Any Help for Post Treatment Syndrome

[Dalesar]

Hello,
Has anyone done anything that actually helps the post treatment symptoms, fatigue, lethargy, depression, etc?  There are thousands of posts regarding this situation, but I haven't seen anyone talking about things that they have tried that worked.

I am also curious if there is any research out there about what actually happened to our bodies that caused these continuing conditions?  Someone must have done some research, but I have never been able to find anything published.  If nothing else, I'd just like to know what was damaged so I can understand the process.

My history:  Treatment in 2001, 6 months, cleared the virus, been sick and disabled for the last 13 years.  Sometimes better, sometimes worse.  Stress wipes me out.

[FaithforHealing]

I have been suffering the whole array of post tx issues so many of us have.  I finally went to an endocrinologist and said I was there to investigate a three yr history of chronic pain, etc. after successful HCV tx. He ordered a 12 hour fast with an early a.m. blood draw. The thyroid test (TSH) indicates hypothyroidism (6.35 mlU/ML, Reference Range  0.27 mlU/ML - 4.20 mlU/ML). There are other too high or too low readings including low Vitamin D which he had said can cause pain. Not all of the results are in so I will be waiting to meet with the doc for the whole assessment. Maybe this is the solution, at least for me; have others had their TSH checked? Without the fast and a.m. draw my TSH has previously shown within normal range.

[susan400]

I've recently started back on a spin class. I used to spin about 3-5 days a week, about 4 yrs ago. But, hadn't done it in quite some time.  Actually, it's because it literally, at least right now, wipes me out.  I've done it the past 3 Mon. mornings at 9:15 (50-60min) class.  And I've been wiped out ever since the class ended this morning. It's a great workout, but my energy level is not as great as it used to be 4 yrs ago.  I am wondering if it's the Hep C, or if I'm still (in recovery) from this past treatment.  It's been 4 mon. and the TX was only a 3 mon. treatment.  Sometimes, I feel like having done SO MANY treatments, that it's starting to takes it's toll on me.  But, I can't quit exercising because I simply feel like if I did, I'd be unable to move and in no time, be in a deep depression.., so I can't allow that to be.  Susan400

[Frank J. Perrotta]

Hey Susan400, sounds like you are really trying to push yourself on the physical side of things.

I have always been a cyclist first and runner second. I cycle whenever I can but running is really tough as you point out! I do push myself in whatever way I can such as mowing the grass with a reel mower and always taking the stairs.

AND I just got this amazing pilates machine! It has a rebounder on it so you can use it as a kind of jogging machine but laying down! so there is no impact on your knees or ankles, etc.

I thought I would have no problem with this rebounder with all the cycling muscle I have BUT the level one aerobic dvd killed me! I couldnt wait for the 20 mins to end! Next I went to the level one whole body DVD workout! Crazy. I couldn't get off the machine after that 20 min workout!

It is a breathing & core philosophy + balancing the body. I am in a somewhat similar boat as you. I am on the lowest SSID and maybe with foodstamps and the help with some energy bills and other stuff I might be at the same level of income as you. I had to save up for this $500 machine thru Amazon and can say I am really happy with my purchase. If anyone is interested I can post the name and all... but as you mention after getting off the thing I feel really great. My breathing is much clearer and brain feels clearer for a bit.

[susan400]

