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Author Topic: Long term effects of olysio and sovaldi  (Read 15548 times)

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Offline tsita

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  • Posts: 7
Long term effects of olysio and sovaldi
« on: July 29, 2016, 06:38:39 pm »
I would like to know what the long term effects of these drugs are.  I am cured, for which I am grateful but I am still exhausted most of the time and have a hard time getting through the day.  I also have a lot of headaches.  Any information would be appreciated.

Offline KimInTheForest

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Re: Long term effects of olysio and sovaldi
« Reply #1 on: July 29, 2016, 06:39:52 pm »
Hi tsita. And welcome to the forums! When did you finish your treatment?

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline tsita

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Re: Long term effects of olysio and sovaldi
« Reply #2 on: July 29, 2016, 07:57:49 pm »
About 18 months ago.

Offline KimInTheForest

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  • Believe in yourself
Re: Long term effects of olysio and sovaldi
« Reply #3 on: July 29, 2016, 10:16:33 pm »
About 18 months ago.

That's a long time. Do you feel worse than you did pre-treatment? If so, I hope you are seeing a doctor. Would be useful to start with a CBC (Complete Blood Count) and go from there. See if anything stands out.

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline tsita

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  • Posts: 7
Re: Long term effects of olysio and sovaldi
« Reply #4 on: July 29, 2016, 11:04:30 pm »
I have seen my doctor and have had bloodwork of many kinds including a thorough test for hep c and I am still undectable.  My thyroid count was high so I am on medication for that, but it did not help the fatigue.  I even had a sleep apnea test.  I have a friend who is just like me.  There must be others out there who are experiencing the same thing.  Thanks for your reply.  Terry

Offline Lynn K

  • Global Moderator
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  • Get tested, get treated, get cured, fight Hep c!
Re: Long term effects of olysio and sovaldi
« Reply #5 on: July 29, 2016, 11:37:52 pm »
Unfortunately as these meds were only approved in the last couple of years November and December 2013 as I recall there is no long term data as only the clinical trial patients were on these treatment before 2 1/2 years ago.

My best suggestion is to work with your doctors and also contact Gilead and Janssen to report your situation.

Hope you feel better soon
Lynn
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline beto

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  • Posts: 548
  • "no risk it, no biscuit"
Re: Long term effects of olysio and sovaldi
« Reply #6 on: August 10, 2016, 12:51:43 pm »
Hello tsita,

I am about 10 months post from Harvoni.  I have had thyroid issues (specifically sub acute thyroiditis)  so my thyroid was hyper for a while and now hypo with occasional flare-ups of high thyroid.  I have done some digging as is my nature.  I have found that thyroid difficulties are not uncommon for folks that have had Hep C and received treatment for it.  Most of the literature that I discovered was based on Interferon/Riba  treatment. When you say "high thyroid" did you mean high TSH?  or high T3/T4.  High TSH is indicative of low (hypo) thyroid.

Viruses of all types can attack the thyroid, however, our immune systems (auto-immune) can do the same and this is the common cause of hashimotos and Graves.  I mention this because, there may be a link to HepC cure and auto-immune conditions.  Much has been written on this site about the sudden removal of a retrovirus that has been a part of out biology for many years.  This is all speculation of course, but there are lots of indications of the possibilities of auto immune reactions as out systems adjust (observations).  I have no idea what percentage of folks are having EOT issues and of those, how many have positive immune markers.  My issues may have happened regardless...I will never know.

As for the drugs (DAA's) causing some kind of damage in some folks...well, if that is the case we will all have to wait a few years for studies.  In the meantime, if I were you I would have your doctor test for immune markers (RA, CRP, etc) but that is just my 2 cents  :).

  Good luck.  I seem to be improving from my issues finally...knock on wood. 
HCV/nonA,nonB acute phase 1975
HCV detected active 1990
HCV persistent chronic diagnosis 1995
1995 liver enzymes mild elevations
1996 Biopsy F2 fibrosis
treatment naive geno 1-A
2000-to early 2015 Viral load 150, 000 to 800, 000
recent liver enzymes before treatment alt/ast 59to209,  Fibroscan F4,cirrhosis
start tx Harvoni 7/11/2015
6.5 week-UD-ast/alt 25/25
9wk-UD-ast18 alt23
10/3/15 completed tx
11/5/15 new fibroscan f0-f1 amazed
6wk EOT UD ast/alt 20/20
12EOT-UD-ast/alt19/21
25wk-SVR! 19/18

Offline JimmyK

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  • Posts: 18
Re: Long term effects of olysio and sovaldi
« Reply #7 on: August 10, 2016, 02:07:10 pm »
Greetings,

I am just clearing my Harvoni treatment. It followed a miserable breakthrough of another DAA where RBV was also used and tore me up from the floor up.

