5 weeks post 72 and feeling better??

[ponyshel]

hello all, I went to drs yesterday (gastro) and he was excited that I am still clear so far and that I finished the 72 weeks...he sees me in 2 months now..he stated that my thyroid would probably not function correctly again. I told him that the reg dr took me off meds bout 4 weeks ago for the thyroid. he states that I became thyroidtoxi something  and that being low 0.01 is better then being high...hypo...I aked him what I should do for this and he stated go to a reg dr.. I didn't get bloodwork done,he ddn't seem concerned about it...otherwise all tests are good...I am coming down with a cold right now..go figure  but I hope it kicks my immune system into gear..I also asked him about returning to work, and he stated that I could do whatever...
I have been off for so long that I am a little nervous about starting somewhere...
all else is well, hair is growing,nails,appetitte is great..can taste food!! rash is going away but left scars,energy level on the rise and reducing meds...staying on the effexor for now...I hope all is well with everyone...:) shelly

[nothing but the facts]

I am writing to hopefully help you and possibly getting some help for myself. I was successful in controlling the rash problem so many seem to have gotten. I am
3 months post treatment. I stopped after 40 weeks of 48 treatment course (genotype 1A) because of blood levels
(rbc,wbc and platelet counts).  I was virus free after
12 weeks and not long after I developed the rash problem.
I had an excellent hepatitis nurse specialist who worked
with my gastro doc. She gave me the tips that made the mess bearable and improve. Here goes, take as cold a shower and you can bear. Apply ice packs to irritated areas 30 minutes on and 30 minutes off. Wrap the ice packs in thin towel if unbearable. Be strong, it gets easier with time. Use an antihistamine, I used allegra
because it was once a day dosing. Use as mild a soap as possible like cetaphil, don't scrub irritated areas. After patting I used a inexpensive steroid cream, hydrocortisone 1% cream. I paid $5 or so for 4 tubes otc
at Costco. Avoid getting hot,especially hot with moisture. Sleep in the nude with only a sheet if it is
plausible. It worked for me and post treatment it went completely away by continuing the above treatment for a couple of weeks and then going to using a moisturiser twice a day. Now for my problem. During treatment my blood counts got progressively worse. They were so bad I was taking neupogen three times a week and procrit twice
a week and my counts still didn't get close to normal. My platelet count went down to 33 at one time and was at 67 when treatment was discontinued. Since treatment stopped I am still virus free but none of my counts have gone to normal yet..slow progression of wbc and rbc. The big problem I have is that my platelet count has actually gone down since tx. It dropped to 57 2mos post treatment and to 55 4mos post tx. Does anyone know of anything that could help me. I had stage 4 bridging of liver by biopsy pre tx which I hear is low grade cirrhosis. I have heard the platelet problem is because of the chronic liver disease.
Does anyone have any insight into my problem and anything I might do to help alleviate it? My platelet count was 90 pre treatment. I am 62 and worked throughout my tx and I still can't fathom how I did it..Help me please, the brusing and bleeding aren't fun...

[Valtod]

Mre, so you are a real rash warrior. I read from other posts on this forum how horrible is the VX rash. Thanks for sharing your story. As you said, this rash (especially when the drugs causing it are not in your system anymore) is "infuriating madness". If it doesn't subdue in the next couple of weeks with topical cremes, I'll probably go for the oral prednisone, as you suggested.  I just don't want any IVs! After 72 weeks Tx, just the thought of needles gives my the chills. By the way, probably because of the long Tx, my veins are also in bad shape. Today I went for blood work, they poked me 4 times, couldn't even draw blood and told me "sorry, come next week, we'll try again"...

I'm really sorry about your friends Charlotte and her husband. Such unexpected random tragedies seem especially cruel.

Take care...

[Valtod]

Jim, I'll ask the new derm about Elidel or Protopic and he's OK with it, I may give it a try. I printed out your list for fighting flares and bought the products you mentioned. I already started using the Cetaphil creme and so far so good - it seems to have some positive effect on the very dry skin of my neck. Hopefully, with some fine tuning I'll find a way to subdue the flares... Thanks!