I'm sorry you're experiencing this. I've been through it as well, with all the treatments I've done. I wish I had some great 'fix-it' advice.  All I can say is that you are not alone in this.  Even though it is very hard for me to stay motivated, I push myself to exercise. I may not be able to do the hyper intensive things like Zumba, but I can manage the elliptical for like 35 min. and the stationary bike. I can walk on the treadmill as long as I'm not running on it, because then, I get to winded (exercise induced asthma). I can do the treadmill about 3.6 MPH and about 2.0 elavation(this is at the maximum). I've tried to increase it like jogging, but get too much joint pain and shortness of breath. I also do the nautilus/Cybex weight machines.  And I make sure and stretch well.  It is very hard to do this sometimes. But, it does make my depression less and actually helps me to feel better when I'm done.  I've been suffering with insomnia for years, too. and when I don't exercise, I've noticed I don't sleep as well. The only way I've been able to get any sleep is to take something for it, but even with that sometimes if I haven't moved enough, I still don't sleep. Also, drink lots of water. In case you don't know my history, I've treated 12 times. Every treatment used interferon. I finally cleared when I was doing Sovaldi + Peg/Riba.  Did it June-Sept 2014. However, unfortunately, I relapsed. I found out on my 3 mon. post treatment viral load, in Dec.  So, I'm still fighting the dragon. I am fortunate to have been able to hold off cirrhosis. The treatments have helped to give my liver a rest at least, even if I haven't gotten to the SVR point. Also, my doctors tell me that staying in shape does help the liver as well.  With that said, I'm not entirely there..., don't have a 'six-pack abs', but that is not my goal in exercise anyway.  My only goal is to feel better and to improve my overall health.  I just throw this out there, but I do know what it's like.  After my 3rd course of treatment, my brain was so screwed up as far as learning new things, retaining information, concentration, focusing, etc.  So, I ended up on DIB (this is the type of Soc. Sec. insur. I have). It's not SSI or SSDI (I just recently found this out).  When I was on the phone with Soc. Sec., they explained that my Dis., was based on the amount of years (quarters) that I worked and paid into the system and I had gained enough quarters to qualify for this type.  I don't get much money on it and won't get rich by any means, but it does help. After they take out for Medicare, I cleared just a hair over $13 thousand a year. Which is not alot of money when you have bills to pay. Anyhow, if I was still able to function in the workplace, I'd be working instead.  Susan400

[otterwatcher]

yes the terrible night sweats and the chills and slight fevers in the day.Eye sight blurred like the muscles can't be bothered to work properly.It is  still early days since your tx though,give it a year or so for your body's natural interferon to recallibrate itself which it more than likely will.

[FaithforHealing]

Just wanted to add this thread to my watch list.

[timothy141]

Okay then, there is a ongoing condition, PIS. I am now 4 months EOT. My question this morning is related to night sweats. It has become a nightly ritual for, to change out of my PJs because I wake up freezing ad soaking wet. I understood that was a sign that treatment was taking affect.
I drink plenty of water water and yet my hydration level comes back with #'s like -.17%.
Also my eye sight has really begun to wane, besides all the emotional issues that I can't resolve.
I am really getting tired of this body and would like to trade it for a new one.LOL
I am now moving into an SSI hearing stage, but if there is nothing I can prove wrong with me, what do I do?
I know I am a hard case, knuckle head, I just wish these sx would go away.
  

[Frank J. Perrotta]

That is a really good point.

I just looked up my pain meds and none of them are opiate based. I have some rather odd pain issues sooooo am rather lucky that LDN should not be an issue.

I will ask my doc about LDN and opiates especially with me beginning LDN at around 1.5mg. at nite. I know the usual dose of naltrexone is 50mg!

thanks for that!

[Frank J. Perrotta]

OK I think I understand where you are coming from Dalesar.

I don't think there ever was a study on PIS. The docs at Mayo don't fit into the Three Wise Monkeys "See Nothing Wrong with HepC Treatment, Hear Nothing the Patient Says, Say Nothing of Meaning to the Patient"!

I imagine that after a time, a group of patients came thru the many doors of Mayo with multiple issues after treating... The docs probably built a data base and discovered that they had a new group of patients all with similar issues. A Syndrome! The one link to all the issues the patients were having was INTERFERON thus Post-Interferon Syndrome (PIS). Just based on observation and not a study at all.

They may be doing research into what may help us - LDN and maybe other things *I hope* but it certainly doesn't take a genius to figure out something is messed up with a bunch of HepC patients Post-Interferon treatment.

Shoot, once I got rid of my simpleton docs and my new doc took over my case he realized something was very wrong. It helped that he began as a medical research scientist who discovered his boss scrubbing the numbers!

He was borrowing the offices with an elderly MD who had gone thru 2 liver transplants and his wife had just treated for HepC and was suffering like me. These two guys knew things had gone wrong and when I told my GP that the Mayo came out with a syndrome he said "But Frank, we already knew all that."

Point being that it isn't what you call it but how you treat it after you find a doc who doesn't call you a craze!

[Dalesar]

I am trying to track down the study that Mayo clinic  supposedly did on PIS.  I talked to the librarian at Mayo, he could not find any reference to the study.

