Guest guest Posted June 22, 1999 Report Share Posted June 22, 1999 Hi group-- I've said this before, but don't know if anyone commented. I asked to drop my Actigall because of side effects, which they OKd last November. I dropped from 600 mg a day to 300. My LFTs have steadily improved!! They're still no where's near normal, but they are improving. Go figure!! Laurie ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 1999 Report Share Posted June 22, 1999 It doesn't really surprise me. The studies done with Actigall haven't been extensive. Proper doseage levels may vary quite a bit between individuals. Congratulations on your improved LFTs. Can you tell if it has had any effect on your infections? Or are they too masked by the antibiotics? Tim --- Oceandrmer@... wrote: > Hi group-- > > I've said this before, but don't know if anyone commented. I > asked to drop > my Actigall because of side effects, which they OKd last > November. I dropped > from 600 mg a day to 300. My LFTs have steadily improved!! > They're still > no where's near normal, but they are improving. Go figure!! > > Laurie ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 1999 Report Share Posted June 23, 1999 Tim-- I tried to go off Augmentin for a bit to see if pouchitis would recur and it did 24 hrs later. So much for better LFTs being in relation to pouchitis. Laurie ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 1999 Report Share Posted June 25, 1999 HI LYNN I JUST HAD MINE FILLED A FEW DAYS AGO. I GOT 90 TABLETS. THAT SEEMS STRANGE. MAYBE YOU CAN FILL IT AT A HOPITAL MARSHA ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 1999 Report Share Posted June 25, 1999 Lynn, I had the same problem with my Actigall. Jim (my husband) and I get our main rx's through his insurance by mail. He has rx for gout and Lipitor for cholestrol; I have the Actigall and Azulfadine for liver and UC. When we sent for our most recent refills everything came except for the Actigall. They wrote that it was on back order. I waited until I ran out on Friday and finally called them on Mon. They said it was a manufacturer's problem; they just couldn't keep up with all the orders! I called my local pharmacy where I used to get it all the time and got a 2-wk supply -- for $68. When I get it by mailorder it's $7.50 for a 3-month supply! Quite a difference! I sure hope the manufacturer gets their act together soon! The insurance people said to talk to my dr. and see if there was something else I could use. I don't think there is, is there? Love, Peggy McG ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 1999 Report Share Posted June 25, 1999 On another list I saw about 2 weeks ago, some discussion of Actigall being in short supply and even discontinued. A drug co. rep posted that there was a distribution problem in Europe but there were no plans to stop making Actigall. In general he said there was about a month supply stockpiled here in the US and availability shouldn't be a concern. I'm sure he was trying to put as good a spin on the distribution problem as possible. Tim ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 1999 Report Share Posted June 25, 1999 Marsha...Thanks for your input. We called Hopkins and they said that there was to be a distribution of Actigall today and to check with the pharmacy...We did and they have it. Now I'm contemplating getting medication in bulk....if there is such a thing Lynn Re: ACTIGALL >HI LYNN I JUST HAD MINE FILLED A FEW DAYS AGO. I GOT 90 TABLETS. THAT >SEEMS STRANGE. MAYBE YOU CAN FILL IT AT A HOPITAL MARSHA > >------------------------------------------------------------------------ >FreeShop is the #1 place for free and trial offers and great deals! >Try something new and discover more ways to save! >http://clickhere./click/381 > > > >eGroups.com home: /group/ > - Simplifying group communications > > > > ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 1999 Report Share Posted June 25, 1999 Lynn, Others are being treated with Ursodiol. I have just a couple of days left of Actigall. We'll see if my drugs-by-mail come in. Dan > Re: ACTIGALL > > Lynn, > I had the same problem with my Actigall. Jim (my husband) and I get our > main > rx's through his insurance by mail. He has rx for gout and Lipitor for > cholestrol; I have the Actigall and Azulfadine for liver and UC. When we > sent for our most recent refills everything came except for the Actigall. > > They wrote that it was on back order. I waited until I ran out on Friday > and > finally called them on Mon. They said it was a manufacturer's problem; > they > just couldn't keep up with all the orders! I called my local pharmacy > where > I used to get it all the time and got a 2-wk supply -- for $68. When I > get > it by mailorder it's $7.50 for a 3-month supply! Quite a difference! I > sure > hope the manufacturer gets their act together soon! The insurance people > said to talk to my dr. and see if there was something else I could use. I > > don't think there is, is there? > > Love, > Peggy McG > > ------------------------------------------------------------------------ > FreeShop is the #1 place for free and trial offers and great deals! > Try something new and discover more ways to save! > http://clickhere./click/381 > > > > eGroups.com home: /group/ > - Simplifying group communications > > > ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 1999 Report Share Posted June 25, 1999 Dan...Joyce Majors at Hopkins said that there was a shipment of Acitgall arriving