Putting the Prednisone SVR Question to the Test.....

[meki]

Well Folks - this year is phenomenally horrid with flora and fauna that I am allergic to.

So I'm down capacity in lungs with Asthma and cannot breathe very well, even with Albuterol and other meds.

I'm currently on these medications: Advair, Singulair, Neonase, Albuterol, Combivent plus benedryl and if that doesn't work, I go to Zyrtec then to Allegra... I also drink a ton of Dayquil when it gets really bad.... Take Mucinex and other mucous thinners.

It's been very hard to just get gulps of air....

Sigh.

So Prednisone went in at 7 am today.

I've been terrified that I'd have to take the Prednisone - for fear of "reactivating" the HepC virus...

But because Dr. D said once you are SVR - the disease is "gone"... I've calmed down a little bit.

Now... I'm a bit concerned... But what will be will be.... Unfortunately I like breathing and can't live on THAT many medications just to do it.

I'm only taking it for a short period of time with a taper off....

This is a test --- only a test.... Sigh....

Well --- if there are any comments you might have, please feel free to post them --- I'll let you know the results..

I finished TX Feb/Mar of last year (2007) UND ----AFTER week 12 in 24 week TX.

It's been 2 years since I've needed Prednisone in the summertime... So let's hope this quick dose won't destroy that entire TX.

Meki

[gauf]

I HATE PREDNISONE! My wife had to take high doses for years and it nearly destroyed her. It aged her prematurely and she has the internals of a 70 year old. It saved her eyesight but at a terrible price. Be careful with that stuff. Meki.

[mikesimon]

Don't worry about it. Your SVR is durable and will survive a little steroid therapy. Mike

[sldb]

Maybe this will help.  Right after completing tx i had an anaphylatic rxn to crawfish, spent 2 days in the hospital recieving IV steroids every 4 hrs. All i remember thinking about was when my hep told me never to take steroids, "if u have any circulating virus in your system it will bring it back". Sent home on 2 wks of steroids, still UND. almost 2 yrs later.  Good Luck...Leah  

[meki]

Leah --- thank you.

I'm only on a 9 day course - which usually does the trick for this allergy based asthmatic reaction.

But I'm gritting my teeth  - and before I took the first three this morning - I had a near panic attack... My heart is still beating - I'll probably have to skip the Coffee this morning.

Funny ---- I was thinking... It might be the mosquitoes I'm allergic to.

Theory: From the time we've been here, during the summer time - I have always needed extra help for rescue breathing issues. EXCEPT when I stayed indoors during TX and recovering last year.

I hardly got bit by mosquitoes during that time.. I mean -- maybe 1 bite in 2 years.

2 days ago, we weed whacked the lawn - raked and stirred up a huge pile of skeeters.

I am covered in bites from head to toe... Literally. That night, I had a hard time breathing --- Yesterday it was difficult to breathe - This morning darn near impossible. Felt like an elephant had collapsed my lungs to just a 3 inch squeeze box.

I'm wondering if skeeter juice has me with all this sthuff. I've always developed huge itchy bumps - unlike the rest of the family --- they get those little tiny bumps that go away next day. Mine last for a week - and I look like I've got some sort of disease from the Congo. *grin*

Anyhow --- I took them this morning.

Leah - you  have no idea how much your words have comforted me.

Hugs guys.

Thanks for the responses.

Meki

[meki]

gauf --- wow... She's so pretty too... I loved yer pics up there.

Mike - thanks dude. needed to hear that.

*MWAH*

Big kisses to y'all.

Meki

[gauf]

I think the riba has some good sx in that I seem to be immune to poison ivy and mosquitos while on tox!  I may have to take it every summer (grin).  My wife is a great gal, but she cannot keep up with me at all. I have learned PATIENCE!

[marsfreek]

yea I have that too,the other day a skeeter bit me and when it tried to fly away
it went down like a lead balloon. It even exploded when it hit the ground.

[meki]

LMAO! Too funny mars...

[Trish77]

"All i remember thinking about was when my hep told me never to take steroids, "if u have any circulating virus in your system it will bring it back".