I did report to the drug company and the FDA several times.  I hope it goes somewhere, but I don't have a clue.

Several of the Mayo doc responded that this wasn't their field, more were out of town.  Maybe someone will have an idea.

I also talked to the intake person at Mayo.  She insisted on registering me before I could get shipped to a department.  After registration, she sent me to liver, hepatology.  Not much help, just a clerk looking to schedule me for an appointment with no information.  Show up and see what happens.  It's pretty hard to get past the white wall to an actual doctor or researcher who has any information.

Anyone else got any ideas?

[otterwatcher]

naltrexone and problems with pain relief http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1336752/

[otterwatcher]

I always worried about what pain relief would be available as an opiate alternative if I was injured and taking LDN or any opiate antagonist.Apparently it would be only paracetomol or ibuprofen-not terribly effective...

[otterwatcher]

re LDN,if you are taking opiate painkillers this drug is not a good idea as the opiates won't work!

[otterwatcher]

I think we're a larger percentage than they let on too. It took me years to get it together to come on this forum and as I find computers so tiring I only duck in and out. We need to make sure our doctors have informed the pharmas of our predicament and write to the pharma company involved ourselves to report post tx issues but as most of us can't even get dressed...

[Frank J. Perrotta]

I am not sure what exactly we are suppose to email the Mayo doctors about?

The way I see it Mayo is a private research hospital that is helping HepC patients out! I don't know if they are the group that defined PIS but I know at least 2 members here that got a diagnosis here of PIS a number of years ago which started a movement within the HepC community.

If you want to make some noise with the folk who really know something and are NOT doing anything about it start with the pharmaceuticals! Ask them to send you their complete long term studies of treatment - COMPLETE! It is a dirty little secret that all research is edited. Can you imagine what was edited out of the HepC treatment!?!? Reading thru the lit was a horror and to think it was even worse!!!

I can go on and on but will leave with this. Many say that those with PIS is a very small %. We are just a very vocal group! Well I say BULL! I live in a small rural town. I have PIS. My mothers best friend, three houses from me has PIS! What are the odds? Treatment nearly killed her. She doesn't get online! She doesn't have a voice!

[dontworry_behappy1]

I'm impressed :).   It always amazes me how little doctors want to talk about the effects of Hepatitis C.......let alone treatment effects.

Best to you

[Dalesar]

I emailed 49 doctors at Mayo in the Hepatology Department.  I am also calling in, but you have to go through a main intake office so I don't know how far I can go.

I would encourage everyone else to also contact the doctors via email.  Let's make some noise!

[Frank J. Perrotta]

... great definition and I would add, from what I have read, also seems to reduce inflammation.

[otterwatcher]

LDN=low dose naltrexone-it's an opiate receptor antagonist used in the treatment of opoid addiction and also alcoholism but in low doses is being tried to dampen the immune system.

[cheflady]

Excuse my ignorance but what is LND?

[Frank J. Perrotta]

Oh, can't wait for a report back.

Get some good questions written down. Make sure you record the call so you don't forget a thing... even ask that they record everything on the Mayo side and send you a copy - especially if you are going to pay for a phone consult.

Best of luck and this is really exciting!

[otterwatcher]

so do I-first port of call,the folk who did this to us-they have the most knowledge of PIS. (they do know about it,don't be fobbed off).

[Dalesar]

I think I will try and contact Mayo.  What have I got to lose?  Just money, but if you compare that to years lost, you get the idea.  I had been doing well for a few years.  This downturn is a shock to me.  I am now seeing a Naturopath.  She is giving me IV's with Phosphatidycholine and Glutahione.  Not sure if it's doing anything yet.

I think the Hep C or Liver department is a good idea.

[Frank J. Perrotta]

WoW, 3+ years! You really are an early adapter!

Mayo won't say anything unless you are a patient with them! My doctor (a nd his brother and father) studied there and contacted a couple of friends that are still there. They were very careful about what they are treating PIS with but at least they did confirm that they were using LDN but would not say anything else.

When I went thru the Mayo site I did notice that they did do phone consultations $$$ but if your insurance would cover a trip to one it would certainly be worth it... it was explained to me that one stays for about 3 days while you are seen by multiple specialist in various fields - a true holistic medical world.

I guess if you were going to call I would start with the Hep C/Liver Dept...