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Post Info TOPIC: After Sovaldi/Harvoni Treatment


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After Sovaldi/Harvoni Treatment
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Harvoni tx 8 weeks.  No bone or joint pain 12 weeks post treatment.  Did have the "blahs" here and there, but pretty much gone.  I do have numb feet which I attribute to the HCV of 25 years - as it started a couple years prior to treatment.  I don't know if that will improve.  I believe nerve damage takes up to a year to heal (if it even does).



-- Edited by singsong on Friday 9th of September 2016 11:22:14 AM

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Age 66. 1988? Dx 1996. G1a.  Biopsies 1996/1998.  Mild inflam. Tx naive.12/2015-Fibro F3/10.5 kPa. VL 1.1m Harvoni 8 wks. 5/9 VL was 69.  EOT 6-13-16. ALT/AST 13/16. Platelets 325. UND.  9/4/16 EOT+12 UND & 1-10-17 EOT+30 UND!



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No joint pain to report here post treatment, I am glad to report.



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44 y.o. male, HCV G4 since 1996, F-scan score 9, F2, Failed prior I/R, finished sof/vel/vox 8 weeks 5/16, pre-treatment VL 2 million, EOT UND, EOT+4 UND, EOT+12 UND.



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basser wrote:

 ive been at war with that virus for the last 8 years think ive got p t s. lol. but the great think ive found is you never no whats round the next corner thats what keeps me going on                                                                                                                                                                                                                                              william


 You Gave me a giggle Willam PTS lol like that  I'd drink to that if my liver wasn't shot lol          I have to make jokes about our journey as well. I'm also about 8 years of Hep C symptoms.  I'm just catching up with this thread. to do a little comparing on the condition of my friends here. It will probably make me feel worse. In general other than coming up on 2 years post EOT Harvoni. I'm still in pain most of the time  I'm much worse in many ways since the years of treatments and failed trials etc

What the hell does keep us going .

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.



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Yes to probiotics.  Gut health is fundamental.

I did not take Harvoni so don't know much about post treatment conditions.  

I did have HCV and I don't  have HCV. There must be some similarities there. I had all of the symptoms you had, Dan, but my post symptoms are the same as those you experienced during treatment.  Occasionally I have some shadows but am building up strength and maintaining good habits, well mostly.  Keep drinking tons of water to get the gunk out of your system and give your body a chance to find its way back.  It has been fiercely impacted but we are pretty darn resilient.

Cheddy



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GT2a, VL 681,500, Less than F1, Treatment Naive

12 wks Sovaldi/Ribavirin, SOT 2/25/16, EOT 5/17/16

UND at 2,4,8 and 12 wks during treatment but ribavirin crazy.

ALT/AST normal EOT

SVR12 8/13/2016!!!!!!!!!  I WON!!

EOT 6 Months 11/12/2016  CURED

 



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Greetings,

 

I have added a good Pro-biotic since EOT and I believe it helps.

Food for thought.

 

JimmyK



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."



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A Nice discussion thread.

BEFORE TREATMENT

I had lots of fatique, brain fog and minor digestive disorders.

DURING TREATMENT

Brain fog almost gone, fatique gone and digestive disorders gone.

AFTER TREATMENT

Brain fog 50% back. Fatigue came back the first month but has disappeared now at the beginning of my 3rd month. Digestive disorders (Bloating, minor pain) are back 20%. It appears my skin is slightly older looking and more wrinkled from the treatment. In terms of the joint pain discussion, yes i had minor joint pain during the treatment that has rolled over to after treatment. I have a strange sensation that somehow my tendons and/or ligaments are not as strong as they used to be and are more prone to ripping or getting injured. It has not happened but i just get some intuitive sense the connective tissues took some sort of hit from the treatment.

As I am EOT + 14 the jury is still out where this will go obviously but I will take any of these side effects to have one less dragon doing the slow burn on my system,

D

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58 yo - GT 1B - VL 2,300,000 before treatment - A1 - Hepascore F0-F1, Got the Virus in 1985

Harvoni SOT: 03/23/16 UNDET: @ 4 and 8 weeks: EOT: 05/22/16 

 

 

Tig


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Hi David,

Good to hear from you! I'm pleased you have seen some improvements with the Enbrel. You were wise to take your doctor's advice and see a specialist. I'm seeing some of my friends that have never had Hep C with their own set of problems. So now we have a Hep free life ahead of us, a few aches and pains that will hopefully resolve, and we're improving. Takes a lot of time for some but we have that opportunity. I feel pretty good about that!

