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Enlarged spleen?

Hi all! I haven't posted recently so to catch you up....I was in the IDEAL study. Completed 48 weeks, but reduced interferon dose in week 24 due to low platelets. Relasped between week 24 and 48 (continued to week 48 of treatment because they did not tell me that I relapsed). I'm waiting for new PI study for nonresonders but in the meantime my GI noticed enlarged spleen (duh! low platelets probably due to this and not interferon). Since then I've had a CT scan, endoscopy, and biopsy with no conclusive results. I am F2 and evidently (per GI nurse) this level of fibrosis and portal hypertentsion  contributes to enlarged spleen but not to this extent. Have any of you had a similar situation? What is next with regard to testing? Any thoughts? Thanks to all for keeping this board alive and informative!
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Avatar universal
I too have an enlarged spleen. It has been enlarged for the last 10 years. My Hepatalogist thoughts were with my level of fibrosis and portal hypertentsion (Grade 2 Stage 2-3) it should not be so enlarged. He had me go to a Immune specialist prior to tx and have a bone marrow biopsy to see if there were other reasons for the low platelets and WB counts. Tests results showed the marrow was doing its job, many different parts to this test including a DNA. Conclusion, it had to be the portal hypertension. The spleen acts like a Pac Man the larger it gets the more it eats the platelets and WBC's
The interferon will also lower your platelets! So with me starting out with low platelets it has been our major concern. So far so good, started tx at 67 running about mid 30's,I am into week 38. Good luck with your tx.
96938 tn?1189803458
A couple of things.  Soory to hear about the breakthru, if you had known at week 24 would you have continued?  I think there is a risk in studies/trials when they don't interevene with rescue drugs. I've looked into PI trials recently for non-responders/relapsers.  It looks like they will be recruit in the next few months for trials still several months down the road.  In speaking with one the trial centers for the vx trials they told me that if they enroll non-responders/relapsers that it will have to be 6 months after ending combo therapy. Good luck.
Avatar universal
hi.im frm corner of pakistan.my mother 51yrs is dx hepc +2yrs bk.initially she ws on liver tonics and vitamins.her alt was btw 60 n 70.hr genotype is 3b.now her spleen is enlarged and har platlets r 70.she is cirhotic nw.hr endoscopy shwd varices.grade1.we went 2 4 hepatologsts.all hv diffrent opinions,we want 2 treat her.2 of them says 2 wait for platelts to rise.2 says not 2 waste time and start interfron.and hv chck on bleeding.we r really very tensed n confused.and 1doc said pegasys while other in favour of pegi.please if anyone can help.desperately waiting 4 my mom 2 be like she used 2b.
Avatar universal
A half hour with a dermatologist. Alert the press! I'm really having a problem finding one I can talk to and I consider myself pretty good at doctor/patient dialogue. Unfortn, the derms I see, don't particularly want any diaglogue.

Three derms back wanted me to use topical steroids for 2 weeks and shampoo and rub on face. Two derms back suggested Loprox cream and metrogel in addition to shampoos and topical steroids for 2 weeks. Current derm doesn't want me to use anything (not even water)but topical steroids for 10 days. After that he'll probably switch me to a sulfer cream and/or oral antibiotics. I'm pretty confused.

Questions:

(1) Does your current derm want you to continue with Metrogel or just use the shampoo? FWIW the shampoo just irritated my face. My curren't derm's approach is to totally calm thing down before going to the mainteance step. Of course I'm making progress with four days on topical steroids but the big worry is when I stop.

(2) Did you also have seb derm and rosacea last time you treated? If so, what did you do to treat it and how long did it take to go away, assuming it did.

-- Jim
Avatar universal
Did you derm (either one) tell you to use Metrogel on your entire face or just on your nose? My second derm (and internet sites) suggested to use it on your entire face. My current derm says that is all wrong. I already have an appointment mid July for Derm 4, in case this one doesn't work out.
Avatar universal
In answer to your question, my current plan is to follow new derm's instructions for 10 days. Specifically, to use Cutivate (topical steroid) on face and chest twice a day. Nothing else -- no metrogel, no loptox cream, no shampoos, not even water. Face is only to be cleaned by rubbing on Cetaphil lotion and then rubbing it off with a soft cloth or cotton ball. The idea is to calm down my skin which it is doing.

The tricky part comes after the ten days because you don't have to be a genius to make things better using topical steroids. My guess is derm will try and put me back on Elidel for the seb derm, and possibly oral Tetracycline or something similar for the rosacea to be followed with Metrogel and possibly re-introduce the medicated shampoos, but just speculation. Derm also mentioned something with Sulfur in it as an alternative to Elidel/Protopic when I balked about Elidel and Protopic. I have no idea why he is against Loprox since it seems to be indicated for seb derm.

