Ciclosporin

Moderators: talkhealth, Koh Ming Shao, Marcie Mom, AnnaB, StephanieJae

Post Reply
25 posts
User avatar
AnnaB
Posts: 689
Joined: Tue May 13, 2008 10:38 pm
Quote

by AnnaB on Mon Oct 11, 2010 10:52 pm

Re: Ciclosporin

That is great news, so pleased your son is having a positive rsponse.
AnnaB
Forum Moderator
talkhealth moderation team

Jimbob
Posts: 336
Joined: Thu May 08, 2008 9:00 pm
Quote

by Jimbob on Tue Oct 12, 2010 8:54 pm

Re: Ciclosporin

James's eczema seems to be getting worse again. I hope its not a downwards spiral or sign of infection. He is on clarithimycin at the moment though which was started at the same time as cyclosporin.

mandyafc
Posts: 11
Joined: Sun Sep 19, 2010 1:35 pm
Quote

by mandyafc on Sat Oct 16, 2010 10:48 am

Re: Ciclosporin

How is James's eczema now Jimbob? I so hope the ciclosporin is working for him, it worked wonders for me when I was taking it.

Jimbob
Posts: 336
Joined: Thu May 08, 2008 9:00 pm
Quote

by Jimbob on Mon Oct 18, 2010 8:28 pm

Re: Ciclosporin

James's eczema seemed to be flaring again for a few days but seems to be getting betting again now. His top half of his body is really good compared to what it was but his legs and feet seem to be clearing slowly now.

User avatar
AnnaB
Posts: 689
Joined: Tue May 13, 2008 10:38 pm
Quote

by AnnaB on Mon Oct 18, 2010 9:48 pm

Re: Ciclosporin

Hi, How long has he been on it for? I understood it takes a while to work. Have everything crossed for you.
AnnaB
Forum Moderator
talkhealth moderation team

Jimbob
Posts: 336
Joined: Thu May 08, 2008 9:00 pm
Quote

by Jimbob on Tue Oct 19, 2010 9:02 pm

Re: Ciclosporin

My son has been on it for 2 weeks now. His eczema seemed to be improving a lot in the first week and then went downhill. It then seemed to be looking a bit better again yesterday but today looked just as bad as he did before he went on it especially on his legs. We went for a follow up appoinntmennt today and his consultant derm has taken him off it as he says there is not much improvement at all ad it certainly has not improved his quality of life. My son has now been given protopic to try for a second time as the derm feels we may have given up to soon in the past due to burninng sensation and extreme itch attacks. He has been given the 0.1% instead of the 0.03% to try and get the eczema uder control.

figgymyson
Posts: 16
Joined: Mon Aug 11, 2008 4:50 pm
Quote

by figgymyson on Wed Oct 20, 2010 11:39 am

Re: Ciclosporin

Hi,

I rarely post on here but have been reading your posts with interest over the last few days. First of all I speak from experience as I have taken Cyclosporin, Azathiaprene and am currently taking Cellcept. Sometimes these drugs take a while to work and flow through your system. Although Cyclosporin is the more reliable drug and often works quicker than the others, I don't think 2 weeks is a long enough time to give it chance to work. When I took it I was also initailly given a low dose for a couple of weeks (to check there is no reaction) and then this was increased. These drugs will take longer to work depending on the severity of eczema and the length of time you have had it. I was told 4-6 weeks each time. Also these drugs often have to be used in conjunction with other medication - again depending on the severity of eczema. They improved my eczema considerably and on certain parts of my body I no longer have to apply topicals. On other areas where my eczema is worse, the immunosuppressants take the edge of my eczema but I stll have to apply Protopic.

User avatar
AnnaB
Posts: 689
Joined: Tue May 13, 2008 10:38 pm
Quote

by AnnaB on Wed Oct 20, 2010 11:14 pm

Re: Ciclosporin

Hi, yes I also thoght it took longer to take effect. Upto 1 - 2 months for 1st signs then on gong improvement for a couple of months.

We use protopic at night AND steroids in the day, luckily neither of my children suffer the side effects. We are certainly flaring now the weather has turned and frosts started.
AnnaB
Forum Moderator
talkhealth moderation team

Jimbob
Posts: 336
Joined: Thu May 08, 2008 9:00 pm
Quote

by Jimbob on Thu Oct 21, 2010 8:43 am

Re: Ciclosporin

My son was o 0.4ml of cyclosporin twice a day which if there had been ennough improvement he would have stayed on then it would have been reduced month by month. We were also using eumovate ointment twice a day on his body in quite large quantities annd 1% hc ointment for his face. His cosultant felt that it was not worth the risk to continue the treatment as he could not see any improvement and inn his experience he has always beenn able to see a reasonable differece in that time frame. He is a specialist and he is based at the mannchester children's hospital so I have to take his word on it. I have to say I was worried about all the possible side effects anyway annd if he feels its not worth continuinng with the thats fine.

figgymyson
Posts: 16
Joined: Mon Aug 11, 2008 4:50 pm
Quote

by figgymyson on Thu Oct 21, 2010 11:58 am

Re: Ciclosporin

Has the specialist offered any other treatment options such as UV treatment or the option to use protopic instead of the steroids - particularly for the face area? Just interested to hear what your son's options are now?

Post Reply
25 posts