Help needed for Ciclosporin

First thing look on the National Instituie of Clinical Excellence (NICE) web site that will give you the criteria, next look at the British Association of Dermatology (BAD) web site. That will give you the clinical info. There are some useful Youtube vidioes that will explain the basics of Monoclonal Antibodoes. Which is what Biologicals are. You will get a visit from Healthcare at Home to show you how to adminster any iinjections, then supplies are delivere dto you, mine go to my local pharmacy where I can pick them after work. They need to be kept in the fridge. You will also get first clas sback up from pnone calls from nurses and text messages as to when deliverys will arrive and when you are due to take them.

Hi all, thought I’d update you on my situation. Started Ciclosporin on March 4th on 300mg a day. It worked wonders in that after about 2 months I was scale free. Bloods have been fine throughout. I have now also been prescribed blood pressure tablets as I was in Stage 1 hypertension which to be honest was probably more down to my diet and weight more then the medication. About 2/3 weeks ago my consultant reduced me to 200mg a day Ciclosporin and unfortunately I’m Starting to see new scales appear (and it’s looking similar to how it first started for me back in September). small circular scales on different parts of my body when picked / scratched the scale peels leaving behind a red sore, I know the docs are trying to ween me off Ciclosporin which worries me as I have a very aggressive case which I know will come straight back once I’m off Ciclosporin. Consultants Have mentioned light therapy to but everyone I have spoken to who’s similar to me had it said it doesn’t work and also I can’t physically get to a hospital 3:4 days a week due to work. I’ve been recommended Humira by a few people now including on this forum. So if I do come off Ciclosporin I really want to be put on to that. To summarise Ciclosporin worked wonders for me with no side affects.

Hi. Glad it starting to go right for you. Cyclosporin can have effects you can't see, that's why all the blood tetsts. Light Therapy can be very effective, with the added buzz you get a good winter Tan at the NHS expense, the Dopomine in winter is also a nice thing. The problem with any long term control of a condition is a balncing act bettwen the good and the bad efffects. Have you asked why the Consultatnt want's you off the Cyclosporin? My consultant put me onto the BAD (British Assocoation of Dermatologists) and the NICE website. There is a highracki (Cannot figure the spelling of this :-) ) of treatment. with good reason, to find the minimum care nessacary for the maximum effective treatment. Have a look at the websites, get some questions ready then discus sthe alternatives with the Consultant.

Hey guys! Iv been reading this thread and y’all have really calmed me down that’s for sure lol! I have extreme anxiety especially with taking pills and I’m definitely a hypochondriac when it comes to swallowing medication 😅 i got diagnosed with eczema and psorasis at 16. Never once had any huge flare ups though until about 19 years old. Was told it was an allergic reaction though so I didn’t think twice about it. They gave me a steroid injection at the ER and it disappeared in 2-3 weeks 🤷🏻‍♀️ So after that, I would occasionally get a scale here or there but iv always had it severely on my scalp. UNTIL THIS YEAR OH MY GOD. If I could show y’all pictures on here I would! My dermatologist and doctors are going nuts trying to figure out what’s different or what caused it. There’s many theories. 2 months ago I stayed at an air b&b and I woke up in hives. Thought it was bed bugs but it was spreading everywhere so I went to ER. They told me it was an allergic reaction to something so they gave me doxycycline...my body HATED the doxycycline so I refused to finish it. Well then about a month later I ended up coming in contact with someone who had strep throat and I didn’t know. So I then developed strep 🙃 went back to ER and got prescribed amoxicillin... ended up being severely allergic to it 😩🤦🏻‍♀️ So I had about 2 days left of it and I could NOT take it. Well because I didn’t finish that medication my dermatologist told me that I developed another type of psorasis from the strep which most of us know as Guttate Psorasis. My skin .. when I tell you looked like I rolled in multiple ant hills.. it was BAD. Tried multiple ointments, nothing worked. Home remedies, oatmeal baths, bleach baths, epsom salt baths, anti fungal baths even 🤷🏻‍♀️ my skin wouldn’t budge. (I promise there’s a reason this story is so long lmao) Keep in mind, iv never ever had this bad and long of a flare up. It traveled all the way up from toes to cheeks! So I went to the ER again because I was desperate and my skin was starting to burn actually.. so I convinced the ER doctor 2 weeks ago to give me another steroid shot since it worked so well for me at 19. (I’m 27 now) - DID ABSOLUTELY NOTHING. I marched back up to my dermatologist next morning almost in tears because this was taking over my life! I couldn’t even hide it anymore with clothing at work. SO she prescribed me triamcinolone acetonide cream 0.1% and OH MY GOD this is by far a miracle ointment! It’s been 4 days and my back which was COVERED is now pretty much cleared. My legs are taking a bit longer but it’s definitely working. I was supposed to only use this ointment to hold me over until my lab results came back to get approved for Cyclosporine. Well I’m supposed to start it tomorrow (6 pills in the morning and 6 pills at night 300mg for 3 months) and now I’m sort of wondering if I should wait a little longer to see if this ointment clears me first? Cyclosporine scares me. The side effects are really extreme and me being nervous just taking an Advil.. would prefer to not be on cyclosporine if possible.. however I’m afraid that if I don’t take the cyclosporine then this will come back in full force. I was warned by my pharmacy, doctors and dermatologist that this medication can lead to death if not monitored religiously. Which honestly makes me feel like it’s not worth it. I just recently lost 140 pounds so weight gain side effect scares me. I worked really hard to lose this weight. And hair loss on head and growth everywhere else?! Heck no!! The swallowing I’m reading that some of y’all are having trouble with and sore throat ?.. actually terrifying let’s be real for a second. Who has taken a dosage as high as I was prescribed of cyclosporine who also has extreme anxiety like me? I need YALL to tell me what’s really going on 😂 the reviews are great here but the reviews iv read elsewhere are terrifying 😩 halp!