[mremeet]

Quarantined, jesus where do I come up with some of these spellings?? ;-)

[mremeet]

I know exactly how you feel, I had a godawful VX/riba rash thing going on for a long, long time. I feared it would never go away, especially after I stopped taking the allergen and was even on high doses of prednisone. Here's a few thoughts based on my skin rash hell patient experience: First is that as you seem to know, you're having some kind of post tx autoimmune response. Since you've been off the drugs for only a little over a month, and you've also undergone a brutal long term treatment, it's not really surprising you're still having skin problems. The only reason I mention that is because it's easy to lose track of how soon you finished when you're having a hellish experience like that. Remember that with nearly 100% certainty these symptoms will fade significantly with time and in all likelihood go away altogether eventually (and that's without you doing anything). In your misery and drug induced fog, don't lose sight of that. My guess is that your skin response is due to residual riba still left over in your system (which has a really long half life) along with an extremely irritated and ramped up immune system. I've learned that once the immune system's wrath has been provoked, it ain't so easy to get it calmed down...so patience is in order (I know, easier said than done).

You mention that your doctor said you'd have to get IV prednisone? Why can't you simply receive oral doses? IV steroids are usually only administered if a large surge of steroids are required, which is usually as a last resort due to the risk profile of strong steroid use. I don't see why that would be necessary for what you describe, a nice ordinary taper schedule or oral prednisone may very well fix you RIGHT up. I had the VX950 uber rash, I mean it was something to see, and I was initially put on oral prednisone, starting dose of 40mg (a pretty hefty dose, but a fairly typical starting dose of pred for allergic/autoimmune reactions). This worked wonderfully, it calmed the rash right down. Things were going along fine initially, but as I tapered down from 40mg to 30mg (for a few days) and then 25 mg for a few days, and then 20mg for a days, all was well...but then I went to 10mg and all hell broke loose (I was still taking VX950 though). As it turned out 20mg was the minimal suppressive dose, anything below that and it came back with a vengeance. After my rash resurged, it was too late. I went back up to 30 mg, then 40mg then all the way up to 80mg (which is a very high dose of prednisone), and this was well after I had stopped the allergen (VX950). It still didn't work, it was a terrifying rash hell scenario. It was as if no matter what happened now, my immune system was so hyped up it would not settle down, even though the allergen had been removed (I had even cut way back on my riba too). Long story short after struggling with it for weeks, I finally went to the ER and got a big jolt of solumedrol, which is a powerful IV steroid like what your doctor is apparently suggesting to you now. The IV solumedrol finally turned the tide, the rash started to subside within hours after I received it. I still had to struggle with its after effects along with normal riba rash for the remaining ~28 weeks or so. Pretty much this same scenario panned out for Charlotte (prettydamedscared) too, even down to the threshold dose of 10mg prednisone (although she avoided the solumedrol).

But the bottomline is that prednisone worked initially, if I had stopped the VX prior to dropping down to 10mg, I'm pretty sure the rest of the rash horror story would not have happened. It wouldn't surpise me a bit if you started a moderate course of prednisone (maybe 40mg or 30mg starting dose) and tapered down fairly slowly to zero over at least 3-4 weeks, and it ended up fixing you right up. In fact, you'd probably start feeling better within hours.

