Guest guest Posted November 15, 2001 Report Share Posted November 15, 2001 In a message dated 11/15/01 6:02:21 PM Pacific Standard Time, dagelo@... writes: My AIH was dx'd 01/00 by an ER visit with GI bleeding and ensuing laparoscopy for biopsy of liver and endoscopy for banding of varices. Started on 50 imuran, 80 pred. Throughout the 2 yrs, I've had several bleeds and bandings and high ammonia levels. LFT's are pretty good. Tomorrow I get the flu shot and blood work, Monday I get endoscoped for banding of the 2 remaining esophageal varices, Tues I I have a CT scan of abdomen and MRI of brain, Wed I have some skin lesions (probably imuran induced) removed, Thurs (THANKSGIVING!!! with my mom and dad and my 2 kids), Mon next, pap and mammogram (I had a hysterectomy in April for cervical cancer---I am 45), Fri I have an ultrasound of liver for hepatic vein measurements. Today, I (well, my mom drove my 16 yr old son for an orthopedic appt. that lasted 3 hrs.) , you do keep busy! I'll ask about the very most minor-sounding of your "activities" -- what sort of skin lesions? Others have spoken of removing skin lesions, and I'm curious. Best wishes, . Keep us posted. (Incidentally, you're the only person I've heard of who took as high a dosage as I did of Prednisone.) Harper Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2001 Report Share Posted November 16, 2001 Hi Genny (please let me hear from you), Hi Harper (I agree with you that the flu shot should be taken every year as we are immunocompromised and the shot is an attenuated (dead) virus. And yes, the pneumovax every 5 years), Hi debby (great to see your messages), Hi Bozena (I've loved you from the beginning time you posted), Hi all those regular advisors and new members, My AIH was dx'd 01/00 by an ER visit with GI bleeding and ensuing laparoscopy for biopsy of liver and endoscopy for banding of varices. Started on 50 imuran, 80 pred. Throughout the 2 yrs, I've had several bleeds and bandings and high ammonia levels. LFT's are pretty good. Tomorrow I get the flu shot and blood work, Monday I get endoscoped for banding of the 2 remaining esophageal varices, Tues I I have a CT scan of abdomen and MRI of brain, Wed I have some skin lesions (probably imuran induced) removed, Thurs (THANKSGIVING!!! with my mom and dad and my 2 kids), Mon next, pap and mammogram (I had a hysterectomy in April for cervical cancer---I am 45), Fri I have an ultrasound of liver for hepatic vein measurements. Today, I (well, my mom drove my 16 yr old son for an orthopedic appt. that lasted 3 hrs.) Gosh, I sound like I'm nearing the pity party state.........better lay down and get some sleep.....BTW, I have been using the tea tree oil and it does relax! My prayers and blessings to all, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2001 Report Share Posted November 16, 2001 Hi Harper, I have noticed small (about the size of a pencil erasure) lesions on my face, neck and legs since I started the imuran. Internal med doc freezes them off with liquid nitrogen about twice a year (and they are gone...not metastatic cancer in appearance). Some of them are flesh colored and some are dark, but none have the characteristics of melanoma. As for the pred, it was 40mg am and 40 mg pm for about a month, then we tapered by 5 mg every week...I am now at 5mg.....but too late, the side effects put 40# on my 120# frame, and I now have diabetes, and very poor eyesight (can't drive anymore). The good news is that I am alive!!!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2001 Report Share Posted November 16, 2001 , Bless you, I am tired and overwhelmed just reading your post. Good luck!!! Patty -----Original Message-----From: dagelo [mailto:dagelo@...]Sent: Thursday, November 15, 2001 8:44 PM Subject: [ ] Re: Flu shots and others Hi Genny (please let me hear from you), Hi Harper (I agree with you that the flu shot should be taken every year as we are immunocompromised and the shot is an attenuated (dead) virus. And yes, the pneumovax every 5 years), Hi debby (great to see your messages), Hi Bozena (I've loved you from the beginning time you posted), Hi all those regular advisors and new members, My AIH was dx'd 01/00 by an ER visit with GI bleeding and ensuing laparoscopy for biopsy of liver and endoscopy for banding of varices. Started on 50 imuran, 80 pred. Throughout the 2 yrs, I've had several bleeds and bandings and high ammonia levels. LFT's are pretty good. Tomorrow I get the flu shot and blood work, Monday I get endoscoped for banding of the 2 remaining esophageal varices, Tues I I have a CT scan of abdomen and MRI of brain, Wed I have some skin lesions (probably imuran induced) removed, Thurs (THANKSGIVING!!! with my mom and dad and my 2 kids), Mon next, pap and mammogram (I had a hysterectomy in April for cervical cancer---I am 45), Fri I have an ultrasound of liver for hepatic vein measurements. Today, I (well, my mom drove my 16 yr old son for an orthopedic appt. that lasted 3 hrs.) Gosh, I sound like I'm nearing the pity party state.........better lay down and get some sleep.....BTW, I have been using the tea tree oil and it does relax! My prayers and blessings to all, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2001 Report Share Posted November 16, 2001 In a message dated 11/16/01 11:05:29 AM Pacific Standard Time, nneW5@... writes: Dang...see so much of doctors, about as much as I do the kids... sometimes I feel like I should be claiming the docs as dependents on my tax return! how........true!!!!!!!!!!!! bert. