Pain in bones, hips, an knees.

[Mmorgan854]

Hi community,  so glad I have someone to ask this question.  I seem to be doing so good for about 2-3 wks.  Felt like myself again, headaches eased.  I jumped out an over did it physically, an since that day( I think a week or so ago ) I haven't recovered.  Yesterday morning, a strange pain in my bones I think ( have never experienced this ) an my hips are absolutely throbbing, unable to get comfortable, losing much needed sleep.  Fatigue is the worst it's been so far.  I have 19 days I think till EOT.   I will not call G.I. Dr. For fear he will change dose if this is related to treatment .  I feel I'm slipping into real depression, which has been extremely dangerous for me last time I treated in the 90s.  I feel the treatment has failed already. ( how could I feel this awful an treatment working? ) I have flare ups of bursitis in my hips occasionally, but this is definitely not the case.  I live alone an due to no energy, I'm eating sandwiches mostly, so my healthy diet I watched so closely is practically non existent.   Somebody please tell me what is going on if any one knows.  I definitely feel sicker than any time during treatment.  Could this be some underlying problem rearing it's ugly head or what..  I really don't know what to think or do at this point.  Thanks in advance.   Mary

[susan400]

My ALT went normal at the beginning of treatment, the first time in over a decade.  But, my AST has never fallen in normal range for the entire treatment.  It dropped, but hovered above normal range.  As long as I stay undetected, I'm going to try and focus on that.  I am going and try and see if I can get my doctor bump my EOT labs to 1 week after meds have stopped.  I don't know if he'll allow it or not, but what if I was one of these people who just 'forgot' or if I had an emergency and couldn't do them??  I mean really.  I just thing that it would be more telling to wait for a week after the drugs are stopped to do an end of treatment lab.  He has me getting them like the last day of treatment and then, nothing for 6 mon.  Personally, I think that's dumb.  I think one week off of TX drugs, would be better, since he's making me wait 6 mon. for the next one.  Susan400

[sue4hula]

  Congratulations! The end of the treatment is well within sight!  Here's hopes and good vibes that you all finish without incident and that we all reach  SVR!  It's such a journey and you've all been such great support.  Thank you!!

[patra_]

Mary:  
ALT & AST Are Liver Function tests - there are some other ones in that Panel:  Albumin, Total Bilirubin, Direct Bilirubin, AlkalinePhosphatase, the AST an ALT, Total Protein, Globulin, abd A/G Ratio.

If I understand correctly, the AST is a sort of measure of inflammation in the body organs, heart, etc, not just the liver and the ALT is sort of liver specific, indicating the problems there, is a sensitive measure, and specific to heptacellular disease.   I am paraphrasing my old Standby:  "Mosby's Manual of Diagnostic and Laboratory Tests".

I do not believe it is a measure of viral load, as in the AST other organs can be involved and in the ALT other liver conditions might have influence.

Having said that, my Dr was very pleased when mine dropped to low normal so quickly 3 wk Lab), but has not ordered it since.  Maybe at EOT, but I don't know that and have never thought to ask him.

Glad you are feeling better!  Only 11 more days!!  : -).   Pat

[Mmorgan854]

Hi everyone, this is the 1st morning in 12 days that i physically over did it ..I actually feel normal again, no headache, or that dreaded body pain.  That experience made me realize just how powerful these drugs are. I'm thinking I'm on the max dose of 1200 RIBA daily an I'm assuming the nasty sides were from the RIBA.  Question please. Beginning AST 23  beginning ALT113. Current AST 22. ALT 21.  Can anyone interpret that?? I saw GI awhile back an I'm thinking I won't see him again till 12 wks after treatment an would like to know before Dec.?  11 solvaldi to swallow, then done....4 wk EOT labs will probably have to fight for, but isn't that a good indicator of success?  Can't imagine having to wait till December...should I insist for Oct. 9th labs(4 wk EOT) or can insurance say no??   Thanks all.  To newbies, please take it easy during treatment an avoid a lot of grief.   Mary

[patra_]

Yup, that does make a whole lot more sense!!  Boy, are you, like Mary, getting Short.  Pretty soon, this will all be behind you both!  You two should both be reaching SVR 12 about the time I take my last meds (Dec 1 for that, for me).  See how positive I am being?