Should I be worried. .?? Ciclosporin... picked up my prescription today. ... there are some serious side effects!! I have discussed this drug with my dermatologist.. and it’s really the only next option available ... however. I AM slightly very worried. Any advice pls ?? I’ve been on humira. Otezla. Methotrexate...light treatment.. you name it ... really given them all a good chance ... But none suited me in the end ...👎. Kidney issues. Liver issues. Horrendous migraines . Severe fatigue. Hair loss ... I’ve been very unlucky regarding side effects. All back to normal now thankfully However. Now been prescribed ciclosporin Thoughts / advice welcome ???? Thanks in advance... Jen ( suffering 35 years. I’m 50. And v low. It’s running / ruining my life )

Hi Jen I've used ciclosporin a couple of times 10+ years ago, cleared my plaque psoriasis within a few weeks but both times I had to come off it because of high BP and the liver pointers were raised.. My advice would be to give it a go and if it doesn't work ask to be considered for Cosentyx/Secukinumab. Been taking it since early 2017 & pretty much psoriasis free. Regards Dan (54, Psoriasis from age 17)

Hello Jen. I can understand you rconcern. Any drug has side effects, However,the drug is well known, you will be closley monitored and if the dermatoligst suggests it is the only choice. I took it for about 18 months, befors going to Methotraxate and now Humira. Which for me has done exactaly what it says on the tin. For me it took about a month , six weeks to show effects but it cleared the scales completly. The main side effect I had was a bit of tingling on the lips. You do need to keep a fairly close eye on the timing of the doses. I'm 64 now and had psorasis since I was a kid, my Mother had it and it was no big deal till about 5 years back when it went into overdrive. I can say that Cyclosporin did save me from major complications.

Thankyou. To both responses. It’s just good to hear from experience.. regarding these things. I will still commit to ciclosporin, as I have all past prescriptions... I do work outdoors , so covering up , avoiding sun will be difficult. But I’ll adjust accordingly.. strange that the sun does help , but It would cause more harm. ( skin cancer threat with ciclosporin especially I understand) Humira was my last drug ... it worked well regarding skin, but my liver hated it .. it’s been 16 months now. And all recovered. Hence a new style of drug. It’s great to hear you’ve found drugs that work. Fingers crossed I will do soon. Thankyou for your responses. Ill update accordingly... jen

I have took ciclosporine 3 times during my life, once at 21, 24, 27. All for different durations between 3-13 months. Thankfully i can say that the only really side effect that i had was increased hair growth and also heated fingers at the start. I would also been an extremely active person and competed in sports at an elite level and it never effected my performance at all. The first time i took it was when i was hospitalised with erythrodermic psoriasis for two weeks with 95% coverage. It worked wonders. Thankfully when i have took it since then a short 3-6 month blast has been enough to get my Psorasis under control where i can use enstillar spray 1-2 times per week to manage at. I would consider myself a health freak and taking the medication i found very hard mentally due to the damage i know it was doing to my body. However, i have learned now that you need to balance the quality of life over the side effects and i would go with it as long as you dont get side effects. Hopefully i dont need to go on the medications again but who knows what the future holds. Good luck with your treatment, feel free to ask anymore questions and i will help where i can.