In retrospect one thing I know is that I have never before March of this year been 63 years old. I have been preoccupied for some time Dragon Slaying and am just now coming to a rest from that adventure.

Once I set down the sword and shield it occurred to me I have not had the time to think about how I should feel at 63. In other words, what is considered normal at my age? How should I feel? Fact is I don't know, but I suspect we all tend to attribute how we feel with post treatment side effects.

During treatment many take it easy. Some actually develop a certain stage of atrophy yet don't do a whole lot to regain strength lost. Then they find themselves facing an age they have never been at before with possible expectations or at least comparisons of where they were. But what is normal?

Take Hep C and DAA's out of the picture for a moment and we see fatigue setting in with age. Testosterone levels decrease as an example only.

That person who does not have the history we do often asks the same questions. "Why do I feel so tired and wiped out?"

The answer for them is likely the same answer for us.
Diet and Exercise. The old no pain no gain applies and I honestly think it can be a pathway to better health and well being.

Every cell in our body is replaced and the incoming ones can be maintained or bettered via diet and exercise.

Warm Regards!

JimmyK


Gen 1a HCV PCR Q 3880000, ALT 94 AST 58, F2
Tx 1 Viek/Rib x 12 SOT 10/15/15 Breakthrough_Treatment Stopped 12/29/15

Tx 2 Harvoni x 12, SOT 04/15/16, EOT 07/07/16, UND week 4 and 12. EOT + 4 Weeks 08/04/16 will repeat HCV RNA to determine status due to NS5A and NS3 findings at EOT TX1 12/29/15. (M28T and Q80K,D168Y)
Considered an "interesting" case. Update EOT + 4 Weeks HCV RNA came back UND. On to 09/29/16 for SVR 12.

Offline dragonslayer

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  • Posts: 873
Re: Long term effects of olysio and sovaldi
« Reply #8 on: August 10, 2016, 05:00:51 pm »
Jimmy, I couldnt agree more.. Its very tempting to look to the treatment as being the cause of some unforeseen symptom,  or 'side effect'.  But take the universe of individuals who are past 60 and never had HCV or its' treatment, and is it so unusual to hear an abundance of complaining about this symptom or that from that group?

Fact is, its all too easy and convenient to conflate correlation with causation... Sometimes, the symptom may really be caused by the treatment... And often, it's not.
Paul

DX 2008
Started Harvoni 11/26/14 for 8 wks
Completed 8 wks Harvoni 01/20/15
EOT RNA Quant result:  Detected 29
7.5 wk post tx: Detected < LLOQ(12)
11 wk post tx: UNDETECTED SVR12
24 wk post tx: UNDETECTED SVR24; AST 26; ALT 22; ALP 73
48 wk post tx: UNDETECTED SVR48; AST 18; ALT 18; ALP 70
GT 1a
vl 2.4mil
2008 bpx: Stage&Grade 0
2013 bpx: Stage&Grade: 0-1
IL28B: TT
likely infected early '70s

Offline tsita

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  • Posts: 7
Re: Long term effects of olysio and sovaldi
« Reply #9 on: August 10, 2016, 05:37:26 pm »
You are right that I do not know what it should feel like to be a normal 72 yr. old however in observing others, I do not feel this is a normal fatigue.  My T3/T4 was high and thyroid problems are a known side effect of hepatitis. I take Synthroid for that.  My sed rate is elevated indicating an inflamation of something.  I was tested for many things including Graves disease, Lupus, etc. all in the normal range. I have had hepatitis c  since I gave birth to my son, 42 yrs. ago.  My doctor is still trying to find out what is causing the inflamation.  Perhaps it is just the effect of hep c on my body or perhaps it is the medication.  I was given interferon/ribaviron 12 yrs ago which was very hard on me, many side effects and relapsed.  18 months ago I took olyssio/sovaldi and I am still undetectable.  I have one more doctor to visit and then I must accept what I am and that I have many limitations.  Do what I can when I can and forget the rest. I do eat right and walk for exercise.  For many years I helped my husband with the horses.  We raise Thoroughbreds.  In Feb. one of them knocked me down and stepped on the back of my left thigh.  Very painful.  Took 4 months to recover.  I am no longer involved, no more horses for me. Thanks to all of you for sending an answer. Terry S.