Have a great day my sister (and brother) Warriors!!  Let's all go forth and slay this dragon!!!   Pat

[susan400]

I just realized I made a mistake in my typing to you on my earlier post.  Brain fog.. geez     I said my start date was Aug 18..   That was a screw up.  I started back on June 18th.   Hope that makes more sense now!    My brain is so fried.  I swear,... more than anything, I'd like to get back at least some of brain function when I get off these meds.  Susan400

[susan400]

Yes, I'm sure about the start date.  If you look on a calendar, and look at June 18th and count 12 week, you will come up to Sept 10.  My pills and shots work out to the same as well.  No worries, I've taken every dose correctly. No meds mishaps  Susan400

[patra_]

Good morning.   Ony 12 more days!  : -)  You are so short you have to hem all your miniskirts so so they don't drag the floor when you walk!

Hope yesterday was a good day and today will be a better one.  Pat

[patra_]

Susan:  Are you sure about that start date?  That sounds like a month or 6 weeks - surely that can't be right!

ALL:  Oh, good news,  ALL:  Got the Hmg results yesterday pm from Tuesday Blood draw:  UP to 9.  I know that is not great, but I could tell Monday that I had more energy, so I am hoping it is enough to keep me from having to go the Procrit route, because we (Dr & I) DON'T want to reduce my Riba!  See the Dr this coming Wednesday.  

Keep on keeping on everyone, WARRIORS, ALL!  Pat

[patra_]

Sorry, I am so late this morning.  I see Livelife already gave you the good news!  I figured that out at the end of my first 'month' of treatment, when I got my second month's bottles of meds and was just short of calling the doctor's office to fuss about the pharmacy.  : -). After I thought it through, and did some arithmatic,  finally realized that, IF the total cost was $168,000 for the Sovaldi and that was $1000.00 per day, then that was 168 days, and, divide that by 7 days a week, and that came to the 24 weeks the doctor said.  He didn't tell me 6 months, he said 24 weeks.  (I always have to learn/do things the hard way!  lol).  In case I never said: gt 3 same meds and doses as you all, 24 weeks of treatment.

So congratulations!  You are under two weeks!  You are so short, you have to use a ladder to get from your chair to your keyboard!  : -).  

Wow, when the ladies in your area feed you, they do it up right!  Where do I sign up?  : -).      Pat

[susan400]

Yea, also, I have relatives in Ala..

[Mmorgan854]

Hey my friend, we do have a lot in common.  My EOT was moved up 6 days with me thinking all this time I would treat 12 wks (3 mths) SO..  My EOT will be sept 10th with labs the next day which is... Yep the 11th.   My daughters b. Day, sept 10th an mothers birthday is sept. 11th ,(74 yrs before that tragic day, of course) so this day was always special in our family.  Here's to us making it thru an on to SVR an beginning of a new life hep C free....yea...

[susan400]

We are finishing up at or around the same day.  The only difference on the pills is that my doctor's office started my pills on Wed. Aug. 18 and I didn't do shot #1 until the following Mon. night.  So, my last shot will be on Sept. 8th and my last pills will end up on Sept. 10th.  Then because of Mom move thing, getting week 12 EOT bloodwork on Sept. 11.  Wow, I just realized, that's such an important day for everyone, all the way around, and my labwork just happens to fall on this day.  Susan400

[Mmorgan854]

WONDERFUL!!  So glad to hear that.  Woulda finished either way at this point but I'm so happy to hear this.   YIPPPPPEEEEEE

[Mmorgan854]

WOW Lady , u do have a lot on your plate, an even with moving people helping you, there's always unpacking an stuff.  Something that's no big deal normally, looks like a mountain during end of treatment. ( some people, of course.). I hope this is a blessing having your mother closer to you.  I relocated from Florida to Alabama coast in 2000 to be closer to her when she became disabled, an was exhausting then without any treatment an I was 14 yrs younger to boot.  One of the best decisions of my life, when I look back.  When is your EOT date??  I'm thinking I have 13 more days to go.. Thanks for all the encourage you an everyone has given me..    Take care.  Mary

[Mmorgan854]

Sorry it took me so long to answer.  I'm treating with 400 mg. solvaldi  and ribasphere 1200 mg daily split into 2 doses.  I'm GT2 an I'm thinking I have 13 more days till EOT.    I hope that answers your question.  I'm not sure what my liver status is due to my only liver biopsy was in mid 90s.

