Guest guest Posted June 30, 2003 Report Share Posted June 30, 2003 Hi nne, From the time I went on Prednisone, my cholesterol and blood pressure went up and stayed up there for about a year before my Gastro said I should do something about it (my GP had been nagging me all along but I didn't want to go on more drugs). I finally started taking Zocor so the cholesterol went down but stayed around the upper limit of normal from then on. My blood pressure was borderline for ages until eventually I had to take blood pressure meds. It was definitely the prednisone because I never had problems in that area before. When I went on Cyclosporine, it got worse. When I think about it now, I used to get out of breath just walking up our street which is a bit of a hill, but not too bad. I wouldn't have called myself super fit before this, but physical activity never left me breathless before all this. BTW, I never had any chest, arm or shoulder pain or any palpitations or flutters until the actual heart attack - and then it was intense pain which I could not ignore......... Since I've had the stent put in and been weaned off the prednisone, I never get breathless anymore. My blood pressure is perfect - usually 110-120/60-80. I am no longer on blood pressure medication, but my cholesterol is around 6.1 if I don't take any medication. For a high-risk person like me it should be about 4.6 according to the pathology report and my GP. I can certainly relate to your wondering about all the little aches, pains, nausea, fatigue etc being due to the " Cyclops " drug (lol), it's a scary drug to take, I think, with all the possible side effects and with my record with Prednisone, I wonder if the Cyclo will also do terrible things - gotta stop thinking negative......... But, so far I've only had a bit of gum growth. Now and then, when I lie on my right side, I get a bit of URQ pain but it eases when I straighten out. Also sometimes I have slight dizziness - or it's more like a slowness where I feel I couldn't move quickly if I tried.........or I feel slightly off colour if I don't eat/drink when or what I should. Also, yes, I don't go to the potty as much during the day, but I tend to have to always go at least once during the night and I notice I lose more fluid at night than during the day. I don't take a diuretic but I drink at least 8 glasses of water a day. Anyway, I've had at least one good thing happen, and that is, since going off the Prednisone, I have lost most of my facial hair. I thought it would get really bad with the Cyclosporine, but it's okay. Now, only if the breast enlargement would kick in.........as you said to Jerry, LOL.........but, gee, you'd think we'd get some good side effects out of all this, wouldn't you? It's great that your liver enzymes went to normal so quickly and also that your Hepatologist is cautious about things. At least he's taking all things into account. BTW, my liver enzymes have stayed normal for just about a year now, so the Cyclo must be doing it's thing.......... Hope it stays that way. Well, gotta go. I always write too much. Please keep in tough about the Cyclosporine. I hope it helps. Love Bozena > Jerry, > > About that circus thing...along with the hair and gums...I am sure I > could really get a good position if the breast enlargement side > effect kicked in too! > > nne > Message: 7 > Date: Sat, 28 Jun 2003 18:54:25 -0000 > From: " nne " <seathestars@...> > Subject: Re: Cyclosporine > > Thanks Bozena. I appreciate your letting me know how it has been > with the cyclosporine.Sounds like you have really had some ups and > downs with all the meds. The heart attack was one more thing you > did not need. Were you at risk? Did the doctors think the meds > (increase blood pressure, for one) have anything to do with that? > > I have only been on the cyclosporine since April. At the end of > May, my ALT and AST were within normal range...first time since dx. > One doctor was very pleased (gastro) but the hep was > cautious...reserved his opinion at that time, thinks it was rather > quick, specially with the latest liver biopsy being so poor. The > lower enzymes may also be from things NOT being well with the liver, > not an indication of improvement. Then again, you indicated the > change for you, when it did come, was rather sudden...just you took > a long time to get there. > > Initially, only side effects with the cyclosporine have been nausea - > kind of reminds me of morning sickness. That has either gotten > better or I have adjusted - don't know which. Occasional flutters, > palpitations..like butterflies in my chest was another thing that > has now decreased, however do not know if it is the drug. I did > notice more RUQ pain since being on it but again, don't know if it's > the drug. > > I started feeling better in June...so thought maybe this was just > what I needed. It is used for rheum. arthritis..something I may > have - and for the first time in months I was able to move with > minimal pain. I was also feeling more energetic...still can get > tired but was moving with more energy during the day. All of a > sudden though, last week the joint pain started kicking in > more...and I am starting to feel the energy waning. Dizzy at times > for no reason. All things I have experienced whenever the enzymes > would flare back up, just not quite as severe. Also have noticed a > couple of things that I am just going to observe for several days to > see if there might be a problem or just a weird little aberration - > that is all of a sudden not going to the potty with the usual > frequency..even on a diuretic. > > > Thanks again for sharing your experience with what my daughter calls > the " cylops " drug. > > nne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2004 Report Share Posted July 21, 2004 In a message dated 7/20/2004 11:29:40 PM Eastern Daylight Time, seathestars@... writes: Side effects with that have been more cosmetic - What do you mean by cosmetic side effects? And what are the major side effect you were discussing? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2004 Report Share Posted July 21, 2004 Well for one, there is facial hair - a cosmetic issue for women- it is somewhat more abundant now than with prednisone alone; hair growth and nail growth; gums overgrow. The long term effects, according to the liver doc is high blood pressure and which may lead to kidney problems. He said it was not a matter of if but when the blood pressure would get too high. I have noticed that my readings over the past few months have been elevated a little - but not to the point where there is concern. It is doing its immunosuppressant thing - I have been getting sick with one bug or another, averaging about one a month. One positive thing - my fingernails no longer break so easily - in fact they look better now than they have in years. I think that is about it - hope that helps. nne > In a message dated 7/20/2004 11:29:40 PM Eastern Daylight Time, > seathestars@y... writes: > Side > effects with that have been more cosmetic - > What do you mean by cosmetic side effects? And what are the major side > effect you were discussing? Quote Link to comment Share on other sites More sharing options...
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