New here and just started sovaldi/riba...bad side effect.

[mtc]

Ok so I'm sitting in the er writing this. I was planning on making my first post happy.
I'm 39, genotype 3 and I've had it since at least 2001 from drug use. I'm treatment naive. My dr told me my insurance wouldn't cover treatment because I'm in all respects perfectly healthy. No damage done yet at all he said. VL 700k. I haven't had a drink or drug in over 10 years and I eat healthy so that's probably why. Well I prayed and they approved me the first try.

All was going great. I actually started feeling better after a few days. I could actually think clearly. I didn't even know my thinking was clouded!! But wow. It was great. No side effects that I was terrified over. I do drink a lot of water.

Ok so now why I'm here in the er. The other day I had some pretty bad rectal bleeding that scared the sh....hell out of me. It stopped after a couple mins and I thought it was from a hemorrhoid that I had treated last winter...but it happened again today so I came here. I read a few places where this has happened to people, though very rare, shorty after starting riba.

Does anyone have anything helpful to tell me please?

[KimInTheForest]

Hi mtc. And welcome to the forums.

Sorry to hear about your problem that has landed you in ER! I don't think I have any useful information for you on that score. Just wanted you to know we are here for you - at least as your cyber-support squad. Maybe someone more knowledgeable here will have some relevant information. It's good that you got yourself to ER. If it is a hemorrhoid, is it possible that it is unrelated to treatment?

Great to hear that your mental clarity improved so quickly. That's always a good sign. Mine did too. I was geno 3 also. Did 12 weeks of harvoni+riba and achieved SVR12 in october. so I seem to be cured.

kim

[HealthGal3]

Hi MTC

Not sure what's creating the problem you have going on.  I will take a stab at this...sometimes an existing health issue we have may be exasperated by any kind of treatment.  It's kind of like having an Achilles heel.  I know that being on treatment, has made my cervical and joint issues much more intense.  I have pain & headaches from that everyday.  I'm hoping that will clear up in time.

See what your Gastro doc says and keep on the steady course and remember, all of us are in your corner! Right Kim?

HealthGal

[mtc]

Thanks guys!! Yeah so they think it's unrelated so that's good. They did blood work and everything is totally normal. I'm going to see my gastro this week.

But other than that little scare I feel great!!

[HealthGal3]

Glad to hear all's ok!

HealthGal

[KimInTheForest]

That's good news, MTC. Glad to hear it's not related to treatment.

kim

[Cal]

Hi there,
Well that's great news. I have heard of someone on this forum with rectal bleeding. But I have it as well and it has been everyday through treatment. Mine is from a fissure high up inside the rectum from lichen planus. It's HCV related. I just look forward, like you to these things getting better or at least improving after tx. Good luck. Keep us posted. Cal

[Rubi]

The side effects have been particularly harsh on me, but I have not had that. Thank goodness. Glad yours in unrelated to treatment.

[Cal]

Hi Rubi,
What drugs are you on? How long. Can you fill in your profile signature and then we won't keep asking you the same questions.

What sort of side effect are you having that are harsh on you. You poor thing. Cal

[Rubi]

Ok, Cal. I found where to fill out the signature. Hope that helps.

I have almost every symptom on the list. Fatigue is the biggest culprit. But, when it hits it's like a ton of bricks has been dropped on me. My body becomes weak and trembly. I've fallen twice. Joint aches, chills, nausea, vomiting, blurry vision, teeth and gum pain/sensitivity, itching, brain fog....did I really say snerk the other day... what the heck was I trying to say?? I'm so weak that I can only be upright and moving for about 30 minutes at at time before I have to sit down. And, if I'm not leaning on something (shopping cart, counter top, etc) I can't make it that long. Insomnia, but I did get almost 6 hours of straight sleep last night. And, now my hair hurts. Feels like I have my hair brought back into a very tight ponytail.

I hate listing all that. I don't want to discourage anyone. There are many, many people who do not have all that. I have read and read and read about them. So, please don't let my symptoms scare you. I'm almost done with week 10 and while I have have had some low moments, I still have a very positive attitude. My numbers are looking good.  I was not undetected at the 4 week mark, but the Viral Load was down to 42. That's a lot of dead virus I'm trying to flush from my body. So, I will hold on for a few more weeks. Finish this treatment. Then start rebuilding my strength with some light exercises to start with.

[Cal]

Hi Ribu,
Wow you have a lot of the symptoms that I do. I am sure it's the ribas. My hair hasn't hurt but it's tarted falling out again rats.....No not everyone gets the sxs we do. I do know a lot on ribas that have had these extreme sxs though. Post my last tx, I planked for a couple of years. I was so weak and my body just couldn't support me. SO I know what you mean. I am having it again post ribas as well. I am working with a physiotherapist now to rebuild my body muscle. But despite that there is an innate weakness there. Especially in my neck.  They stay in your body for up to 6 months post tx too, so it will take a little while to get back to normal. But you will get back to normal. Your numbers are great. You'll do really well. Good on you. Cal

[mtc]

Wow Rubi, I'm really sorry to hear you're having such a hard time. I'm only 10 days in right now. Other than that other issue (high fiber and I seem to be fine) I've only had mild headaches other than last night I experienced the insomnia and a horrible headache but it was  manageable. It really scares me to hear the really bad  experiences.

Saying a prayer for you.

Cal,

Thanks for the support! So is there anyway to treat that for you?

[Cal]

Hi mtc,
I am hoping it's just a post tx thing. But I think when I se the pain clinic I'll check with them. Gastro's really don't know what to do with people with post tx sxs I'm afraid. Cal

[mtc]

That's scary. I'm sorry you're going through that Cal. On the bright you're UND!!!

[Cal]

Oh Thanks mtc,
It's a bit scary more annoying really. I just wanna get on with it. Cal

[Ahealthyliver]

I I just completed six months of those medications. At the beginning maybe the first week I didn't feel great, but with drinking a lot of water and just a little exercise I felt amazing. I was shocked at how easy the medication was on my body. After six months my viral load is undetectable and it started out at over 18 million.
 I think I tried to think I felt worse than I did. And that may be because I was on the interferon treatment years ago and I was comparing it to that. But anyway be positive and know that you're going to be healthy after you finish this up. But I cannot stress how much water you should drink congratulations on a new health...

[Cal]

Hi Ahealthy Liver,
Well done for completing 6 months of tx. I just did 17 weeks. We're you on Viekira or Solvaldi and Riba?
Yes much better than interferon, I did that too. Yuk, bad memories. Let us know how you are. Fill in your signature profile and then we wont keep asking you the same questions. Keep posting. Cal

[mtc]

Congrats ahealthnewliver!!!

That's great to hear!! Yeah I've definitely had some of the sides not really I think it's a small price to pay. I got my 2 week blood test and I had highly  anemic so my dr lowered my riba from 1200 to 1000. I was definitely feeling that but it's been 2 days lowered and I feel much better now. The rage has pretty much gone now only mild low thinking and headaches here and there. Easy stuff.

Thanks for sharing!!