Hep C Discussion Forum

Canuck, If I sounded defensive, itâs not personal- Iâm 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 âunder the care ofâ 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 âWell some people just have better immune systems than other â ...(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 .... Thatâs my plan of action anyway .... persistence, self education and the unwillingness to settle for anything less than a diagnoses. Of course Iâm still waiting for it! All the best to you Trudy

Every morning as my feet hit the floor and the pain courses through my upper and lower extremities, I know it’s definitely not in my head! The discomfort is real and as we begin the day today, I wonder if all of these 420 supporters aren’t 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  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 they’re evil. Now I’m 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 shouldn’t be grouped into the same category as others. There is clearly a difference in need. 

Just my

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

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 Sjögren 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

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? 

I’m pleased that we have all defeated the Dragon. That’s 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 “damned if you do and damned if you don’t” 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 can’t 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... ¯\_(ツ)_/¯ 

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!  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! 

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.  C.