Help needed for Ciclosporin

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Posted Thu 7 Jan 2021 20.17 by K

Thanks a lot for your replies Jenora and Dodge, it’s really helpful hearing from those going through/have been through a similar experience! I know it’s early days in the cyclosporine treatment but the immediate flare after stopping enstilar caused me some concern. The ups and downs of this condition are never ending... I’d be interested to hear about your progress as you go through your cyclosporine treatment Jenora, I’ll ensure I post regular updates here of how I’m getting on. Thanks again folks, K

Posted Thu 7 Jan 2021 20.24 by K

DodgeWC51, I have had numerous convos with my derm regarding biologics as, in my research, they seem to have less potential side effects and target only a specific part of the immune system... However, they say I have to go through the systemic medication route first before I’m considered for biologics. (Which I totally disagree with) Is there anything I can mention to my derm that may get me to the biologic stage quicker? Many thanks, K

Posted Fri 8 Jan 2021 04.37 by DodgeWC51

Not that I know of. It depends on how you tolerate other tretaments. One problem with Bilogics is cost about £740 a dose, It was about three years before I was put on them.

Posted Fri 8 Jan 2021 13.24 by Jenora

I was put on humira before cyclosporine... But sadly for me. My liver reacted quite badly to it .... that was 16 months ago. Now recovered, Took a while but back to normal. Last 24 hrs .. horrendous. Feeling too rough to move. Headache !!! Nausea. Dodge is so right. Keep an eye on on hydration. And exhaustion !!! You can’t afford to ignore these signs. I’m suffering. Jen Il keep updating you , k,

Posted Fri 8 Jan 2021 13.52 by DodgeWC51

Doctors , friends even family mean well and are sympathtic. Very nice , but you haven't laid here with the world spinning inside your head. Both of you are at war with yourselves. Your bodies are kicking crap out of them selves. And it hurts!! The up side is it does get better! Slowly and not easily, but it does!! It took me 6 months, and I've always been active and outside, up to all sorts.Being told you can't the answer is B**locks! But when uor body says 'No I won't letyou'.God, did it get me down. But iut does get better.Hunker down for a long haul, we are all here when the urge to scream gets to much. But when the light does comeon, it's Glourious ,every day a bonus , and do you really start to appreciate life.I wouldn't reccomemend it, but I belive it'smade me a better person. The old man will now retire! :-)

Posted Fri 8 Jan 2021 13.55 by DodgeWC51

Onemore thing. I found gargalling with diluted TCP,really helped the throat.

Posted Fri 8 Jan 2021 15.53 by K

Sorry to hear about the bad side effects Jenora, I hope they resolve quickly for you! What dosage are you on if you don’t mind me asking? Still no major side effects here, I’m on day 9 now. Looking through the thread it seems like others are on a larger dose than I was recommended by my derm (I’m on 200mg a day and seen others on 350mg...ish) Thanks for the advice DodgeWC51, much appreciated! K

Posted Fri 8 Jan 2021 17.10 by Jenora

Yup. Thanks dodge. Feel a little ray of hope shining now ... K.... I’m on 100 am/ 50 pm. Slightly lower dose than you ..?? But basically think we are at a similar stage.

Posted Fri 8 Jan 2021 17.31 by DodgeWC51

The dose for me built slowly, Can't remeber what it ended up I do remeber the first words the Consultant said to me when I saw her. 'Tell me why I shouldn't put you in hospital?'. That was a shock. I know freinds and family mean well, but at your stage I was thinking, what do you know about it? That and the frustration why I can't I do things, and that was without the added mayhem of Covid. Just know everyone here knows the paractical truth, No false smiles nessacary. Though we can also say it will get better

Posted Wed 13 Jan 2021 14.10 by K

Hello all, Just an update - that’s me finished 2 weeks on cyclosporine. Still not obvious improvement in my skin and also no significant side effects to report. Was in hospital for my 2-weekly blood test and BP check today. BP absolutely fine and will need to wait for blood work results. I’m starting to think my 2 x 100mg dose may be too little for me. I don’t see the derm for another 6 weeks to discuss this unfortunately :( How’s everyone else getting on? How are you doing Jenora? Hope the side effects have calmed down Take care, K

Posted Wed 13 Jan 2021 14.21 by DodgeWC51

Hey K. So far so good. Patience! It is a long slow crawl, Your whole body has to adjust. The dose will vary as you get acustomed to it, and the Dermatologist sees how effective it is, thats why the six week gap, no point before. I know how frustrating it is, but good news on the BP etc.

