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Hep C Discussion Forum -> On Treatment -> How low is too low? Hemoglobin I mean?
Post Info TOPIC: How low is too low? Hemoglobin I mean?
Observer


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RE: How low is too low? Hemoglobin I mean?
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Thank you for letting me know about your practices and confirming that it helped you with treatment. 

I'm feeling so relieved that the low hb is just part of the process with riba.  It really has helped seeing how low is ...ok (or at least do-able) from others in the forum.
I only have 2 more months and will breeze through with a smile on my face.

I'm going to save my dog walks for night time until the rains come and continue to do my Qi Gong everyday.

:)
Alison



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61 y/o, Infected via transfusion Oct'83, GT-1a, F-4 cirrhotic,
tx Holkira pak/moderiba 12 weeks

4 years.... successful dragon slayer 
Scruffy


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Alison

I practiced Tai Chi ( yang short form) twice every day through most of my treatment. My hb hit 7.2 at one point and stayed about 8.4. I swear the Tai Chi practice helped me make it through the 48 week treatment. Keep up with the Qi Gong good for your breathing and will help keep the riba rage away. Fast forward 1 year post TX I practice the long form ( Yang Ban Hou's ) twice every morning and Qi Gong on the week ends.

Best for you.



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Geno 1a null responder 2004 inter/riba   finished incivek,peg/riba 48 weeks May 17th 2014. undetect weeks 4-12-32.  EOT+7 undetect. EOT+24 SVR!!!!! EOT+!YEAR SVR!!!!
Observer


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Thanks Gracie and mallani,

 

I have avoided iron rich foods since being dx with HCV.
I will continue to do so. 

I will continue to walk (hopefully the rains will start soon, I love the moodiness of the rains)
and I try to do Qi Gong (it's sort of like slow Tai Chi) every day.

I really do feel relieved to know that this is just part of the process of dragon slaying.

cheers,

Alison



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61 y/o, Infected via transfusion Oct'83, GT-1a, F-4 cirrhotic,
tx Holkira pak/moderiba 12 weeks

4 years.... successful dragon slayer 
mallani


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Hi Alison,

Just some thoughts gained from my experience and others.

The Riba rash is a nuisance. DON'T scratch, use mild soap and shampoo (baby shampoo is good) and don't use topical steroids or lotions. I had a brief shower every two days. Direct sun increases the redness and itchiness.

All patients should have their iron parameters and Vitamin D levels done before treatment. Ideally, iron should be in the lower end of the normal range and Vit. D should be well above the lower limit of normal. Iron deficiency does not add to the degree of haemolytic anaemia. Taking iron supplements and eating iron-rich foods should be avoided if your iron levels are high.

Patients with low HB (below 10) will be tired all the time. Make sure you get as much exercise as possible, as joint and muscles problems are worse after treatment if you just sit and vegetate (as I did).

Like you. I had red palms and numerous spider nevi. These have now gone.

Ribavirin dose reductions are probably not as significant using the new DAA's. Cheers.



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
Gracie


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I don't believe it does with our kind of low hemoglobin. Somebody else can explain why but I actually think extra iron is not good for your liver with hep c. Yours really isn't that low, and even with a reduction in RIBA, your chances are the same for SVR which is very very high!



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  1. Gracie

1A. Previously treated non responder Rebetron in 2000 And Incevik in 2014 with a breakthrough at week 12. Fibroscan 15.5. VL 6,000,000. Finished 24 weeks harvoni on Dec. 19, 2015. SVR. Latest Fibroscan 8.8.
Observer


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 good point, Scruffy, about the sun, I have noticed that the sun is not my friend these days
(except for getting good reflections in the shallow waters)
I'm just outside Vancouver BC, so it's not very strong or hot...
I cover up my arms (where the rash is the worst)
I like the lighting in the late afternoon and the crows expect me.

Gracie, can eating iron rich foods like pomegranate, spinach, seaweed ect make a difference while on this riba?

thanks, Alison



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61 y/o, Infected via transfusion Oct'83, GT-1a, F-4 cirrhotic,
tx Holkira pak/moderiba 12 weeks

4 years.... successful dragon slayer 
Gracie


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My riba went below 10 and I had to reduce. It's tough being tired all the time, and that rash is annoying for sure. It is a sign that it's working so that's awesome.

btw... This would not be your last kick at the can. They are coming up with new shorter acting treatments that work against pre treaters, Ravs etc. You shouldn't worry about that though, as clearly this so working But lots more in the pipeline!