today. She was correct we received ours. Lynn Re: ACTIGALL >> >> Lynn, >> I had the same problem with my Actigall. Jim (my husband) and I get our >> main >> rx's through his insurance by mail. He has rx for gout and Lipitor for >> cholestrol; I have the Actigall and Azulfadine for liver and UC. When we >> sent for our most recent refills everything came except for the Actigall. >> >> They wrote that it was on back order. I waited until I ran out on Friday >> and >> finally called them on Mon. They said it was a manufacturer's problem; >> they >> just couldn't keep up with all the orders! I called my local pharmacy >> where >> I used to get it all the time and got a 2-wk supply -- for $68. When I >> get >> it by mailorder it's $7.50 for a 3-month supply! Quite a difference! I >> sure >> hope the manufacturer gets their act together soon! The insurance people >> said to talk to my dr. and see if there was something else I could use. I >> >> don't think there is, is there? >> >> Love, >> Peggy McG >> >> ------------------------------------------------------------------------ >> FreeShop is the #1 place for free and trial offers and great deals! >> Try something new and discover more ways to save! >> http://clickhere./click/381 >> >> >> >> eGroups.com home: /group/ >> - Simplifying group communications >> >> >> > >------------------------------------------------------------------------ >FreeShop is the #1 place for free and trial offers and great deals! >Try something new and discover more ways to save! >http://clickhere./click/381 > > > >eGroups.com home: /group/ > - Simplifying group communications > > > > > ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 1999 Report Share Posted June 25, 1999 What a price...Mike's is over an hundred for 60...Go figure!!!!!!!! But everything should be back to normal. How about a stockpile? Lynn Re: ACTIGALL >Lynn, >I had the same problem with my Actigall. Jim (my husband) and I get our main >rx's through his insurance by mail. He has rx for gout and Lipitor for >cholestrol; I have the Actigall and Azulfadine for liver and UC. When we >sent for our most recent refills everything came except for the Actigall. >They wrote that it was on back order. I waited until I ran out on Friday and >finally called them on Mon. They said it was a manufacturer's problem; they >just couldn't keep up with all the orders! I called my local pharmacy where >I used to get it all the time and got a 2-wk supply -- for $68. When I get >it by mailorder it's $7.50 for a 3-month supply! Quite a difference! I sure >hope the manufacturer gets their act together soon! The insurance people >said to talk to my dr. and see if there was something else I could use. I >don't think there is, is there? > >Love, >Peggy McG > >------------------------------------------------------------------------ >FreeShop is the #1 place for free and trial offers and great deals! >Try something new and discover more ways to save! >http://clickhere./click/381 > > > >eGroups.com home: /group/ > - Simplifying group communications > > > > ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 1999 Report Share Posted June 25, 1999 Lynn, I just got back off vacation and was surprised to see 182 emails. I had no problem getting my perscriptions thru Columbia Freestate. I have tried to get a three months supply from them but they don't consider that a mantainence drug. I can get a three months supply of Asacol but not the Actigall. Glad to hear you got the rest of yours. larry ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 1999 Report Share Posted June 25, 1999 Peggy McG-- I am HMO insured & meds are still expensive. The $7.50 for 3 month supply sounds 10 Times better. Can anyone order through the mail - or is yours a special situation? Would appreciate any info. on this--the phone # of the mail order co. if you feel comfortable giving it. Tks. Laurie ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 1999 Report Share Posted June 25, 1999 Peggy, You could use Urso, it is practically the same thing as Actigall from what I have been told...I have also heard it is cheaper. Love, ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 1999 Report Share Posted June 26, 1999 Hi all - regarding Actigall, I was unable to fill my husbands prescription through our health insurance's plan (three month supply for one co-pay) as they said it was back ordered until the end of June. This has not happened before. I have yet to try the local pharmacies, as he has some left, but I think I will try today, having read the postings. Liz ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 1999 Report Share Posted June 26, 1999 Laurie, Our mail-order place is through my husband's insurance company, Anthem Health & Life. There is a toll-free ph. # - . He's had this insurance for several years and I don't know that I could get on it at this point considering the PSC, but maybe it would be worth a phone call. It is a wonderful way to obtain expensive rx. as long as they can get them! Hopefully it won't be too long before the manufacturer will catch up with the demand. In the meantime I think I'll call my dr. Monday and ask about the possibility of Urso. Take care, Peggy McG ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 1999 Report Share Posted June 26, 1999 My mail order for Actigall has also been back-ordered. I was just notified by mail Friday so I don't know what their explanation is, but I'm sure it is the same problem everyone has encountered. Cost wise I was paying