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Post Info TOPIC: Help needed ASAP for leg/foot cramps
Tig


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I'm happy to hear you're doing so much better. Everything you're doing sounds great, except for that teaspoon of salt! The extra hydration is always a great way to help control side effects. A valuable suggestion!

 



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Here's what helps the cramps and other muscle soreness on Harvoni: 3-4 liters of water per day (big help!), and replacing electrolytes flushed out from so much water.  

I get the potassium from eating an orange. I drink a teaspoon of sea salt mixed in a small glass of warm water. I have a smoothie for breakfast that includes spinach/kale (magnesium), banana (potassium and magnesium) and whatever else I want to throw in. I eat toasted pumpkin seeds from Trader Joe's (magnesium and potassium). No more cramps and very little muscle soreness.



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Hi, I have restless legs too and am still having cramps.  I will wait to see if they settle down or if I can do anything else.

N



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Wanted to check back on this post and wow missed some replies.  I thank you all for them.  My fibroscan shows me at F1=F2 with an unremarkable liver ultrasound.  As far as my legs/foot issues go.  Yes I work on my feet.  And I usually hike a couple miles a day with my dog in the woods.  It's my natural valium to survive stress and stuff!  Haven't been getting out much since it's been muddy and icy.  Having to bath him after it isn't on my list of important things to do lately.  So we have been walking some indoors on concrete which isn't helping my legs and feet.  I am still having the problem.  I had blood work which came up normal just in case.  I reported to Gilead and to the FDA that I was having this issue suddenly.  It feels like my hamstrings are super tight.  Which can cause the foot thing too I read.  Will have to find some stretching exercises to do.  I have 13 days left.  Worried 8 weeks won't be long enough.... but won't miss taking the pills anymore honestly.  I have found others on forums having some restless leg issues and cramps too.  Time will tell if this needs a foot doctor or if it will resolve after treatment.



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GT 1b first time treating with Harvoni 8 weeks.  4 weeks UND 8 week UND.  8 weeks after treatment UND.

 12 weeks SVR.  Reached 24 weeks SVR!



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I haven't read thru all the posts - just your first one so I apologize in advance if I'm saying something already said.

When you mentioned the ball of foot pain - I recognized that pain immediately.  I had the same thing - not during treatment mind you as I am not on Harvoni yet but I have had that piercing pain on the  ball of my foot / into toes.

I used to  hike all the time and started having similar pain.  For me it was morton's neuroma - a pain normally radiating between your toes.  The nerves in that area become aggitated - people who are on their feet a lot get this. And over time the nerve tries to protect itself by surrounding itself with a shell. So you have this swollen painful nerve in a protective coating and when you walk you put pressure on it and it can be screaming painful. If  you haven't been to a foot Dr yet I would recommend doing so.  If that's what it is, first they will give you steroid shots and if that is not good enough you can have the nerve removed; which is what I ended up doing. No issues with the nerve being removed, it can eventually grow back but the pain is gone & I was able to hike again w/o pain. 

Also, I don't know what you do for work but if standing a lot it could be the drugs are just causing you to feel the effects of it more than you did before? I would do some good leg stretches, look up some yoga stretches and the supplements noted below are good too.

OH MY GOSH!!!!!!!!!!!! While I was keying this in Gilead Support called me and just said I was APPROVED for Harvoni!! ONE WEEK - only one week after I submitted my Intake Form and documentation!!! My insurance denied me twice so I gave it a go.  I've been off work since mid-Nov due to side effects and was getting nervous about how long I'd be out - now I can see the lite at the end of the tunnel.  I've never been so excited about killing something in my life!!!



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Diagnosed 10/04 / VL 12.7 M / Genotype 1b - Grade 2, Stage 1 / 2007 -Pegylated Interferon & Ribavirin - Stopped Due to Sides / 2011 - Telaprevir, Interferon & Ribavirin - Stopped Due to Sides / APR 2015 - COMPLETED HARVONI So Far Undetectable :) 



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I use magnesium for leg cramps.  A friend who did the clinical trial for Harvoni was allowed to use magnesium for constipation during her trial BUT check with your doctor and see if they can check your magnesium levels. 