But as you seem to already suspect, there is a possible catch. And as you mention, that catch might be the mythical HCV REACTIVATION!! Well, I think this is a thoroughly overhyped fear. Both me and Charlotte tooks loads of prednisone, and we took it early on during our treatment (starting at about week 6). And in my case I stopped taking VX950 by week 8, cut way back on my riba and also was subjected to the solumedrol. I also cut my treatment short at 41 weeks. And yet I have my SVR, and Charlotte was on her way to getting one too. I was really worried the steroids would jinx my SVR, but that was not to be. And in your case, you've already completed all of your extended treatment. I know the theory of "occult virus", and "subdued compartmental HCV infection quaranteed by your immune system" is all the rage in certain circles on this forum. And the research paper where Castillo et al reported extremely low levels of supposedly viable HCV in liver tissue samples and PBMC's in long term SVR's is endlessly cited...as well as the one transplant patient who supposedly had his HCV virus "reactivated" by a massive injection of IV bolus steroids (to avoid liver rejection). These are always trotted out as ominous examples of what can happen if you dare play with corticosteroids. But sorry, generally speaking I'm not buying it. Don't get me wrong, I certainly wouldn't take steroids willy nilly, but based on my experiences and based on the simple fact that so many SVR's have taken steroidal meds over and over again over a long period of time...and yet SVR rates are still as extremely durable as they are?? And this is also in consideration of the fact the data reporting SVR rates is not perfect. There is bound to be some error in what few "relapses" that are counted (as few as they are), including people who falsely tested negative on prior testing and including those that have been reinfected (especially considering the very high prevalance of IV drug use amongst HCV patients). My point is, is that I think it's very probable that either (1) the virus really is gone for good (i.e. what Castillo implies is wrong), or (2) if the virus is there in some shape or form, it has been transformed into a shattered relic that effectively behaves as if it's not there at all. In my opinion, if I were in your shoes and suffering the way you seem to be, I'd strongly entertain the notion of taking oral prednisone (with your hepatologist's and derm's approval, of course). Prednisone can really work some magic for things like this, and at this point if you ain't got your SVR yet, you're not going to get it. And if you do have it, a moderate course of prednisone is very unlikely to take it away from you. It all boils down to just how badly you need relief, and how much personal risk you and your doctors perceive there is by taking prednisone. But for me and Charlotte, there was no question about it. Steroids had to be employed, there was no choice, simple as that. For us, it worked and we got away with it.

Lastly I also used a strong steroidal lotion called Clobex. It was hot stuff, and it would really work at subduing localized rashes and patches of psoriases. You could actually feel it tingle when you put it on, it was good stuff (but to be used sensibly). They also have a Clobex shampoo if you're dealing with the same kind of ferocious scalp itch and dandruff I had (pins and needles!! maddening!!). It's expensive, but it works.

Whatever you decide to do, good luck. I feel for ya, I know the infuriating madness of a rash like that. You can really go off the deep end, stay doped up dude (and you do know about atarax too, don't you??). And don't forget, doing nothing and waiting for things to die down is an option too. Ciao...

[jmjm530]

I found Elidel works best for maintenance, as opposed to knocking a flare down. In other words, use a mild steroid to get rid of the inflammation, then continue on with Elidel. As to the black box warning, I consulted with at least five derms and all but one, weren't concerned at all, citing misreading of animal study data. Maybe you next derm will have another take. The benefit of Elidel (or Protopic) is that it's not a steroid, has no resistance build up, and doesn't cause rebound when you stop. It's safe enough to use on your eyelids -- that's one place I used it -- and often prescribed for infants. Meanwhile, def cover the neck up in addition to a good sun block, and be careful with the Hydrocortisone Valerate on your face. Even mild topical steroids like that can cause down the road problems (steroid rosacea for example) if you're not careful.

-- Jim

[Valtod]

Jim, thanks for the tips, I'll definitely use them. I should pay more attention to the sun exposure. As you know I live in Florida and I try to exercise whenever I can (ride a bike or just walk outside). Since the neck is my worse area of inflammation, now I think this might have be worsened by the sun.

In the middle of Tx, when the skin problems started, I was diagnosed with Seborrheic Dermatitis. Last time I went to see the dermatologist, 6 week ago, he said I might also have Psoriasis. I've been seeing 3 different doctors but in the same office.

Next week I have an appointment with a new dermatologist, recommended by my GP.

I never use Lidex on my face - mostly on my neck and chest. I'm very cautious with steroids and this is my real dilemma: how can I go through this without (over)using them.

For my face and eyelids I use Hidrocortisone Valerate. During Tx I used Topicort (Desoximetasone) on my neck - initially it worked but then it wasn't much help.

At some point, I did use Elidel for several days with no visible effect. Then I read about its cancergenic risks and I decided not to use it anymore. The dermatologist said it was probably a wise decision, especially if it wasn't working for me.

Also, in the last 5 months, they took 3 times samples of the dead epidermis and looked for fungal  infection but it was ruled out.

So the last thing I heard from my dermatologist was "we tried all the topical creams in our arsenal", the next step is injections. I didn't want to do that, that's why I'm going to a new dermatologist.

Thanks again for you advice!

[jmjm530]

These tips won't cure your skin issues, but might to some extent control the flares, and at least make you more comfortable.