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2001 Report Share Posted November 16, 2001 , One other thing to consider regarding changes in eyesight. I had my hysterectomy almost 4 1/2 years ago, long before my AIH dx. My eyesight changed radically, so much so I had to go to the eye doctor about 5 months earlier than my scheduled eye exam. The eye doctor told me the hormonal changes will have a significant effect on your eyes. That was one thing the Gyno never told me about, nor did I see any mention of it in anything I read about any of the changes I might expect post op. So add in the prednisone, diabetes effect too, it is no wonder you have had to change the eyeglass Rx so much. I have had to give up my contacts since starting prednisone last year due to my eyes being so dry (mostly from lack of sleep). I have noticed more changes in my vision as well, especially at nite. Guess I'll be paying a visit to THAT doctor soon too! Dang...see so much of doctors, about as much as I do the kids... sometimes I feel like I should be claiming the docs as dependents on my tax return! nne -- In @y..., " dagelo " <dagelo@c...> wrote: > Dear and Harper, > > Yes, even after total hysterectomy, a Pap smear is done every 3 years. I am 6 months post-op, but because of my immunosuppression, I am followed every 6 months. (It is nice not having periods, but the hot flashes and night sweats are still a nuisance.) My eyesight changes and the development of diabetes were most likely prednisone induced. I have to change my eyeglass prescription frequently. The diabetes was found on routine fasting blood sugars...I have none of the complications such as cataracts, glaucoma, or foot problems. I seem to be well controlled with just diet and exercise. > Keep your faith and stay positive, > God bless, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2001 Report Share Posted November 16, 2001 nne, Thanks for the note. My eyesight changes occurred after I was started on pred....but you are right about the hormonal changes affecting eyesight. Are you on hormone replacement? My GYN partner prescribed estrogen and progestin (progestin protects against uterine cancer, but I don't have a uterus!). When I asked my GYN what I should do, he said "well, if the hot flashes are unbearable, take the estrogen...some docs give a testosterone replacement as some patients feel "an increased libido" " I'm a widow, have no partner, and just want to find someone who can really prescribe the right treatment. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2001 Report Share Posted November 17, 2001 , I have been on estrogen since my surgery...only 1 mg..took several days to kick in and alleviate the hot flashes. My gastro says is ok to continue, tho I remember seeing posts here before that some docs either dont want AIH patients taking estrogen or at the most get the estrogen patch. For me, with as yuk as I feel with the AIH, don't know that I would want to purposely add to the yukkies by stopping the estrogen. Good luck with that...I hope you can get some relief from those flashes and the other post op discomforts. nne > nne, > > Thanks for the note. My eyesight changes occurred after I was started on pred....but you are right about the hormonal changes affecting eyesight. Are you on hormone replacement? My GYN partner prescribed estrogen and progestin (progestin protects against uterine cancer, but I don't have a uterus!). When I asked my GYN what I should do, he said " well, if the hot flashes are unbearable, take the estrogen...some docs give a testosterone replacement as some patients feel " an increased libido " " I'm a widow, have no partner, and just want to find someone who can really prescribe the right treatment. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2001 Report Share Posted November 17, 2001 ne, it is interesting that you mentioned that you cannot wear your contacts. My contacts also seemed too dry! I was really frustrated but decided that I just was NOT going to deal with the dry eyes and switched to my glasses. I have always felt self conscious with my glasses, but just decided I couldn't waste time on worrying about how I saw things. SO, I wear my granny glasses! I paid for the unseen bifocals and they are great! Well....off to call for another eye appointment! debby [ ] Re: Flu shots and others ,One other thing to consider regarding changes in eyesight. I had myhysterectomy almost 4 1/2 years ago, long before my AIH dx. Myeyesight changed radically, so much so I had to go to the eye doctorabout 5 months earlier than my scheduled eye exam. The eye doctortold me the hormonal changes will have a significant effect on youreyes. That was one thing the Gyno never told me about, nor did I seeany mention of it in anything I read about any of the changes I mightexpect post op. So add in the prednisone, diabetes effect too, it isno wonder you have had to change the eyeglass Rx so much.I have had to give up my contacts since starting prednisone last yeardue to my eyes being so dry (mostly from lack of sleep). I havenoticed more changes in my vision as well, especially at nite. GuessI'll be paying a visit to THAT doctor soon too!Dang...see so much of doctors, about as much as I do the kids...sometimes I feel like I should be claiming the docs as dependents onmy tax return!nne-- In @y..., "dagelo" <dagelo@c...> wrote:> Dear and Harper,> > Yes, even after total hysterectomy, a Pap smear is done every 3years. I am 6 months post-op, but because of my immunosuppression, Iam followed every 6 months. (It is nice not having periods, but thehot flashes and night sweats are still a nuisance.) My eyesightchanges and the development of diabetes were most likely prednisoneinduced. I have to change my eyeglass prescription frequently. Thediabetes was found on routine fasting blood sugars...I have none ofthe complications such as cataracts, glaucoma, or foot problems. Iseem to be well controlled with just diet and exercise.> Keep your faith and stay positive,> God bless,> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2001 Report Share Posted November 18, 2001 , Forget my question about your eye problems, I didn't read far enough. Bozena > Message: 7 > Date: Fri, 16 Nov 2001 10:57:55 -0500 > From: " dagelo " <dagelo@...> > Subject: Re: Re: Flu shots and others > > Dear and Harper, > > Yes, even after total hysterectomy, a Pap smear is done every 3 years. I am 6 months post-op, but because of my immunosuppression, I am followed every 6 months. (It is nice not having periods, but the hot flashes and night sweats are still a nuisance.) My eyesight changes and the development of diabetes were most likely prednisone induced. I have to change my eyeglass prescription frequently. The diabetes was found on routine fasting blood sugars...I have none of the complications such as cataracts, glaucoma, or foot problems. I seem to be well controlled with just diet and exercise. > Keep your faith and stay positive, > God bless, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2001 Report Share Posted November 19, 2001 , I wear the patch and have no trouble with hot flashes anymore. My doctor knows about it and she sees no problem with it. Good Luck Ann Re: Flu shots and others>> > > , I've also been on estrogen since my surgery.. I haven't> had any hot flashes since and my gastro doesn't object to me using> the patch. I've been told that you can't lose weight while on the> patches. I've been having a little trouble with my eyes and I just> got a notice from the eye doctor that it's time for my exam. I was> going to skip it, but since I've been reading messages it seems that> I better get them checked. I've only taken the predisone for a short> while and my gastro took me off of it. I'm just on imuran and alot> of stomach medications.>> > ,> >> > I have been on estrogen since my surgery...only 1 mg..took several> > days to kick in and alleviate the hot flashes. My gastro says is ok> > to continue, tho I remember seeing posts here before that some docs> > either dont want AIH patients taking estrogen or at the most get the> > estrogen patch. For me, with as yuk as I feel with the AIH, don't> > know that I would want to purposely add to the yukkies by stopping> the> > estrogen.> >> > Good luck with that...I hope you can get some relief from those> > flashes and the other post op discomforts.> >> > nne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2001 Report Share Posted November 19, 2001 Here is my expierence about estrogen. I had a hysterectomy in 1972 and was immediately given a perscription for Premarin. I was diagnosed with AIH in 1997 and was eventually perscribed the Patch. I was told there is less that goes through the liver than with the oral Premarin. I feel no different from the switch. I am warmer blooded but I blame the disease and the Prednisone and Azathioprine, besides the extra wt those meds cause. It is not hot flashes, just any exertion makes me perspire when no one else is. The patch I have is changed 2x a wk. I hope this info is helpful. Leona From: Tex Pueschel Sent: Sunday, November 18, 2001 7:22 PM Subject: Re: [ ] Flu shots and others Ann, does the patch add estrogen to your body, or just kick the hot flashes? I have never heard of a patch until these past few posts. debby Re: Flu shots and others>> > > , I've also been on estrogen since my surgery.. I haven't> had any hot flashes since and my gastro doesn't object to me using> the patch. I've been told that you can't lose weight while on the> patches. I've been having a little trouble with my eyes and I just> got a notice from the eye doctor that it's time for my exam. I was> going to skip it, but since I've been reading messages it seems that> I better get them checked. I've only taken the predisone for a short> while and my gastro took me off of it. I'm just on imuran and alot> of stomach medications.