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Post Info TOPIC: Autoimmune conditions/disease and hep C
Tig


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RE: Autoimmune conditions/disease and hep C
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Hi Trudy,

They do prescribe Suboxone here, but only as a bridge for weaning off other opioids. Itís quite an effective drug, but obtaining it is limited to short periods and not for chronic pain use. I had been on OxyContin for years, then chose to take Methadone for several more. They worked well in controlling the pain, but sadly was forced to wean myself off entirely. Finally, the powers that be decided to bring a hammer down on opioid use, for everyone. In Florida, they have gone so far as to restrict writing long term prescriptions of these medications to specialists. That can get pricey and in light of the opioid restrictions forced on doctors and patients alike, you may get nowhere. I hope there is some serious consideration made to helping patients with chronic pain and those that can benefit from short term use of pain medication. Iím not going to hold my breath...



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Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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Alison. I would def. be interested in discussing autoimmune conditions & diet etc...

Feel free to Send me a private msg and we can take it from there†

Trudy



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HCV Dx 1993 Compensated Cirrhosis dx 2016 GT4 TX 12 Wks tx †(ombitasvir, paritaprevir, ritonavir tablets) combined with Ribavirin (-)HCV (+)AIH and other autoimmune conditions...



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Canuck, If I sounded defensive, it‚s not personal- I‚m just tired. I really do appreciate the fact that you always reply with practical and supportive input (as with Tig) Im all too familiar with the brush off as well.. The dr I was previously ‚under the care of‚ was dismissive and curt after I explained that for the past year, I have had absolutely no energy and am always sick. His response was ‚Well some people just have better immune systems than other ‚ ...(sigh) nothing like a generalized statement to validate your declining health! However, he did do blood work and continued to investigate further as I returned every 3 months with no improvement . At first it was looking like a THYROID thing but the labs were not high enough (TSH 6.9), to explain the muscle/joint issues. I am perimenopausal so hypothyroidism and many other issues are a common finding at this juncture. I think if your issues are bothersome enough, you have to keep bothering the doctor until they order more tests or see another doctor who is willing to .... That‚s my plan of action anyway .... persistence, self education and the unwillingness to settle for anything less than a diagnoses. Of course I‚m still waiting for it! All the best to you Trudy

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HCV Dx 1993 Compensated Cirrhosis dx 2016 GT4 TX 12 Wks tx †(ombitasvir, paritaprevir, ritonavir tablets) combined with Ribavirin (-)HCV (+)AIH and other autoimmune conditions...



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Tig, have you ever considered a low dose of Suboxone ( or Subutex if your in the US)? Although I was not originally prescribed it for pain, it helps relieve some of my joint pain/ muscle aches. I‚m not sure how much monitoring/ supervision is required if it‚s prescribed primarily for pain but it may be worth looking into....

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HCV Dx 1993 Compensated Cirrhosis dx 2016 GT4 TX 12 Wks tx †(ombitasvir, paritaprevir, ritonavir tablets) combined with Ribavirin (-)HCV (+)AIH and other autoimmune conditions...

Tig


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Every morning as my feet hit the floor and the pain courses through my upper and lower extremities, I know itís definitely not in my head! The discomfort is real and as we begin the day today, I wonder if all of these 420 supporters arenít on to something? Supplements have helped, but usually temporarily or they prove that the placebo effect is real.

On a similar vein, it pains me†wink†to see the opioid problem affecting so many people. I was a pain management patient for nearly 15 years, managed with opioids and lost access to them due to the current mindset that says theyíre evil. Now Iím just in pain, without management. Some people have a better quality of life as a result of modern and some not so modern medications. Those with chronic illnesses shouldnít be grouped into the same category as others. There is clearly a difference in need.†

Just my



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Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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Well, I don't know about anyone else, but I definitely have paranoia and hypochondria!! heehee Now those I can easily self-diagnose in myself (I just don't know what ever else I have going on, aside from those).