My problem with Elidel and Protopic is not the black box label but some sides I experienced. Still, I'll use it if I have to because can't keep using the topical steroids. Haven't heard about Atopiclair but I'm almost afraid to mention anything to this particular derm because of his on-high attitude. So current plan is to go with what he suggests and see what happens. Backup is to see yet another derm and I've already booked that appointment for next month just in case.

What I'm really hoping for is that because this was flared by the treatment drugs, it will calm down by itself as the drugs leave my system.

Haven't had a chance to digest your entire post regarding your new regimen but I'll print it out tomorrow.

Let's hope this all passes soon.

-- Jim
Avatar universal
Glad to see things are getting better. I never tried the Loprox shampoo, only the Loprox cream. but since my new derm treats me like a two year old, I can't try that right now :)

You did mention a topical steroid that your derm gave you in your earlier post. (Not the very strong one but the weaker one) Are you still using it? When was the last time you used it and for how long?

As far as the overlapping of seb derm and rosacea. As of last week I had pretty diffuse redness on face so not so easy to tell where the seb derm ended and the rosacea began.

You probably mentioned it but once again, where exactly do you put the Metroge? And what about the vinegar? Where did that come from and where and when do you use it? So when you have a chance maybe you could break down your regimen in terms of what you use and where for rosacea verus what you use and where for seb derm and what overlaps.

As to oral antibioitics, I believe that is often a first line (or second line depending on derm) of defense with rosacea and then they try to switch to topical antibiotics like Metrogel. I was allowed antibioitics on treatment so I'm less concerned about my liver than the whold of idea of continually taking antibioitics -- resistance, gastro issues, secondary including fungal infections, etc.

As to my progress, I'm on day six of low-medium strength topical steroid twice a day -- so, of course, things are clearing up. The big question mark is what will the derm suggest after I finish the topicals, which he agreed can only be used short term. Last time I had a flare so I'm concerned.

Thanks for the update and please post if anything changes in regard to either your treatment regimen or progress.



Avatar universal
Thanks for the update. This will probably be my last stint for awhile with topical steroids as well. Like I said, things are fine now but I'm real nervous what will happen when I go off the steroids in about three days.

You said you were doing well for a couple of days. Do you think the Loprox shampoo could have flared things? I never tried that shampoo, but other medicated shampoos did irritate me.

One thing that calmed down my itch a little were the zinc oxide and zinc oxide/titanium dioxide sunscreens. Not sure of the mechanism, but possibly the ingredients themselves have either a calming effect or put the skin mites to sleep :) Others suggest they act as a skin "barrier" protecting it from further irritation.

Yes, I have checked the derm forum and thought about posting. That Dr. R. seems to know his stuff but recommends the antifungal creams for whatever reason my derm is currently against. I've tried tea tree oil and aloe vera, and jojoba is on my list except not allowed to use ANYTHING at the moment. Never tried Benedryl in any of its forms. Another site is SkinCell http://www.skincell.org/yabbse/index.php/board,3.0.html
I think it's in England or something, not sure. f

Cotton is better than synthetic or polycotton and I've heard it both ways about how to wash it. One is to use a mild cleaner so it won't irritate. The other is to use Chlorox to kill all the mites and to wash every day. Of course these are contradictions but what else is new.

Maybe it's getting time for you to try Elidel or Protopic. That is where my doc wants to go next but I'll ask for an alternative first. He mentioned something with sulfur in it.

Frankly, I'm more focused on my skin these days than on my 6-month PCR. Sometimes I wonder what I'd choose if given the choice. LOL.

Anyway, this week has been good -- I call it my steroid vacation -- so been able to focus on other things.

I'm still hoping time will be the ultimate solution. These things often do go in waves (flare-remission-flare) and hopefully I'll go into a long remission soon.

On myself, I probably won't have anything new to report until I see the doc Thursday and gives me the post-topical steroid plan.
Frankly, if that doesn't work out I'm thinking of doing absolutely nothing with the skin and seeing an allergist and then possibly going on an elimination diet to see if that might help . Some suggest yeast issues are at play and an anti-candida diet may help. Also may go back to Yoga, Alexander or some other form of meditation/relaxation. Maybe even accupuncture to boost the immune system. I'm not even adverse to Chinese medicine and herbs if I can't nail it with Western Medicine, although the herbs still scare the beezeezus out of me from my bad experience with my liver a few years ago. If I did do something like that, I'd wait until after my six month PCR and probably have my enzymes checked weekly -- maybe twice a week in the beginning.

