Post Tx Residual side effects.

[DoubleDose]

Since many of us are finished with therapy, or close to it, it would be nice to compare short and long term after-effects as we proceed along the path to recovery.  It sounds like most of us are experiencing at least some noticable symptoms after tx.  My biggest problems are skeletal: joint pain in neck, back, hips, and recently in small joints: fingers, elbows, ankles, etc.  I also have shoulder pain and numbness, similar to peripheral neuropathy.  At seven months post-tx, and SVR status, my symptoms are pretty much the same, if not worse at times.  My thyroid is still slightly abnormal, but surprisingly tested NEGATIVE for autoimmune antibodies...which supposedly bodes well for long term thyroid recovery.  I am definitely very easily fatigued, physical labor in the yard knocks me out pretty quickly, as opposed to pre-tx, and I wake up with very dry, gritty eyes daily.  Lots of inflammation in mucous membranes...eyes, sinus, and throat.  Although in lots of ways I feel more healthy, if that is possible with all these accompanying problems, I am very curious as to the permanent, or just long term effects that we will be subjected to from the interferon.  I personally believe that it is logical to assume  the heavy doses of Pegylated interferon frequently provoke autoimmune disease which may become an on-going fact of life.  I am not sure if or why it would resolve, once it has become chronic.  

Willing, and other post-tx'ers out there:  Keep us posted on your experiences, both good and bad, after therapy. Let's see what we are dealing with.  Best wishes!!!

[BNR]

Pegory: How did you deal with the psoriasis?  I developed psoriasis towards the end of treatment on Pegasys and it continued after a bit until cortisteroids from a dermatologist helped clear it up.  My doctor feels like I had a reaction to the "peg" part of the interferon. (I may not have explained that correctly) The dermatologist also said she felt the itching was a reaction to the interferon. I developed the psoriasis while on PEGASYS, but did not develop it while on PEG-Interferon from Scherring or the regular 3x a week dosage of interferon/ribivarin. Although I did show undetectable at 48 weeks with the PEGASYS, the virus has come back.  I am reluctant to go back on the PEGASYS for a longer treatment time because of the psoriasis -- it was truly unbearable for me. I felt like there were ants crawling over my skin.  If you don't mind sharing, I'm interested. You said you had psoriasis previously? Not as a reaction to the PEGASYS? How did your doctor treat you?  Any information is appreciated. For me, any other side effects were tolerable. This degree of itching was not.
Thanks. PJ

[pegory]

I am 5 months post therapy.  I have had auto immune problems, specifically psoriasis and psoriatic arthritis with oncholysis (which is lifting of the fingernails) for 20 years.  The therapy sent this problem into high gear, in addition to the many side effects we all know of.  My arthritis worsened, four of my fingernails crumbled away, and the psoriasis was almost unbearable.  In addition to increase meds to manage those problems, I had to be on a regular regimen of neupogen and procrit for the last 5 months of therapy.  It was a tough year.

The good news is that I was still clear 3 months post TX and  the sides have slowly disappeared.  My main concern was that the arthritis and psoriasis would go back to more manageable levels.  And they have!!  Even the fingernails continue to grow back.  My blood work is all within normal parameters, hair is growing back, energy is increasing, brain fog decreasing, memory is improving, I have gained back 20 lbs. of what I lost, and I don't want to gain back the other 10.  The therapy shot my thyroid so I continue on synthroid which is a small price to pay.

The thing is, I was one of those who just knew I wouldn't have problem with sides....geeez was I wrong.  So after therapy, I determined to not be anxious over lingering side effects.  Some are not completely gone, but I am doing so much better that I have confidence they eventually will.  

I hope this will help to encourage others.  Hang in there, and check with your doctor if necessary.  I highly recommend anyone with joint, back, or hip pain to see a reumatologist.  My 6 months post therapy bloodwork is due in one month.  Please keep me in your thoughts and prayers, and I will report back with results.

[jonilynn]

I had the terrible pain in my legs, and also had to go to Pain Mgmt. was given Phentanil / Morphin. Thank goodness that the pain is gone. Some aching joints remain, and Brain Fog- please tell me when this will end . I am currently 3 months post TX

[honey1616]

Hey there Lady! Its always so great to see you and your postings are always so uplifting to everyone here!  You are a God Send to all of us!  I just wish you could visit more often!  I'm so sorry to hear that you are feeling so bad with the fibromalga,,,,and wondering if that is from you having hep c or previous tx...or none of the above and just something you have.. I can't even imagine having to be on morphine and know you must be suffering! You will be starting tx soon right?  I'm praying that you have an easier round this time...maybe just knowing what you are up against will make it easier!  You are in my prayers and thoughts daily and we all will be here for you! haha Did you see where LvdbyGod named a kitty after you?? Keep us posted (((((Hugs)))))

[cindee]

Hey DD!!!! I don't know if I'm the best one to answer questions about sx...since I relapsed, but when I couldn't stand the pain any longer I had my GP refer me to a pain specialist. There is also a great pyscologist there who is studing the lasting effects of the lastest combo we've most all been on. He says it causes deep tissue damage and fibromyalgia. He confers w/ my pain specialist as she doesn't know as mush as he has learned, but dang if she's not learning very fast! !st they tried me on 15mg of morphine 3x a day...it just didn't work completely...then she changed my morphine to 30 mg 2x a day, that was an increase of 15mg per day. Well the morphine didn't last 12 hours...maybe 5 to 7 hours (I've always been on a fast release morphine...allowed one a day for break-thoough pain...when it's really bad). So the last time I went in was last wk and I told her I was hurting so bad some days I was crying. She told me NOT to ever wait until my next appointment to CALL her. So this time she changed me to 30mg of morphine 3x a day...with only 15 fast acting mophine pills; they are 15 mg per pill. So far so good. The pain is much better now. She told me to take the morphine about 6 hours apart during the day...then by nite the morphine would be built up in my body so I could rest at nite. It IS WORKING. The psycologist says from what he has studied that it can take up to 2years to get better, and get off the morphine. He is a GOD send! I was worried about being on moprphine and starting tx again real soon, and I addressed this to my pain doctor. She says he shouldn't have a problem w/ it because it's not so bad on the liver as other pain meds. I'll keep you all in-formed! Love and prayers, Cindee

RING!!!!!! Hey girl, it's good to see ya back. I tried that other forum, but my computer is soooooooooo slow, that it just didn't work for me. WELCOME BACK and I hope you're here to stay!!! I love ya bunches girl. Hope you are feeling well. Cindee

[kennedge]

ok lets see...speakin of ...my eye vision cleared up immensly after tx... feel like i am eagle eye again..i go for 6 mo post in about 3 week...have already gained bak 20 lbs of the 30 i lost...gonna miss those 18 yr old abs...ha can hardly fit my 34's anymore...too much energy...seems like i am going to climb the walls if i am not doing something....still some dry mouth...and i really don't know what my mind was prior to tx...just know it does not talk to me as much now...i will see doc first time after tx on june 30...i guess to pick up "My Dr cured another" award.....