Author Topic: After taking the newest drugs (Sovaldi etc) (Read 36034 times)

Steph · « **on:** October 14, 2014, 11:17:47 pm »

Please forgive me - I am new to this Forum. My question is this. How common is it to finish the newest 12 week treatment of pills - and then get a terrible bout of gastrointestinal pain, sleepless nights, nausea, etc?

?? An endoscopy was done and nothing major showed up. It has lasted 3 weeks and was never experienced prior to taking the pills. Google does not show this as a side effect. Has anyone else had this, or is anyone out there who can give me some advice? thanks, and best to everyone - from Steph

lporterrn · « **Reply #1 on:** October 15, 2014, 10:11:50 am »

Most likely unrelated, or if related, not directly. For example, if your appetite returned after stopping meds, and you ate something different, or ate later in the evening, this would explain it.

Ronaldo · « **Reply #2 on:** October 15, 2014, 01:53:27 pm »

I read the other thread is locked now so I guess this is a good place to go again.
First Steph, I'm sorry to hear about your medical problems and wandered what your results on the HepC treatment. I was called yesterday by the nurse and my results came back already. The lab was actually after 5 weeks treatment. She had the good news, she said I was negative. Tomorrow I will be half way on the 12 weeks. I hope and pray for everyone to get good results. I'll give an update after next lab.

Steph · « **Reply #3 on:** October 15, 2014, 05:38:54 pm »

Thank you both! No results yet from the blood test but should know something in a week or so. Glad to hear you have good news. Keep at it, my friend. Steph

bwelsh · « **Reply #4 on:** October 20, 2014, 10:30:57 am »

My Mom finished her 12 week treatment in June and she was horribly sick. Fatigue, sleepless nights for months, no appetite, etc.... the poor woman never slept again since ending this damn drug in June. They never found what was wrong. Her hepatitis doctor threw her away once she completed treatment. She started bleeding from her nose and mouth, and needed platelets and plasma. She lost the war on 10/7/14 when she had a massive stroke to her brainstem that put her in a coma. She died on 10/13/14.

I blame Sovaldi. She was fine up until this medicine. You can find all my posts relating to her illness on this forum when I started looking for answers in June. We never found an answer.

I understand your confusion. You want answers... you may not find them here, but if I can help in anyway, please send me a private message. I am working with a lawyer on a lawsuit, I think it's only a matter of time before this drug kills more people or seriously affects their life in a negative manner.

Curing hepatitis at what cost?, your life. That's this drug.

Bucky · « **Reply #5 on:** October 20, 2014, 12:37:06 pm »

Quote from: Steph on October 14, 2014, 11:17:47 pm

Please forgive me - I am new to this Forum. My question is this. How common is it to finish the newest 12 week treatment of pills - and then get a terrible bout of gastrointestinal pain, sleepless nights, nausea, etc??? An endoscopy was done and nothing major showed up. It has lasted 3 weeks and was never experienced prior to taking the pills. Google does not show this as a side effect. Has anyone else had this, or is anyone out there who can give me some advice? thanks, and best to everyone - from Steph

Hello Steph,
Sure did. I did not post a lot about it but during treatment but I had gasto pain. Post treatment I have a twinge every now and then and sometimes suffer with constipation. My IDS said not to worry that as time went on my gut would calm down as I recovered from the dragon. I have gastro problems when I use antibiotics so I was not alarmed when my lower intestines didn't feel quite right especially after three months of some pretty potent drugs.
I did post about my disrupted sleep post treatment. I slept great when on the meds, but when I finished I was only sleeping 5-6 hours a night. That went away about four weeks post treatment and I am sleeping better than ever.
Bucky

Ronaldo · « **Reply #6 on:** October 20, 2014, 06:30:57 pm »

I have a question and its an honest question. I was wondering if any of the posters live in Colorado, and if that provides any help for side effects?

Steph · « **Reply #7 on:** October 20, 2014, 06:44:58 pm »

FYI, Ronaldo - this poster lives in Maryland, not Colorado.

BWelsh - I am so sorry to hear of your devastating loss. I will keep you in my prayers, my dear.