Did I mention the Cetaphil cleanser is very non-irritating? I use it without water as instructed so my face doesn't dry out.  

-- Jim

  

Avatar universal
You can use the Cetaphil with or without water and instead of soap. My derm has me use it without water. Just rub it on gently with hands, and then wipe it off with cottom balls leaving a thin film of it on. Tomorrow is my derm appointment and I'll report back but this fellow doesn't leave much room for "discussion" so we'll see. Good with the pillows but the mites I was talking about were skin mites, not dust mites. Apparently everyone has them but some develop an allergic reaction, possibly because of overpopulation and possibly because of immune suppression. Yeah, lots of pimple/rash penis problems on the derm forum.  LOL. As to depression/lethargy, started drinking a few cups of coffee a day as my reflux gets better, and it does work as a pick me up, plus supposedly good for the liver. Sometimes I have to wash it down with a Pepcid complete however, we'll see. Did I mention the Blue Lizard BABY sunblock helps with the itching.

-- Jim
Avatar universal
Ina,

Looks like we have another member to this thread -- Dodger. Check out her post today, above.

Dodger,

Welcome to the rosacea, seb derm, post tx thread :) To get up to speed, scroll down to the "hypothyrodism" thread on 5/30. Lots of info back and forth you might want to print out. Same in this thread. Sorry you ended up here but congratulations again on being non-detectible. And in case you haven't gotten that far-- watch the sun when you go outside. Besides protective clothing -- Blue Lizard BABY sunblock is pretty good.
Avatar universal
OK. Back from my derm, Doctor Screwu.

Tried my best to be friendly so extended my hand in handshake which he finally took after skipping a beat -- maybe he thought my sebsporiasis is contagious or maybe it's the hep c, which he obviously knows little about because he was surprised that I didn't have to take interferon for life when I told him I cleared.

Anyway....

Screwu looked at my face after I did 8 days of Cutivate (Class V topical) and said it looks much better. (DUH, it always looks better after a week of steroids.) So he says I can stop the Cutivate. DUH.

Screwu prescribed two things. For the seb derm -- and only if itching and irritation returns -- he prescribed Cloderm, on a use-only-as-needed basis and not more than for a few days. He characterized Cloderm as a milder topical than Cutivate but preliminary research reveals Cloderm is actually a Class IV topical which means it's a STRONGER topical. Well, sometimes the derms disagree with the ratings so I'll give him a little slack here.

For the rosacea -- after first asking if I wanted to treat for it (as in why bother it will just come back) -- he prescribed Sulfacet. Haven't cashed the script yet, but I believe I should use this daily but only on nose and upper cheeks. Not on nasal fold and not on rest of face. Sounds like an alternative to Metrogel.

Then Screwu said, "no one can cure rosacea" and "See me in 6 weeks". Then he disappears. Before he left I did ask him about laser tx for the rosacea and he said he didn't have any experience but did give me the name of someone who does.

Regarding shampoos, etc, -- said only to use Neutrogena shampoo, don't use any tar shampoos, etc.

I believe ScrewU is under the impression that all the stuff I used before -- Loprox, Metogel, medicated shampoos, etc -- caused the irritation and itching. I did try and explain that the irritation and itching PRECEDED those meds but Screwu isn't interested in listening or logic. Still, I hope he's right.

---------
So what's the plan -- Nothing for the seb derm/sebopsoriasis unless it flares and then use another topical steriod for a few days until it calms down. Sulfacet for the rosacea and hopefully that will work.

I should add that oral antibiotics -- tetracycline for example -- are often used initially for rosacea with something like Sulfacet or Metrogel to follow.

Screwu said he didn't want to put me on oral antibiotics at this point because of my liver. I could have told him that my hepatologist couldn't give a sh*t if I took tetracycline or not -- but since I wasn't in the mood for antibiotics at this point, I didn't say anything. I'm not ruling out oral antibiotics for the future, which may be with my next derm (already made a premptive appointment last week for July) unless this goes away.

Wish I had something more enlightening to say. Hopefully, my 8 day steroid vacation will put the seb derm into remission as opposed to rebounding it. Guess I'll know pretty soon :)

Anyway, if this doesn't work, there's always the immunosuppresives like Elidel and Protopic, the new derm, and time. Yeah, time. That's what I'm really counting on. Not Screwu.

-- Jim

Avatar universal
I wasn't expecting all that much from Dr. Screwu anyway. I'll probably follow his advice and see what happens with the following modifications. His theory seems to be less is more and that a lot of the stuff was irritating more than helping, maybe he's got something there and time will tell.

