Last 4 weeks starting Saturday, HB dropped to 97

[Lucien777]

Hi guys. Had call yesterday that my haemoglobin has dropped to 97 or 9.7 (same thing) so another dose reduction of Ribavirin to four a day. Hoping that tablets will still be effective, as dose is getting reduced so much now. Also hoping that the reduction will stabilise my haemoglobin enough so I don't have to discontinue treatment. Just over 4 weeks left now. 🙏 Last dose reduction from six to five tablets, didn't make a difference and haemoglobin still dropped 😯 otherwise doing ok, just can't do anything at a pace without getting crushing chest pain and breathing like I'm a 100 lol. Told the nurse but she wasn't too concerned with that. Hope u r all doing good, lots of love 🙏☺️💖💖💖🍀🍀🍀

[-Janell]

Hi Lucien~ did they recommend or suggest increasing hemoglobin levels with diet?

Also, along with fatigue, iron-deficiency anemia can cause chest pains and shortness of breath.

[Lucien777 in reply to -Janell]

Thank you but nope they haven't, but I'm trying that anyway, they told me I can't take my iron supplements, I only had Hb at 12 to start with, so told them that I was concerned that during treatment this will take a nosedive, but they made out like I'm unnecessarily concerned. Now it happened they changed their tune a little 😅 apparently increasing iron intake doesn't help with the kind of aneamia you get from the Ribavirin?

[Lucien777 in reply to Lucien777]

I'm not sure how else to increase Hb levels

[-Janell in reply to Lucien777]

Eating foods high in vitamin c will help with iron absorption, and folic acid is needed for the body to make more red blood cells, so adding foods rich in those with iron rich foods may help, as well as avoiding things that block iron absorption. (Coffee, tea, soda...) I am by no means an expert, and after a little research I understand what you mean by diet change may not help with ribavirin related anemia. Couldn’t hurt though, right?

Again, I’m not an expert or medically trained person at all, but I did find this on the subject, and maybe it would be worth discussing with your healthcare providers? I copied and will past what I found and I put ** at the start of the paragraph with the suggested treatment. Here also is the source I found the information from:

health.ny.gov/publications/...

Anemia

Ribavirin frequently leads to anemia which can cause fatigue and place a patient at risk for the development of chest pain, shortness of breath and even heart attack. The degree of hemoglobin drops is directly proportional to the ribavirin dose, with many patients having a decrease inhemoglobin by as much as three to four grams within four to eight weeks of starting treatment.In the major clinical studies with pegylatedinterferon and ribavirin, significant anemiarequiring a ribavirin dose reduction occurredin 13-22% of treated patients. 2,60 The currentstandard of care and approved recommendationfor the management of anemia secondary to ribavirin is dose reduction. Patients without a history of heart disease should have their ribavirin dose reduced by 200 mg or one pill ifthe hemoglobin falls below 10 grams/dl, and ribavirin must be stopped if the hemoglobin falls below 8.5 grams/dL. In patients with a history of heart disease, ribavirin should be dose reduced if there is a greater than two gram drop in hemoglobin during any four week period on therapy and discontinued if the hemoglobin remains below 12 grams/dL despite dose reduction. Recently, data has suggested that even a small decrease in ribavirin dose may decrease sustained viral response rates in cirrhotic patients with hepatitis C. Therefore, it seems reasonable to use other means to counter the anemia caused by ribavirin and allow for the continuation of ribavirin without dose reductionat the initially recommended doses.

**This concept has led to the widespread use of erythropoietin as an adjunct therapy, although erythropoietin is not currently approved for use in this indication.Erythropoietin is an injectable medication that has been shown at doses of 40,000-60,000 units per week to increase hemoglobin level in people currently being treated with ribavirin, to allow ribavirin to be used without dose reduction, and to most importantly, relieve the fatigue associated with therapy and dramatically improve patients reported quality of life on therapy.**

Sorry for the extra long post. I have insomnia, so this gave me something to research for a bit (I feel like I’ve watched everything on Netflix. Twice. Lol) I’m not trying to be annoying. 😆

[Lucien777 in reply to -Janell]

No, not annoying at all!! Thank you so much for the links ! ☺️ I have read up about this a little,have had hep c for over 20 years, but the things I find online and the opinion of the hep c nurses seem to differ quite a bit 😅 luckily I don't have cirrhosis, so I'm hoping to get away with the dose reduction and only 4 weeks to go! Just went I to town had to stop after every flight of stairs or hills, just can't gety breath to make it up them. Will look into the folic acid route. Many thanks for taking the trouble to write and search all this out for me! 🤗 Good luck with your treatment also!! 🙏🍀🍀🍀💖

[navigatinglife]

Hi lucien, not a pleasant time for you but keep in mind that you were clear at week 3.5 🎉, you're on the home run. Really feel for you as its so tough but not as tough as you baby! Quite normal for ribavirin to be dropped. You've had loads of the wicked stuff. The other meds you're on will still do their job. You've done a sterling job on the treatment so take it as easy as you can. In a couple of months or so you'll be like Julie Andrews on those hills 😂 You have the summer and a renewed life coming 🌞🌞🌈 best wishes, navs 😍 😍

[Lucien777 in reply to navigatinglife]