Bucky: Thanks for sharing also. I do hope you are much better now and things will continue to improve.

Steph

DesertGuy · « **Reply #8 on:** October 20, 2014, 06:58:25 pm »

Ronaldo---I live in NM and have a MM card. Yes it has been the only thing I use to fight these side's. For insomnia--a quiet bowl by myself and I relax enough for a few more hours of sleep. When the Riba rage hit's--I run for the garage and turn on the music and smoke (better than attacking the wife)--but FYI do not try any of the edibles. Too strong and toxic for our tender livers.
And on a side note---years ago I read a study or two that long term cannabis use led to fibrosiss--but have not been able to find again. Myself being long term--45 yrs.
Yesterday I had my first bought of gastro pain in 4 months. 57 more pills of Sovaldi and I am done. Hope the pain was a fluke.

Bucky · « **Reply #9 on:** October 20, 2014, 08:16:49 pm »

Quote from: DesertGuy on October 20, 2014, 06:58:25 pm

Ronaldo---I live in NM and have a MM card. Yes it has been the only thing I use to fight these side's. For insomnia--a quiet bowl by myself and I relax enough for a few more hours of sleep. When the Riba rage hit's--I run for the garage and turn on the music and smoke (better than attacking the wife)--but FYI do not try any of the edibles. Too strong and toxic for our tender livers.
And on a side note---years ago I read a study or two that long term cannabis use led to fibrosiss--but have not been able to find again. Myself being long term--45 yrs.
Yesterday I had my first bought of gastro pain in 4 months. 57 more pills of Sovaldi and I am done. Hope the pain was a fluke.

DesertGuy
I also read that study about daily long term use of the chronic. I wonder how much the test subjects smoked daily to cause fibrosis?
Bucky

DesertGuy · « **Reply #10 on:** October 20, 2014, 08:59:59 pm »

I wonder the same thing--often I've wondered how much my recreational use has contributed to my cirrhosis?? Never been a heavy drinker--stopped smoking for periods the same as drinking, and never used other drugs --was just recreation for 45 yrs?? LOl LOL--I'm laughing as I type this--but seriously now did I daily contribute to my liver condition all these years, without knowing it??

Steph · « **Reply #11 on:** October 20, 2014, 10:49:31 pm »

To all MM users and other users of Cannibis - I think if there was a link between smoking pot and liver dysfunction, we would have seen an enormous number of failed liver cases in the years following the cultural revolution. I have never heard of such claims or studies of that sort. I have heard that salt, fats and sugars were not good diets for those with failing livers, and stress never helps when you are trying to heal from anything.

Stay positive and enjoy the season changing. Watch for a great sunset on this Thursday, the 23rd. Partial eclipse. Steph

Ronaldo · « **Reply #12 on:** October 21, 2014, 01:08:42 pm »

Thanks, I just wanted someone legal to vouch for it. I know it helps with the side effects. I have taken the meds when smoke was an option, and when it was. My key is eating enough and drinking enough water. I have very little problems when it is available. I'm talking about budget when I say an option. I think its always available.
I'm not promoting the use of it, just giving my experience. I think anything you smoke affects the liver. I know during clinical research study, subjects were instructed not to smoke it. The questions I was asked at the clinic was do you smoke tobacco, drink alcohol and what meds I take. I knew under my circumstances the bud was not on the no go list. They had my records and knew everything I hid nothing.

Bucky · « **Reply #13 on:** October 21, 2014, 01:49:26 pm »

Quote from: Ronaldo on October 21, 2014, 01:08:42 pm

Thanks, I just wanted someone legal to vouch for it. I know it helps with the side effects. I have taken the meds when smoke was an option, and when it was. My key is eating enough and drinking enough water. I have very little problems when it is available. I'm talking about budget when I say an option. I think its always available.
I'm not promoting the use of it, just giving my experience. I think anything you smoke affects the liver. I know during clinical research study, subjects were instructed not to smoke it. The questions I was asked at the clinic was do you smoke tobacco, drink alcohol and what meds I take. I knew under my circumstances the bud was not on the no go list. They had my records and knew everything I hid nothing.