1. Instead of stopping the mid-strength topical right away, I'm thinking of weaning off the mid-strength topical by  going from 2x a day to  1X a day over the weekend and then to maybe once every other day for a few days and then to hydrocortisone, for a total of 14 days counting the 7 I already did.

2. I'm going to use some of the shampoos he doesn't want me to use on head, scalp and chest but keep it off my face.

3. My main concern is that he's prescribing nothing for the seb derm once except for intermittent topical steroids when needed. I may just wait and hope I'm in a long remission. If that happens, I don't mind using topicals if only maybe a few days a month. Any more then that and I'm looking for alternative treatments. Actually tempted to start using Elidel or Protopic since I have some in the house, but I think I'll wait. Anyway, have an app with another derm sometime in July.
Avatar universal
When you eventually find your way down here and have time, please describe your rosacea in detail and tell us everything your derm (or do you just see a gp) told you to do.

Regarding Metrogel, one of my docs told me to use it, my current derm said not to and recc a sulfur solution. Ina was also prescribed Metrogel. Curious, did they tell you to use the Metrogel all over your face or just on your nose, or on nose and cheeks? I've heard different things. Also, do you just have rosacea or anything else. I have rosacea plus sebopsoriais which is sort of like a thickened sebborhetic dermatitis with itching, inflammation and dry white flaking. Did your doctor mention oral antiboitics like Tetracycline. This is often used as a first line for rosacea, especially if it gets very bad but can tax your liver somewhat.

-- Jim
Avatar universal
In no particular order ...

Sounds like you're making progress and from what I've read you've got to kiss a lot of medications to find the princely one, which may be not be the same for everyone.

Cetaphil -- I feel the same way since I've been using water on my face very day since I was born. However, washing with Cetaphil without water seems very calming on skin and leaving a thin film on acts as a protectorant/moisturizer. I did that for practically a week and finally sort of got used to it. Now, I use water once a day -- at night -- to get the blue lizard sun block off easier but might use cetaphi w/o water during day. You should try it that way a couple of times.

Baby Blankets -- What are they made of and where exactly do you get them?

Shampoos == Your hairdresser seems on same page with dr. fucku (he wants me to use neutrogena regular)  and I did find the antifungal or tar shampoos irritating on face -- however, probably will use on scalp now and then since scalp is thicker and they never irritated there.

Welts under eyes -- Can you describe yours ? Which me it's like bags under eyes that make me look like ten years older when they are there. Thought it was part of the aging process but now they're gone completely, not sure if the cortisone or what. I thought allergies, fluid retetention or some sort of inflammation from seb derm or rosacea. Not sure. BTW they can be reduced by putting a moist tea bag under the eye or refrigerating a spoon and press the back end against the areas puffed up. Boxers use the latter, starlets the former.

Atopic/allergic derm -- Looked at some pictures and possibly I have atopic as well but almost certain I have seb derm, sebopsoriasis as well as rosacea. One derm said the skin doesn't know these different names and he has a very good point -- we often have a mixture and hard to know where one ends and the other begins, except with rosacea where the lines may be more fixed. My roaacea appears mostly on nose and upper cheeks although sometimes my whole face gets red -- not sure if this is: (a) more diffuse form of rosacea; (2) sun sensitivity from rosace and/or riba; (d) inflammation from seb dermatitis. Unfortunatly, I haven't found anything exactly corresponding in the pics i look at on the internet. Most rosacea pictures are of very fair skinned celtic folks and the red is therefore very defined and prominent with pimples. My skin is more mediterranean (darker) and other than a piple or so on nose, no pimples on rosacea places. Do you have normally pale skin?

My condition when at worst: Dry and quite noticeable flaking on top of head and forehead and a little on face. Face redenened and "raw" quite diffuse but more prominent on nose and top cheeks, the rosacea areas. Chest redened/raw  in sabaceous areas and itches like crazy as well as face. I also had the redened seb derm under armpits and in groin but earlier in treatment. Also a small raised plaque under each eye which is probably psoriasis which is why my diagnosis is sebopsorisis (psoriasis combined with seb derm) and rosacea. In case you forgot during treatment (fortunately resloved) my entire body was covered with guttate psorisis and feet and hands with plantar pustular psoriasis (in addition to the seb derm) At one point feet so bad I could hardly walk. Because of the guttate and plantar pustular, I paid little attention to the seb derm, thinking it was a riba reaction and would disappear when the drugs stopped. (maybe you can see why I'm so "pro" treatment LOL -- it really was hell for me -- go take a look at some pictures of plantar pustular and guttate psoriasis if you want to get sick)


Currently after 8 days steroids: face and chest 90% better with some rosacea redness but if it stayed this way I could live with it no problem. Itching 99% gone, no problem. The problem, of course is that I can't remain on topical steroids.  