>> > ,> >> > I have been on estrogen since my surgery...only 1 mg..took several> > days to kick in and alleviate the hot flashes. My gastro says is ok> > to continue, tho I remember seeing posts here before that some docs> > either dont want AIH patients taking estrogen or at the most get the> > estrogen patch. For me, with as yuk as I feel with the AIH, don't> > know that I would want to purposely add to the yukkies by stopping> the> > estrogen.> >> > Good luck with that...I hope you can get some relief from those> > flashes and the other post op discomforts.> >> > nne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2001 Report Share Posted November 19, 2001 In a message dated 11/18/01 6:29:31 PM Pacific Standard Time, tdcc2000@... writes: Ann, does the patch add estrogen to your body, or just kick the hot flashes? I have never heard of a patch until these past few posts. debby The patch adds estrogen to your body, as a pill would. Some doctors believe the patch may be just a little easier on your liver than the oral form of estrogen. Other doctors say it's pretty much the same in the end. Harper Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2001 Report Share Posted November 19, 2001 In a message dated 11/18/01 7:38:27 PM Pacific Standard Time, seafarer52@... writes: It adds estrogen, which my dr says we need. You have to watch out for breast cancer, but the chances are slim and the good that the patch does out ways the bad that might happen. Added estrogen helps protect our bones. Some studies show it helps protect against heart disease; other studies don't confirm those results. Harper Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2001 Report Share Posted November 19, 2001 In a message dated 11/18/01 7:38:27 PM Pacific Standard Time, seafarer52@... writes: It adds estrogen, which my dr says we need. You have to watch out for breast cancer, but the chances are slim and the good that the patch does out ways the bad that might happen. Estrogen is also good for libido, memory, and speech problems. Harper Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2001 Report Share Posted November 19, 2001 In a message dated 11/18/01 7:43:13 PM Pacific Standard Time, tdcc2000@... writes: I am going to ask my doctor for the patch next time I see her! Thanks..debby Don't forget that estrogen in pill form is available, too. Some people can't tolerate the irritation of the adhesive in the patch. Harper Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2001 Report Share Posted November 20, 2001 is there an advantage of patch over pill or vice versa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2001 Report Share Posted November 20, 2001 In a message dated 11/19/01 9:16:24 PM Pacific Standard Time, mamacdoo@... writes: is there an advantage of patch over pill or vice versa Some doctors believe that the patch may be easier on the liver. A gynecologist I was referred to to discuss this said she believed, in theory, it might be, just a little. My gastro guy said he didn't think it made much difference. I found I couldn't tolerate the adhesive on the patch, became sensitive to it in some way. Harper Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2001 Report Share Posted November 20, 2001 I have taken hormones orally since my hysterectomy in 87...but think I am still going to try to look into that patch. debby Re: Flu shots and others>> > > , I've also been on estrogen since my surgery.. I haven't> had any hot flashes since and my gastro doesn't object to me using> the patch. I've been told that you can't lose weight while on the> patches. I've been having a little trouble with my eyes and I just> got a notice from the eye doctor that it's time for my exam. I was> going to skip it, but since I've been reading messages it seems that> I better get them checked. I've only taken the predisone for a short> while and my gastro took me off of it. I'm just on imuran and alot> of stomach medications.>> > ,> >> > I have been on estrogen since my surgery...only 1 mg..took several> > days to kick in and alleviate the hot flashes. My gastro says is ok> > to continue, tho I remember seeing posts here before that some docs> > either dont want AIH patients taking estrogen or at the most get the> > estrogen patch. For me, with as yuk as I feel with the AIH, don't> > know that I would want to purposely add to the yukkies by stopping> the> > estrogen.> >> > Good luck with that...I hope you can get some relief from those> > flashes and the other post op discomforts.> >> > nne Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.