Offline JimmyK

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  • Posts: 18
Re: Long term effects of olysio and sovaldi
« Reply #10 on: August 10, 2016, 05:48:37 pm »
T all I can say is you sound like an incredible woman.

I remember being younger and never for a moment imagining the possibility of reaching 55 let alone where I am today.

It is all quite a gift and yes that includes the pains I suppose.

God bless!   :)

JimmyK
Gen 1a HCV PCR Q 3880000, ALT 94 AST 58, F2
Tx 1 Viek/Rib x 12 SOT 10/15/15 Breakthrough_Treatment Stopped 12/29/15

Tx 2 Harvoni x 12, SOT 04/15/16, EOT 07/07/16, UND week 4 and 12. EOT + 4 Weeks 08/04/16 will repeat HCV RNA to determine status due to NS5A and NS3 findings at EOT TX1 12/29/15. (M28T and Q80K,D168Y)
Considered an "interesting" case. Update EOT + 4 Weeks HCV RNA came back UND. On to 09/29/16 for SVR 12.

Offline tsita

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  • Posts: 7
Re: Long term effects of olysio and sovaldi
« Reply #11 on: August 10, 2016, 06:06:28 pm »
Thank you Jimmy.  I don't feel incredible.  Anyone who has had hep c has had to deal with a lot of aches and pains and fatigue.  Glory be to God, it is now gone, and I know He will help me with the rest.  It could be worse.  Thanks for writing and caring.  All of you are in my prayers. If any of you are interested in art, I have a website.  www.terrysita.com  Terry S.

Offline JimmyK

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  • Posts: 18
Re: Long term effects of olysio and sovaldi
« Reply #12 on: August 10, 2016, 06:11:19 pm »
Thank you Jimmy.  I don't feel incredible.  Anyone who has had hep c has had to deal with a lot of aches and pains and fatigue.  Glory be to God, it is now gone, and I know He will help me with the rest.  It could be worse.  Thanks for writing and caring.  All of you are in my prayers. If any of you are interested in art, I have a website.  www.terrysita.com  Terry S.

T, those that are incredible, almost never feel they are.

Those that think they are incredible, almost never are.

We are warriors battling for those who follow. It is they who will decide.  ;)

JimmyK
Gen 1a HCV PCR Q 3880000, ALT 94 AST 58, F2
Tx 1 Viek/Rib x 12 SOT 10/15/15 Breakthrough_Treatment Stopped 12/29/15

Tx 2 Harvoni x 12, SOT 04/15/16, EOT 07/07/16, UND week 4 and 12. EOT + 4 Weeks 08/04/16 will repeat HCV RNA to determine status due to NS5A and NS3 findings at EOT TX1 12/29/15. (M28T and Q80K,D168Y)
Considered an "interesting" case. Update EOT + 4 Weeks HCV RNA came back UND. On to 09/29/16 for SVR 12.

Offline dragonslayer

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  • Posts: 873
Re: Long term effects of olysio and sovaldi
« Reply #13 on: August 11, 2016, 12:14:04 am »
You are right that I do not know what it should feel like to be a normal 72 yr. old however in observing others, I do not feel this is a normal fatigue.  My T3/T4 was high and thyroid problems are a known side effect of hepatitis. I take Synthroid for that. My sed rate is elevated indicating an inflamation of something.  I was tested for many things including Graves disease, Lupus, etc. all in the normal range. I have had hepatitis c  since I gave birth to my son, 42 yrs. ago.  My doctor is still trying to find out what is causing the inflamation.  Perhaps it is just the effect of hep c on my body or perhaps it is the medication.  I was given interferon/ribaviron 12 yrs ago which was very hard on me, many side effects and relapsed.  18 months ago I took olyssio/sovaldi and I am still undetectable.  I have one more doctor to visit and then I must accept what I am and that I have many limitations.  Do what I can when I can and forget the rest. I do eat right and walk for exercise.  For many years I helped my husband with the horses.  We raise Thoroughbreds.  In Feb. one of them knocked me down and stepped on the back of my left thigh.  Very painful.  Took 4 months to recover.  I am no longer involved, no more horses for me. Thanks to all of you for sending an answer. Terry S.