Current regimen: Sulfacet for rosaceaa -- apply nose and upper cheeks. This is a sulfur based "old time" antiboitic cream that does same as Metrogel. Interestingly, research shows it also works well for seb derm but screwu specifically told me only to use it on rosacea areas so I'll do that for now. Using nothing for seb derm except some hydrocortisone for "weaning" purposes. This makes me very nervous that it will come back. If after weaning it starts appearing, I'll go back to a stronger corticoid and immed see another derm to try someting else for mainteance -- or I'll just let it come back and go natural and perhaps check into a monestary.  

Things I might try in future: oral antibiotics for rosacea. pulsed light treatment (phooderm) for rosacea. oral fungals for seb derm. See an allergist --for food and substance sensitivities. Work on relaxation -- meditation, yoga, alexander, etc. Check into a monestary in iceland -- no sun, light, or people.

Itching in morning -- I noticed irritation in morning as well and it makes sense since it's hard to figure a way to sleep without your face being on something. Hopefully your baby pillow is a solution. You might also consider silk which is considered hypoallergenic and soft. Maybe silk pillowcases.  I did that for a while for the guttate psoriais when my entire body was raw -- bought silk long sleeved and long legged underwear and wore them under everything.

Anyway, last few days my skin is almost like normal so I can see why folks use topical steroids. In fact derm before last said some of his patients stay on low-med stregth topicals for life although many say this is a major NO if you have rosacea. Maybe I take the lazy route and let hydrocortisone or something a little stronger  get me throught the summer. LOL. Then maybe by next summer the riba and interferon will be completely out of system and everything will go back to the way it was before treatment. That's another plan. Still think time will be the healer on this but meanwhile the other stuff hopefully will help.

Are you still light senstivity and not going outdoors much? I pretty much stayed indoors last week but yesterday was out a lot. Skin definitelly reddens/darkens quickly but only on face.

-- Jim








Avatar universal
Ah, gotcha, running out of *thread* space. How about "Leisons of the liver" 6/19
Avatar universal
Sorry about the outbreak but hey, sounds promising with the
roofer :) Do let me know what the derm says tomorrow.

As suspected, redness and additional pimples emerged coming off the topical steroids so f*ck u to dr. f*cku :) Trying to add a little hydrocortisone 1% to wean off them but frankly I have no idea what I'm doing at this point. From what I'm reading, the best way to knock the rosacea erruptions down and/or wean from sterioids is a course of oral antibiotics, usually tetracycine. I know tetracycline isn't great for the liver but have you taken it? I'll discuss with my gastro later this week but if he gives the green light, I'll probably do it unless the rosacea erruption goes down.
We're only halfway down the tread (50 posts per thread) so let's leave it here for now.

-- Jim

Avatar universal
Haa, Haaa... I see you've got out your camcorder again...LoL
Hey I found the counter... (looks like threads got moved around or maybe it temporarily lost connection) but wow that's a bunch of views..

BTW....I was crackin up at the thread ya'll posted in today...
& to think I only went thru a mere 22 hours labor... as per leather... thinks I'll stick to the four legged brands!
;)
Avatar universal
the second babe was only 11 hrs labor and she was exactly 8lbs and 22 in, started breastfeeding during recovery! No drugs, it was too late by the time I chicken out!

what counter? I vaguely remember it, where is it now?
Avatar universal
you are so funny....i thought he was talking to himself too!
Avatar universal
I admire your restraint fishdoc. Were I in your place when the doc said that about your boobs I would have likely grabbed the scalpel and cut that F'ers throat. I admire you for being able to handle that so gracefully but I would not have been that cool. I'm not saying that I definitely would have cut his throat but I assure that I would have at least said something vulgar and disparaging to him - without a doubt. I hate the guy and I don't even know the c'sucker. Mike
Avatar universal
OK, the surgeon is really a good guy, we just have a wierd sense of humor out here..... I thought it was funny, even at the time, but the sawing and pulling... I was gettin a little light headed...
Avatar universal
Okay, if you're cool with it then I am too. Mike
Avatar universal
Hey mike and chev lets just not gloss over this leather jacket i was hoping to get from fishdoc.
Avatar universal
great!!! i'm lost at the top & bottom-tit twisting surgeons,leather jackets,jim's talking to himself......forgettabout it-has deano been here w his bong?...speakin of which,what a summer for all things green-garden is blooming,trees are booming and my lawnmower is taking a beating
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