[Livelife777]

Hi Mary
Your in luck!!!    84 days of pill taking.
                           Lifetime of SVR
XOXO
...Kim
The final Countdown begins.
T-13

[Mmorgan854]

Hey again, just  went back an read your post again.when you mention aches due to dehydration, not sure that's what I'm experiencing.  This feels like actual bone pain or something like that.  AND it seems to have actually moved around my body the last few days.  Started in the hips,  today, it's been all lower back, like my lower spine.  I hate to sound so whiny, but kinda worrying me as I've never felt this type of deep pain before. Nothing I can't handle at this point, but has any one experienced this??  Thanks everyone in advance for taking the time to help out...    Mary

[Mmorgan854]

Hi everyone,, today has been a challenge with having to go for blood draw..this area is coming off a week long heat wave an soo muggy. But, i do know how important labs are an could not miss another draw.  That being said, I will get through this an do a happy dance soon.  Patria, I got such a laugh out of your last post,  sure needed that tonight.    You did get me to thinking exactly how many days left of treatment.  I counted solvaldi an have 13 pills left BUT according to 3 mth treatment, should be 19 to go.  I can account for I day of double dose of solvaldi beginning of treatment.  But 5 pills unaccounted for?  July an August has 31 days an my script have 28 pills each bottle so mystery solved, I guess.  My question..is solvaldi treatment for 3 mths ( 90  days ) of 84 days??   I think I'm one confused kitten tonight an hoping someone can follow this rambling post..  I'm sure hoping I hear back 84 days an I was wrong on my EOT date all along.  On the sunny side, I thought I awoke in a 5 star resort tonight when I was delivered fresh grilled tuna steak, steamed okra, broccoli, an dessert.  Beats peanut butter an jelly!!    Wishing everyone out there peace, comfort, an SVR forever.    Take care.   Mary

[patra_]

Susan:  I was basing that on the fact that you had had reactions on other tx.  Still, use a good sunblock.  If I remember correctly, you are here in FL also - never a good idea to go w/o sunblock in this sun.

Mary:  How short are you - 16 and 1/2 days?  So short you have to reach UP to tie your tennis shoes!  You can always tell me to stop this nonsense - it won't hurt my feelings.

Go, girls, so close!!! On to SVR!  Pat

[patra_]

I was basing that on the fact that you were having sun reactions on your different tx.  If you are only going to the car, and to a store, should be okay to try it, if, just by stepping outside for a few minutes and back in.  Still, use a good sunblock.  I believe I remember you live in FL also - it is never a good idea here to go out w/o sunblock.

[susan400]

Even if I'm not doing the Olyssio??  I was hoping since I wasn't on the Olyssio portion of the treatment that I would at least be able to walk to and from my car w/o having to still be in this long sleeves and long pants thing.  But, knowing that I usually have skin reactions during the treatment, I've been staying covered up throughout to prevent that. Susan400

[patra_]

Please wait a couple of weeks to 'go out my front door in a short sleeved top and shorts'. Several other threads have addressed this issue and it seems to take between 2 & 3 weeks to get post that sun sensitivity.  

So excited for you that you, like Mary are so close to done.  Praying for SVR for the both of you - and all of the rest of us!  Pat

[susan400]

Hi, I hope things are going better for you, now that you have all this glorious help!  I counted my Riba's yesterday (I know, a little obsessive compulsive!), I wanted to know exactly how many days of pills I had left.  I knew I had 2 shots left, but my doctor's office had started my treatment with a 5 day lead in on the Riba and Sovaldi, so, I wasn't sure how it was all going to turn out on the end.  I have figured out that I have 13 days left.  I finish the Ribas and Sovaldi a week from yesterday (Wed.) and my last shot that week will be that Mon.  Since I've bumped the EOT viral load, that will be on Thurs.  So, now, I have a countdown end point to stare at and every day is one less day left on this and I can be one day closer to normalcy.  I know it may take a few weeks after EOT for it to all settle down.., past experience on my treatments, plus reports from those on this board who've recently completed their own TX's, tells me that.  But, I'm looking forward to not having to get up as early to an alarm, in order to have to take fix food for my 7 am dose.  I plan to sleep to 7 am at least, actually, on the first day off treatment.  And I'm looking forward to not having to be in long sleeves and long pants, just to go in and out of my front door.  So, just because, 'I can' on the first day off drugs, I'm going out my door in a short sleeved top and shorts!  It's weird the things that become important to your mindset like,  'what I'm going to do when I stop these drugs'.  I'm telling you all these things since we're in about the same spot in our treatments.  I think maybe you might be a couple of days behind me on finishing up.  Please keep on hanging in there.  It's not much longer for us.  My biggest issue at this point is my mind, moods, etc.  It's been such a struggle for me the past few days with all of a sudden, (where earlier in the treatment, I hadn't had any crying at all), I've had like 3 days in a row where I was emotional of stupid stuff.., that off of treatment would never cause me to cry about it.  I am normally a NON crying type of person.  It's just my normal mental makeup to not cry about things. But, these drugs once you are saturated with them, through all of that out the window.  Susan400