Cyclosporine for my P?
Question:
I was on Methotrexate 6×2.5mg once a week for 3 years. The slight improvement in psoriasis didn’t seem worth the possible side effects on my liver etc and the one day of feeling sick every week and the 6 weekly blood tests. One really good thing was that it put breeding totally off the agenda for three years! If it works for you then stick with it. Some of the things I’ve learnt over my 30 years with prsoriais are that there is no cure, what works today may stop tomorrow and what was useless yesterday may start working tomorrow, and stopo worrying what others think about your skin – if you need the sun on it then strip off as much as you can. Good luck Charles
– Hide quoted text — Show quoted text -> >It seems to vary. Apparently, for both cyclosporin (neoral) and > >methotrexate, the expectation is that after about two years, you’ll > >have side-effects that mean you must stop. But that’s just an > >average. > I haven’t had personal experience with this, but not a few derms will prescribe > methotrexate for skin-only psoriasis (not psoriatic arthritis) for only as long > as it takes to get the skin symptoms down to a level at which other treatments > – less dangerous treatments – can successfully battle the disease again. > For whatever it’s worth… > – Dave W. > http://psorsite.com/ > Hi > I suffered for three years with extremely severe hand (and in the > later year foot) p – and was at a point where I could harldy dress > myself, had to wear white cotton gloves all the time and was in > constant pain. My hands were also continually infected. > My derm prescribed every cream there was – on there own and in > combination – as well as antibiotics both orally and in cream form. I > also had a three month course of PUVA. Nothing worked – and therefore > I am 24 – and have been surprised to hear of people saying that meth > is rarely prescribed for people in there early twenties – or for > people without PA. I was infact told that Meth and Cyclosporine were > my only options at my age – because other drugs had such long term > effects on reproduction. I wasn’t suicidal or clinically depressed – > although obviously life was hard – but I prefer to battle through > I started off on a 5mg weekly dose – and have now been on a 15mg > weekly dose since August. I had fortnightly blood tests to begin with > and am now tested once every two months. Every test has come back with > a perfect result. > I have mild side effects – such as loss of appetite and feeling sick – > but nothing I can’t handle – and I’ve lost way over 3 stone – which > for me is a plus! > I have had complete, 100% clearing since July and have never been > incredibly excited about having sweaty palms as it’s something I > didn’t have for two years!! > I find it strange that people are reluctant to try these drugs > (although I can understand why people come off them if they fail to > work after 6 months +) because although the potential risks are high > the potential benefits are so much higher! I can hardly remember the > pain I use to suffer – and every day I find myself doing something > with my hands that makes me think WOW – I never thought I’d be able to > do this again! As well as the pain stopping me from doing things with > my hands I found that I did loose a lot of movement and dexterity > which is only now coming back. My feeling is that becasue for two > years I kept my hands as still as possible my muscles began to waste > Obviously, everyone has to make their own decisions but I would say to > anyone considering going on a strong drug PLEASE think of what they > Helen
Response:
I don’t know what you’ve been told but please don’t get pregnant while on this medication. Also, there is a rather long period in which you should not get pregnant once you get off it. I can’t remember what it is. All I remember is that my derm would not prescribe mtx or cyclo as long as I was in child-bearing years and able to become pregnant. Once I had my tubes tied, I was off to the races. Good luck. – Hide quoted text — Show quoted text -> >It seems to vary. Apparently, for both cyclosporin (neoral) and > >methotrexate, the expectation is that after about two years, you’ll > >have side-effects that mean you must stop. But that’s just an > >average. > I haven’t had personal experience with this, but not a few derms will prescribe > methotrexate for skin-only psoriasis (not psoriatic arthritis) for only as long > as it takes to get the skin symptoms down to a level at which other treatments > – less dangerous treatments – can successfully battle the disease again. > For whatever it’s worth… > – Dave W. > http://psorsite.com/ > Hi > I suffered for three years with extremely severe hand (and in the > later year foot) p – and was at a point where I could harldy dress > myself, had to wear white cotton gloves all the time and was in > constant pain. My hands were also continually infected. > My derm prescribed every cream there was – on there own and in > combination – as well as antibiotics both orally and in cream form. I > also had a three month course of PUVA. Nothing worked – and therefore > I am 24 – and have been surprised to hear of people saying that meth > is rarely prescribed for people in there early twenties – or for > people without PA. I was infact told that Meth and Cyclosporine were > my only options at my age – because other drugs had such long term > effects on reproduction. I wasn’t suicidal or clinically depressed – > although obviously life was hard – but I prefer to battle through > I started off on a 5mg weekly dose – and have now been on a 15mg > weekly dose since August. I had fortnightly blood tests to begin with > and am now tested once every two months. Every test has come back with > a perfect result. > I have mild side effects – such as loss of appetite and feeling sick – > but nothing I can’t handle – and I’ve lost way over 3 stone – which > for me is a plus! > I have had complete, 100% clearing since July and have never been > incredibly excited about having sweaty palms as it’s something I > didn’t have for two years!! > I find it strange that people are reluctant to try these drugs > (although I can understand why people come off them if they fail to > work after 6 months +) because although the potential risks are high > the potential benefits are so much higher! I can hardly remember the > pain I use to suffer – and every day I find myself doing something > with my hands that makes me think WOW – I never thought I’d be able to > do this again! As well as the pain stopping me from doing things with > my hands I found that I did loose a lot of movement and dexterity > which is only now coming back. My feeling is that becasue for two > years I kept my hands as still as possible my muscles began to waste > Obviously, everyone has to make their own decisions but I would say to > anyone considering going on a strong drug PLEASE think of what they > Helen
Response:
- Hide quoted text — Show quoted text ->It seems to vary. Apparently, for both cyclosporin (neoral) and >methotrexate, the expectation is that after about two years, you’ll >have side-effects that mean you must stop. But that’s just an >average. > I haven’t had personal experience with this, but not a few derms will prescribe > methotrexate for skin-only psoriasis (not psoriatic arthritis) for only as long > as it takes to get the skin symptoms down to a level at which other treatments > – less dangerous treatments – can successfully battle the disease again. > For whatever it’s worth… > – Dave W. > http://psorsite.com/
Hi I suffered for three years with extremely severe hand (and in the later year foot) p – and was at a point where I could harldy dress myself, had to wear white cotton gloves all the time and was in constant pain. My hands were also continually infected. My derm prescribed every cream there was – on there own and in combination – as well as antibiotics both orally and in cream form. I also had a three month course of PUVA. Nothing worked – and therefore I am 24 – and have been surprised to hear of people saying that meth is rarely prescribed for people in there early twenties – or for people without PA. I was infact told that Meth and Cyclosporine were my only options at my age – because other drugs had such long term effects on reproduction. I wasn’t suicidal or clinically depressed – although obviously life was hard – but I prefer to battle through I started off on a 5mg weekly dose – and have now been on a 15mg weekly dose since August. I had fortnightly blood tests to begin with and am now tested once every two months. Every test has come back with a perfect result. I have mild side effects – such as loss of appetite and feeling sick – but nothing I can’t handle – and I’ve lost way over 3 stone – which for me is a plus! I have had complete, 100% clearing since July and have never been incredibly excited about having sweaty palms as it’s something I didn’t have for two years!! I find it strange that people are reluctant to try these drugs (although I can understand why people come off them if they fail to work after 6 months +) because although the potential risks are high the potential benefits are so much higher! I can hardly remember the pain I use to suffer – and every day I find myself doing something with my hands that makes me think WOW – I never thought I’d be able to do this again! As well as the pain stopping me from doing things with my hands I found that I did loose a lot of movement and dexterity which is only now coming back. My feeling is that becasue for two years I kept my hands as still as possible my muscles began to waste Obviously, everyone has to make their own decisions but I would say to anyone considering going on a strong drug PLEASE think of what they Helen
Response:
>It seems to vary. Apparently, for both cyclosporin (neoral) and >methotrexate, the expectation is that after about two years, you’ll >have side-effects that mean you must stop. But that’s just an >average.