Terry, Im confused.   I take synthroid too.  Synthroid is prescribed when youre not producing enough thyroid hormone, ie, for hypothyroid condition.  Youre saying you have too much thyroid hormone.. They certainly dont prescribe synthroid for that. In addition, the effect, if any, that HCV can have on the thyroid is usually to diminish thyroid hormone ie, hypothyroidism, not increase it.
Paul

DX 2008
Started Harvoni 11/26/14 for 8 wks
Completed 8 wks Harvoni 01/20/15
EOT RNA Quant result:  Detected 29
7.5 wk post tx: Detected < LLOQ(12)
11 wk post tx: UNDETECTED SVR12
24 wk post tx: UNDETECTED SVR24; AST 26; ALT 22; ALP 73
48 wk post tx: UNDETECTED SVR48; AST 18; ALT 18; ALP 70
GT 1a
vl 2.4mil
2008 bpx: Stage&Grade 0
2013 bpx: Stage&Grade: 0-1
IL28B: TT
likely infected early '70s

Offline Mugwump

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  • My number of posts means nothing, piscor ergo sum!
Re: Long term effects of olysio and sovaldi
« Reply #14 on: August 11, 2016, 01:59:16 am »
Quote
Terry, Im confused.   I take synthroid too.  Synthroid is prescribed when youre not producing enough thyroid hormone, ie, for hypothyroid condition.  Youre saying you have too much thyroid hormone.. They certainly dont prescribe synthroid for that. In addition, the effect, if any, that HCV can have on the thyroid is usually to diminish thyroid hormone ie, hypothyroidism, not increase it.
Dragon she did mention that her T4 was elevated.

I was diagnosed in error of with Graves in 1991 before the real culprit was discovered to  be hcv. In my circumstance my immune system attacked my thyroid and caused moderate hyperthyroidism for very many years with symptoms going back to my early 20's!

So autoimmune responses to hcv infection are a very tricky and long term business indeed. It got to the point where I went on to have my thyroid nuked then went on replacement hormone even before it was discovered that I had HCV.

I have had no issues since getting on an even keel with replacement hormone for over 25 years. T3 was never an issue as the radiation treatment did not harm that function and my calcium metabolism is just fine.

From what I understand the thyroid can naturally degrade especially in women as you age and the parathyroid can also go out of functional whack. This can cause other issues and has become fairly common due largely to there being a greater percentage of ageing population. So we are living long enough to see a greater number of thyroid problems can occur with age.

All this being said I can understand how some of us will have our immune systems suddenly do things that might seem to be undefined effects post treatment. All of a sudden our livers, which to a large extent are responsible for the moderation of immune reactions, are sent into overdrive and bingo you have a hyper immune system.

As more and more people are freed from HCV I am certain that more will become known about how removing the virus effects some of us.

If removing the virus has some slight disadvantages then I will gladly take this outcome over having the certain knowledge that HCV was going to put me in an early grave anyway once it overcame my immune systems ability to fight it down.

Cheers
Eric
 
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline tsita

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Re: Long term effects of olysio and sovaldi
« Reply #15 on: August 11, 2016, 06:55:09 am »
I could not find my bloodtest so it is possible it was low and not high.  Just remember it was out of the normal range. I am very grateful that the hep c is gone and it will not kill me.  It is a terrible way to die.  I just want to live with a little more energy.  The inflamation indicated by the elevated sed rate comes from a compromised autoimune system.  As yet I do not know what is causing it. Terry

Offline dragonslayer

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  • Posts: 873
Re: Long term effects of olysio and sovaldi
« Reply #16 on: August 11, 2016, 08:32:42 am »
I could not find my bloodtest so it is possible it was low and not high.  Just remember it was out of the normal range. I am very grateful that the hep c is gone and it will not kill me.  It is a terrible way to die.  I just want to live with a little more energy.  The inflamation indicated by the elevated sed rate comes from a compromised autoimune system.  As yet I do not know what is causing it. Terry

A lot of people get confused regarding their thyroid levels because when you have the annual physical, its the TSH which is elevated.. TSH is Thyroid Stimulating Hormone, and its secreted by the pituitary gland.   An elevated TSH means a sub optimal thyroid hormone level and is the prime initial diagnostic for an under producing thyroid... Im guessing thats what you had, which also goes along with lack of energy.
Paul

DX 2008
Started Harvoni 11/26/14 for 8 wks
Completed 8 wks Harvoni 01/20/15
EOT RNA Quant result:  Detected 29
7.5 wk post tx: Detected < LLOQ(12)
11 wk post tx: UNDETECTED SVR12
24 wk post tx: UNDETECTED SVR24; AST 26; ALT 22; ALP 73
48 wk post tx: UNDETECTED SVR48; AST 18; ALT 18; ALP 70
GT 1a
vl 2.4mil
2008 bpx: Stage&Grade 0
2013 bpx: Stage&Grade: 0-1
IL28B: TT
likely infected early '70s

Offline beto

  • Member
  • Posts: 548
  • "no risk it, no biscuit"
Re: Long term effects of olysio and sovaldi
« Reply #17 on: August 11, 2016, 12:22:22 pm »
Indeed the thyroid can be a paradoxical gland.  With subacute thyroiditis (my recent issue) too much thyroid is produced and along with the symptoms one would expect (fast resting heart rate, hypertension, anxiety) there comes a brutal fatigue that you would expect from low thyroid.  Also curious is the fact that though many "hyper" cases lose weight, some gain considerably as much or more as low cases.  What's more, with this condition the numbers often completely reverse after several weeks and a "hypo" period begins.