Leah..does this apply to steroid cream at all?  My family doc just prescribed me steroid cream.  Might seem like a silly question...but applying steroids to absorb into the body... had to ask.

Trish

[TnHepGuy_]

Post-SVR and post-spontaneous clearer's are safely taking "mild" doses of steroids every day. The main concern with occult and any potential for rebound comes in either severely compromised immune system cases and/or extremely strong steroidal class or similar drug (e.g. - transplant situation) cases.


TnHepGuy

[Trish77]

The above is more for Meki I'm sure...yet I have a question of my own, please.

I'm on treatment at the moment, so I am not yet post  I wouldn't say my immune system is severely compromised, yet it is compromised as it is on treatment. Still okay to be applying steroid cream?

Trish

[kickboxingmom]

My husband Bob said to tell you nine days of steroids will be fine.He took Pred. for 26 yrs.still take today.If your doc. said it's o.k. it should be fine.It will help with the inflammation.My own take on this.I have watched one kickboxer after the other either in the ring or speedclass have to go outside to breathe.My daughter had asthma (exer.induced).We help them, putting arms over their heads,treatments, what ever we think they need.Trainer tells all to keep exercising.I have watched over and over and the asthma keeps getting better and better.My daughter no longer has to use any meds.You sound like me with the misq. bites.You made yourself sound so pretty.lol.Bob said the pred.is harder on your mind than liver.I don't know about the hep and prednisone.
If I remember, you have to go to the doc. you do.Not to many choices.I would say go with your intuition on this one.I know it's like running around the block as hard as you can, then breathing through a straw.You could also think about taking till you can breathe ,then taper off.Meaning maybe you won't have to take nine days.Then again , what if breathing should happen to get worse ? I'm not sure so think positive , do what you have to do.
Trish,
I wish I could answer your question but again, look how I answered Meki's.She's still scratching her head and everything else.

[meki]

I think topical steroids are alright - think cortisone creams and things like that should be fine. They don't completely go ALL through the body - whereas medication taken internally or intraven... might be going everywhere.

Methinks the topical stuff should be just fine Trin.

I did cortisone for the itchies... just FYI.

Meki

[meki]

Grin kickboxing mommy!!!

LMAO!

Got that straw thing down pat... Man --- like living under the ocean with only a straw to breathe through... But already noticed a difference today... and only about 8 hours later. So I suppose I needed it.

I'm gonna gain 20 lbs now... I just know it. SIGH... MORE BADMINTON... less pretzels.
MUST PUT DOWN THE SNICKERS... MUST RESIST THE TEMPTATION...

Sheesh - give me a snickers bar already.

Meki

[kickboxingmom]

Pass the snickers this way.I'm wishing you luck on this one.My gut intuition for you is this;
1.I think your to honory to have any buggers left.meaning;you've done your homework.A+
2.I think the asthma is the ruler here.meaning;you have to breathe.
3.Can you tell I'm doing me time and not doing dinner,etc.?
4.I really do think you'll be fine.
5.Problem.Meki can't breathe.Solution.Take your meds.Breathe.So you can get oxygen and think clearer.I see Meki breathing and itching.Get you new scratcher.I have to go and do stuff so whether you worry about it or not,guess what ? It doesn't change the outcome.Which I think you'll do and be fine.
6.Tell everyone the bumps are from a gross of bottle rockets.Good luck Meki.I mean that.

[pigeonca]

Your SVR will persist - I'd put a good bet on that if I were a gambler.  I took daily doses of Q-Var, a steroidal inhaler that's supposed to prevent asthma, along with albuterol at least once or twice a week throughout tx.  I've had two allergy attacks since SVR, each time with a 6-day tapering course of prednisone.  No problem.  Still SVR.

Here's a weird thing about topical steroids, however.  Because I'm diabetic and use a meter, I observed that some of the steroid creams and ointments made my blood sugar go up 20 to 30 points on  average, especially my fasting, which is normally normal (i.e. 80 to 100).  When I used topical steroids, my fasting blood sugar ran between 100 and 125.  So it must be getting through the skin and affecting a person systemically, I'd guess.