I haven’t had personal experience with this, but not a few derms will prescribe methotrexate for skin-only psoriasis (not psoriatic arthritis) for only as long as it takes to get the skin symptoms down to a level at which other treatments – less dangerous treatments – can successfully battle the disease again. For whatever it’s worth… – Dave W. http://psorsite.com/
Response:
>> It seems to vary. Apparently, for both cyclosporin (neoral) and > methotrexate, the expectation is that after about two years, you’ll > have side-effects that mean you must stop. >He said that with methotrexate liver damage is a certainty. It is a trade >off and a decision that must be made between the physician and the >patient. He said he has used in for a limited time on patients that were >as young as in their early twenties, but only when their P was extreme and >they were emotionally beat down so far as to be a danger to themselves.
That sounds like a rather extreme view, possibly because your physician in this case was a dermatologist speaking from the point of view of someone treating psoriasis. Although I would agree that it seems most people trying cyclosporin for PA or Ps do have to stop within one to two years due to side effects, this is NOT necessarily so for people taking methotrexate (mtx). For either drug, you must be closely monitored for possible side effects. For mtx, you should also probably take daily folic acid supplements to counter the action of the mtx on folic acid utilization in the body, where it acts as a folic acid antagonist. With appropriate monitoring, most people tolerate mtx very well and may have absolutely no side effects depending of course on the dose and the person’s idiosyncratic response to the drug. It has been used this way for more than 30 years for the treatment of RA and probably 20 years for the treatment of PA and Ps. Under the guidance and supervision of a physician very experienced in mtx use in a PA or Ps patient, there is no reason to fear the longterm use of mtx when appropriate. That would mean either a rheumatologist or a dermatologist who has an extensive longterm use of the drug in his practice with similar patients would be necessary and safest. I personally have been on mtx for about 9 years so far without any problem and I have spoken to others who have been on it 20 or 25 years with similar positive effects. Also, never forget that we are not weighing the use of a powerful drug with potential for serious side effects against being perfectly well and without the very real "side" effects of the disease. Severe PA can and does lead to permanent longterm joint damage and disability. Severe Ps can and does cause serious pain and lifestyle impact that may affect a person’s quality of life forever. As usual with any drug, it is always necessary to weigh the potential benefits vrs risks ratio and to keep watch for either from BOTH sides, the drug AND the disease. LadyAndy Chat live with me at http://ivillagehealth.com/community/aolusers/pages/1,12910,538426_539… 0.html (my chats are on Sun evenings at 10 ET) Joint Replacement Board at http://boards.ivillagehealth.com/messages/get/bhivhjointreplace1.html
Response:
Thanks Andrea. When I first called yesterday the girl that answered the phone was new and said the soonest I could get in was the first week of January. I told her that would not do and they usually work me in. After talking to some of the others there that know me and the doctor she called right back and said to be there at 7:45 this morning. As you can tell, I have a really good relationship with him and his office staff. It pays big dividends to be friendly and joke around a bit with the help. Have a good Turkey day everyone. Chuck – Hide quoted text — Show quoted text -> Hi, Chuck… sounds like you have an excellent dermie there with a thorough > grasp of the possible side effects and monitoring that are necessary with > cyclosporine and similar oral drugs. > It also sounds like you understand how this stuff works pretty well after your > morning discussion with him. (by the way, I always use the "first appointment > of the day" method myself… it works 
) > As you know, the UV cabinet should help if you are careful and follow > instructions about exposure times. > Keep in contact with your dermie too, as there are other options in the way of > treatment if you need to take that route. > Good luck! > LadyAndy > Chat live with me at > http://ivillagehealth.com/community/aolusers/pages/1,12910,538426_539… > 0.html (my chats are on Sun evenings at 10 ET) > Joint Replacement Board at > http://boards.ivillagehealth.com/messages/get/bhivhjointreplace1.html
Response:
>He said first of all it is a temporary solution at best.
It seems to vary. Apparently, for both cyclosporin (neoral) and methotrexate, the expectation is that after about two years, you’ll have side-effects that mean you must stop. But that’s just an average. There are some who stay on these drugs for many years, with minimal side-effects. There are others who have to get off them immediately, … and a few who do even worse than that, either immediately or because of opportunistic infections that the drug might allow. >He went on to say that since I am already taking two oral medications >for hypertension and considering that my psoriasis is not really that >bad it is not an option for me at this time.
