Hep C Discussion Forum

socalbeatnik · Veteran Member

ION-3 trial

socalbeatnik · Veteran Member

Thanks Sofi and Rh

Well glad they figured out what was up with your legs Sofi hope the medication takes care of it sooner than later. Nobody has any kind words for the Riba that is for sure. Seems to effect everybody in some way or another. But hope you feel better real soon. And yes only 3 weeks left than the anxiety will be to see if we stay undetected...lol Speaking of which i still keep looking for and update for the phase ll study the last one being from early May. Wonder how those folks are doing if they have reached svr12 yet. The last i have seen was 8 weeks.

RH you are right i knew my hemoglobin had been going down i knew it and wasnt surprised. My body was also telling me the same thing which was why i stopped my bicycle exercising. I looked up side effects for the Riba when i first started taking it and anemia was number 1 on the list. So no surprise just wasnt sure how they would deal with it. I went into office this morning and first thing i said to them was "How many one arm push ups do you wanna see me do, I feel Fine". And yes i try to keep a good attitude to all this and laugh as much as possible.

I did ask them if i should take some iron or increase what i am already taking and the doctor said "iron doesnt help this kind of anenmia " They dont seem to elaborate very much on questions. Thanks again...Rick

sofi moore · Veteran Member

Hey Rick,

Glad to hear it! I understand about being all alone inside your head--it's a scary place! Only three more weeks and those levels will come back up. I had a scare today. My regular doctor sent me for an ultrasound--he was worried I had a blood clot in my leg. It ended up being swollen blood vessels but no clot! Yay! I have to elevate my legs, rest, and take a medicine he prescribed, which the study doc approved. (and this is from the ribavirin) My mother left work when I told her he thought I may have a blood clot and then I became very nervous but it ended up being ok. However, I am glad you get to stay on the drugs. I understand that fear because that was my concern if I did have a clot. So I get it. Hopefully, it will be smooth sailing from here.

Sofi

HR · Senior Member

That's good news Socal. I've been waiting on your post to see what happened.

I know your mind can wander when you're by yourself. Hang in there,you've got a great attitude. I know the RIBA doesn't help from reading all the posts by the people who are on that arm. 3 more weeks and you should be home free.

Take care bud

socalbeatnik · Veteran Member

Thanks Ckncali and Sofi for your support. My wife and son left for the Philippines on Sunday for 2 weeks so i have been home alone. Home alone with my head isnt always a good thing, it cant get out there a bit, especially when it is left to deal with something like the phone call i got yesterday. So thank you for bringing me back to earth somewhat.

Went to doctor's office this morning and everything was good. They said my hemoglobin had dropped to 10.1 and they needed to keep an eye on it. They drew only 1 tube of blood and the doctor came in and asked me a series of questions regarding how i was feeling. Overall i am feeling pretty good a little weaker yes. I really had been expecting to feel much worse a this point before i started the meds. They didnt even ask to see my meds or chart this morning which i had brought, didnt do the pill count or anything like that. They just wanted to ask how i was feeling the good and the bad and draw some blood and than sent me on my way.

Thanks again for words of support, everything okay here,

Rick

sofi moore · Veteran Member

Yay Rose! That's awesome!

Socal,

I hope not, too. Only three weeks. Maybe, there is something you can eat that will help. I understand your fear but I bet all will be ok. Sending good thoughts your way. Keep us posted please.

I am going to my regular doctor tomorrow about the knot/cyst/boil under the skin on my right calf. The study nurse told me to do that. She is very sweet but has acted like every side effect (except itching and fatigue) is not med related when any google search of ribavirin says otherwise.

Ckncali-- I tried to wear contacts today and could not see out of my left eye. It was incredibly dry!

Ckncali · Veteran Member

Hey Socal, So sorry to hear about your low hemoglobin but I thought you had mentioned in an earlier post that your HMG was low on your first week so it must have dropped some more. I don't think you need to worry about them stopping all the meds, I am sure they will only lower your RIBA until the blood tests improve and will continue to keep you on the Sof/led combo pill. I can't imagine that they would stop everything. I know it must be nerve wracking to get that call and must be causing you a great deal of anxiety as it would for any of us but if you look at posts from other people on trials that include RIBA they typically lower the RIBA dose to get your blood levels higher then raise The RIBA back up once the levels rise. They don't stop the trial. If your levels are low then you are probably anemic and must be feeling quite fatigued? Let us know what happens and I really think you will get to continue. Take care.