1. Stay out of the sun. Always wear a sunblock outside on exposed areas. Use a non-irritating sun product like "Blue Lizard Baby" or "Blue Lizard Sensitive Skin". The "Linda Sy" sun screen is also excellent. "Google Linda Sy".

2. Wear loose all cotton clothing, preferably white (no dyes). Wash in non-perfumed detergent. Baby detergents might be OK. Double rinse in machine. Same with bed linens and pillow cases -- all cotton, non-irritating detergent, etc.

3. Soak in Balnetar Bath Oil. It' sOTC but probably will have to be special ordered. It's on the internet.

4. Shower with luke warm water -- not cold, not hot. Pat dry gently, never rub.

5. Instead of soap, use Cetaphil Gentle Cleanser which can be used with and without water. Ironically, water can be dehydrating and in some cases inflame your skin. It did mine right after treatment.  For moisturizer, use Cetaphil Creme Moisturizer.

6. Sometimes less is more on inflamed skin, so be very careful of drug store products. I tried lots of different moisturizers but ended up with the Cetaphil Creme, and only used it once a day, in the morning after putting on my topicals and sunscreen.

Hope this helps some.

-- Jim

[jmjm530]

Sorry about your post treatment skin problems.

Lidex is a very strong (class II) topical steroid and must be used cautiously. I assume you're using it on your body and not your face. Never use Lidex on your face and do confirm that with a dermatologist.

Speaking of which, are you seeing a dermatologist? At this point, it's a must, because they are more familiar with the arsenal of lotions, ointments and injections that may be required to calm your skin down and then maintain it.

Have you had a diagnosis yet? Is it seb derm? Psoriasis? Rosacea? An allergic reaction? Maybe a layered mix? Something else?

Diagnosis is important, but in any event it appears the Lidex is causing a somewhat typical steroid cycle (better when using it, flare ups when off) that tends to get worse with time, meaning the rash may come back with even more of a vengeance with more Lidex cycles.

When things got bad for me post treatment, I used Cutivate -- not as strong as Lidex -- but sparingly. Then, once the flare was controlled, I used Elidel or Protopic. These are non-steroidal immunosuppressant topicals. Have no idea whether they might be helpful in your case, but a good dermatologist might know. Another non-steroidal topical is "Dovnex" cream or ointment. And then there are the systemics, but liver toxicity can be an issue. Again, a good dermatologist will be helpful here.

The trick at this point is not to overtreat because things will get better (eventually) as the interferon leaves your system. On the other hand, you don't want to undertreat, because or you start to lose too much control of the skin conditions.

Again, don't know your diagnosis, but in my case I had layered psoriasis, seb dermatitis, and rosacea post treatment.  Gradually resolved over a year's time. Now about 80-90% better, but still not the same as pre-treatment. My first summer after treatment (2006) was the absolute worse on the skn because of the sun and heat.

Just try and hang in there -- and do see a derm -- because your skin will get better with time. Probably just not the time frame you want. And don't be afraid to change derms if the one you find isn't helpful. Derms are a strange breed, and skin treatment appears to be as much art as science.  I went through several derms, picking up something useful here and there.

All the best,

-- Jim

[Valtod]

Jim, Deb, how are you guys dealing with the autoimmune skin problems?

6 weeks post-Tx, I don't see any improvement. In fact, I'm afraid things get worse. When I use Lidex, 2 times a day for 2 days, all the red inflamed and itchy spots disappear, even where I didn't apply the cream. The skin shedding and 'dandruff' decrease. Then 2 days later the itching starts creeping back and the horror - The Horror! - of a new cycle of severe rash, pain, inflamed neck, swollen face, irritability and insomnia. New red spots spread to places of my body where I didn't have them the last time (and never during Tx). By day 5 without Lidex, the situation gets so bad that I can't sleep at all and I feel like I have 1000 needles in the back of my neck. I take Ativan but nothing helps the suffering - I squirm, grunt and groan, seriously doubting I can continue much longer through this misery.

Then I reach for the tube with Lidex and the cycle begins again.

I started Lidex 7 weeks ago and usually apply it only 2 days a week. My dermatologist now tells me to "discontinue it because apparently it doesn't help".  Well, nothing else helps either. I'd love to stop it ONLY if I could.