Sounds logical. It’s a subject for consultation between doctor and patient about when to use cyclosporin (neoral). Some will decide to go right for it hoping for the best, others are more concerned about the risks and put it off. I’ve been more in the later category, fwiw. J.
Response:
>He said that with methotrexate liver damage is a certainty. It is a trade >off and a decision that must be made between the physician and the >patient. He said he has used in for a limited time on patients that were >as young as in their early twenties, but only when their P was extreme and >they were emotionally beat down so far as to be a danger to themselves.
My take on it is that a lot of derms over the past five years or so have loosened up quite a bit on neoral, especially for just a 30-day course. If you start on a small dose, it does seem to wash out pretty quickly if there is a problem. OTOH, if you already have high blood pressure, it would surely count against. Still, if they throw in an extra couple of exams and blood tests in the first thirty days, I’d betcha some of the guys I’ve seen would go for it. J.
Response:
After reading some postings in here from people that are having good results with cyclosporine I went to my dermatologist this a.m. and talked to him about it. This time of year with the shortening daylight my P is getting progressively worse. He said first of all it is a temporary solution at best. Secondly he said that a patient on cyclosporine has to be monitored very closely because there is a real danger of kidney damage resulting in quite elevated blood pressure. He went on to say that since I am already taking two oral medications for hypertension and considering that my psoriasis is not really that bad it is not an option for me at this time. He is very sympathetic to what is going on with my lesions right now and prescribed a 1% Tazorac which is double what he did have me on. He went on to say that he normally only uses the oral medications for his psoriasis patients that are at the end of their rope and have it pretty severely and he hopes will be good patients about keeping appointments and getting regular blood work done. I have seen few doctors as caring as this man is. He even thanked me for coming in early to be his first patient so he had time to set down and thoroughly discuss what’s going on and even had some time to joke and talk about the holiday and our families. So, in conclusion, I guess cyclosporine is not for me. I burned my face so badly in my UVB cabinet Monday that I won’t be able to use it for at least a week and then will have to reduce my time clear down to fifteen seconds. In other words, start over at the beginning. Oh well, when it itches I know I am still alive and have feelings. ‘-) Chuck Perry, Sr. living with psoriasis for 62+ years.
Response:
Hi, Chuck… sounds like you have an excellent dermie there with a thorough grasp of the possible side effects and monitoring that are necessary with cyclosporine and similar oral drugs. It also sounds like you understand how this stuff works pretty well after your morning discussion with him. (by the way, I always use the "first appointment of the day" method myself… it works ) As you know, the UV cabinet should help if you are careful and follow instructions about exposure times. Keep in contact with your dermie too, as there are other options in the way of treatment if you need to take that route. Good luck! LadyAndy Chat live with me at http://ivillagehealth.com/community/aolusers/pages/1,12910,538426_539… 0.html (my chats are on Sun evenings at 10 ET) Joint Replacement Board at http://boards.ivillagehealth.com/messages/get/bhivhjointreplace1.html
Response:
> >He said first of all it is a temporary solution at best. > It seems to vary. Apparently, for both cyclosporin (neoral) and > methotrexate, the expectation is that after about two years, you’ll > have side-effects that mean you must stop.
He said that with methotrexate liver damage is a certainty. It is a trade off and a decision that must be made between the physician and the patient. He said he has used in for a limited time on patients that were as young as in their early twenties, but only when their P was extreme and they were emotionally beat down so far as to be a danger to themselves. – Hide quoted text — Show quoted text -> But that’s just an > average. There are some who stay on these drugs for many years, with > minimal side-effects. There are others who have to get off them > immediately, … and a few who do even worse than that, either > immediately or because of opportunistic infections that the drug might > allow. >He went on to say that since I am already taking two oral medications >for hypertension and considering that my psoriasis is not really that >bad it is not an option for me at this time. > Sounds logical. It’s a subject for consultation between doctor and > patient about when to use cyclosporin (neoral). Some will decide to > go right for it hoping for the best, others are more concerned about > the risks and put it off. I’ve been more in the later category, fwiw. > J.
Response:
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