LOL...you said Bud!
Everything you mentioned was on my "do not do " list as well as vitamins & supplements. My doctor did not mention weed but someone posted a while back about being denied meds because they failed a drug test. I was kind of shocked, but I guess the insurance Nazi are looking to disqualify anyone they can.
My friend who had a transplant had to alcohol free for six months before they would do the procedure. That was many years ago so that rule may have changed.
Bucky

Tess1971 · « **Reply #14 on:** October 21, 2014, 02:32:46 pm »

Why would we not be able to take a regular multivitamin?

Bucky · « **Reply #15 on:** October 21, 2014, 03:21:07 pm »

Quote from: Tess1971 on October 21, 2014, 02:32:46 pm

Why would we not be able to take a regular multivitamin?

Tess,
They are processed by the liver. So many of the foods we eat like bread, cereal and others are already fortified . The nutritionist I had a consult with told me that she had rather I eat a balanced diet and get my V&Ms that way. Also on the "not" list are fried food, red meat, whole milk, factory canned food (too much NA) and salt in general. Fresh fruit & vegetables are preferred but if they are out of season then use frozen. I eat a lot of fruits & vegetables (especially green ones for vitamin K), baked chicken & fish. This is pretty much the liver friendly diet that I had been on for years.
If you look at the label on most multivitamins they have a mega dose of some of the ingredients. She said if I couldn't eat healthy and I thought I needed a multivitamin then to get one that is formulated for seniors that have no iron or mega doses.
Bucky

lporterrn · « **Reply #16 on:** October 21, 2014, 04:45:06 pm »

Tess, although I am more in Bucky's camp of eating nutritionally rather than supplementing, you can take a multi. And Bucky is also right that if you do take one, make it a low/no iron one. Nothing bad will happen to you if you take a multi.

Tess1971 · « **Reply #17 on:** October 21, 2014, 08:21:15 pm »

I take a 50+ centrum silver which has no iron and is low in vit A . I need the vit D since I have been low in it in the past and take no other vits. I do not take it everyday but since I have not eaten red meat or pork in many years and only on occasion eat humanely raised free range chicken or turkey I need to on an off. I do eat fish and beans, veggie burgers, tofu etc. I have been an whole grain organic veggie person for many years - uh oh, my age is showing again, hahaha I am considered one of those transplanted hippies here in Tennessee. I even had my daughter on a holistic farm with midwives in 81 here in Tennessee.

Bucky · « **Reply #18 on:** October 22, 2014, 10:51:03 am »

Quote from: Tess1971 on October 21, 2014, 08:21:15 pm

I take a 50+ centrum silver which has no iron and is low in vit A . I need the vit D since I have been low in it in the past and take no other vits. I do not take it everyday but since I have not eaten red meat or pork in many years and only on occasion eat humanely raised free range chicken or turkey I need to on an off. I do eat fish and beans, veggie burgers, tofu etc. I have been an whole grain organic veggie person for many years - uh oh, my age is showing again, hahaha I am considered one of those transplanted hippies here in Tennessee. I even had my daughter on a holistic farm with midwives in 81 here in Tennessee.

Tess,
It sounds like you eat better than I do! I do have a friend that I get my eggs from because she has free range chickens as well. I see that you are already aware of the problems with iron & A and liver toxicity. I followed my doctor and the nutritionist recommendations about not taking a multivitamin during treatment because it was one more thing for my liver to process. I was checked for vit levels and my D was fine. I do understand women have different nutritional needs than men especially with D.
BTW, I still have some Grateful Dead t shirts from back in the day.
Bucky

DesertGuy · « **Reply #19 on:** October 22, 2014, 12:38:33 pm »

Sugar hurts--I sure screwed up last weekend and ate wrong, to many bad things at in a 12 hour period. Cola, ice cream, and carbs with no greens. I haven't had that much discomfort since starting treatment. Just today am back to what I was Friday. I have to admit, wife and I don't eat balanced meals. I didn't cook until I became unemployed. Thru my sickness I have learned certain things are poison to me. Almost anything with nitrates used to make me vomit violently, and always had a warning it would happen. Don't think I will ever eat another hot dog, and am afraid of pork products. Last episode was 2 months before starting treatment and this past weekend felt anytime I would get that precursor bad taste that would tell me within 4 hours I would be sick. 55 days to go today sol/rib 24 weeks--AHHHHH!!!!!!!!

lporterrn · « **Reply #20 on:** October 22, 2014, 01:01:48 pm »

Tess - I take that too. Do you take more vit D than just the supplement? If not, consider it. Vit D tends to be low in those with liver disease. And as we get older, we can't utilize what we get from the sun, so supplementation is recommended by most docs. My doc tests for it.

