post pegintron/ribav symptoms

[happyjack]

I completed 24 wks of tx 3 wks ago. Feel great.  Wish I had known about this site before.  My problem now is leg muscle and joint pain, and just aching all over.  I used lorcet 5mg while on tx.  Havent had any pain med in 2 wks.  Aleve, Tylenol, any over the counter does not help.  Has anyone else had this problem?  I am showing clear on my blood work.  My liver biopsy shows no liver damage.  I have had hcv for approx 20 years and did not know it.  God has taken very good care of me for some reason.  I have a 10yr old son who did not get the virus. Thanks for any information.

[honey1616]

Yeah I couldn't believe it worked out that we got in tomorrow! And we have so much ready for this appt!  We stayed up until 3 last night,,,printing, reading and I have a list made.  Just called other drs office and they are faxing all his records to new one this afternoon! Like Cuteus said,,,This is perfect example of being prepared before starting tx and having a list ready when starting a new dr. Live and Learn I guess!  Can't thank you enough for all your help and everything you offer this forum!

[honey1616]

Chev,,,,haha you are tending to rush these shots LOL  I don't blame ya as you are so close to the end now and I'm sure wanting it all over with! Well,,you know that you are going to have the largest cheering section! We are going to have to reserve 2 to 3 threads for you that day! lol  Thanks so much for thinking of us and yes,,,My hubby says THANK YOU to everyone. He is always busy working or always doing something!  He has always been soooo energetic and can't sit still for too long so thinking with treatment he might slow down haha Nope,,,if he is down during day,,,You know he must be really feeling rotten. So he knows I'm doing the research and talking to a lot of great people out there that are going through same thing as us.  Yesterday,,,I said "Get in here and read all this advice and support"  He could not believe it!  Just in awe of all the support that this forum offers and says "I can see why you love to check in with all them"  So,,,yes,,,He knows everyone here by name through my talking about each and everyone of you!!

[TnHepGuy_]

It sounds like you did one heck of alot of last-minute legwork!

It also seems like a good start - in that this office is willing to take you in so quickly. Go armed with your studies/papers and questions tomorrow. Ask about continuing full-dose and doing the Neupogen. There are ways to make sure your husband stays on full-dose through this. If this new doc wants to put him on Neupogen - be prepared to get the ball rolling real fast on ordering some. All the pharmacy and insurance hoops that might have to be jumped through can be a real last-minute, time-consuming pain.

Best to you and hub. And I hope all goes even better-than-hoped-for tomorrow.


TnHepGuy

[honey1616]

Geeze,,,I just sent you something and then said "timed out" so it must be floating out there somewhere haha  So if you get a double posting,,,,you will understand!

Thanks for all your support! That is great that you aren't having to change up drs to extend and yes,,,I will be anxious to hear more on that.

This whole ordeal has probably been (I pray) best thing,  I just got call from new drs office and at first....one month! But after explaining our situation,,,Tomorrow morning at 9! I hope this new dr is nice and I definitely know he is one of the best! So keep your fingers crossed for us!  I will let all know tomorrow pm how it went!

[cuteus]

I am sorry it took a crisis to alert you of the inadequacy of this practice. It took one to switch from my second to the 3rd. Maybe you can get to see the GI every 3 months like some here do. my practice wants monthly visits and it is almost an hour trek. I was willing to go to Manhattan if that is what it took, since I have sick, personal and vacation time I can use. Your experience is going to come in very handy when newbies ask what lists of questions they should take to their first visit. I am so glad you got such inmense wisdom and input from those that went through this sx, before your hubby. he is so lucky to have you in his corner.
I found out yesterday that I will not have to change practice in order to continue tx extension.  I will post details later tonite.
stay well

[honey1616]

Befud,,,Wisconsin???  LOL  You did you do some traveling haha  How are you feeling?  I guess pretty good! Let us know how all is going and thanks for the great thoughts about meds,,,but may have something in works already...Read Below

Cindee,,,Thanks for your prayers and all and I'm so glad that your Dr is soooo wonderful!  I want one just like him LOL  Awwww I'm very excited about your bx as it sounds really good!  Keep us all posted and love the stories you share with us!!

Amerabrit,,,Yes,,,we do have plenty of meds,,,both of us and I just don't want to put my hubby at risk for anything unless we can get our hands on prescription!  Thanks for all your wonderful thoughts and concern!  You are the greatest!