Ckncali · Veteran Member

Rose, Way to go! Congratulations on the UND. So happy for you. You haven't reported in lately. Are you having many side effects?

socalbeatnik · Veteran Member

Well i just got a call from the trial study doctor's office. They said they needed to see me asap regarding some blood results they just got back. She said it was regarding my hemoglobin count was low and they needed to check my blood again. I said your not gonna take me off the medication i hope and she said, no, no. Only have three weeks left and would hate to not see this all the way through. I really hope they dont take the meds away. I had told them i was feeling a little weaker on last visit and had stopped my bicycle exercise.I iknew my hemo was gonna down, your body tells you things. But i havent been that worried about it, more worried now they might pull the meds from me. She did say it was probably the Ribavarin due to it does have a high rate of causing anemia but the hemoglobin will go back up.

Well guess i will find out more tomorrow.

socalbeatnik · Veteran Member

Congrats Rosie....I found it to be pretty jaw dropping as wwell in such a short period of time the results. Good Work.

Rose · Member

Thanks! its really nice to have you guys to share this with. You are my comrads on the front line. We are winning the battle one UND at a time. Cant wait until we win the war. Stay strong!

Rose · Member

Thanks! its really nice to have you guys to share this with. You are my comrads on the front line. We are winning the battle one UND at a time. Cant wait until we win the war. Stay strong!

HR · Senior Member

That's great news Rose. Let's keep it coming.

Biggyb · Guru

Great news Rose, hang in there.

Misfis · Veteran Member

Rose wrote:
Drumroll please, week 1 results came in (on day 22). No hepc detected!! its a good day!

a congratulations is in order!!!

Rose · Member

Drumroll please, week 1 results came in (on day 22). No hepc detected!! its a good day!

Misfis · Veteran Member

Oh, see that you are UND, Karen. What wonderful news!!

Misfis · Veteran Member

Karen wrote:
Hi Michele-are you on 12wks...24wks here! Surprised you do not have labs 5 1/2wks in. Do you know if you are undetected?

Hi Karen. I"m on the 12 week one. Didn't know that there was a 24 week trial. Am stilll waiting for my second set of lab results. 47 after first week, so hopefully I'm und this next one. I'm going to SF for my 6 week blood draw this coming Wednesday. Hope I get more results then. Are you UND at this point?

sofi moore · Veteran Member

And Hepcat, thanks. I am glad the itching is better. Hang in there.

sofi moore · Veteran Member

Thanks for all the suggestions Ckncali (and it is an ulcer in my mouth--I can see it now).

Thanks for all the encouragement Socal! I am sorry about your hair and all the other sides.

socalbeatnik · Veteran Member

hope you feel better, i am able to take naps. Went and bought some benadryl. I cant imagine doing the Interferon for 48 weeks as well. I know many are not able to do so.

I am experiencing some hair loss as well. Most of this is just uncomfortable. But when your body just doesnt feels right its hard to keep your mental bearings intact i think. We will get through this Sofi, dont ya worry yourself to death.

sofi moore · Veteran Member

I cannot imagine being on this any longer than 8 weeks. I am practically insane from the lack of sleep by itself. Oh, I have also been getting indigestion and nausea off and on. I just tried to take a nap so I could get through work tonight without feeling like I may pass out from sleep deprivation, I lied down for an hour and never fell asleep. I know I should be grateful and I usually am but today is just a bad day. My emotions are kicking my butt today. Thanks for all the support everyone.

hepcat60 · Senior Member

I have been taking Atarax for itching and it has been great. Very little itching and no more rash. They also had to lower my Riba doses to 400mg bid.

sofi moore · Veteran Member

Ckncali,

The only one shown to me was the one saying HCV RNA undetected. I will ask next time. I don't go back until July 16th. The doc did say my blood work would show if it were systemic and they would let me know. But those labs won't be in until around July 16th. Unless maybe he asked for them sooner due to my symptoms but he didn't say that. Thank you, I will ask for the copies of all results next time.

Again thank you, being heard makes all the difference.

Sofi

Ckncali · Veteran Member

Sofi, I looked up side effects of ribavirin on about.com and both myalgia (muscle pain) and arthralgia (joint pain) are listed. Did you get a copy of your blood tests and if so what are your baseline and week 1 and week 2 values for HGB, RBC, and HCT? See if they dropped much from your baseline and if they are in normal range. I ask for copies of all my blood tests at every visit and they are happy to give them to me.

sofi moore · Veteran Member

Socal,

I hate it that you have all that, too, but now I feel much better about it all. I seriously freak out and need to stay calm. And yes, three more weeks, I can do this, WE can do this.

Thank you.

sofi moore · Veteran Member

Ckncali,

Thank you. I will try the yogurt remedy.

Riba does cause muscle/joint pain according to numerous websites so I find it odd for the doc and nurse to act like it doesn't. The fact that you have strange physical things occurring (which I wish were not so) does make me feel like I am not crazy and all these happenings are indeed side effects. The muscle/joint pain started before the Benadryl but the gum swelling was two days after. Maybe I should stop taking Benadryl. The gums started yesterday afternoon when I woke up from a nap. It is still about the same so at least it doesn't seem to be getting worse. Also, if I walk around in the mornings through the pain and stiffness, it does get better but still hurts most of the day--but I am able to walk.