Thyroid issues are becoming common and more complex.  As for many of us, HCV has not helped the equation.  I wonder if 'clinically' the edges are blurring. 
HCV/nonA,nonB acute phase 1975
HCV detected active 1990
HCV persistent chronic diagnosis 1995
1995 liver enzymes mild elevations
1996 Biopsy F2 fibrosis
treatment naive geno 1-A
2000-to early 2015 Viral load 150, 000 to 800, 000
recent liver enzymes before treatment alt/ast 59to209,  Fibroscan F4,cirrhosis
start tx Harvoni 7/11/2015
6.5 week-UD-ast/alt 25/25
9wk-UD-ast18 alt23
10/3/15 completed tx
11/5/15 new fibroscan f0-f1 amazed
6wk EOT UD ast/alt 20/20
12EOT-UD-ast/alt19/21
25wk-SVR! 19/18

Offline morab

  • Member
  • Posts: 232
  • Lives in the woods
Re: Long term effects of olysio and sovaldi
« Reply #18 on: August 12, 2016, 03:27:46 pm »
Thank you Jimmy.  I don't feel incredible.  Anyone who has had hep c has had to deal with a lot of aches and pains and fatigue.  Glory be to God, it is now gone, and I know He will help me with the rest.  It could be worse.  Thanks for writing and caring.  All of you are in my prayers. If any of you are interested in art, I have a website.  www.terrysita.com  Terry S.
tsita, your site is wonderful, thank you for sharing that! Keep painting for your sanity and I am so glad to hear at least the hep c is gone. I finished Harvoni about 5 weeks ago and am still plugging along with aches, pains, and fatigue! Hang in there and keep us posted
Morab
3/2016 G 1a
Alt 84
Ast 62
Fibrosis score lab 0.66
quantitation 894,670
4/23/16 day 6, naive Harvoni 12 week treatment
5/27/16 week 4 lab results UNDETECTED AST 23 ALT17

Offline tsita

  • Member
  • Posts: 7
Re: Long term effects of olysio and sovaldi
« Reply #19 on: August 12, 2016, 05:24:43 pm »
I will keep in touch and thanks for liking my website.  Nice compliment.  I love to paint and it does keep me sane and has gotten me through a lot of rough times, along with faith that God has a plan and always helps me.

Offline sunrise

  • Member
  • Posts: 463
Re: Long term effects of olysio and sovaldi
« Reply #20 on: August 31, 2016, 01:14:53 am »
Hello fellow warriors,  I finished tx S/O on Dec, 21 2015. Have had some side effects which included,  joint pain in Achilles  tendons, severe acid refux, which I had never had bedore. Got high blood pressure,  weight gain and heart palpitations.  Cured acid reflux taking shot of Braggs apple cider vinegar, followed w alone Vera juice. It worked wonderfully and is natural. The severe side effects of the PPIs were too dangerous for me, and the Braggs apple cider vinegar was miraculous.  Lots all weight gained and blood pressure returned to normal. As well as heart rate. Also Achilles  tendons reduced in the inflammation. Lately I realized my iron was low so I started taking a whole food vitamin and increased dark greens. Also changed diet to organic and non gmo foods. Always drink pure pomegranate juice and dilute it. My thyroid is fine and after a mri to check for breasts. I ate same kelp as that protects your thyroid form radiation. All and all I feel healthy and so grateful that I beat HCV! Best wishes and much love for all the support  I had received from this forum. Could never have gotten thru it without the help from Lucinda and all my warrios. My last advice is to keep a healthy organic and non goo diet. No need to poison yourself further. I don't  drink, maybe a beer or glass of wine every rarely. Blessing to you all. Hope this helps. Much love Sunrise

Offline sunrise

  • Member
  • Posts: 463
Re: Long term effects of olysio and sovaldi
« Reply #21 on: August 31, 2016, 01:21:03 am »
That was sea kelp* high in potassium iodide.

 


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