Everyone,,TnHepGuy, Fonzz,Revenire,,,Thanks for all the great info and I printed it all and no reply this morning from Dr so I faxed and faxed all info! LOL  Then about 9,,,my hubby called and told them that he had collected all the info and wanted some help.  Well the dr said,,,At this point in time,,he couldn't help us out as he didn't know enough about it and his protocol for his office,,,was stop all meds,  He told us if we wanted to go to the best heptalogist to call and gave us number.  So we have phone calls into this new dr now as we speak and hoping we can get in maybe real quick!  You were right,,,TnHepGuy,,,This problem was way over this drs head and he pretty much admitted to that soooooo,,,,Maybe I will get a dr like Cindees,,or a Dr Brown Eyes isn't too bad either LOL   Thanks everyone!  Will keep you posted on latest updates!

[CARUU]

I'm 9 wks post 24 wks of tx and am having some fibromyalgia type pain, as well as digestive problems.  The digestive is dx gastroparesis, the rest of the aches and pains seem to be considered non specific and I've not been told it's fibro.  The neuro seems worried about follow up on the arm and shoulder ONLY, since I was thre for a nerve conduction test.  My GI sent me to the hospital yesterday for a chest CT scan and deep vein ultra sound because I'm having trouble breathing. (no blood clot/embolism) I seems impossible at this point to think all of this will ever be more than a big mystery.  I also hope that, with time, these things just get better. caruu

[DoubleDose]

I did 18 months of tx (Type 1-b, previous relapser), and am now 8 months post-tx, and still clear (SVR).  My arthritic pain began about two to three weeks after finishing tx, and continues to wax and wane.  I am scheduled to see a rheumatologist in two weeks to pursue related issues.  I have just begun low dose thyroid replacement medication (synthroid) for mildly abnormal thyroid levels, and symptoms to match.  Sorting out all the post-tx, and prior HCV related, and autoimmune related symptoms is going to be a real picnic I am beginning to realize.  My greatest hope is that the issues will fade over time as we re-adjust to life without outrageous immune system stimulation (interferon), and maybe, just maybe all the autoimmune reactions will burn themselves out.  I have some doubts, but remain cautiously optomistic.  My worst symptom is a drilling pain in the middle back that wrenches my ribcage, and radiates around to the front ribs, feeling like a prolapsed disc in the thoracic back region.  I will bet that it is connective tissue under autoimmune attack.  I am anxious to get the rheumatologist's take on all this.  He is supposed to be a really good one.
Overall though, I feel much better, and have lots more energy than pre-tx, and of course much, much more than during tx.  My eyes and glands are also irritated, and inflamed/dry.  Keep us posted as to changes in sx.  Good luck.

[cuteus]

check the activities: I was debating to go on Friday, but it would be  a long trip to  hardly get noticed by the media.  let's see what mention HCV gets this weekend...

UPDATE

[Sioux]

Hi,
It seems that some of the symptoms of both are the same. I had symptoms of FMS before I found out about the hep c. So I don't really know for sure how they differ. I hope your friend has mild symptoms. Mine are pretty severe.

[gonagetbetr]

Sorry to hear about the fibromyalgia, I have a friend that has it also but never had hcv to her knowledge. she does from time seem to have some of the symptoms of hcv. itching swelling urq pain etc have you found any of these with the fibromyalgia or with having the hcv does it all blend together?
thanks for any help you can provide.

[lackalustre]

are you still drinking a lot of water?? i mean a gallon a day. the meds can takes months to wash out.   it helped me with pain and other issues.      my pain issues are better now after a year off the meds. and i cleared too.  same length of tx. as you.     i think with time you may improve but some still have lasting arthritic type problems.   i suffered from fribromyalgia prior to tx. and it seems much better now.  just have a painful hip that wants to flare up easily.   but it you need stronger meds  you should be given them.   dont forget the water and eat a good diet too.  fruits, veggies, etc.   avoid junk food.  ha easy to say.

[Sioux]

TRy Vioxx for the pain. I too had joint and muscle pain (still do)
I was dx with fibromyalgia just last week. I am almost 4 mo post tx.

[Plutonium-kid]

Hello Jack,

Two mths ago I completed 24 wks of Tx & successfuly cleared the virus. I feel well mentally however, physically I do suffer from moderate arthritic/rheumatoid like pains. My lab tests indicate a RF value of 152 IU/L (Normal Range= 0.0-30.00).
I do take Tylenol but it's useless as you have discovered. I'm full of HOPE that the after-effects of HCV plus Tx will slowly fade away. I had this virus for 30++ yrs, therefore I don't expect a sharp 180* turn. Pls let's be patient & our REWARD will come with time.

Good Luck,
the Kid....