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Posted 4/15/2012 12:27 AM (GMT 0)
Any member here have FM & HepC and has not started the Int/Rib tx yet?
Posted 4/18/2012 3:57 AM (GMT 0)

Dor1813 Nice to meet you

Sorry its taken me so long to respond,

I have hepc, I have not been diagnosed as of yet

 with Fibro or anything else,But had some tests that came back elavated, 

So have a appt soon with a rhuemy doctor

 I did do Tx 4 different times My last one ending in 2007,

Infergen a shot everyday for 48 weeks.

For me and many others that I went through tx with

 Have felt the same way, I deal with servere migraines

servere muscle pain and fatigue, I also deal with memory issues

 I have asked doctors if tretament might have left me this way

But  they say No that it couldnt be from that,  So Iam always left just wondering

If I knew then what I do now I would have not did treatment so many times so close togther,

The old treatments were hard and had to take so many medications for side affects

Like procret, for red blood, neupogen for the lack of white cells

But maybe the new treatments are better

I know it doesnt really answer your question

But I dont think they will ever answer that question for a suerty

But like with so many things we dont know why always or how we just know how we feel,

Hope you have a good week

Take care

Always Renee

Posted 4/18/2012 2:54 PM (GMT 0)
Hi Renee

Thanks for your reply and no worries for being late. :-)

I am sorry that you went through so many txs which must have been real tough on you.  Gosh.. hats off to you and your power!

Ive read up on post-tx'ers having muscle aches and some have been diagnosed with FM and some docs said its one of the "post tx syndrome".

There are many interferon-free drugs currently on clinical trials with the PS7977 on Phase III now (don't quite remember) with mild sx and has quite good results so far.  It may be available in the US market in probably 5 to 7 years time.  I do not kmow the condition of your liver but hope it won't be too long a wait for you.  If you're in US it would be easier for you to partipate in one of those clinical trials. 

Well, thanks for sharing and time for reading my post.

Please take extra care of yourself especially your liver.

 

Posted 4/19/2012 3:24 AM (GMT 0)
dor Thank you ,
Iam so grateful to say
That I cleared on the last tx in 2007 on infergun,
Thank goodness!!! But Im always excited to hear for others New treatments
Maybe ones that are kinder to the brain and body,
Take care
always Renee
Posted 6/27/2012 3:19 PM (GMT 0)
Hi all

Haven't been here for a while ever since been with a Rheumy who said there's nothin wrong with me, just muscle aches and prescribed muscle relaxants and NSAIDs, Diclofenac.  Finally discovered im allergic to all these meds, accepted reality and live with the daily pain.  If not for my tendinitis, i would never have gotten Tramadol to ease my muscle aches.

I am 2 weeks into HepC tx and just got my first week FBC results.  Looking back my blood results were good few months ago except for elevated Eosinophils.  Its been dropping since 2 months prior tx and now a steep drop. 

Besides havin this normal reaction to tx, im still lookin for answers as to why my bloods been droppin prior tx and muscle aches that do not go away with a bad lower back ache that feels like im 80.  When i stand up after sittin for about 20 mins, my back can't be straighten for about half a minute.  I don't see anybody at my age (46) looking this way except for the older ladies (70 or 80 yo).

My finances are quite drained and still wondering if i should continue to pursue this matter with a new Rheumy or am i just wasting time and money.  Could it be just the HepC causing all this while im only at Stage 1 Liver Fibrosis?

Any input is much appreciated.

Many thanks!

Posted 6/27/2012 5:27 PM (GMT 0)
I finished 72 weeks of interferon/ribavarin Tx on Jan 12, 2012. I belive I may have had some symptoms of fibro before hand but I also believe the Tx made everything come to the forefront and made it much worse. That is just my personal opinion and I'm sure others, including the doc's have theirs.

It is important that with both fibro & hep C, especially if you go on treatment, that you keep moving.

6 month SVR test & ultrasound coming up in late july but was still UD at 3 months post Tx

d
Posted 6/27/2012 10:40 PM (GMT 0)
Thanks d for your valued opinions.

Wishin you all the best and SVR to come!

Posted 6/28/2012 12:49 AM (GMT 0)
Hi dor, I did the tx 3 yrs ago here in australia, and im not sure if i had fibro before tx, (i did it twice, interferon 1st then pegatron 2nd) and i searched for 2 yrs to find out what was wrong with me. I didnt recouberate like i should of, so 2 years later, lost of tests and persitance with my rumey and i had the dx of fibro........I do not envy your situation at all, for me its was the worst time of my life, i lost all my hair, nearly lost my marraige, it was a time i hope to never have to go though again shakehead , but i am hep c free and very greatfull for that. What type are you? 1 2 or 3. I was geno 1 which sucked, it the longest of the treaments as far as i remember!!