I hope you check in more often and let us know how things are looking. It's nice to have our Veterans touching base, the perspective from a year plus is always interesting and can be quite valuable for today's warriors. Talk soon... smile



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Tig

64 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 7+ years!

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Hey, long time no posting... Fun topic.  I'm a little over 9 months SVR now and the hand/wrist/knee, etc etc pain that kicked in during the first few weeks of Harvoni tx didn't fade until I followed my specialist's advise at 3 mos SVR and surrendered to my rheumatologists suggestion that I start Enbrel for the psoriatic arthritis I'd been living with for too many years to count.  My liver seems to be tolerating the Enbrel well, and 75 or 80% of my joint pain is gone.  If only the rest of it would go away I'd be happy as a clam.

 

David



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Age 64 Geno 1a  Diagnosed 11/14/14 with 6.3 mill VL after 40ish years of infection.  Harvoni tx started 8/15.  SVR12 Feb 4, 2016  Last appt with specialist was told to have my gp order metabolic testing once or twice a year because his services weren't needed any longer.  Still happy dancing.



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I have become a cross - poster smile .. Yes we won it!



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65 yo, GT1A, , Cirrhosis, F-Scan F4 33.5, TX Naive Harvoni 12 wks

SOT 2/9/16 / ALT 187 AST 114 VL 2.3M.    POSTS

EOT 5/2/16  ALT 35/ AST/25  platlets 126 C/B VL UND

EOT +12 7/26/16  ALT 25 /AST 22/ ALP 83  platlets 129 C/B VL UND

EOT + 24 10/18/16 ALT 27/ AST 20/ ALP 71 platlets 153 C UND

 * SVR *



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Try thinking about it like returning from War.

In particular a War we won. wink

 

JimmyK



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."



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This post could also go into the one about Jimmy's wife although we are certainly not her but it is talking about post treatment.

I saw my specialist this morning and on the way out mentioned to him that I am having some joint pains. His response was "Yes". It has in fact been reported that a side effect post Harvoni is joint pain and they do not quite know why but think it may have something to do with the auto immune system.

I asked, can I expect them to subside, to which he replied yes. That made me happy. I then called his secretary from home 40 minutes ago because I did not tell him I am experiencing mild nausea and would she please mention it to him and call back to confirm if this was another reported after effect. We shall see as history dictates this might take me more than one phone call. I will post this link in the Update on wife thread because I believe it is related.

SF

* On a side not, I have a req for an ultra sound at 24 weeks after treatment and one for another C viral load test. When I asked about the VL, he said no they don't take them but I did say I would really like one so voila, he gave it to me. I should get a Fibroscan done at approx the end of one year  from start/end of treatment. I will probably have to pay for this but I don't mind.

BONUS - I have a copy of my lab work from public health saying my B and C are undetected ... not just <15.



-- Edited by Shadowfax on Tuesday 30th of August 2016 12:33:17 PM

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65 yo, GT1A, , Cirrhosis, F-Scan F4 33.5, TX Naive Harvoni 12 wks

SOT 2/9/16 / ALT 187 AST 114 VL 2.3M.    POSTS

EOT 5/2/16  ALT 35/ AST/25  platlets 126 C/B VL UND

EOT +12 7/26/16  ALT 25 /AST 22/ ALP 83  platlets 129 C/B VL UND

EOT + 24 10/18/16 ALT 27/ AST 20/ ALP 71 platlets 153 C UND

 * SVR *



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Hi everyone.  I have experienced joint pains as well which started not long after I began treatment.  In both shoulders I feel a lot of pain, and the left one can be excruciating.  I still need to carefully extend this arm out to put a shirt on, avoid abrupt movements, and still cannot sleep on that side.   The other shoulder is also painful, but more bearabe.  I did not associate the pain with meds until I started reading about on this forum.   I went to physio theraphy for a dozen or so sessions  and had an echo, which did not indicate problems.  The physio did not help and I did the exercises obssessively.  Nearly 8 months out of treatment the right shoulder is no longer painful and the left is better but not completely pain free.  It is not the best situation for anybody on the meds but I personally think it is a small price to pay for the results they deliver.  And I think the pain will eventually go away once and for all, but given that Riba can stay in your system for up to a year it may take some more time, if indeed it is caused by Riba.  I also found switching to a drawing tablet from a mouse relieved a lot of tnsion in my right arm.  