[IAmTheWalrus]

I hate prednisone, too, but it is a miracle drug for allery sufferers. I know how you feel. I have avoided any steroids while on TX, but once SRV: I guess that is a different question.

A friend of mine, who is a sports medicine doc, told  me that the damage steroids do happens when it is in your system for a long time. I used to get Kenelog shots (slow release cortisone) for allergies, and this doc said it is better to get the higher, but shorter dose associated with oral meds. That way it is not in your system long enough to start real damage.

Hope you are breathing easier soon!
Brent

[IAmTheWalrus]

My Hepatoligist says the cream is OK. I guess it does not get into your system much via topical application. He did tell me not to use the prescription strength stuff on my face, though. I use the OTC version (1% hydrocortisone) for the face. He said the reason not to use the strong stuff on the face had to do with thinning of the skin there.

Good luck,
Brent

[Trish77]

Thank you.  That helps a great deal.

Trish

[sldb]

You can use hydrocortisone cream, but i found a product called skin gel by aloe life which is pure aloe with a few added ingredients and that worked great for me with the riba rash during tx.  much better than cortisone cream...Leah

[Trish77]

Thanks Leah, I appreciate the tip.  I'll look for it.

[Mikkimoe]

I don't know where I'd be without prednisone...been a miricle drug for me. When i was dx with RA 14 yrs ago - i was in the killer pain like the one I'm in now  in tx (great flashbacks) They tried everything - celebrx, methyltrexate, Imuran, gold etc. Was alergic (allergic) to all of them - then tried prednisone and have been on it every since. It's inexpensive and really works. I never gained weight, it seems to give me energy (I've even been know to snort it for immediate pain relief) I ususally just take a maintainance dose of 5 mg per day but have upped it to 10 with my current pain...but everyone is different - you have to play it by ear.

[TnHepGuy_]

As others have mentioned, I wouldn't be concerned about using the topical cream. Your immune system at this point in time is "lowered", but not severely compromised. And the amount of steroid that would actually be absorbed and make it's way systemic within you would undoubtedly be minuscule.

Best to you as you continue to forge your way towards SVR.


TnHepGuy

[mikesimon]

I want to go on record - I love prednisone. I agree with Mikkimoe - it's a miracle drug. Mike

[mremeet]

I took a$$loads of corticosteroids during my tx, and early on too. I developed a really nasty rash from the telaprevir at about week 6 and stopped taking it by week 7 or so. I had to take large amounts of prednisone at that time in order to control the rash (remember, this started at week 7 of tx!). This went on and on for about a month, with doses of prednisone going as high as 80mg a day (that's a lot!). Until finally it got so bad I had to take a shot of IV steroids (a drug called solumedrol), which finally seemed to settle things down (or at least get them on the right path).

I was tested with a sensitive PCR all during this phase of my treatment. And have been tested for the remaining duration of tx, up until this day (now about 1 year post tx). UND...UND...UND...UND. Undetectable all the way through, never even a blip on the radar. And I'm SVR now and feeling great. Also, prettydamscared (PDS) took a load of prednisone just like I did, and she remained UND during her bout with the rash too. She never made it to 6 months post tx, but she was definitely looking like she had her SVR in the bag at the end as well.

Anyway, I'm not buying the much overhyped fear of recurring/reactivated occult/persistent virus whatever. Prednisone should only be used when absolutely necessary, but when you need it...you NEED it. I wouldn't worry about losing your SVR due to limited prednisone use. Good luck...

[meki]

OK guys - much thanks...

Everything I look at now -- I wonder how my liver is going to process it --- if it can bring back the virus - or if it's going to make me even sicker.

The knowledge of this virus - the TX --- the whole kabash --- it totally changes your life... Your perspectives of life.

So you sometimes worry a little bit.

And you overthink things...

And you worry some more...

Anyhow - for a moment there - before I popped the 3 pills - I looked at them and thought.... Do I really wanna breathe?

