.

My main concern now is the post-treatment malaise I have had for the last 7 weeks (since ending tx Aug 25), which has left me feverish, housebound and even bedridden much of that time. I wasn't sick before treatment, and I wasn't feverish or bedridden with fatigue and strange malaise a single day during treatment (although the riba-anemia had me operating at half-mast for last 4 weeks of tx). Every day post-tx has been worse than any day on treatment (which I actually did not find too difficult).

A number of members here are reporting being stricken with auto-immune problems post-tx - some of them to a very disabling degree. One member's gastro in Boston told him they are starting to see auto-immune problems in people post-Harvoni. From the beginning of my 7-week post-tx malaise, I felt this may be auto-immune. It is not following the pattern of any familiar infection that might be taking advantage of my body in its depleted condition post-tx - it's not a flu, or cold. I was tested for mono and UTI - both negative. I have no sore throat, no nasal congestion, no sign or feeling of oral infection. I am open to suggestions of anything I could ask my GP to check for.

I got much better for 10 days. Normal even - full appetite returned, I could go about my business. And then I went back into my doctor for a B12 shot a week ago. Two hours later I was back in bed with fever, fatigue, a feeling of great malaise. Today is the first day I was able to make a short trip to grocery store. I think this reaction to the B-12 shot could be explained by the auto-immune theory… Immune system had been left hyperactive after tx for whatever reason, it had finally started to settle down, find its new normal in a body free of HCV, and then the B12 injection kickstarted it again. Anyway - it's a theory. This post has gotten pretty long. Best I quit rambling in my feverish woozy condition.

kim

KimInTheForest · « **Reply #45 on:** September 15, 2015, 01:42:58 pm »

My rambling posts of late are a bit of a sign of my disoriented brain. Am working on focusing on the positive instead, on nature, life, healthy, beauty, joy, eating as best as I can. I made a beef stew last night and ate a decent-sized bowl.

Peace & joy to all,
kim

terih · « **Reply #46 on:** September 15, 2015, 02:07:19 pm »

I'm so happy to hear you were able to eat something, Kim! Maybe the funky-ness that the shot caused is lifting!

And for your information, I could understand every word of your posts! (not sure what that says about my brain!

)

Peace and many blessings from the universe right back to you! Teri

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