I also have things going on. Similar to you, (kinda). Where you say ... "muscle/joint pain/stiffness combined with persistent dry eyes/mouth and chronic fatigue" ... I've been harbouring "things", oral issues, skin things, allergy things?, weird things!, I only lack any labs or confirmations from anyone who will say they are†or are not "immune" related. I guess I didn't help myself when I got all technical and exclaimed to a doc one day (early on in my frustrations), that I must be immunologically "self-imploding"!, which was met with persisting "poo-pooing", and seemed to set a stalemate precedence of no testing to confirm that perhaps i am just physically unlucky! All I know, for now, is that I have to settle for my bothersome afflictions to be†"me" related. No one (doc-wise), is alarmed for me, and no one BUT me is alarmed or suspcious about unexplained "things" in me, I had to do some serious arm wrestling just to get a CRP post-treatment for goodness sakes. Never mind me asking for the further labs that I would really like to have. You are lucky they are at least following your prior testing in some kind of ongoing fashion, a good part of the battle, and that they have given you some feedback thus far, and that with continued looking/testing/thinking you will all, eventually, bit by bit, get you more answers. I have gone through 3 docs to even just get to the point of finally be referred to get some allergy testing done! Cured Spring of 2016, took me until Fall of 2017 to fight my way past everyone to get "an in" to get to see a dermatologist! jeez! Talk about the slow boat to figure out answers for myself.

I wasn't critisizing you, far from it, there would be no shortage of interest or sympathy from folks around here about what you are going through! I always look at these mysterious ongoing physical complaints, like yours and obs, and many others who post about them (and mine!) with keen interest, sympathy and frustration, because we can never seem to get to the bottom of these things, and often there is such a lack of evidence, clarity, defining, or cooperation with docs for testing of same/labs to show anomolies, to even begin to get it figured out or come up with fer sure explanations. We have seen so many of these concerns and complaints come up, and it never goes anywhere other than looping back to the accepted studies and facts that already exist out there about detrimental associations between thyroids and interferon etc, or trying to learn about ANA's, SMA's, IgGs, cryoglobulins, and the ole stand-by "extra-hepatic manifestations" (lymphomas, renal issues, other maladies) all associated with HCV!, the common labs they can look at, etc, etc, blah, blah, blah, and yet it still doesn't help some folk, to have at least that knowledge. Almost all of it (the auto-immune topic) is well beyond my understanding!

I thank you for sharing, every little bit helps, in the knowledge pool. Good you straightened me out on the time line, about only a +ANA prior, and then lichen came post-treatment, good to know. I hope you will keep keeping us apprised so we can learn from you and your experience and all the things you deduce as you go along. If I ever git me figured out, I'll be sure to let ya know! C.

†PS - right after I posted this I saw Obs post! I can't resist now that both you and obs brought up diet ... HA!- you should see MY piles of supps and such and the research I consider and do! (my personal cornucopia of hope, or, how to fix myself 101)!†



-- Edited by Canuck on Friday 20th of April 2018 06:47:25 AM

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HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

(SEE UPDATES IN BIO)



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Thanks Trudy,

Ive †been to umpteen specialists but no diagnosis and Im now sick of know it all Dr egos that are rather patronizing†

Its like an ever changing game of wac a mole...avoid one thing (food wise) only to figure out its now something new triggering symptoms, but I am very lucky to have a lovely consultant integrative med Dr who kept me alive long enough to do the new treatments and now helps me deal with the morphing mysteries of a damaged immune system (and nervous system).

I just discovered that I cant eat pistachios..and thats bloody unfair, but as with other trigger foods...Id rather give them up then have to crawl up stairs etc.†

Id love to chat about diet with you if you feel like it sometime, maybe in private message.

Alison



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57 y/o, Infected via transfusion Oct'83, GT-1a, F-4 cirrhotic,
tx Holkira pak/moderiba 12 weeks

2 year post tx- dragon slayer†



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Thanks for the response A.

autoimmune conditions are impossible! I am trying to control through diet. Hope you have found a regime that works for you .. that at least keeping the flare ups at bay long as possible)

Trudy



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HCV Dx 1993 Compensated Cirrhosis dx 2016 GT4 TX 12 Wks tx †(ombitasvir, paritaprevir, ritonavir tablets) combined with Ribavirin (-)HCV (+)AIH and other autoimmune conditions...