Hey navs, how are you doing? 🤗😎 My nurse is saying different things every time she is starting to frustrate me, I saw her on Tuesday and apparently under ten still isn't all clear, the lab report needs to say target undetected, according to her. When last time she said under ten is pretty much the same as undetected. I just keep going and see what the 8 week viral load comes back as. She wants it to actually read undetected this time. Will have to wait until next week until someone will call me to find out. They starting to forget to ring also, had an interim blood test two weeks ago re. Haemoglobin and it went to 10.3 then already and no one let me know, she was supposed to ring my gp who asked for a call and she didn't do that either. She used to send a letter after each blood test to him, but hasn't since the Hb went down, so he didn't know at all, she didn't even change the labels of the meds bottles to account for the lower dose I have been taking five a day for a month now, I'm still picking up enough Ribavirin for three am and three pm. What a waste of meds also. She is loosing her marbles. It's getting frustrating now. But not long to go and hopefully I will be done with all of that soon 👍🙏😊 sorry this is so long!! 🤗 Good to hear from you and hope your jaw is getting better! 🙏🤗💖💖💖🍀🍀🍀

[navigatinglife]

Hi, that is all too familiar a story. I have only seen the nurse 3/4 times. No letters, nothing in writing. Nothing sent to GP so I can totally empathise with you. Also the conflicting information on all this. Every paper I have read states 15 and under is clear I believe because its unreadable, but I agree with you. I have read the papers for doctors etc. Also treatment changes constantly. Such as 1a/b used to be hard to cure with old regimens but now it's 3a with new treatments. So is very low reading good enough I ask myself as no appt with anybody since January. All this med stuff is trying so am happy not having any contact. My jaw is priority now, got surgery 31st May, top surgeon for saving faces. Having to pay as NHS waiting is way too long. Busy selling as much as I can on ebay 😂 I am worse off now but sure one day be better. I am near 60 so can't complain 😍😍😍 go with your gut, love yourself, lots, think it's only 30 days ! 😘😘🌈🌈💖

[Lucien777 in reply to navigatinglife]

Oh I'm glad that you can get your jaw sorted, even though it's not funny to have to go private 😣 I wish you all the best that all will be going well for you!🙏🤗💖🍀🍀🍀 Yeah everyone tells different and I have my low days where I think I won't be clearing it. Hard to keep positive sometimes 😓 but I guess it's not too far away now should be finishing my last tablets on the 4 or the 5 the of may, my brains completely gone now lol! I have even added weight and it's getting a bit too much for my liking now, but it's all the water retention too. And sitting on my bummore than I usually when working 😂 but that's the least if my worries right now and will come back off once going back to normal 😅 I wish you all the best too, we will get to the end of this eventually 😀🙏💪🍀🍀🍀💖💖💖lots of love

[Sillysausage234]

Hi lucien 🙋🏻‍♂️Not far to go now hang in there,maybe chest pain is reflux with all the ribivarin lunches you’ve been having,4 weeks,you’ve timed it well hopefully the warm weather will be here then take care xx😊🌞

[Lucien777 in reply to Sillysausage234]

Hi Alan, yes I do have heartburn too. This one though is literally any time I do something like walk a bit fast or go up stairs, it's crushing pain. Bit scary too 😅. I suppose it's the haemoglobin being so low that I literally need every bit of oxygen around 😂😂😂 just being really moany the last few days lol 😂😅🤔 not long now though, right? 😉 yes I did time it quite well, didn't I 😎🏖️hope you are doing good! 👍🙏And you take care too! xx😎

[L444]

Hi Lucien sorry to hear about the hb take care get up slowly don’t exert yourself this ribavarin is horrid you need to rest and have it monitored often wishing you well take care x

[Lucien777 in reply to L444]

Thank you so much🤗 will have another blood test in two weeks instead of four 😉 hope you are feeling much better, now you have all this behind you. 🙏 Can't wait to get this crap out of my system, hate the Ribavirin 😅 I'm just keeping on, finishing line in sight 👍 🤗 wishing you all the best 🌞🏖️👍😎xx

[Cara78]

Lots of luv! Xxx

[Lucien777 in reply to Cara78]

Thank you huni 🤗💖

[sugarandspice44]

Hi, just read your post from several days ago saying your haemoglobin kept dropping & having to have your ribavirin reduced!! I'm going through exactly the same right now, my haemoglobin gone down to 100 or 10 I've also bn told if that didn't work I'll have to stop treatment altogether!! Not an option I want to think about!! Feeling anxious, depressed,lonely, v emotional right now, I'm only on 1 ribavirin a day now, so hoping it works, thanks for listening to my moans & groans, hope your doing OK now, julie

[Lucien777 in reply to sugarandspice44]

I'm sorry to hear that, fingers crossed they put you lower now and your heamoglobin will go back up!! I still don't know what mine is doing now as no one rang since blood test on weds, and they said they would ring if any problems. I only have one a half weeks to go now, but don't feel so good at all at the moment, terribly tired, suppose to go back to work soon too 🤔 hoping for the best for you, I'm feeling quite depressed lately, but hopefully it will all be over for us soon enough 💪💪👍👍🌈🌈🌈sending you hugs xx

[sugarandspice44]

Thanks for your reply, hope you hear soon about your haemaogloblibin levels so as to put your mind at rest!! Nothing worse than the not knowing! I've had some brilliant days whilst on the meds but since rapid drops in my haemoglobin to be honest I feel physically in my last legs, I'm sure I'm not but that's how unwell & weak I'm feeling, I've bn trying to get out & about as much as I can but right now just walking down to the bedroom makes me feel like collapsing in a heap on the floor, not helping not being able to sleep neither, I'm lucky if I get 2 hrs a night!! And yes your right plays its toll emotionally/mentally as well, they say they may have to withdraw treatment altogether if haemoglobin dos'nt start going up soon (not an option I'm happy to think about at the moment) thanks for your support, much appreciated, love 'n' hugs, Julie x