LMAO - sounds silly - because there was never a doubt that I wanted to breathe... But I wanted to find something else that would work.

Like that --- without being that.

So I took them.

Because I do wanna breathe... LOL!

So - all of your comments guys - believe it or not - have really taken most of those fears away...

And like all of you --- at my next PCR test next year --- or three years down the road.... I'll be a little nervous...

I give super hugs to each of ya.

Meki

[Trish77]

Thank you on both counts.  I got my prescripion and I went to bed last night realizing that, for the first time in ages, scratching wasn't a bedtime activity.

Trish

[Aquila]

While we're talking prednisone, does anyone know why the new phase 3 trial for telaprevir for relapsers and non-responders has in the Exclusion Criteria:

- Patient has condition that requires use of systemic corticosteroids.

The other telaprevir trials don't say anything about systemic corticosteroids, just this one.  

http://clinicaltrials.gov/ct2/show/NCT00703118?term=telaprevir&rank=6

I thought maybe it was to do with the rash, as mremeet and pds both needed systemic corticosteroids to control their treatment rash.  

It just struck me as odd that it hasn't been listed as an exclusion criterion until now, unless it was in the protocol but not listed on the clinical trials website.

Any of you PROVE people know?

Aquila

[btsmith]

Hi meki long time no talk to.  I see you have one of the same problems I do with the asthma, but mine is more like chronic bronchitis.  First I believe that Advair can cause some problems if used for a long time.  It has a steroid in it and although it is suppose to sit on top of the lung (the steroid) some of it has to be absorbed by the body.  I noticed on my last trip to the hospital that when they put me on oxygen and I reached oxygen saturation,  my breathing was fine for about 18 hours.  I still have the hep c and low rbc's which doesn't help carrying the oxygen to various parts of the body.  Are you anemic?  Seems to me you are taking way to many breathing medications,  you might want to persue a different line of thought on this.
   I got a call from OHSU, the leading research facility in Oregon, on friday. They want to schedule an appointment for a research project they are doing on Hep C.  I don't know if you remember me but I am the guy my clinic wasn't going to treat.
   All questions welcome about respitory problems,  I have been studying them for years.
Also the mind (depression, etc.) can trigger asthma attacks too.
btsmith

[mremeet]

My guess is the reason they're precluding those who are using systemic corticosteroids (like prednisone) is for three primary reasons. (1) is because corticosteroids are immunosuppressants. Immunosuppressants, as their name implies, suppress the immune system. These types of drugs address and treat situations within the body when the immune system is overstimulated or has mistaken certain parts of the body as an invader (like a bacteria or a virus).

Remembering what immunosuppressants do, consider what the objective is during current treatment for hepatitis C is. The objective is to *stimulate* the immune system by taking immunostimulants (along with antivirals). Interferon is a powerful immunostimulant, and although ribavirin's mode of efficacy is not completely understood, it is also thought to stimulate certain immune responses within the body. So as you can see, the primary goal of SOC treatment is to stimulate the immune response, NOT to suppress it. That's why if a patient who was taking an immunosuppressant like prednisone might be precluded from enrollment into a drug trial who's primary objective is immunostimulative. Taking prednisone during SOC based tx would be like standing on your own shoelaces - it's contraindicated. It would make successful treatment much less likely and would skew the statistical results in a way that would not be representative of people who were not taking an immunosuppressant. (i.e. it would make the test drug's performance appear weaker than it would be with a patient not taking immunosuppressants).

I suspect the second reason for exclusion would be (2) because prednisone can be used to control serious rash, which is a distinct possible side effect of taking telaprevir (and to a lesser extent, SOC as well). Someone who was already taking prednisone might never get a rash, which would conceal the drug's true side effect profile (one of the objectives of the trial is to identify frequency and severity of side effects). Also, in the event a rash developed even in the presence of prednisone, this effectively takes that "big gun" off the table as a tool for dealing with the rash (although elevating an initially low "maintenance dose" may still work). And these rashes can be very serious in some people - trust me on that one! And since prednisone is the most commonly deployed and effective tool in the pharma-toolbox for dealing with rash, this is an important exclusionary factor that adds to the risk for those who might get a rash even while on prednisone.