about $160 for 60 tabs. I was thankful when my insurance added a pharmacy card so I only pay $20 now for a month's supply. Laurie - I buy through Express Pharmacy Services - . My insurance just started allowing us to buy through the mail so I don't have a lot of experience although so far they have been good. you can also find others by searching the internet. Russ ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 1999 Report Share Posted June 30, 1999 Thanks, Lynn. I'll look into it. Do you happen to have a # for CareMark? Laurie ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 1999 Report Share Posted July 10, 1999 Marsha-- How long have you been on the increased dose? Laurie ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 1999 Report Share Posted July 11, 1999 Laurie, The lady that got me involved in treatment for my IBS and other problems, arthritus and allergies (she provides me with many of my supplements and her advice has been a God-send to me) sent me the tape. She also told me at one time that bismith is actually good for you and to take it rather than the other stomach antacids. Peg Oceandrmer@... wrote: > Marsha-- > I don't know whether " leaky gut " and pouchitis are interrelated or not. I do > know that I have participated in a couple of studies Mayo has done on it over > the years, but neither of the things I tried worked. They didn't use > placebos at all-it was the real medication. I do know that their theory is > it is some type of bacteria. I'll have to re-read the initial e-mail on > leaky gut to get an idea where this brought on the idea of pouchitis-related. > My pouchitis is usually controlled, but then I'm on antibiotics all the time > (although occasionally Pepto Bismol tablets let me go of them for a couple > days). > > Laurie > > ------------------------------------------------------------------------ > Get in on the new revolution. The only democratic web community. > Free email. Free webspace at FortuneCity.com. > http://clickhere./click/365 > > eGroups.com home: /group/ > - Simplifying group communications ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 1999 Report Share Posted July 28, 1999 Well, congratulations are in order. I went on Actigall last week, at the high dose (20 mg/kg). So far, I feel fine, but for very minor diarrhea (sp?). The frustrating thing is, how will I know if its working? One of the reasons I finally stopped procrastinating and took the Actigall plunge was that my itching has been bad recently. But we hear that it does not affect the symptoms. How can this be true, since it radically lowers LFTs? Can anyone explain this to me, please? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 1999 Report Share Posted July 28, 1999 Hi Erwin- Congratulations on your Actigal plunge. I don't think they really know that it doesn't effect the symptoms, just that the smaller doses do not seem to improve the course of the disease. Certainly Dr Chapman feels that symptoms might improve with the high doses. It would seem that the improvement in bile flow would lessen the tendency for bilirubin to " back up " or rise to high enough levels in the blood to cause it to get into the skin (which is reportedly what causes the itching) My feeling is that the high dose Urso/Actigal is about the only medication that shows a possibility of slowing this thing down, so think positive and see what happens. (I'm only on a highish dose (slightly <20mg/kg) but am symptom-free and have LFT's WNL now) In response to your other message about cholangitis, I wish someone knew why the disease can progress in the absence of signs of infection, but it apparently can. I don't think I've ever had a known episode of cholangitis such as people describe here, but I know that my ducts are pretty mangled, so something's been going on. Really hoping your high dose helps your symptoms, as that might give us all some encouragement. So take care and keep us all posted. H. Re: Actigall Well, congratulations are in order. I went on Actigall last week, at the high dose (20 mg/kg). So far, I feel fine, but for very minor diarrhea (sp?). The frustrating thing is, how will I know if its working? One of the reasons I finally stopped procrastinating and took the Actigall plunge was that my itching has been bad recently. But we hear that it does not affect the symptoms. How can this be true, since it radically lowers LFTs? Can anyone explain this to me, please? ------------------------------------------------------------------------ Click Here to apply for a NextCard Internet Visa and start earning FREE travel in HALF the time with the NextCard Rew@rds Program. http://clickhere./click/449 eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 1999 Report Share Posted July 28, 1999 Well, not to throw a monkey wrench into the matter, but I DROPPED my Actigall dosage and my LFTs have gone DOWN. Go figure. I am only on 300 mg a day and am up to 109# now, so 300 mg a day is not normally what the drs would recommend. However, my Mayo dr. agreed with decreasing the dosage because of side effects & the Omaha GI tx dr has not told me any differently. Laurie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 1999 Report Share Posted July 29, 1999 Erwin, Congratulation on starting treatmen. Although I'm not sure that LFTs are " radically " lowered by ursodiol, though they usually improve. Other treatments are mentioned in http://cpmcnet.columbia.edu/dept/gi/PSC.html for itching. In my case I didn't notice any change in itching when