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Geno 1A  Age 82 Treatment naive Cirrhotic Told I had liver disease in 1966. Diagnosed as Hep C 1999.Started Merck clinical trial with Riba on 9/9/2013 Week 1 and 2 <25  Weeks 4, 8, 12,16,18 UND.  EOT Jan 14,2014  EOT +12 UND   JULY 1 2014 EOT+24= SVR



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Fourlococs, I dont know what stage your liver is but foot cramps and muscle cramps are common in cirrhotics . I used to get them and  when I improved diet and hydration cramps went away.  Michaele

 



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MDodrow


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While I wait for some more blood test results my primary doctor ordered yesterday, I will buy some tonic water.  She spent a long time with me yesterday at our visit.  She admits she knows nothing about Harvoni since it isn't her field.  She refers.  Now that I am having some of the same things in my other foot it's becoming more likely that the treatment is causing it rather than something else.  I should know my test results by tomorrow.  Either way I will limp through three more weeks.  I won't take anything that would compromise treatment.  I expressed my concerns with the doctor she referred me too.  That I can't speak to him and don't really like his office.  She offered, generously to refer me out the HMO group to the Unv of Chicago or Loyola to consult with someone else and be sure that my 8 weeks is enough rather than 12 weeks.  I appreciated that but with only three weeks left, I don't think I would get in with someone and get through the insurance maze in time.  I best let it be and hope for the best. 



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GT 1b first time treating with Harvoni 8 weeks.  4 weeks UND 8 week UND.  8 weeks after treatment UND.

 12 weeks SVR.  Reached 24 weeks SVR!



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Doc said Yes to the Tonic Water for cramps

He reminded me we did have the conversation ( before Harvoni TX) and it fine to use it with Harvoni for cramps. He recommended the diet- Tonic water too much sugar in Reg. Not that artificial sweetener is any better for you ( he must have a pet peeve about sugar ) I must be crazy to get so excited about Tonic water without Gin or Vodka So back to the train with a bottle of Tonic.



-- Edited by Bills on Tuesday 13th of January 2015 03:27:40 AM

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Harvoni started 12-12-14 for 24 wks PrevTX Geno 1 stage 3 cirrhosis - non resp Int/ ribv. Started Trial  in Aug 2011 -July 2012 into Incivek relapsed  Feb 2013 Had 72 weeks on interferon & Riba.



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Hi

Eat foods rich in Magnesium , Potassium and Calcium . Keep hydrated .  Michaele    

 

 



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MDodrow


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My Dr. Was the one that recommended the tonic water, i used it during my S/O tx and it had no effect on me going on to SVR, but  ya gotta do what you feel comfortable with.

Only other thing that helped was soaking in a hot tub, or a hot shower and within minutes they were gone.



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53yr M 1a acq 12/83 cirr pre tx MELD 17  tx nv diag 1/29/12  tx S/O 3/5/14  trans list.

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I just need to put out my disclaimer on Tonic and Quinine ( WATER ) . I've heard nothing good or bad for us Hep Cs on Treatment or Not, I only say it helped me when I needed it. and yes working out a stretch bend or flex  jump up and down too. I hoping it has no negative affects on treatment. I only use it when it happens bad  but  i'll ask my doc Monday and report back

Thanks



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Bills

Harvoni started 12-12-14 for 24 wks PrevTX Geno 1 stage 3 cirrhosis - non resp Int/ ribv. Started Trial  in Aug 2011 -July 2012 into Incivek relapsed  Feb 2013 Had 72 weeks on interferon & Riba.



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Hiya 4L

When my foot gets cramped I do like Tig said and lift my toes. The cramps stop right on the spot. My cramps aren't from tx I always get them now and again.



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We will see how I do for four hours Saturday and sunday doing my demo.  I have a foam pad to stand on which does help some. 



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GT 1b first time treating with Harvoni 8 weeks.  4 weeks UND 8 week UND.  8 weeks after treatment UND.

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Very nicely said Tig sometime I am overwhelmed by the way we get support here  Thank You all

BillS

 



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Harvoni started 12-12-14 for 24 wks PrevTX Geno 1 stage 3 cirrhosis - non resp Int/ ribv. Started Trial  in Aug 2011 -July 2012 into Incivek relapsed  Feb 2013 Had 72 weeks on interferon & Riba.



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Bills my mother in law used to wake with horrible leg cramps and used quinine pills.  They took them off the market I think it was so she wasn't able to get relief as much after that.  I don't think I want to mess with my treatment by taking anything right now unless I am totally unable to handle the pain.  It isn't happening unless I walk on it.  It is fine while sitting or laying down. 



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GT 1b first time treating with Harvoni 8 weeks.  4 weeks UND 8 week UND.  8 weeks after treatment UND.

 12 weeks SVR.  Reached 24 weeks SVR!



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You are all such wonderful people!  I just had to say that.  I decided to wait till Monday morning to see my regular doctor rather than start up with someone new today even though I appreciated them offering to get me in.  I love my internist and felt she would be more understanding.  I just got back from walking my dog (inside the pet store due to sub zero temps) and I was fine for some of it and then the pain would shoot through me.  I just plugged along regardless.  My dog doesn't understand my pain LOL.  It doesn't help that I have had to wear clunky winter boots rather than shoes this past week or so while doing laps with him on concrete floors in petsmart.  I am going to try soaking and stretching.  I am guilty of slacking off on my water intake lately.  I am doing half what I was in the first few weeks.  Just don't feel thirsty at all.  But I am trying to sip constantly anyway.  As long as it stays in just one foot and not both I will limp along and try to work it out.  Thanks so much.