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Thank you for your input.

I did finally post after reading this thread about other such aches and pains. The reason I do believe it's the Harvoni is because of the here, there everywhere nature of the pains. If they were isolated in one place, I could logically attribute it to something I may have done but not all these dots can be connected.

I am aware about the heat and cold since I have a whiplash since I was a teen. I should own stocks in the heating pad companies.You are correct Dave, I am not interested in taking anything for it unless it was absolutely necessary as many years ago when I had tendonitis, I did try just Motrin and I had more side effects than Harvoni. I really am lucky I did so well during my treatment.

You mentioned tinnitus Tig, yes I have that but I have had it for more than 30 years. I cannot say if it has been any worse during and since Harvoni, but yes, you sort of learn to live with it and sometimes it's not bad and other times like a siren.

I suppose time will tell about all this.

 

SF



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65 yo, GT1A, , Cirrhosis, F-Scan F4 33.5, TX Naive Harvoni 12 wks

SOT 2/9/16 / ALT 187 AST 114 VL 2.3M.    POSTS

EOT 5/2/16  ALT 35/ AST/25  platlets 126 C/B VL UND

EOT +12 7/26/16  ALT 25 /AST 22/ ALP 83  platlets 129 C/B VL UND

EOT + 24 10/18/16 ALT 27/ AST 20/ ALP 71 platlets 153 C UND

 * SVR *

Tig


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Hi SF,

You're not alone in this post Tx complaint. We've had several people mention it, some with severe problems. The good news is it didn't last terribly long. Those I've spoken to have had significant improvement inside of the first year. Not that living with discomfort for a year is anything to look forward to, but the improvement is worth holding onto.

I remember my first year post treatment on the old SOC's and they weren't the least bit enjoyable. It makes one wonder if some of it is your body reestablishing it's lost territory? There is some healing and recovery from the drugs during that first year. The Riba was the hardest for me to recover from and took every bit of a year. Some do better and see marked improvement in a few months, others wait far longer. I'm still having problems from the Interferon. It caused some dental trouble that persists and the Victrelis caused severe tinnitus that just won't go away. I'm having to accept, to get a little, I had to give a little... SVR still remains golden!



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Tig

64 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 7+ years!

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Hi SF,

Sorry to hear of any aches and pains ... they can be very annoying.

Only time will tell if these are associated with the Harvoni but in the mean time it's good that you mention it to your doc.

Sounds a bit like inflammation, do keep up the the liquids and I wonder if perhaps Hot/ Cold therapy might help some ... I know you probably want to avoid an anti-inflammatory but maybe see what the doc says on that.

Here's a link to hot/ cold therapy, I hope it can at least help take the edge off.

 

Dave



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63yy,HCV,2b,F3-A1, Sof/Riba,12wks Tx   SOT: 1/20/16, HCV-RNA 9,816,581, ALT 56, Hb 14.6

4wk: HCV-RNA <15 Detected, ALT 15, AST 17, Hb 13.6 EOT: 4/12/16, ALT 18 , Hb 12.9176a2f85d05d9c965eafe199f2ba9ba5.jpg SVR Achieved 7/8/16

 



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I have been a little reluctant to make this post because you always wonder about cause and effect.

I am Eot + 14 and I will say that in the last few months, I started to experience some joint and muscle pain. It started in my elbow area and seems to be tendons as well. It is not unbearable but can hurt more when any pressure is put on it like even sleeping with an arm under the pillow.

I now over the last two/three weeks have some joint pain in my thumb and index finger that was absolutely not there before. It is only one hand at this point. Some tenderness in one knee as well. Oddly this is all on the right side of my body.

Nothing is unbearable but I am reminded constantly that it is there. I don't feel I need anything for pain management but I am hoping that it gets better as opposed to worse. I will mention this to my specialist when I see him the end of this month.