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Hey there C. AKA Guru

yeah.. the sig line - Ill get on it asap

Listen, im not looking to blame or bash tx (without tx my days would most likely be numbered). However, knowledge is power and there is enough research out there, combined with my gut instinct to believe that the removal of HCV triggered my autoimmune disorders. How? (That would have to be another post explained with some microbiology)

Were the autoimmune disorders there before tx ? No.

i was ANA + before tx - yes (no symptoms whatsoever)

4 months post tx, I was diagnosed with

oral lichen planus by oral pathologist (autoimmune condition)

I have since been tested for inflammation markers ,

Nuclear Antibody titre (Hi) 180

Nuclear Antibody Pattern- Speckled

(Speckled pattern is seen in SjŲgren syndrome, MLE, MCTD, Systemic Sclerosis)

*Also seen in 10% of normal healthy population*

Given my ongoing muscle/joint pain/stiffness combined with persistent dry eyes/mouth and chronic fatigue - 2 doctors have said it is autoimmune in nature † I have now been have been referred to a new specialist- rheumatologist.

this is a very common scenario with autoimmune conditions .. many doctors, many opinions .. eventually a diagnosis.

im not posting any other labs as I dont have the energy or desire...and i already have a doctor to analyse them.

Anyway, my reason for the post was not to feed in to anyones paranoia or hypochondria, but to find out if anyone shared a similar experience ...†

yes yes.. so glad not to have HCV!!! Yay!!!! Hajalluha!

Trudy



-- Edited by Trudylookinglass on Friday 20th of April 2018 02:25:02 AM



-- Edited by Trudylookinglass on Friday 20th of April 2018 02:29:01 AM

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HCV Dx 1993 Compensated Cirrhosis dx 2016 GT4 TX 12 Wks tx †(ombitasvir, paritaprevir, ritonavir tablets) combined with Ribavirin (-)HCV (+)AIH and other autoimmune conditions...



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Hey Tig!

Yes, ultimately I think its my price for carrying the virus for 20+ years- along with my particular genetics. I didnt do interferon, but rather a cocktail of obitasvir, paritaprevir, ritonavir tablets...combined with Ribavirin.

The OLP is still hanging around -seems to come and go no matter what I do. This winter its been particularly active as there have been a lot of cold/flu viruses

Hangin in there though

my liver enzymes have remained within norm range

Gamma Glutamyl Transferase has been Lo (not sure what that means but Ill take a lo vs hi for a change -thank you very much!)

Hope your well

† Trudy†



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HCV Dx 1993 Compensated Cirrhosis dx 2016 GT4 TX 12 Wks tx †(ombitasvir, paritaprevir, ritonavir tablets) combined with Ribavirin (-)HCV (+)AIH and other autoimmune conditions...

Tig


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Hi Trudy,

I looked back at our conversations and failed to find any mention of previous Tx. Did you ever take treatment with any form of Interferon? Just curious, as it has been associated with some of these issues. I had some thyroid function problems during and after Tx, but seem (?) to have resolved.†

How is the Oral Lichen Planus? You mentioned some time back that you had the erosive form of it. Has that improved?†

Iím pleased that we have all defeated the Dragon. Thatís the last thing any of us need, in addition to the other issues some here continue to have or have developed afterward. Is this one of those ďdamned if you do and damned if you donítĒ things we hear about?

The extra hepatic manifestations from HCV are getting better known. I hope testing and early treatment prevents those conditions from developing. I canít avoid the conclusion that many of these conditions developed in many of us, because we packed the virus around for decades, waiting on something that would destroy it, while it destroyed us... Į\_(ツ)_/Į†



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Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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Well I certainly have immune/autoimmune problems, I had them before treatment, they havent gone away after treatment. However, The symptoms/problems that I have, †do not seem as dire, overwhelming or life threatening as they were before treatment.

Although I am pretty convinced that my PN (peripheral neuropathy) and nervous system issues were/are very much worse after treatment.†

interesting article, wonder if he/she has done much follow up research

A†



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57 y/o, Infected via transfusion Oct'83, GT-1a, F-4 cirrhotic,
tx Holkira pak/moderiba 12 weeks

2 year post tx- dragon slayer†



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Hey trudy!†

So glad to hear from you again!