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  1. Gracie

1A. Previously treated non responder Rebetron in 2000 And Incevik in 2014 with a breakthrough at week 12. Fibroscan 15.5. VL 6,000,000. Finished 24 weeks harvoni on Dec. 19, 2015. SVR. Latest Fibroscan 8.8.
Scruffy


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Alison

"It's sunny here again so I will take a slow, short walk at the beach to photograph my crow friends"

 

How hot is it where you are?? The heat and sun have been known to aggravate the riba rash be careful 



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Geno 1a null responder 2004 inter/riba   finished incivek,peg/riba 48 weeks May 17th 2014. undetect weeks 4-12-32.  EOT+7 undetect. EOT+24 SVR!!!!! EOT+!YEAR SVR!!!!
Observer


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Thank you for your answers, I feel much relief at knowing I don't have to panic at the hemoglobin #.
I am very determined to slay this dragon and can endure the fatigue for as long as possible.
I am cirrhotic and will probably only get one chance at treatment.

As much as the Drs and nurses are knowledgeable from a clinical point of view, I am grateful to be here and to talk with others who have actually experienced it.

I am so, so excited to have 'normal' AST and ALT.

I have had broken spidery marks on my upper chest and upper arms for over 15 years, that the Drs. have said were an indication of liver scarring, and they are almost all faded away!!!!
My liver is so happy!

I have the dreaded riba rash and I had a nasty mouth ulcer that wouldn't go away, but I tried some CBD cannabis oil on them last week and that has completely fixed the ulcer and has helped a lot with the rash.

Thanks again for your support
It's sunny here again so I will take a slow, short walk at the beach to photograph my crow friends

Alison

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61 y/o, Infected via transfusion Oct'83, GT-1a, F-4 cirrhotic,
tx Holkira pak/moderiba 12 weeks

4 years.... successful dragon slayer 
Scruffy


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Hi Allison

WOW your ast+alt look great. Your hb really isn't that low but it shows the riba is working. Just take it a little easyer than normal. Your body might get used to the low hb. 12 weeks isn't that long. My hb went a lot lower than that and I put up with it for 48 weeks thats old history now but it was worth it. Do what your doctor says in the end he has the last say.

Best wishes



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Geno 1a null responder 2004 inter/riba   finished incivek,peg/riba 48 weeks May 17th 2014. undetect weeks 4-12-32.  EOT+7 undetect. EOT+24 SVR!!!!! EOT+!YEAR SVR!!!!
wmlj1960


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Hi Allison,

Last year during 24 weeks Sovaldi / Riba my HGB dropped to 10 at 12 weeks and to 7.9 by EOT and I stayed on 1000mg Riba the whole 24 wks. I was weak but I still had energy to fight other health issues and win. If your son keeps healthy food coming, you stay well hydrated, and the dog doesn't want to play too hard then you should have some energy for arts and walks of a reasonable distance. Don't be too hard on yourself. Stay compliant with your med schedule and your on your way to joining the 'dragonslayers club'. Congrats on the low ALT/AST #'s. Keep up the good work. smile



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Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

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mallani


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Hi Alison,

My doc wanted his patients to drop to 9-10 to be sure Riba is doing it's job.

I actually dropped to 7.2 but stayed on the full 1,200mg/day for 48 weeks. His reasoning was that I'm cirrhotic and older, and would only get one crack at treatment.

His views are a bit extreme but I'm happy I suffered. Take his advice. Cheers.



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
Tig


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Hi Alison,

It sounds like the Ribavirin is doing its thing. The fatigue and anemia are sure signs that it's working its magic. Most people have varying degrees of anemia and as you're witnessing, a drop in Hemoglobin is part of it. Typically, most doctors will consider dropping your Ribavirin dose in stages beginning when the HGB drops to 10. While it's good to stay on the highest dose possible, it's an acceptable (and necessary) practice to reduce it so the body can adjust to the anemia and prevent a further reduction in HGB. Sometimes you will see an improvement that allows you to return to full dosage. 

It's not uncommon to have a dose reduction in this instance, so trust your doctor to do what's right. Just express your thoughts and concerns so s/he knows you're willing to wait until it's absolutely necessary. Good luck!



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Observer


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hey, so I have just finished week 4 of holkira pak and ribiviron. 

Alt and AST are the lowest they've been in 32 years YAY

15 and 18

but...hemoglobin has dropped below normal

Pre treatment-----145

week 2.         ---129...normal range 

week 4        ---115....normal being >120

 

I really want to stay on full does riba as long as I can, but I can't even walk upstairs without losing my breath and a 10 walk at the beach took me over 45 minutes yesterday because I had to rest so much.

I have a great husband who shops and helps with the main house chores and a lovely son who went to culinary school and who love to cook, so all I have to do is play with my dog and make art and kill a dragon...

at what # do I panic at? 

With my HCV I have always avoided iron but can certainly focus on eating some iron rich foods to counteract the riba...has anyone got any experience with this? Does it help?

Thanks,

 Alison

will have my VL #s tomorrow 

 

 

 



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61 y/o, Infected via transfusion Oct'83, GT-1a, F-4 cirrhotic,
tx Holkira pak/moderiba 12 weeks

4 years.... successful dragon slayer 
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