This forum is for questions about medical issues and research aspects of
Hepatitis C such as, questions about being newly diagnosed, questions about current treatments, information and participation in discussions about research studies and clinical trials related to Hepatitis. If you would like to communicate with other people who have been touched by Hepatitis, please visit our new
Hepatitis Social/Living with Hepatitis forum
We await your wisdom
Sorry about your mother - interesting about the steroids and thank you for sharing.
Deb - I'm thinking about steroid usage for my ribs... Something has to stop them from popping.
____|____ the sternum piece up to my neck feels like I have to pop a flipping knuckle every day --- it is very uncomfortable. Especially if I cough. Or sit with my shoulders forward for too long. Well - guess what hayfever does to asthmatics... LOL! Cough city.
But --- the good point of all of this is --- these are my last sides...
I'm losing my brain fog - little by little... I still have aches and pains --- but they are merely a whisper of what they were... and my vision is getting better - My tendons feel almost normal --- a little stiff --- but not like 4 months ago... And my lower back is feeling able to move... I can eat --- everything tastes good -- and I'm in a great mood almost all of the time now.
I have energy.
So --- I'm a little worried... because if the pollens keep up --- I'm going to need something. And I'm a little scared to have to go through all of that again.
Meki
The people I know who have complications with steroids are using it on a daily basis or close to that. Once or twice a year doesn't seem to bother me at all. I also take an asthma controller, Q-Var, which is a steroid. Took it throughout tx, twice a day. Also needed steroid skin creams, again throughout tx. I wouldn't worry about it. Asthma is no picnic either.
http://www.medscape.com/viewarticle/413634
But since it looks like you've got your SVR now, the use of prednisone should not cause the same problems for you that a chronically infected HCV patient might experience in the sense of increasing viral activity and the subsequent rate of fibrogenesis. However, be forewarned there's been a lot of talk (and fear) on this forum about the so called occult or low level persistent viral presence supposedly detected in the liver cells and PBMC (blood cells) of long term SVR patients. And because this may be true, it's thought that taking immunosuppressants like prednisone after achieving SVR might trigger a relapse. Much is made of two supposedly "confirmed" cases of SVR patients that had relapses after being given massive doses of immunosuppressants (I believe it was solumedrol). But this theory that active, viable HCV virus exists in our bodies at very low levels long after we SVR is controversial. It isn't fully accepted in the scientific community yet, and there are only a few studies that suggest this is true. There may be flaws in their detection methods or there may be something else going on that simply makes it appear there is viable virus hidden away in our livers after SVR. Plus a whole slew of reasonable questions have not been conclusively answered, like "if there's viable virus inside our bodies, why doesn't it simply become a full blown (re)infection again?" and "Considering that an SVR status has been proven to be extremely durable and long lasting in the vast, vast majority of those that achieve it - if there is viable virus in their bodies after SVR-ing, why don't we see people relapsing after (1) experiencing a significant challenge to their immune systems (via cancer, HIV etc) or (2) after taking immunosuppressants like prednisone and/or solumedrol (or any of the lesser steroidal meds like nasonex, clobex etc)?" This particular question is especially compelling considering what a large number of SVR patients there are now in the world. And if you consider how often and common steroidal med use is (for things like allergies etc) amongst ordinary people (including SVR's), along with the fact that there is a sizeable subset within the HCV SVR community that are old, and/or have experienced significant challenges to their immune systems (via cancer, HIV etc), and/or have taken very large doses of immunosupressants in order to control a serious health issue (like a transplant rejection or becaue of an autoimmune condition). Considering the people within this subset must number into the thousands upon thousands, and yet...we just dont see relapses. SVR durability remains nearly 100%, and there are very reasonable arguments to be made that can readily explain away the teeny bit of "relapsing" we do see (mosty in the sense of reinfections via chronic IV drug use, or by people who were mistakenly identified as SVR in the first place). So with all of this said, it certainly seems clear that prednisone usage (especially mild/moderate usage) after a confirmed SVR status is achieved will not lead to reinfection in the vast, vast, VAST majority of those that take it. (and the reason that may be true is simply because the virus has been effectively and permanently ERADICATED)
Lastly, remember that prednisone does have significant side effects whether or not you are SVR or have never been infected with HCV. But if you have a good doctor that knows you are SVR and a serious allergy or health condition that warrants its use, then in my opinion I wouldn't avoid taking it if I really needed it. Although speaking for myself, I would not take it until at least 6 months post tx (unless you desperately needed it), just to make absolutely certain the cooties were gone for good before tempting fate by tuning down your immune system with prednisone so soon after stopping treatment. But generally speaking, rest assured there are a large percentage of SVR people out there that are using steroidal creams/shampoos (which are absorbed into your body and do have an immunosuppressive effect) for rashes, and/or are using steroidal nasal sprays for congestion, and/or are taking steroidal inhalers for asthma, and/or in rare instances have used strong steroidal meds like IV solumedrol to suppress a serious allergic reaction (like from a bee sting). And yet they do so without relapsing en masse.