I have read lots of web articles that focus manly on pegaton not interferon causing lots of problems post treatment......I know all that is scary but my thoughts are that i am not going to die of liver cancer or serosis. And to know you  never have to worry about anyone finding out and judging you or giving it to some one else is ultimatly the greatest gift to give yourself. Try and hold on to those thoughts while in the darkest day of the treatment....... wink

Take care and know you will have great support during the treatment here as well for fibro. I wish i had of known about this site years ago, it is soooo good sometimes to know you are not on this journey alone smurf

Cheers Azumi

Posted 6/28/2012 11:17 AM (GMT 0)
Thanks Azumi and nice to meet you! smilewinkgrin

Im sorry that you've gone through so much with HepC and Fibro.  Good to know you've cleared the virus after all the tough times.  Its worth it, isn't it?  That's my motivation for starting this tx so i tell myself that i will never give in and never give up.

Im Geno 3a doing 24 weeks Interferon/Riba.  Its the 2nd week and so far managing the sides quite well except for the dehydration and horrible tastebuds, fatigue and muscle aches and stiffness gettin intense.  Today i was almost late for work cos i was toooooo tired to get going.  Tramadol don't seem to help much now with Fibro & HepC tx combination.  Being allergic to NSAIDs is also a problem im facing.

Well i wish you the best in life and health and take care too.

We all have somethin to live for.

Posted 6/28/2012 5:21 PM (GMT 0)
hi new her searching for answers. hepc hiv severe pain in all my joints. told i had fibro in Feb 2012. i think in it Lyme disease although tests for that are negative.
Dr. insists it is the hep c..no treatment for hep c i am 1a. waiting for better drugs to come along. the hiv is fine undetectable good t cells all blood work is "fine"
i have been in pain since last August. first ankles then wrists then elbows and knees progressed to pains in every joint. extreme fatigue . been to 3 ID Dr.s last one finally gave me pain meds. i am afraid i am going to die.
i am only 50 and my life just stopped all of a sudden. pain so bad have to go and take a hot bath or use ice. anyone else here suffer so much?
thanks
D
Posted 6/29/2012 12:29 AM (GMT 0)
Hi Guitargal,

I am so sorry for the situation you are finding yourself in. I manly hope that you are not alone in your journey, because isolation can be the worst thing when you are trying to find the truth!! I am curious though, why is the dr saying that there is no treatment for 1a?. I know here in aust (i have been seeing a gastro dr who was also my dr on the treatment) they are finding new ways of streamlining the tx. He did say though that type 1 has become a harder tx to complete because they have added another drug to the normal mix of interferon and ribavarin and people find it to hard to continue, or they get too sick and have to stop......... i have a friend who has hiv and i know the drugs took a toll on him. I was wondering if you could do the hep tx without causing your hiv statis getting worse. I was so animic to the point i could of had a blood transfusion, so I dont know how that would affect you. smhair

I so hope you find the right Dr for you because you alread have so much to contend with, and keep trying for a more diffintive dx because it could also be some on top of your fibro.....I did have pain with hep before tx but not as bad as you my love Im sorry.

Keep on fighting, and we are here to talk anytime..... :-)

I forgot to ask, have you been on the hep c site yet, there could be some very good informantion there also turn

Cheers Azumi

                                                                                                                                                                                                                                  

Fibro, headaches, migraines, IBS, Arthritis in knees and hips, and MENOPAUSE, OH THE HUMANITY..................

I take enep, panadine forte, endone when all else fails, magnesium, and vit b

                                                                                                                                                                                                                                  

We are the universe trying to unferstand itself.

 

Posted 7/7/2012 9:30 AM (GMT 0)
Hi all

So finally went for my appt with the Rheumy and diagnosed me with Fibromyalgia!

It was kinda mixed feelings with being glad and sad.  Happy that nobody can say im a hypochondriac or crazy anymore, my pain is indeed genuine with evidence from the doc.  Sad that i have to come to terms with it and live with it for the rest of my life and continue to work to pay for further medications and consultations.

Meanwhile, still waiting for the results of the spine x-ray and to do physiotherapy regularly. Doc prescribed Gabapentin 300mg to be taken once at night.  I looked and feel worse than the normal crap in the mornings so could it be just the side effects or im allergic or sensitive to this med?

My pain still remains the same during the day after taking Gaba for 2 days.  Is it advisable if i initiated a dose in the day for some pain relief?\Due to my ongoing HepC tx, the pain has intensify tremendously and also in many other new areas where it never hurt before.  Gastro doc treating me for HepC doesn't want to give any pain meds, he's probably too caring for my liver and me.lol

Im allergic to most NSAIDs, tylenol.  Wonder anybody has suggestions that i could bring up to my doc?

Any advice or input much appreciated.

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