 

SF

 



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65 yo, GT1A, , Cirrhosis, F-Scan F4 33.5, TX Naive Harvoni 12 wks

SOT 2/9/16 / ALT 187 AST 114 VL 2.3M.    POSTS

EOT 5/2/16  ALT 35/ AST/25  platlets 126 C/B VL UND

EOT +12 7/26/16  ALT 25 /AST 22/ ALP 83  platlets 129 C/B VL UND

EOT + 24 10/18/16 ALT 27/ AST 20/ ALP 71 platlets 153 C UND

 * SVR *



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ive kept a diary for the last two years so i know exactly how i was prior tx on tx and post tx.makes interesting reading.even put in what weather was doing.its british thing.but prior to tx i never had issues with joint pains or muscle aches .had brain fog really bad and numb feet thought i had diabetes but a fasting test came bk negative. so nearly a yr post tx im svr thanks lord .and am dealing with the after effects of damage done by virus and side effects of treatment.i must say life for me life is about quality not quantity. but where there is life there is always hope. would i do treatment again after 3 times 2 of which were no goers and still trying to get over the last lot no way. ive been at war with that virus for the last 8 years think ive got p t s. lol. but the great think ive found is you never no whats round the next corner thats what keeps me going on                                                                                                                                                                                                                                              william



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 william.61 yo.lives in uk.geno 1b.started sol/dac/riba sept 2014 12wks.am now svr and now had liver transplant on 19/07/ 16



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A discussions that's right down my road.  Tomorrow starts Harvoni week 11 and I've been dealing with some really nasty hand/finger/wrist pain since the end of week 2.  There is a bit of pain in my left knee and some kind of muscle/tendon pain at the top of the calf below the ouchy knee for awhile after I get up and start moving around.  It stiffens up again after sitting for 20 minutes or more.

The pain has done a real trick to the wonderful Harvoni sleep I had in the first few weeks of TX.  I'm only getting a few hours of good sleep every night now.

The science behind my problems has much to do with conditions I had prior to treatment.  I've got a rheumatologist that tells me I've had psoriatic arthritis for almost 10 years.  I've had psoriasis for 40+ years, and had a terrible flare of both of them began in the 3rd week of TX.

I honestly haven't ever hurt as badly as I do in my hands now, but one thing's sure.  I've only got 14 more pills to take before I finish this damn treatment, and I will finish it, even if I have to have to have my wife pit the pills in my mouth every morning.

When I get past this stupid pain and the messed up mental state it has me in, I know I haven't felt this good in ages.  The average between the quality of the good, and the downer of the bad still has me way under par compared to the average 35 year old  (LOL), but I'm still happy I climbed onto this train.



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Age 64 Geno 1a  Diagnosed 11/14/14 with 6.3 mill VL after 40ish years of infection.  Harvoni tx started 8/15.  SVR12 Feb 4, 2016  Last appt with specialist was told to have my gp order metabolic testing once or twice a year because his services weren't needed any longer.  Still happy dancing.



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robertsamx wrote:

  However I really feel that all the S/X is from the Riba, not the Sovaldi.  They did  trials where people just took Sovaldi alone and the treatment did not work, something like 20% svr or less?  It would be nice to see the trial results as far as S/X were concerned .  IMO its all from thr Riba.


 I'd like to see those results too Robert. I had depression while on Sov/Riba last year which I know was caused by the Riba, but I had some joint and muscle aches too and I wondered which medicine caused that. I'm pretty much disqualified for commenting concerning changes in Sx after Sov/Riba treatment or comparing pre Harvoni Tx with the present Sx but I can say, on this 14th week into Harvoni (Sov/LDV) I have no pains that are anywhere close to requiring medication other than occasional back pain and phantom limb pain, both non-HCV / Harvoni related. So maybe it was mostly the Riba last year. 



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60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

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Not just RIBA as us Harvoni / non Ribas are getting symptoms too. My feet and hands most definitely ache. Not constant, cycles through treatment. Some days I hobble when I get out of bed. Some days it seems like I dreamed it.

I did get hip pains after my last incevik go around. I had RIBA and Inteferon too during that. I thought I read that it was the Inteferon that caused aches but probably the RIBA too.

