All I can say is the RIba made me a lunatic.. Totally destroyed a computer monitor in my frustration and rage. Oh well, after the fact, I ended up wth a better monitor. I do feel it makes me a little 'stupid feeling' when I'm doing treatments.
I wanted to thank everyone who commented on this thread. I just re-read it, good information. Just feeling validated helps me.
I looked at a recent write up for the tx and it does say neuro psychiatric incidents can occur during tx. Then further down it says the side effects may not reverse.
I don't remember reading that when I treated the first time. Also, I made a huge mistake and trusted my doctor when he said I would just have flu like symptoms for 4 to 8 weeks and then get used to feeling sick and be fine for the rest of the 48 weeks. HAH! I was so trusting back then.
Hi there, you did not double post, you only posted once but when DWBH picked your answer as the best it puts it at the top as well :)
You are ok, doing fine.
My doctor just told me today that they are now considering people who are UND at 3 months cured. I was happy to hear that....for everyone
Dee
Thank you all for sharing.
I think the doctor and drug companies are well aware of the mental side effects of the tx. They just deny.
I had a lot of problems and was told there was no way that it was related, yeah just like my hair loss wasn't related.
The good news, I am cure and and I am mentally better than I have been since before starting tx. so it does come back.
Time is what is needed I guess, though I do take supplements and get outside for some vitamin D and walk. alot
I have noticed the more active I am the better I feel.
Thank you all again for sharing. It is so important, back when I treated the first time there was no one to discuss this with for fear of scaring others in to not treating. I am glad that we can all share now.
It was very isolating after I first treated.
I think what you have said is interesting. Fact is drugs have effect on just about everyone who takes them. If you have experienced chemotherapy for cancer than you are aware that all serious drug treatment/chemo have side effects. All of your organs are effected by these heavy drug treatments. You can have kidney problems and this can effect your brain. You can have problems with your thyroid and this can effect your brain. And we all know liver problems can cause HE. which is interesting because hepatitis C treatment does effect all your organs in some way just like chemotherapy for cancer. I have a very large occurrence of cancer in my family and watched many experience chemotherapy including myself. The term is chemo brain and no everyone gets it. I don't believe this has anything to do with pre disposed addictive behavior. I do believe it's the results of a toxic level of treatment. It's not a new occurrence. People have been treated for many years for numerous illnesses with high levels of medication to cure them.
What I think is very sad is people starting treatment are rarely inform that you may experience mental side effects. Even pre cancer chemo fails patients in warning them what may occur.
Very interesting LIVE. I take 2000mgs of D a day and it seems to help me as well. I was interested in your wording "chemo-like drugs"......pardon me being naive but is that what they are comparing these drugs to? Well if I'm reading right it all goes away, the flat line effect I that is.....as long as I can still walk and talk after its all done and LAUGH I can live with that ;). Thx for the info
Deb
I've been doing a little research on this topic as to the mental unforeworned effects post Tx searching for answers. That would include not only short term memory and mental fog, but also lack of emotion. As we all know the neurotransmitters in the mind are set off kilter by these chemolike drugs, and our endocrine system then goes haywire. This is why for many post Tx, we lose the ability to experience joy, wonderment, anticipation, ect. Could go on and on, but the truth is (documented) the area of the midbrain is effected in a
negative fashion. This does not occur in all, but the prevalence appears to happen in individuals whom have a tendency for addictive behaviors.
By addiction, I'm not talking about alcoholism. Rather having a pre-ponderous to over stimulation with dopamine levels when engaging in tobacco, coffee, sex, gambling, overeating, alcohol, and many other situations where our reward system is somewhat askew.
Was interested in how to treat this post Tx phenomenon while using substances created in nature. As it turns out all individuals with these so- called addictions have insufficient levels of Vitamin D.
Vitamin D DOES cross the blood brain barrier, and these Txs effect their levels. It's funny, when I was 1st evaluated and diagnosed with Hep C, my Drs at Mayo put me on high doses of Vitamin D thru a prescription. Thought that was odd, since I was there to be treated with the "Revolutionary" new
Hep C meds. With all that being said, it appears from the enormous reading I've been doing Vitamin D seems to help reregulate these systems and reduce the emotional fatigue some seem to experience post Tx. This lost or devoid feeling of emotion would be called "Flat Line"
In conclusion the experts agree that making sure we have adequate amounts of Vitamin D will help with this mental brain fog, short term memory, and feelings of hopelessness. This Vitamin is NOT water soluable and should not exceed the RDA. Of course we all know Sunshine is loaded with it as I've wondered also why when getting outside into nature I always feel better.