My GI tells me "you should consider Prednisone injections" but then explains he wouldn't recommend it, because it may trigger HCV relapse or worse SX. When I asked him should I see an immunologist, he said , "he'd probably prescribe Prednisone too".

It seems so many people face autoimmune problems post-Tx. How do you guys survive the cycles of autoimmune skin flare ups? The trap of stronger and stronger topical cortisones? Is there any exit out of this autoimmune quicksand?

By the way, I did the autoimmune markers test:
Anti-nuclear antibodies (ANA)   - 1:80
Smooth muscle antibodies (SMA)  - Neg
Thyroid peroxidase antibodies (TPO)   - Above norm

Tomorrow I'll do Cryoglobulin, Serum Immunofixation (SIFE) and Serum Protein Electrophoresis (SPE).

At this point, my GI, GP and Derm Doc stick to the vague reassurance "hopefully, it'll resolve by itself" but I'm so sick and tired of this game... In 2 weeks I have an appointment at Shands Hospital, Gainsville, FL.

Thanks for any practical advice!
Val

[ponyshel]

well I did it!! I called my gastro and pretty much flipped out...He called back almost immediately and we had a good conversation..He told me to tell him whatever I need and he will help me. I told him that I wanted to be referred to and endo and he is doing that as we speak..I also told him I want blood work i.e tsh,t3,t4 drawn and he will order it...
He just called me and said to find a dr by the weekend or go to the ER because I am thyrotoxic...
ugh! I am trying to call a local place to get all transferred and they aren't in due to a meeting...
I will call them and tell them I need to be seen asap. I feel so shaky today...my level hasn't been normal for almost a year...I have been at 0.01 for almost 5 months now...I'll keep you updated and I will try to be calm;)...Thanks so much...and how are you doing by the way ? I hope your healing as well :) hugs :) shelly

[nygirl7]

You do have Graves - hyper is Graves hypo is Hashimoto.  

you really need a good endo because my cousin recently had her thyroid removed and she had Graves as well.  You read all about that thyroid storm condition right?  That is DANGEROUS you cant have a doctor telling you leaving a TSH level of .01 untreated is ok, it's not you could really have problems.  I worry about you SO MUCH with this stuff.  Please go get a good ENDO PLEASE.

[ponyshel]

yes..my comp crashed and I moved so I had to change AGAIN..;) just a PIA...
I do feel better off tx and the sides are going away..I believe the dr is just pushing me off asI stated before..the move was great for me and still trying to catch up on bills etc. but getting there slowly..
I hope I remain SVR and don't have to go through this stuff ever again..I guess I'll just wait and see..your half way there baby!!!!!! great for you!!! It is a hard road but can be done as many before me
I wish you the best of luck,really...I hope your doing better...any problems with thyroid yet???
I hope none develope for you as it really stinks....just mimics alot of the sides...best wishes :) shelly
p.s. I posted a pic of my babys, the little one is now taller then the older one..need more recent pics!

[wyntre9]

You changed your moniker AGAIN!  What happened to mustangshelly?

Great to hear from you but sorry about the rash.  That's a really miserable SX whether you're still txing or finished, like you!

Doesn't sound like you're quite ready for work again, shell . . . .just my 2 cents.
Why not try and give yourself a real break . . .from the meds and work . . . if, of course, you can swing it.

i'm at week 38 - halfway through . . .

wyntre

[ponyshel]

thanks to you all..i really need some cheering up...I do still have the rash but not all over my body as before its slowly going away but it used to be much worse i.e 65% of my body, now only 30%...
I just use caldecene powder with contains talc and zinc oxide..I don't itch until I get hot or sweaty..
I am calling my dr tomarrow and telling him to either test my tyroid or else!!! I was reading up on some med stuff and I do believe I might have Graves disease...as my t3 and t4 haven't been checked in about 7 months or so...I have alot of the classic symptoms...I know the dr wants to shove me along to someone else as I don't have insurance and pay cash...they don't seem to like that much..go figure...So back to fighting for myself again,a road traveled many times and well known..ny ..I hope you find that silver lining..you can send it my way when your done!! Its really weird how some of us are all coming down with something  ie colds,food poisioning ( i hate eating out!) ...I do noticed I have become quiet the " germaphobe" lol...I wish you all the best and I will keep posting..:) hugs  shelly

[jmjm530]

I hope you're cycling the Lidex properly because strong topical steroids (like Lidex) can cause steroid rebound, i.e. a major flare of the very skin condition you're treating. A good dermatologist should be able to guide you here. From my experience, most non-derms tend to prescribe topical steroids that are too strong and for too long.