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GT 1b first time treating with Harvoni 8 weeks.  4 weeks UND 8 week UND.  8 weeks after treatment UND.

 12 weeks SVR.  Reached 24 weeks SVR!



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I've done Tonic and yeah without Gin Yuk. But it does work i've been using when necessary last few years.  Maybe my bad but yes I've done it on this treatment. I had it in the night while sleeping and wakes me up, i need to get up and walk / stretch but it works enough pretty quick to calm it

Does anyone one know or heard  if taking Tonic / Quinine water  is or isn't  recommended on treatment?

BS



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Bills

Harvoni started 12-12-14 for 24 wks PrevTX Geno 1 stage 3 cirrhosis - non resp Int/ ribv. Started Trial  in Aug 2011 -July 2012 into Incivek relapsed  Feb 2013 Had 72 weeks on interferon & Riba.

Tig


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I came back to see how 4L was doing and want to say something. I first saw 4L's plea for assistance here and fortunately (hopefully) was able to provide her with some recommendations to alleviate her discomfort. But then I witnessed the outpouring of concern for her, in short order I might add and I simply want to tell all of you that it is this kind of concern, for each other on a moments notice, that makes this the outstanding forum that it has become. I just want to thank all of you for being the kind of people you are, caring and concerned. In this world today, we need more people just like you. Thanks for helping, it does matter...

Tig          



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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So sorry Fourlocos. I understand your pain as I have had some of the worst leg/foot cramps recently. What works for me is to go ahead and put opposite pressure on the offending tendons, gently! I use wall stretches that I learned from a bout of plantar fasciiatis. Make sure you relax and deep breathe when you are stretching.

And make sure you are drinking lots of water. My daughter recently introduced me to fruit infused water. Take a wide mouthed water bottle and add thinly sliced citrus fruits and I use a handful of Costco fruit smoothie fruits you can create your own favorite blend. Sometimes I add chia seeds. Then a couple ice cubes and fill the rest of the way with water and shake it up. I've had a whooper of a cold recently and this is great for a sore throat, too!

Just a couple suggestions that have worked for me. Good luck with your leg/foot cramps.



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62 y/o F     Genotype 1b  for 40+ years    cirrhosis    Started Harvoni  on 11/23  for 12 weeks       UND  12/22/2014     Ended treatment on Feb 15th.

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Dzdayscomin wrote:

Another thing that can help is Tonic water...( hold the gin) it works similarly in reducing cramps caused by malaria ......tastes crappy without the Gin but if you mix it with say lemonade it's tolerable.

 


 I don't know about this tonic without gin idea. That's like Hall without Oates. 



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Geno 1b, compensated cirrhotic, 54 yo, prior null responder. Pre tx VL approx 595,000, tx with Sovaldi/Olysio (no Riba) started 1/8/14. VL 40 @ 2 weeks, UND @ 4 weeks. Still UND @ EOT + 1 year.

Gator Man SVR12, Dragon 0, Final Score.



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I had hand and leg cramps prior to starting S/O treatment. At the time I thought it was just from over exercising, although I now realize that cirrhosis and vitamin and mineral deficiencies, including magnesium, could have been the problem. I've had very little cramping since I started S/O a year ago. My wife has taken Calm that Rob mentioned and referenced in Tig's article for years. It is not as harsh as magnesium citrate and you can tailor the dosage as needed.

I certainly wouldn't take anything 4L, that wasn't approved by your doctors and pharmacist. Proper hydration while on Harvoni or other HCV meds is a good idea so Greg may be on to something. 



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Geno 1b, compensated cirrhotic, 54 yo, prior null responder. Pre tx VL approx 595,000, tx with Sovaldi/Olysio (no Riba) started 1/8/14. VL 40 @ 2 weeks, UND @ 4 weeks. Still UND @ EOT + 1 year.

Gator Man SVR12, Dragon 0, Final Score.



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Another thing that can help is Tonic water...( hold the gin) it works similarly in reducing cramps caused by malaria ......tastes crappy without the Gin but if you mix it with say lemonade it's tolerable.

 

Plus the nice thing is it's pretty benign as far as effects on the body, Magnisum helps too, but can present it's own sx's.



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53yr M 1a acq 12/83 cirr pre tx MELD 17  tx nv diag 1/29/12  tx S/O 3/5/14  trans list.