At times I panic and worry something is wrong. Once I do something else, I forget and no longer panic.

Ckncali · Veteran Member

Sofi, I have not experienced any problems with hives or rash. It sounds like your trial folks are addressing the hives problem with the Benadryl. I did at the beginning of treatment get painful sores on my tongue that would not heal. Try swishing plain yogurt with live cultures in your mouth, it was very soothing for my mouth sores ( someone suggested this to me and it helped). I also am using biotene tooth paste and mouth wash for dry mouth during the treatment to keep the tongue sores from coming back. I have noticed my knee having pain and also my shoulder but it is mild And also some back pain different from my usual but also mild.

Your muscle and joint pain being so bad you can hardly walk in the morning is very concerning to me and I think your trial folks should take it more seriously. Doing stretches sounds like good advice but did you ask them which drug could cause the muscle and joint problem? Since you are athletic and never had this problem before it sounds like it is the drugs and I can't imagine that it could be caused just because you are not running but I really don't know. I have used homeopathic arnica cream for muscle soreness in the past (not currently while on the trial) but you would need to ask the trial folks if it is ok to use. I wonder if a good massage would be helpful? How much longer do you have left to complete the trial?

I don't know what to think about the knot in your leg. I am getting a small growth on my bottom eyelid like a little bump and red splotchy dry area around that same eye and itchy dry eyes, I know all that is from the meds.

Also did the muscle and joint pain start before or after you started taking the Benadryl? Make sure Benadryl does not have side effect of muscle/joint pain if it started after. Also look up side effects of RIBA and see if muscle/joint pain is a side effect. It seems like RIBA causes all kinds of side effects in many different body parts.

sofi moore · Veteran Member

Hello all,

I am on the 8 weeks with ribavirin-- is anyone else having the following side effects? Hives on my left leg (a few on the right one but a lot on the left). On my right calf muscle there is a knot beneath the skin (not a hive). Sore muscles and joints--in the mornings I can barely walk. Swollen or sore gums, the gums below my front bottom teeth that connect to my inner lower lip.

My last visit the doc didn't think my hives were from the medicine until I mentioned being in the sun then he said take Benadryl. The Benadryl has made the hives better, they are almost gone and it has helped with all the pesky itching. But he and the nurse dismissed my joint and muscle pain and said it was from not running anymore (I stopped running when the hives came) and to do stretches. I am stretching and walking and it isn't better. I think it's the meds because for 35 years I have never had any of these symptoms. I don't have allergic reactions to the outdoors--I am not even allergic to poison ivy. I have always been active and never ached like this. I am worried if I call on Monday about my gums and the strange knot in my right leg, they will act like it isn't the meds. I want to stay on the meds but I want the doc and nurse to take me seriously and make sure I am ok. The doc did say my blood work (taken last Tuesday) would reveal if it were something serious but who knows when the results will be back? Can anyone help me? or maybe just tell me I am not crazy and it has to be the meds.

Thanks,

Sofi

Ckncali · Veteran Member

Sofi, Socal,

One more thing. I have heard vitamin d3 is good for joint pain and aches. I have been taking D3 1000 twice a day for the entire trial and was told it is ok to take it by trial doc. I am not getting the type of muscle and joint pain you and SoCal are getting so perhaps d3 would help you both. I am also taking magnesium supplement which is also ok.

On the blood tests, the viral load test can take a long time, up to two weeks, but they get the CBC (complete blood count)and liver enzyme tests back usually in only a day or two so should have those results much faster for you than July 16.

-- Edited by Ckncali on Saturday 6th of July 2013 07:08:43 PM

Ckncali · Veteran Member

Sofi, The panic you are feeling is also probably caused by the RIBA. I had such terrible anxiety last week that kept building and got so bad I called and asked to reduce the RIBA and was told no. Lack of sleep makes the anxiety worse too. RIBA is a nasty drug and fortunately we just have to put up with it a little bit longer. The folks that have to take it for 48 weeks, I can't imagine, they are true warriors.

-- Edited by Ckncali on Saturday 6th of July 2013 06:42:43 PM

-- Edited by Ckncali on Saturday 6th of July 2013 06:45:28 PM

socalbeatnik · Veteran Member

Hi Sofi...We spoke before and i have some of the same symptoms maybe in a little varied form. We are on same treatment and we only have a little over 3 weeks left. I had to quit riding my bicycle, the same route i always ride was unable to do so after starting to feel weak half way. My arms and legs are sore as well, the calves of my legs ache as well as my arms from shoulder to elbow. Itching and itching...lol and i get these little welt type things on my scalp. Pretty sure its the RIBA i would bet money on it. Havent done the benadryl yet but think i will finally break down and give up and go get some today. Yer not going crazy, i try to remember that this treatment we are on is better than just about every other one out there it seems from what i read what others are going through with some of those other meds. Also i got a copy of my blood work from week 1 of trial and noticed that many of the results had dropped to below normal and were now reading low, like red blood cell count, hemo, and many others were now low. They were all within normal range prior to treatment. I expect them to come back up after i stop the meds..