i had multiple corticosteroid joint injections during IFN/riba tx. this was followed by low dose prednisone for arthropathy. i had held svr status 8 months post. still waiting for 'the year'. i also know a friend who developed pulmonary sarcoidosis after 12 months SOC(geno1) and took high dose prednisone EOT and reached SVR.
i am now on TNF inhibitors which are warned to exacerbate dormant infections including HBV and TB. i gave much thought to this course of treatment due to the occult studies. i know of one friend also on TNF meds and has held her SVR status. my liver doc said they will not effect my SVR. pharm co also states there is no evidence for reactivation of HCV. rheumy says he doesn't know.
my point is this. if occult strands of HCV is present and replicating then by this theory i may see a reactivation of HCV or at the least occult infection. i plan on close monitoring my SVR status and will ask for the value of testing for occult HCV presence.
perhaps others on immunosuppressive therapies especially our liver transplant recipients will come and share their insights.
Thanks again to mike for this information. If I ever again truly need to use steroids, I'll do so feeling much easier about it.
-- Jim
When i finally started allergy injections most of the problems went away.
I've seen pics of myself while i was on prednisone and it wasn't a pretty sight - moon face, swelling, puffiness, weight gain.
I've often wondered if all that time on prednisone either exacerbated or sped up the hep-c.
The last time i was on it for an extended period was between 1993 t0 1996.
oh, and btw, the riba rage is very similar to the roid rage i used to get from the pred.
wyntre
ps - i've also read you should try to avoid steroid while on TX but sometimes there's no other solution....
very
Thank you for that... It makes a lot of sense...
I was just commenting in another thread - prior to HCV DX - they thought I had cancer (due to massive symptoms and signs) - and determined I had an enlarged liver, blah blah blah ---- but still did not recognize the HCV.
I'm geno 3a - and believe to have had it only 10 - 11 years. I have damage to the liver that does not make sense to me --- when I hear of people who have had the disease for 20 and 30 years not having any symptoms other than tiredness... And having very small amounts of liver damage after that amount of time.
I do realize however, that each person reacts differently based on genetics.
But I didn't drink very much throughout my life (just never liked the hangover feeling - so it was once in awhile --- not a party girl) - I did take prednisone every allergy year when asthma got bad...
So thank you for that info.
I won't freak out --- I suppose now - what will be will be.
Wyn: "I've seen pics of myself while i was on prednisone and it wasn't a pretty sight - moon face, swelling, puffiness, weight gain. "
LOL - yeah - me too... me too. sigh... especially the moon face.... LOL!
I read a study from Spain that suggested prednisone was responsible for Hep C relapse in a patient that was SVR for 8 years. 3 weeks after ending TX I was prescribed prednisone for my lung problems. I WAS very concerned about taking it, but what do you do? Keep the SVR and die from lack of breath?
Sure enough at my 6 month PCR I was a relapser. Tried to get PCR sooner, but doc refused, he was a "this is the way it's done" doc. Wouldn't go outside the box.
Everyone I know (granted not a lot) that has taken prednisone (or some form of it) has relapsed.
I'm currently using albuterol daily (x3 - dependent on reaction of allergies and pollens - much less like 3x weekly during winter) I also take daily 10mg Singualair tablet and inhale Advair diskus 1x nightly 250.
So I'm doing ok right now -- but those are steroidal compounds (correct?).
And I've had a few days where it was close... I had to tap up on the benedryl and keep myself on them for a full week... (Let's just say - brain fog and benedryl do not go hand in hand... It's like walking around with a waterballoon head... LOL!)
So --- I'm concerned about needing the Prednisone --- I stayed off it, so far..
AND --- let's add on top of that, I have a "cracking" (like when you crack your knuckles) in the rib cage sternum area, that has been suggested for corticosteroid shots.
I'd really like to get some personal info - before I just go for it on the docs whim...
I'm learning that it's important to ask others before jumping head first into things --- because perhaps... we as a conglomerate have much more information combined - than they do singularly.
LOL!
I'm learning...
So - please - if you have anything --- details --- and thoughts --- or just opinions - I'll take them.
Meki
i disagree with her suggestion that prednisone caused relapse in the people she knows. i do not put down her experiences but do not believe this as a fact. it does not make sense to me due to the many people who have taken this med and reached SVR and held it. if prednisone caused relapse as she describes, my goodness it would be BIG LITERATURE listed as a contraindication for those with hcv and SVR. the truth is it is not contraindicated.
i too had alot of anxiety when i took it during tx and after SVR. i am still on it, and although i look forward to coming off it have really benefited the therapeutic effects.
please ask your liver doc HIS opinion as he is the medical expert on this and is responsible for the good advice he gives to you. use your wonderful sense to not take extreme examples of inconclusive literature as the truth.
hugs
also MrsO.....please do forgive my contrary opinion. i wish you the best!
One case out of probably tens of thousands.
Maybe.
I'm not a big fan of steroids but pneumonia or severe inflamation (inflammation) is even less desirable.
OK- maybe not afraid - but kind of very cautious.
Thank you ALL for every piece of info and opinion you've given.
Meki