Lastly, (3) I suspect another reason for exclusion would be because those who take systemic corticosteroids either already have some kind of autoimmune disease, or are likely to develop one if they start taking SOC along with a drug known to provoke nasty allergic reactions (in the form of rash). Ongoing allergic reactions are a form of autoimmunity. So someone with an existing vulnerability to autoimmune disease would quite possibly be at a significantly elevated risk for developing some form of serious autoimmunity (perhaps permanent) by taking immunostimulants (SOC) along with a potentially powerful irritant/allergen (telaprevir).

Anyway, that's my guess as to why they're excluding those on oral prednisone (for whatever reason). Take care...

[DragonTamer]

Hey Meki,  YES you really want to breath!!!!
And I hope you are breathing better since this thread began.... imagine me the newbie with some info for you!!!    BTW Tomorrow is my second shot gang!  Can't wait  ; /

I have been daring the skeeters to bite me.... I just figure they will get my virus!! heeheheheheh!  

Any way I agree with the above totally.... on every level, as a patient and an ex  health care worker myself, being educated about this stuff.  Prednisone is a powerful immune suppressant. I had a friend,  whos Dr. was a a total moron, and had her on the stuff for years, her head turned into a pumpkin! (I know there are those of you chuckling out there at the thought of a pumpkin head and it does sound funny I know, but truly her head got so big she looked like a Pumpkin head! It made her   bloat up like a balloon all over but again over time.... not  9 days so no worry there of course!!!  And as some here stated it worked for them at low dosage....and it is true, everyone is different but one thing is a fact it is a VERY powerful immune suppressant. period.

Further my doc and NP told me under NO circumstances should I use ANY TYPE of cortisone or any kind of topical steroid cream or benadryl lotion or whatever,  for the rash or itch IF I MIGHT get it. They were VERY adamant about it and this was just 2 weeks ago. IF I need anything I will use Pure Aloe (someone mentioned that above and it does work wonders for many things) or vitamin E or Neem oil/cream. If anyone who doesn't know and wants to know about Neem oil....I can tell you more.  It is safe, all natural and very effective for most skin conditions like these rashes and itches and psoriasis.

Now I know this has nothing to do with Asthma and I know that in some severe cases prednisone is needed short term. Certainly 9 days does not sound long to do any harm, or turn you into a pumkin head Meki ;),  especially if you are going to be able to breath again!!!     I agree with most here, I doubt it can bring the virus back.... hopefully you can trust your doc enough to know the facts about that. I will ask my Dr. Tomorrow, see what they have to say about it. It amazes me sometimes of  all the different info we all get from different Drs! Amazes and frightens me!!!

Another little tip for the breathing easier..... have you tried steaming with eucalyptus or any of the other stronger mints?  I know it sounds like middle age witchcraft.... compared to prednisone, for your breathing difficulties,  but it really can help open your lungs and clear out the mucus membranes...without taxing your liver or body.  And  you don't have to boil any toads or eye of newt with it! Just simmer and throw the towel over your head and breath deep! Or take a nice warm bath and pour in the oil.
There are spas that offer these treatments as well...I don't know what your situation is however.  But Eucalyptus oil can be bought in any health food store inexpensivly.  Just a thought. I rarely have colds but I got a bad case of bronchitis, this winter, it went through the school like wild fire....and steaming cleared it up in half the time of my colleagues...who ran for all the over the counter **** or antibiotics.  As a teacher, teaching little ones, it is like working in a petri dish!!! So I do what I can "naturaly" as much as I can. So of course when I have to pop this poison in my body every day and once a week it kills me to do so! But I am doing it!

Hope you feel better sweetie!  You have helped me with my questions so much since I joined. I thought I would throw in my 3 cents! Plus we have to get you better so Laurie can come up and get you on her bike! She said you could drive!!!!

All the best!
Dragon Tamer