Hang in there, 3 more weeks for us...Hope you feel better

Rick

-- Edited by socalbeatnik on Saturday 6th of July 2013 06:23:17 PM

Karen · Senior Member

Hi Michele-are you on 12wks...24wks here! Surprised you do not have labs 5 1/2wks in. Do you know if you are undetected?

Misfis · Veteran Member

I'm still waiting for my second lab results. Research asst said they all go to a lab in Kentucky and can take time. I'm 5 and a half weeks into this, but only one lab result so far. Almost half way point.

Misfis · Veteran Member

Yay! 52baddog! hope we're all on a roll!

Misfis · Veteran Member

That's wonderful, Li'l Eddie!!!! So happy for you, and that feels encouraging for me,too. I think you and I are on the same combo--ion 3 no ribivirin.

Karen · Senior Member

Looks like a "Gilead" home run!!!

52baddog · Senior Member

Thank you, I can't wait till July 16th when I am supposed to get my 4 weeks blood test result. Thank you Gilead.

HR · Senior Member

Looking good 52,keep doing what you're doing.

socalbeatnik · Veteran Member

Congrats Baddog good job the less than 25 is undetectable from what they told me. Whats that make four of us now? Keep up the good job.

52baddog · Senior Member

I got my first week and second week viral load results.

first week 66 (from 640,000)

second week <25

I am hopeful.

Ckncali · Veteran Member

Eddie, SoCal and Sofi,

Well that is about the best news I have heard all week. Undetected for all three of you on the same day. We should have a party And celebrate.

Rose and Randy and a few others are up next. Looking forward to hearing good news from all of you.

Sofi, I hope those red welts get better. UND sure makes those sleepless nights and the RIBA rage more tolerable.

Hey Tig and Kellie, I hope you two are doing ok. I wish your treatment was not so difficult and that it will get easier for you.

Biggyb · Guru

Good job all you Dragon Slayers, keep fighting. Hopefully it will pay off.

Rose · Member

Congratulations you three! UND that is fantastic news, I couldn't be happier for you :) .. hopefully I'll get the same news soon and can join the Undetectable ION-3 club. (knock on wood..lol) - enjoy!

socalbeatnik · Veteran Member

Wooo Hoooo....Everybody happy for you all and thank you for thoughts as well. Cinnamon Girl thank you also.

I asked about vitamins and they told me it wasnt a problem as well.

Sofi my wife who works in a hospital as an RN told me that often patient will develop rashes or have some side effects and she said many times all the doctors will do is give them Benadryl as well. She told me to get some with the itching issue but i have just braved it out. It isnt as bad as it was anyhow. Well we have reached the halfway point here, its all downhill from here.

HR · Senior Member

Congratulations everybody. Looks like we got the best 3 reports a person could ask for. Great job!!!

Take care

Randy

sofi moore · Veteran Member

Hi all,

I was only told not to take antacids. The nurse said it didn't mix well with antacids.

Congrats Eddie!!!! Cograts Socal!!! I received my week 2 results today, and it is undetectable!

However, the doctor did not like the red welts on my leg. The nurse thought they were bruises. He was less concerned once I told him about being in the sun the day before they appeared (it was after 6pm so I thought I would be fine.) He said they were indeed rashes and for me to take Claritin or Benedryl. I am going with benedryl, maybe it will help me sleep. My UND results are well worth hives and sleep deprivation!

Tig · Admin

Hi Kel, yep I try to walk every day to keep things lubricated and flight worthy, lol! Strange stuff really. All of a sudden the areas adjacent to my injection sites are angry red and the leg pain accompanied it. This is week 7 and I've really noticed a difference in side effects following each injection. I guess it's just par for the course yawn xo

Kellie · Senior Member

Brady, Have you moved your legs lately? Like walking? I just sayin' cause I stopped moving around when the sx started kicking in. I wonder maybe they wouldn't have gotten so bad if I would have kept on movin' - even just a teenie bit. K

Tig · Admin

Thanks Sister! All of a sudden I'm not feeling so hot, lol! It's hopefully going to pass soon. Kind of feels like some MMA fighters are beating my legs with hammers, ha! That and fatigue is overwhelming at times. It's nice to hear from these ION folks and see that there's hope in the future for most affected by this crap. I'm glad to read that their side effects are easier to tolerate. That alone is good news.

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