Coming off my meds!

[Luckystars182]

I'm having such a poop time at the moment!
So for the past 8 months I've been taking ciclosporin but after suffering with tonsillitis every month since starting the meds and many other infections they've decided it's time to come off them!
It's lovely it worked wonders and made me feel a little bit like a normal 27 year old I could wear shirts and pin my hair up cause it had all cleared.
Now I'm excited to be coming off the tablets cause hopefully i shouldn't be so poorly but since being weaned off the tablets my scalp has flared up so much and little patches are coming back so I'm scared a nervous about the flare up! Got 2 months before I see the dermatologist again to discuss what's next! It's just so obey ointment again and Canada's shampoo again! He knows it never works on me but still insists on me using it.
Anyone know what might be the dermatologists next move or will I just be back to my flaky nasty sore self?

[AmandaL]

I would ask to be seen sooner. Cyclosporine leaves your system quite quickly so you don't want to end up feeling miserable in 2 months time. Have you been on any other meds before Cyclosproine?

[Luckystars182]

I would ask to be seen sooner.  Cyclosporine leaves your system quite quickly so you don't want to end up feeling miserable in 2 months time.  Have you been on any other meds before Cyclosproine?

They won't see me any sooner! I did say to him that I didn't wish to seeing him 2 months down the line. He may end up with a black eye! I joke but it makes you feel that way sometimes! I was on Sulfasalazine because of my psoriatic arthritis which helped the psoriasis

[Fred]

Have you tried Methotrexate or Fumaderm?

Methotrexate personally I would avoid.

Fumaderm is getting around a bit more now in the UK and some are getting good results.

After that it's the Bio's.

Oh and getting yourself wound up about it won't help, having said that I have sometimes advised people to get as much psoriasis as possible as it can help in the dermatologists next move.

[Luckystars182]

Have you tried Methotrexate or Fumaderm?

Methotrexate personally I would avoid.

Fumaderm is getting around a bit more now in the UK and some are getting good results.

After that it's the Bio's.

Oh and getting yourself wound up about it won't help, having said that I have sometimes advised people to get as much psoriasis as possible as it can help in the dermatologists next move.

I'm gonna keep up with the deep breathing, whatever happens is meant to happen in my opinion. I suppose its gonna be a wait and see kinda of job then. cheers for you words of wisdom

[jiml]

I would certainly write formally and ask for an earlier appointment as the psoriasis is beginning to return already. Tell them in writing that you know the effect it's going to have on your body and an even worse effect on your mind, explain that you are newlywed and for the first time you have felt "normal"  on cyclosporine, and the fact that it's made you susceptible to throat infections is plainly obvious.
All you are asking is for the appointment to be brought forward to say one month, so the ciclosporin is out of your system and you can be monitored and got onto another treatment before psoriasis and the arthritis run riot on your body
Noooo. Don't accept going back to the flaky sore person you were

My guess is you may be offered acetretin, that's in his armoury and could be effective for you , many here are on it and staying clear , or another option is humira , it's a bio but I think it's lower cost than the stelara .
Stelara would be ideal if you can get it  I'm sure Fred will give you links to the pages to read here , be ready go armed with knowledge, it's a stronger position if he thinks you know about the various medications

I would like to see you on Fumaderm as I think that would work on your PsA and psoriasis , but it is only my opinion and the dermatologist I seem to remember ruled that out last time.

But honestly don't just sit and wait .... For you it's not like just another clinic, which I go to every three months, and to be honest I don't think anyone would mind being kept waiting another half hour  if they could slot you in, ring his secretary bleat on her shoulder, I would cry if it helps to sob down the phone,
They think they have given you an appointment and you are happy..... TELL THEM YOURE NOT  sorry for shouting  

[Fred]

I'm sure Fred will give you links to the pages to read here  

We have lot's of posts about the different Bio's but this one gives you the basics [thread=77]

In my day they tended to start you on Remicade, but today I think they mostly go for Enbrel or Humira. Though I've noticed a lot more members recently saying they have gone straight on to Stelara, but I didn't want to give Lucky to much of an information overload.