EOT 5/28/14 UND 6/12/14 SVR 8/29/14 MELD 14 dx HCC 9/5/2014 tumor ablation 9/24/14

In the 10K lakes State It's not about us but those around us.



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I would hate to over simplify this but are you sure you're drinking enough water? Athletes cramp up all the time if they don't hydrate enough. You are probably not exerting yourself as much as they would but you seem very busy and in combination with the meds...? Just a thought 4L.



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Wow great article.  I had like almost all the symptoms on the list!  The problem will be taking it while on Harvoni.  I know most of us opt to not take anything till after treatment.  Will let you know if a blood test reveals anything. 



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GT 1b first time treating with Harvoni 8 weeks.  4 weeks UND 8 week UND.  8 weeks after treatment UND.

 12 weeks SVR.  Reached 24 weeks SVR!

Tig


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I'm glad you had a chance to speak with your healthcare team. I'm keeping my fingers crossed for you! I looked up some info on magnesium and found this interesting website that discusses it. I thought you might enjoy reviewing it. Good luck...

http://wellnessmama.com/3610/magnesium-deficiency/

Tig



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Excellent help from both of you... thanks.  I see the doctor this afternoon and hopefully will test my blood.  The pharmacist informed me that should it be a low magnesium level, to call her first.  She said that magnesium will lower my stomach acid ph and that isn't good with Harvoni.  So she will first discuss with Gilead and perhaps dosing 12 hours after my pill will allow me to use it.  She then mentioned that some drugs will cause tendonitis and she wondered if that might be happening in my foot?  In which case it's inflammation.  I think due to the leg cramps for the past couple weeks it's more related to that.  Either way lost another day of work today.  Somehow I will work the weekend.  I will limp through it and try to stifle my screams LOL.  Not sure how much help the primary doctor will be later today since they don't know anything about the treatment hence the reason they referred me to the specialist, who in IMHO is a moronic insensitive jerk.  I am stuck with him till I finish up and now more than ever hope I am cured eventually so I won't have to see him again.  I am not sure I would even risk taking magnesium even if it's low.  I will try eating bananas, drinking tonic water (read that can help) and try to brave through it if possible.  I don't want to risk messing up my treatment. 



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GT 1b first time treating with Harvoni 8 weeks.  4 weeks UND 8 week UND.  8 weeks after treatment UND.

 12 weeks SVR.  Reached 24 weeks SVR!



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These meds seem to have a track record of causing muscle issues. Tig nailed it on the Epsom Salt for a bathtub soak. If absolutely necessary, and only after clearing it with your doctor, Magnesium in the powder form will work wonders. There's a product called "Calm" that you can find on Amazon that is very effective and absorbs through your stomach when mixed with warm drinking water. Just don't use too much as it will loosen your digestive system up too.

Potassium from bananas will probably help with adequate water intake (2 liters/day). I hope these suggestions offer some relief. Hang in there!

-Rob



-- Edited by Fireman Rob on Friday 9th of January 2015 03:38:57 PM

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Tig


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I'm so sorry you're having these problems 4L. I know how miserable muscle and nerve related cramps can be. You may indeed be lacking something as a result of treatment, a mineral deficiency or the unknown. Until you can see your doctor today, try the OTC pain relievers, Tylenol or Ibuprofen and sit your feet it hot water soaks. Try some Epsom salts, my Grandma swore by that for muscle aches and pains. If you have a heating pad, you might wrap your foot in it and try to relax the muscle. Good luck!

Tig

PS: One other thing is to put your hand under your toes and push up, pull your toes back together. You're trying to stretch those muscles, tendons and ligaments. It often helps athletes with foot cramps!



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Hi I am on my 5th week of Harvoni.  I had subtle leg cramps during the past couple weeks but tolerable.  I never had one before so I was okay but assumed it was from treatment.  Well that has changed.  It moved to my left foot.  The ball underneath into my toes.  It is a drop me off my feet screaming pain.  Over and over again a few times an hour if I try to walk.  Waited till morning to call the GI doctors office.  His nurse, which I have reported, is a nasty woman.  She told me she would discuss with the doctor but she felt it was not treatment related.  I was surprised.  She called back and said that I should call my primary doctor and perhaps she would run a blood test to check some levels that their office thinks its not Harvoni related.  It sure is!!  I have never had cramping before.  So the primary is seeing me this afternoon and will run some blood work.  I can't make it to work and I have to demo all weekend also which won't happen now.  Sigh......

I wanted to know what might be causing this?  Any ideas?  I am freaking out because, call me crazy, I need to walk!



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GT 1b first time treating with Harvoni 8 weeks.  4 weeks UND 8 week UND.  8 weeks after treatment UND.

 12 weeks SVR.  Reached 24 weeks SVR!

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