Tess1971 · « **Reply #21 on:** October 22, 2014, 01:51:53 pm »

I was taking an extra 400mg until just recently on treatment. I do drink an Atkins shake on days I get less protein since they had Vit D and some calcium, no sugar and no Vit A but 23 grams protein. The mocha latte one is the only good one with real coffee to satisfy that taste crav for me. I do misbehave at times and indulge in a little 70% cacao dk choc and even eat a grilled chicken salad in a high end restaurant knowing it is not organic etc………but I am vigilant and careful what I eat. One thing I have noticed on treatment is my craving for potatoes which I did not eat but for sweet potatoes. I do eat organic ones when I do and will probably stop after treatment and craving goes - I hope….yowsers!! Since treatment I have taken the 400mg VitD a few times but found it aggravated the itching so I stopped and it helped. Even the Twinlab Allergy D3 caps had same affect.

Tess1971 · « **Reply #22 on:** October 22, 2014, 01:56:33 pm »

Has anyone found themselves being a bit dizzy and spacey during treatment. I find that on and off lately……..not sure what to think. Feel like I am drugged sometimes hahaha

Bucky · « **Reply #23 on:** October 22, 2014, 02:20:32 pm »

Quote from: Tess1971 on October 22, 2014, 01:56:33 pm

Has anyone found themselves being a bit dizzy and spacey during treatment. I find that on and off lately……..not sure what to think. Feel like I am drugged sometimes hahaha

Tess,
Yes, I was a little dizzy & spaced out until the fog lifted. I was also sleepy sometime and I just took a nap and was good to go. I am now seven weeks post meds and I really feel good.
I also had the cravings for sweet potatoes. I told my wonder sister about it and she went to her neighbors and got me a big bag of them that they had grown. They sure were good, but they gave me hella gas.
Bucky

Tess1971 · « **Reply #24 on:** October 22, 2014, 02:54:33 pm »

How long for the the fog to lift? ha

Bucky · « **Reply #25 on:** October 22, 2014, 03:26:51 pm »

Quote from: Tess1971 on October 22, 2014, 02:54:33 pm

How long for the the fog to lift? ha

Tess,
Seem like it was about six weeks in. A lot of people have posted on here about the fog and how much clearer they could see as well. Are you taking Sovaldi & Olysio or Sovaldi & Rivavirin?
Bucky

Tess1971 · « **Reply #26 on:** October 22, 2014, 09:45:10 pm »

sovaldi and ribavirin

willie g · « **Reply #27 on:** October 23, 2014, 02:46:24 am »

HEY DESERTGUY, i read a study on that cannabis thing, it just said""" All is ok,,they just said,Don't use a BONG ,lol. Toke away my friend ,, i bent down the other day,, butt showing,, and someone said ,DAM WILLIE G. YOU HAVE MORE CRACk than HARLEM! Just "willie g

Ronaldo · « **Reply #28 on:** October 23, 2014, 02:03:14 pm »

I know some health conscience cannabis smokers, two who have completed treatment with success. They claim that the safest way to smoke was using a vaporizer. I think its the best way, but they are a little pricy. I tried it and it is much cleaner but I didn't invest in one. Twelve weeks maybe not that important, but for recreational users it would be a good idea. Please don't drive under the influence if you do use it.