Just some thoughts for the day. Along with my multivitamin I've incorporated some additional D, and honestly feel really good. I do know this is not the entire answer to the problem, rather a somewhat simple explanation into how our body restores and heals itself.
Hope everyone is outside enjoying another beautiful day in paradise.
Stay well
....Kim
Sorry bout the duplicate entry, don't know how I did it but gotta just laugh it off...can you say FOG...duh
Keep smiling
Deb
Thanks for conscientious bloggers. I finished S/O TX on 10/4/14. I was UND since 8/1/14 and to the end.
I have a liver transplant and clinical depression( possibly due to 2 trials of inf.
My hepC doc who is the King of inf. commissions here in Hawaii refused to prescribe S/O fearing I'd go off kilter( or he'd lose a commission) I did to some extent but used appropriate drugs to hang in there.Currently I am tapering off codeine.
I am curious of post TX effects. Today was the first day I felt better.The insomnia kills me, but I think I take home the gold this time.
ALOHA
Howard
Wanted to also add some thoughts on this topic. As a 2X Cancer survivor, I took a trio of chemo drugs or cocktail as they call it, 10 years ago and my memory was fully intact. 5 years later hit with another primary cancer and back to a different regimen of chemo this time a platinum based chemo with side effects that would kill an elephant. Mind intact.
Present day Sovaldi and Ribavirin. 3 months for 12 weeks. Wow, thought after my previous history this would be a slam dunk. To my surprise was totally caught off guard with no preparations or inclination from my docs or anyone else for the matter. Actually think I was the first treater on this forum when it hit the shelf Jan 15. No prior knowledge of what to expect.
Flat line is right. Was so devoid of emotion could care if I lived or died, and so not my nature. The worst of it was post Tx, and at a time when I was still UND wondering what the hell just happened. In hindsight the dopamine, serotonin, endorphin, connection had to come into play. Never took Interferon as this was my 1st attempt at Tx. It's now 5 months post Tx and still somewhat shaken as to what just happened. Hope I've seen the end of it as it was most unpleasant and extremely worrisome. There has to be documentation on the physiological effect of these drugs. Kinda felt like we were all broad sided with no proof to back up the claim. Lets just hope we've seen the worst of these meds and try to make awareness to others that they have not lost their minds. Am going to do some research and find the parallels to this dilemma. It's unfathomable that we are not forewarned of this episode occurring.
....Kim
Thank you so much for sharing your husband's experience. I really appreciate and I know that others will.
I have found that many people read the posts but don't respond. So...this helps many more people than we know.
Take Care
Dee
Thank you, going to read it now :)
My husband was on three antidepressants at the same time when he was in treatment, an it was very hard for him to make it through. Anxiety, fog, hopelessness... it really devastated him mentally. It was hard getting off all the medications once he was done, but 1 year later he has made a complete recovery and is his old happy, funny self.
Here is something interesting.
http://www.hepatitiscnewdrugresearch.com/hcv-neuropsychiatric-symptoms-ldquobrain-fogrdquo.html
Sorry not sure why it posted twice.
I wanted to mention that the first time I treated with Pegasys, second time Pegintron. To me there was a big difference between the side effects.
They were much worse with Pegintron
Hi, I understand that was why I wrote tx interferon, I was looking for information and came across papers about our dopamine possibly being reduced.
There may be other information about combining it with Riba, not sure there will be much else.. but it would be great to find.
Also this might have been the paper I was referring to, sorry. I would love to hear about others experiences. At one point I was taking NADH to try to help with the brain fog after tx.
Take Care :)
http://www.ncbi.nlm.nih.gov/pubmed/15576057
http://www.ncbi.nlm.nih.gov/pubmed/15576057
I'm going to read your reference. But the complaints concerning effects on the mind and hepatitis C treatment are not all interferon based. Drugs clearly effect everyone differently. I hear what your saying about chemotherapy having some of the same effect. But not so much the mental effects. I have never heard this of this degree from chemotherapy experiences.
I also, have been through a course of chemotherapy for cancer. Was able to work and remember everything. What I did notice on chemotherapy for cancer was the effect on your skin. Both seem to really effect your skin.
Hi I "think" this is the one, it is from 2005, not sure if there is a later one, I will try to find :)
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1255968/
Hi there, I read a study where they think that the tx with interferon depletes our dopamine levels which leads to the flat feeling.
I also had a mother-in-law with dementia and when I started to feel that way I was terrified.
Over time it has improved however talking to family members about their experience treating cancer I found we had many similar side effects.
i.e. not being able to retrieve a word or using the wrong word.
doing silly things like making coffee but forgetting the coffee or putting something in the freezer than belonged in a cabinet, etc.
I will try to find the study
Dee