Beyond that, you have to be patient. While I had significant skin problems during treatment, I developed a whole slew of new skin problems coming off the drugs. Things didn't start to clear up for around one-year post treatment. It's also important that you try and get an accurate diagnosis, because many skin problems mimic each other, yet require different treatments. Rosacea is one example and steroids can often make the problem worse. I ended up seeing 4-5 derms in the months right after treatment until I came up with a skin protocol that worked with my individual condition. In the beginning, I was using  too many meds -- all prescribed by docs or derms -- and they became totally counter-productive. At one point, I was told to stop using practically everything (including soap and water) to help calm things down.

-- Jim

[mikesimon]

I wish you the very best. Mike

[nygirl7]

It's much safer to be hypo than it is to be hyper - your .01 makes you extremely hyper.

Unfortunately for us - they don't seem to ever go back to normal (even though my gastro said too that it "probably would" my endo said no).  

Im still left with the 'scars' too and i hate them but they are fading a little bit.  At least you are hyper with the food - I had to go and turn hypo right when the taste of food was the best thing in the world to me.  so I gainned back every pound plus ten (so much for being stick figure for ever). The only good thing about THAT was some of it went to my boobs which I as a skinny person always complainned about before ;)

Still looking for the silver lining there has to be one somewhere!

On my daughters computer at home - got a stomach flu (probably food poisoning from my cafeteria food here at work) and my boss threw me out.  I was supposed to go meet Andiamo and Mafalda tonight but can't tolerate gingerale and really don't think smelling food in a restaurant and laying on the table would impress them very much ;)


VALTOD - they are autoimmune flare ups I think because mine just started to cycle up for the first time since stopping.  I put the med right on though and it's fading away - when before the rash got so bad I looked like I had cherry tomatoes on my face LOL OH MY GOD when I realize what I've looked like here at workl for the past two years!!!!!!! No wonder I can't get a date!!!!!!!!!  


;)

Hang in there.  You're only shortly off treatment both of you - things will improve and improve and improve.  After the 72 weeks we all did it might not happen as quickly as with other people but we have to hang together. When you think about it we've really almost DOUBLED the amount of poisons we put in and are part of our cells and all that good junk now so it will take us TIME.  But we can't give up..hell or high water - hyper or hypo - autoimmune rash or riba rash - we've done it.

Deb

[Valtod]

Shelly, I'm glad you're feeling better... You say the rash is going away. How did it go away? Was it gradually, or did you have flare-ups the last 5 weeks? Did you use any topical cortisones?

I'm already 10 days off Tx and my horrible rash started subduing during the weekend but yesterday it came back with vengeance. And I've been using a strong cortisone cream (Lidex)... Why this flare-up? Am I going to get worse? Are these some autoimmune cycles that will torture me for life? I'm kind of freaking out with this rash. After 72 weeks, I don't have much left in me to endure any more SX :-(

Val

[PSP-n-Me]

I am so happy to hear that you are on the mend sweetie - what a great inspiration you are to me...I am confused about what your doctor said about the thyroid though, am I reading it right that he said hypo is worse than hyper?  I was told the opposite, hyper messes with the heart rythm, or something like that..

I do shot number 33 tonight out of 48 - I was doing real good till about 6 weeks ago - The anemia hit hard, out of the blue - my hemo went from 10 to 8.4 in 2 weeks time..I have been pretty much house bound, but I did 2 shots of Procrit and hopefully it will kick in soon...

I have been out of work for over a year now and I was thinking the other day about how hard it will be to get back in the swing of working 40 hours a week...But, it will be good to get back to a normal life and not spend all my time on Hep C boards - I can't wait to reclaim my life, if I am so lucky to stay clear of the virus...I wish you such happiness Shelly - You're da bomb!!!!

Hugs Beth

[tulips27]

so glad your doing better. I know from reading your posts what a long road you've been on.

Your on our way.
good luck