Tess1971 · « **Reply #29 on:** October 23, 2014, 03:43:18 pm »

Ronaldo - There are cheaper manual ones on the internet. I know people with them. Looks like a a regular pipe with an extra chamber on top that does the vaporizing. They are about $25 plus shipping. They refer to them a portable ones and for people who have never used a vaporizer before.

willie g · « **Reply #30 on:** October 23, 2014, 08:30:57 pm »

TESS your a trip lol,, we are going to get you a job as editor of the magazine HIGH TIMES your friends use them eh? you crack me up,,,, you have a great weekend and tell your friends I said '''HIGH'' lol am I on the right forum?lol [I should talk, right] ''just'' Willie g ps HEY SUE YOU SHOULD BE ON YOUR 17TH OR 18TH DAY,, YAHOOO

Tess1971 · « **Reply #31 on:** October 23, 2014, 09:06:07 pm »

You liked that, huh?

willie g · « **Reply #32 on:** October 24, 2014, 11:21:39 am »

I sure did TESS thx for the giggle. ''just''willie g

lporterrn · « **Reply #33 on:** October 24, 2014, 11:36:47 am »

I am not straight-laced or judgmental about these posts, but I care about you all, and if you are concerned about privacy, the Internet is not the best place for these conversations. Otherwise, be my guest.

Ronaldo · « **Reply #34 on:** October 24, 2014, 01:19:39 pm »

Thanks Tess I'll check it out. I am not worried about privacy on this topic. I live in a city where it raises few eyebrows. I had a police officer in my house after I was burglarized. He said what did they steal, well they stole my shotgun, digital camera and my weed. He didn't react to that as a surprise revelation I was not promoting the cannabis I was discussing something that helps me with side effects. I really don't recommend a rookie try it. The effects of it may be more than you can handle and it is much more potent than 20 years ago. Good luck to everybody I just finished my first 7 weeks and realized I take my last pills on Thanksgiving day. How cool is that?
One more thing you should not use any substance you are ashamed of. I quit all of those years ago.

lporterrn · « **Reply #35 on:** October 24, 2014, 02:49:39 pm »

Ronaldo - hoping it is the best Thanksgiving ever!

willie g · « **Reply #36 on:** October 24, 2014, 03:12:29 pm »

that darn LUCINDA is right again,,, as we get to know each other better we become PARTNERS [in crime lol] ya gotta love her ''just'' willie g thx LP

willie g · « **Reply #37 on:** October 24, 2014, 03:18:27 pm »

I THINK I'm on to something here,, lets start a HEPC REALITY SHOW,, this is our big chance LUCINDA,,,,, '''just'' Willie g PS just folks on this forum and magazine can be on it lol

lporterrn · « **Reply #38 on:** October 24, 2014, 04:44:20 pm »

Hey "just" Willie - maybe I should now sign my name "that darn" Lucinda

Ronaldo · « **Reply #39 on:** November 04, 2014, 12:35:37 pm »

Lucinda I have a new question for you. I called for my 8 weeks lab results. She told me that my white blood cell count was a little low. I asked if that was alarming and she said no I would have called you if it was. I read about the low count and they had some possible medical reasons. The chemo kind of caught my attention. I was hoping you could tell me in Layman's terms. thanks

lporterrn · « **Reply #40 on:** November 04, 2014, 02:27:14 pm »

There are different causes, depending on what meds you are on - please remind me of what you are taking. I do know from prior threads that cannabis may be one, which will lower both white and red cells. Decreased white cells =lowered immune function (except if you are taking interferon - where your immune system is boosted but whie cells are lower.
Decreased red cells = lots of problems, including fatigue, impaired oxygen to cells, etc.

I am not against cannabis use, but just like any drug, it has its risks. This may be one...

Ronaldo · « **Reply #41 on:** November 04, 2014, 11:01:53 pm »

I'm doing the olysio/sovaldi treatment going on week nine. The cannabis is not new, but the low white blood cell count is new. I assumed they had tested that at 4 weeks, but I've never had this mentioned in a lab result. I also take 2 meds for high blood pressure and 2 for depression. 1000 iu D3 daily. No alcohol and no narcotics.