I tried the bile acid-binding resins, nor any increase when I stopped using them. " Current medical therapy does not have a significant impact on slowing the progression of PSC but has an important role in the treatment of complications. Ursodiol improves laboratory parameters but it probably does not prolong survival or time to referral for liver transplant. Pruritus (itching) is a frequent complication that can be treated with bile acid-binding resins such as cholestyramine and opioid antagonist. Deficiencies in fat-soluble vitamins are treated by supplementation. Aggressive antibiotic therapy is necessary to treat episodes of bacterial cholangitis. There may be some role for endoscopic dilatation of dominant bile duct strictures in some cases but there have been no controlled clinical trials. If such a procedure is contemplated, a physician with considerable experience in treating patients with PSC should be consulted. As there is an increased incidence of cholangiocarcinoma in patients with PSC, this should always be suspected, especially in patients with long-standing disease whose condition worsens. " Tim --- ISZAT@... wrote: > Well, congratulations are in order. I went on Actigall last > week, at the high > dose (20 mg/kg). So far, I feel fine, but for very minor > diarrhea (sp?). The > frustrating thing is, how will I know if its working? One of > the reasons I > finally stopped procrastinating and took the Actigall plunge > was that my > itching has been bad recently. But we hear that it does not > affect the > symptoms. How can this be true, since it radically lowers > LFTs? Can anyone > explain this to me, please? _____________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 1999 Report Share Posted August 9, 1999 Dear H., You mentioned in an email a couple of weeks ago that you are taking slightly less than 20 mg/kg of Actigall, and that you are symptom-free and your LFTs are within normal range. Congratulations, first of all! Second, could you please tell me about the interval between when you started the current dose of Actigall and when your symptoms disappeared and your LFTs fell within normal. I am scheduled for my first post-Actigall blood test in about a week, and I am curious what to expect. Also, my symptom (itching) does not appear to have been improved by the drug in the first three weeks (I guess I seem impatient!), and I wonder whether it takes a certain amount of time to work. The manufacturer's instructions state that it takes three weeks to reach a " steady state " in your body. Thanks for any ideas and info, Erwin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 1999 Report Share Posted August 9, 1999 HI Erwin- Again, I can only relate what I interpret as my own experience and what I have discussed with my Drs. I don't think I have ever had much itching from the disease (yet) but I do think I probably had 1 or 2 episodes of cholangitis before diagnosis as well as some occasional sharp URQ pain. Prior to starting on Actigal, my AlkPhos and GGT were about 5X normal levels and and other values were running about 2x normal. I started on lower dose about May1,1998 and higher dose about a month later. There was some decrease in LFT's right away, but as of 9/98, the values were normal except GGT a few points above the range. When I went to Mayo in April 99, all values were WNL and bile flow via ultrasound was pretty good. Ultrasound had shown a significant stricture in one of the ducts in the winter 98. Overall scarring and smaller strictures throughout biliary tree were seen when ERCP was done in 4/98 (no therapeutic dilation or stenting was done as it would not have done any good-so changes would have to be due to meds) By the way, my Dr. said I " must have had this for a while " and he would " give me about 5 years. " I feel very well, but again, I don't think I have ever had severe symptoms of the PSC. Since I was diagnosed with " pretty bad " UC/Crohn's at the same time, it is hard for me to know for sure which symptoms to attribute to which disease. The UC or Crohn's has also been totally fine since several months after starting treatment with Asacol. Just my experience. I really hope that you see some improvements in your tests, as well as your symptoms and overall well-being. Let us know. H. Re: Actigall Dear H., You mentioned in an email a couple of weeks ago that you are taking slightly less than 20 mg/kg of Actigall, and that you are symptom-free and your LFTs are within normal range. Congratulations, first of all! Second, could you please tell me about the interval between when you started the current dose of Actigall and when your symptoms disappeared and your LFTs fell within normal. I am scheduled for my first post-Actigall blood test in about a week, and I am curious what to expect. Also, my symptom (itching) does not appear to have been improved by the drug in the first three weeks (I guess I seem impatient!), and I wonder whether it takes a certain amount of time to work. The manufacturer's instructions state that it takes three weeks to reach a " steady state " in your body. Thanks for any ideas and info, Erwin ------------------------------------------------------------------------ Click here for 4 FREE TRIAL ISSUES of Sports Illustrated! If you're satisfied, your subscription will continue at the guaranteed lowest rate of $.75 an issue for 52 issues! http://clickhere./click/678 eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
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