Posted Wed 13 Jan 2021 21.14 by Jenora

Evening. Good to hear from you both .. K, We do seem to be on the same time frame .... I also went for bloods today ( although a few days late ) 18 days. Should’ve been 14 ... am doing my own BP, that seems fine. Still suffering. Although a little improved from last week. Painful kidney area and stomach ache constantly... spoke with my dermatologist yesterday. And she’ll keep an eye on the results. My job is very physical.. not helpful at the mo. So quite exhausted. However. I eat plenty. And am drinking masses !!! (Water, not gin sadly 🤪) I would say my skin is no worse. that’s a plus at least !!!! So. We keep going. X

Posted Wed 13 Jan 2021 21.26 by DodgeWC51

Hey Jenora, seaweed extract isupposed to be good for animals coats. The Scots, yes the Scots, make a gin called Da Mhile with seaweed extract , so its medicinal! :-) Not the best weather to be out. WhereI amgrey skies andconstant rain.I'mconsidering hibernation.

Posted Sun 17 Jan 2021 18.44 by Jenora

Evening... Just wondering. How you’re getting on K ?? And more importantly, any side effects yet ??? I’m asking as I’m still suffering.. skin is actually improving, mildly. No flare ups and the itching and burning has subsided ... so that’s great ... But .... Pain. Around my liver specifically, Sometimes severe ... shortness of breath too. I’ll contact my dermatologist tm. But was wondering if it’s a common feeling at the start ???? Jen

Posted Sun 17 Jan 2021 20.51 by K

Hey, Aw I’m sorry the side effects are so troublesome. I agree that a chat with your derm would be a good idea - they’ll advise and hopefully put your mind at ease! For me I’ve had a few mild headaches over the past couple of days and a bit of fatigue - nothing too major. Still no improvement in my skin, starting to think it might be topical steroid withdrawal as I completely stopped using enstilar the day I started cyclosporine and a few days later a flare occurred and no sign of calming down as yet ( 2 1/2 weeks in) Has anyone else experienced this? ...but yes DodgeWC51 perhaps further patience required on my part! K

Posted Tue 19 Jan 2021 14.22 by AbbieHowarth_

Hi, I am new to the group, I have was diagnosed with Guttate psoriasis when I was 13 years old , it just appeared out of no where. I am now 21 and still suffer with it badly. The only time I have been clear is after having light therapy. I seen my dermatologist yesterday and he has recommended either Methotrexate or Ciclosporin. I took methotrexate when i was about 15 years old and it made me rather poorly, I was very nauseas, went off my food and was starting to loose weight so I was taken off this, He is sending me for a chest X-Ray and blood test before me deciding which I would like to be put on. Can people help me out with how each medication has helped or not helped their skin as I'm finding it hard to make a decision. Thanks!

Posted Sat 23 Jan 2021 14.05 by K

Hello Abbie, I can only comment on Cyclosporine out of those 2. I’ve being on it 3 1/2 weeks now and now seeing some very minor improvements in my skin, mostly on the arms. I’ve had no major side effects as of yet apart from the odd headache. How are you getting on Jenora? Hope the side effects have subsided. K

Posted Sat 23 Jan 2021 14.41 by Jenora

Hello again Abbie. As we all know by now. Every different drug reacts so differently to each one of us. My history of medication for psoriasis is long. Sadly. My body really doesn’t tolerate drugs it appears. However. I have gladly accepted all that has been offered., and percevered with them. Side effects too I actually loved methotrexate... it worked wonders for me , but with extreme fatigue and horrendous hair loss , I was taken off it. Cyclosporine for me is early days. Same as K... We are drug buddies at present. Both at same stage bizarrely... How are you going K ??? My kidney pain is slightly more tolerable at present. However. I’ve had to reduce my dose ( can’t get hold of doctor to repeat prescribe ) and my dermatologist isn’t obviously getting my messages... as she is red hot at responding. And still heard nothing. So. In a nutshell ... it’s shite !!!!!!! But. Life goes on. My skin was definitely improving. It’s getting worse again now. Lower dose ... I would always say ... take your specialists advice. They know what they’re doing. Go with. Try not to worry. If it doesn’t work, there’s always other options. Jen
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