Doluska · « **Reply #42 on:** November 05, 2014, 07:28:10 am »

Hi Ronaldo! Can you sare with me weach antidepressant you are? My hepatologyst stoped Pristiq, that I was on and transferred me to Wellbutrin. They did it so drastically, that on top of side effects of Cosmos I have horrible withdrawal effect. Chek for inrteraction of olysio and your antidepressant. It is important! Good luck with your treatment. D

Ronaldo · « **Reply #43 on:** November 05, 2014, 12:00:48 pm »

hi Doluska, I take Prozac and Wellbutrin for depression. The clinic I go to has been my provider and all scripts have been from this source. The same clinic is doing the O/S treatment and they reviewed all my meds before I started. I remembered something last night that I need to add. I had to go to the ER Sept. 27th for a badly swollen lips and cheek on one side. I looked like I was in a fight and lost. I had no pain but I didn't have any idea what caused it. The ER doctor prescribed 3 days of Prednisone (an oral steroid) and Hydroxyz Pam (antihistamine) for 4 days. I went to the 8 week lab on Sept. 30. The ER doctor researched drug interactions to make sure it wouldn't interfere with my hep c treatment.

Doluska · « **Reply #44 on:** November 05, 2014, 12:42:19 pm »

Hi! My doc. Put me on Wellbutrin , consulted my shrink - she told me that it not covers anxiety. I am second week on S/o + RIBA. And first week was so good, then my condition changed in 1 day, not slowly or gradually, Bum! And you are so miserable! Nousea, sleepiness , head spinning , fatigue. I am totally knocked down. Don't know how I will pull 12 weeks. Is it getting better later? Or I going to sink deeper and deeper. I am sorry for nagging, but seeking any information and advice. Thank you, doluska

melody · « **Reply #45 on:** November 05, 2014, 04:13:09 pm »

Steph, how are you feeling?

willie g · « **Reply #46 on:** November 05, 2014, 11:13:48 pm »

hi crysmel. no not Hawaii, but just as peaceful, in the mountains, no phones no internet and lots of stars, take care buddy,, ''just''willie g

willie g · « **Reply #47 on:** November 05, 2014, 11:15:47 pm »

SUNRISE, your moving right along, still praying for you as well as the rest of the banditos, ''just'' willie g

sunrise · « **Reply #48 on:** November 06, 2014, 10:53:28 pm »

Hey Willie g!! Thanks for prayers and remembering me! Hope you are doing great and still UD! I got my blood tests back 4 weeks vl undetected! !!! So happy. Sending love through the world wide web...:-)

willie g · « **Reply #49 on:** November 07, 2014, 07:35:01 pm »

GOOD FOR YOU SUNRISE! I'm doing well, I have been in the MT's. no internet etc. got back a few days ago. I know your probably not going to believe this but I saw this huge thing, all black 6 foot 2 and ugly as all get up! I got hold of the forest rangers and had them come up and check it out. they looked and then asked,,''is this where you were standing sir?'' yes sir that's it''' he then said what's that mirror doing there?''' oh, I shave with that sir and when I get burs in certain places I squat around to pick them off!.. so he said,, well you fool that was you you saw in the mirror and the all black stuff is an area I am not going too,,sir,, ?? yes sir I replied,, he then said ,''I think its time you went home and took a bath and take that mirror with you! ''''just''willie g

sunrise · « **Reply #50 on:** November 07, 2014, 07:45:45 pm »

Hey Willie g
Good to hear you were able to get into the wilderness! Looks like you brought your humor back home. Good thing. Yes all is well. Hopinvg everyone in here gets healed! Have a wonderful Thanksgiving! We all have sooo much to be thankful for.....

lporterrn · « **Reply #51 on:** November 10, 2014, 03:15:11 pm »

Hi Ronaldo - sorry I dropped off the forum this week and am now catching up. I am not sure what the cause is, but let me know when you get the results of your next CBC and see if it is lower, OK?

Ronaldo · « **Reply #52 on:** November 18, 2014, 01:31:10 pm »

Lucinda I had not checked in lately, I have 8 days left on the meds. I should have nine I apparently double dosed recently by accident. I have been sick at my stomach a few days and I guess double dosing could have caused that. I was thinking it was just the buildup of the drugs until I counted my pills and double checked the calender. I had a countdown calender like inmates in prison. good luck everyone

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Author Topic: After taking the newest drugs (Sovaldi etc) (Read 36034 times)