Jenora, I work outside as well,have done all my life. A decent hat,and long sleeves and trousers has always been OK forme. Though in Jersey where Igrew up we were being warned about sun exposure and Melenoma from age 5 or so.One grief though if your skin doesen't work properly, your temprature dosen't regulate properly, and on Cyclosporin,Iwouldbe shivering in a sauna:-). So might advise toinvest in some good thermals! I would also recommend , genrally for any out door activity, Gortex or other brand like Sealskin breathable socks. Keep the feet lovley and warm ,especially in wellies if your feet sweat and get cold.

Crikey. I’m always cold anyway !!! On a plus side. I can wear all my thermals at once now !!! Currently on 3 layers. Will take me ages to get dressed .. I’ll have to get up 5 mins earlier !!! Thankyou. To all of you who have written so far. Fingers crossed it suits me. X

Update. Its day 5 now on cyclosporine I would say the flare up has subsided. And definitely not getting any worse skin wise. However. Mentally I’m still very worried. It’s so harmful .... but my psoriasis is running and ruining my life. Side effects were only tingling hot ache in fingers. But now stomach aches and no appetite... nausea too. I am going to persevere for the month up until my next appointment with clinic. And obviously my bloods and BP... just worried. And frightened. Of harming my body and hating my body. It’s not fare is it ????? Jen

If you are seeing an effect after 5 days, it's working fast! Took a good month for me. Yeah feels like your being hit by a brick, but your whole immune system is being readjusted. One thing to watch KEEP DRINKING! Cyclosporin can cause Dehydration, and belive or not, but check the signs and symptoms, a lot of what you are feeling is associated with dehydration. You can get oral rehydration powder, but its an aquired taste. 7 Up is a good drink but what I found economic, tastes good and worked was Tesco Flavoured Spring Water. All natural sugars. Also timing of doses, the stuff has about a ten hour half life, I found if I was a couple of hours late, yuk. We all sympathise with you, its a bloody lonley thing to go through. and you will have a hard time acepting, it will get better. I can tell you, my teddy was chaining himself to railings for the first couple of weeks. he had more flyig time than a pilot:-)

Thankyou. Must admit. My usual thirst has depleted. So probably not drinking as much as I used to. Because I feel rough. I’ll try the ol .... Head up , shoulders back. March on !! Or Tits out , chin up !!!!! With loads of water of course. Thankyou. For being there. Jen

Go for it Girl! :-) Any time, if we don't help each other, who will?

Hello folks, first time poster here and was looking for some thoughts on cyclosporine. I was using enstilar foam for around 1 1/2 years to combat psoriasis plaques, it worked pretty well initially then the effectiveness gradually declined. I started cyclosporine last week 100mg x 2 per day (I’m 90kg) and have came off enstilar to see how cyclosporine does itself without anything else with it. I’ve heard it is really effective. However, my skin has flared pretty badly everywhere and there’s been no sign of it calming down. I’ve been on cyclosporine for 8 days now and had no side effects (except the odd minor headache) Has anyone else had a similar experience? Could it be the withdrawal from enstilar? When does cyclosporine effects usually kick in? Thanks all, K

Hi. I’ve also been on cyclosporine for roughly the same time now. Initially I thought my flare ups had calmed .. but sadly no. Still so sore. I’m back to using Enstillar again. As well as the drugs. I’m also suffering from side effects.... badly. So prob stressing from those ... I’m sorry I can’t help at the mo. But there is a strong support on this blog. Let’s hope we get results soonish. ?? X

Welcome in. Yes it does take time, how long varies , For me it was a couple of weeks before I saw a real diffrence. Also it is quite depressing how quick the Psoriasis flares when you stop or change tretament. Make sure you drink plenty, The stuff can cause dehydration, which has enough side effects of its own. I also found I had to time the doses carefully , within a couple of hours or so. I hope it works for you.

Why don't both of you at least mention to the Dermitologists about Biiologics? You may have to run through the other treatments first, but Adulimumab , Trade name Humira, really is ideal. You inject yourself once a fortnight with a pen. Takes about ten seconds and forme zero side effects.