I had to re-review our old threads to remind myself of your particulars (as no sig line!). But, I recall (now) that you were a long standing GT4 (NOT decompensated which I think came up in a confusion of info once) and perhaps NOT cirrhotic, as your pre-treatment Fscore got determined at "F3" (no kPa noted to that) but meaning (perhaps) you were maybe†up to as high as 12.5 kPa's (or perhaps quite a bit lower than 12.5). And, that after cure your kPa came down to a lovely 6.1 kPa's!†biggrin†Wasn't your oral lichen thing†developing/happening prior to your GT4 treatment?? And, at the time of your pre-treatment assessments your ANA showed up as a +1 (no "titre" mentioned) but +1 would indicate a lower end of titre I believe. And they noted an "increased" IGG in you at that time? What are these labs now?.

It seems to be a given that HCV (alone) can cause these (and many other) aberrations to labs, such as a +ANA, (a +1 elevated ANA does not necessarily indicate you do or do not have auto-immune problem). People can show an +ANA, or a 1+ANA and it may not mean you (unequivocally) have or had auto-immune hepatitis or other auto-immune diseases (related to HCV or just all created of your own bodies volition/revolt), it would be hard (for us) to verify if you have auto-immune issues or not - maybe you do, but as far as I know none of us hear are "auto-immune specialty" docs!†wink

Do they keep testing you for your ANA's, IGG's, SMA's, CRP's, eosinos and other such things†(with titres)- do THEY (all your docs) SAY (unequivocally) that you DO HAVE a verified/and confirmed documented case of†"auto-immune" disease processes going on?? - if so, are they treating and following you for this? Have they suggested it was "caused" by your HCV treatment itself?†

I think if you ask people around here, we will all be a little afraid and suspicious of these wonderfully powerful and mysterious drugs we recieved (that so miraculously and effectively cure our horrid HCV infections), because (not being scientists) we cannot possibly understand everything about these drugs. It is a very hard thing to speculate on, all the things that could change in us as a result of not having HCV anymore.†

We are a little open to paranoia and fantasy about "what else" these drugs (or HCV) can do to us! You will likely receive no shortage of people wondering things like this .... would it be possible that after HCV cure, it could somehow trigger auto-immune things in me?? All I know is†... is that I am SO gald to be rid of my HCV, because I do believe I know what would have happened to me if I continued to pack my HCV around unchecked. I am grateful to not have HCV anymore. Did I have any kind of auto-immune things going on in me prior to cure?, do I have auto-immune things now because I got rid of my HCV, NOT a clue! I kind of doubt I can find/read any proof, evidence of auto-immune things being triggered in me simply becuase I no longer have HCV. I had WELL-developed sicca (Sjogren) syndrome decades prior to my cure, and i still have it, so what does that mean? Just don't know. We can all speculate and theorize, but like i say, studies, scientists and docs have the best tools and minds at hand to better suss these theories.

What ARE some of your current labs (that they must†be repeating on you) for all things "auto-immune"? At one point did you say that you had had maybe a 1/3 improvement with your oral lichen condition, post-cure? Have any conditions you attribute to "auto-immune" improved at all? Have any labs , like ANA (or like those I mentioned above) changed for worse or better?, +1, +2, +3, +4 ANA's?, or, have you been following your actual ANA "titres" and other such labs??

What is the dental peoples opinion on the staus of your mouth - is it holding it's own?

Lovely your other liver function related labs have been showing up normal and you are well-HCV cured! Major victory! Huge.†biggrin†C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

(SEE UPDATES IN BIO)



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Pre HCV treatment, I was informed that I tested positive (ANA +) for autoimmune hepatitis. Though I am SVR- for 1.5 yrs (and my liver enzymes are normal), I have developed numerous autoimmune conditions since treatment (oral lichen planus, AIH, SjŲgrenís Syndrome...). This road began 4 months after finishing HCV treatment. I am aware of the connection btw. HCV and autoimmunity (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3484639/) However, I am curious. to know if the removal of the HCV triggered my autoimmune conditions as I had none whatsoever before. Anyone else in the same boat? If so, did your dr discuss the subject before treatment?



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HCV Dx 1993 Compensated Cirrhosis dx 2016 GT4 TX 12 Wks tx †(ombitasvir, paritaprevir, ritonavir tablets) combined with Ribavirin (-)HCV (+)AIH and other autoimmune conditions...

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