Exercise helps. I even do hand stretch exercises if it gets bad.



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1A. Previously treated non responder Rebetron in 2000 And Incevik in 2014 with a breakthrough at week 12. Fibroscan 15.5. VL 6,000,000. Finished 24 weeks harvoni on Dec. 19, 2015. SVR. Latest Fibroscan 8.8.



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I had chronic fatigue and brain fog prior to tx.  The fatigue may have improved somewhat, however for me the brain fog is somewhat worse.  Mike's post about HE got me started back on my lactulose. Also taking a zinc supplement. 

I noticed an increase in pain when lying in bed which contributes to the insomnia. Not sure why I never tested for cryoglobulinemia?  One would think that should almost be standard for someone with chronic hcv/cirrhosis.  Cryo is somewhat common with those suffering from chronic hcv.  Some of my symptoms would be consistent with cryo.  I have an appt. with my pcp tomorrow to discuss this and hopefully get tested.  



-- Edited by Groupergetter on Sunday 25th of October 2015 11:08:48 PM

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1b  Int/Riba relapse @ 48 weeks.  Stop tx Peg Int/Riba 12 weeks ill. Relapse S/O 6/23/14 :(   Started Harvoni 11/12/14  EOT 4/28/15.  EOT+4 UND :)  SVR! 8/4/15  :)     Thankful for every morning.



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After treatment with Sovaldi-Riba 16 months ago I can say that the brain fog is real. The muscle aches are real.  I dont move like I use to.  However I really feel that all the S/X is from the Riba, not the Sovaldi.  They did  trials where people just took Sovaldi alone and the treatment did not work, something like 20% svr or less?  It would be nice to see the trial results as far as S/X were concerned .  IMO its all from thr Riba.   That all being said, adding peg could change my thoughts on all of this.   RC



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 M-64) 3 Treatments)( SOF-RIBA 2014)(SOF-RIBA-PEG 2016)(HCC 2016) (LIVER TRANSPLANT 8-2017)(VOSEVI-RIBA 2017)   SVR-12. 3-13-18   



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What about fatigue, brain fog, and other side effects? Some people have mentioned these post treatment but it is unclear whether the people had these symptoms before treatment and/or if the treatment made those symptoms worse.

Is there any permanent decrease in any level in the blood tests such as platelet count or ??

Thank you for any information :)



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Absolutely no question in my mind (what little is left :)  that I have increased joint pain, in knees, hands, and tendonitis in elbows that I didn't have prior to tx.   During tx I also had hip and shoulder pains not previously experienced.  These have subsided post eot.  Needless to say I'm thankful to have been treated and would do it again.



-- Edited by Groupergetter on Sunday 25th of October 2015 04:35:39 PM

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1b  Int/Riba relapse @ 48 weeks.  Stop tx Peg Int/Riba 12 weeks ill. Relapse S/O 6/23/14 :(   Started Harvoni 11/12/14  EOT 4/28/15.  EOT+4 UND :)  SVR! 8/4/15  :)     Thankful for every morning.



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After finishing 24 weeks Sovaldi, I now have joint pain I never had before treatment.



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GT3a Age 61. Clinical trial sovaldi/riba 24 weeks. finished trial 17th April 2015 undetected. EOT+4 weeks undetected.24th July 2015 "SVR"

24 week SVR!!



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am in no doubt that solvidi causes joint and muscle pains.never had them before tx have them now.and seems im gonna have to live with it

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 william.61 yo.lives in uk.geno 1b.started sol/dac/riba sept 2014 12wks.am now svr and now had liver transplant on 19/07/ 16

Tig


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I have been reading various discussions, here and on other forums. There seems to be a lot of conversation going on regarding problems with joint and muscle pain developing during and following treatment. That concerns me and I want to provide a single location where our Sovaldi protocol patients can present their story and symptoms. We do our best to stay on the positive approach to treatment and the eradication of this disease we share, but there needs to be a place where we can also talk about the downside of it, if you're experiencing that. These are new drugs and like the protocols before them, they can leave us with some all but optimal side effects. If you feel like sharing your experiences and concerns, good or bad, let us know...



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Tig

64 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 7+ years!

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