Problems with Skilarence

Posted Fri 20 Apr 2018 12.02 by JuneK

My Other Half is really struggling with Silkarence. He is on week 6 but can't get to 3 x 120mg a day, he can just about manage i a day. The stomach cramps are shocking and there is no pattern to them, he had a tablet at 6.00pm but the cramps started the next day at 8.00am ....10 hours later. He is losing time at work as he feels so unwell, and he is losing weight rapidly. How on earth will he get to 6 x 120mg a day ?

Posted Fri 20 Apr 2018 13.19 by Toodlesoodles

If the side effects are really bad then he needs to get in contact with his dermatologist and discuss the dosage. Perhaps it can be cut back for a while until his body gets used to the drug? Have the tablets started to work yet? Week 6 is about the time most people start to see improvement.. if he is seeing improvement there may not be any need to increase the dose at the moment and just wait to see how far improvements go at the current dose. The side effects can be rough on people but they get better as the body adjusts. And if the drug works it's a good one from what I've heard. Can be used long term and is much better than other drugs at this tier like methotrexate, acitretin or cyclopsorine.

Posted Fri 20 Apr 2018 13.40 by JuneK

He tried light treatment, and Acetretin , but no improvement, Then Cyclsporin was fantastic but was damaging his kidneys, so they made him stop abruptly and the psoriasis came back worse than ever. Now with Skilarence we have noticed a gradual improvement in recent weeks, He also has Enstilar for his hands, as they are the parts that bother him most psychologically . Other members say they take the full dose in one go , I may suggest that to him as a way of increasing his intake as he's down to 120mg when he should be on 360mg and 480mg from next week His next consultant appt. is 6 weeks away and we have a holiday in between then and now.

Posted Fri 20 Apr 2018 20.04 by Toodlesoodles

Light therapy never did anything for me either. Refused to try acitretin. Just finished on Skilarence.. unfortunately it didn't work for me. I also had zero side effects from it which I was obviously initially delighted about but now I'm thinking the side effects, although rough, are desirable as it shows the drug is being absorbed and working. On to methotrexate next I think. Does he make sure to always take the meds with a big meal? I've heard yoghurt helps a lot. If there are signs of improvement I'd urge you to encourage him to stick with it despite the side effects. He may achieve full clearance eventually and on a drug that can be taken long term provided blood tests remain good.

Posted Fri 20 Apr 2018 22.03 by JuneK

He can't try methotrexate as they say he has a fatty liver, he's been advised that the next step would be biologicals by injection . He's just had another hour of stomach cramps and is now totally wiped out. People have suggested buscopan, so will try that tomorrow , and if that doesn't help he says hes not taking anymore 😕 I'll try speak to his dermatologist too on monday.

Posted Sun 8 Jul 2018 21.28 by t1gger

Hi i am on week two with skilarence. First three days fatigue. Now on week two so took the tablet this morning for first time. Hot flushes etc and upset stomach. Lay in bed most of day. Took my tea time one and it was fine.

Posted Fri 20 Jul 2018 15.07 by Fletch
15yrs

Hi JuneK, sorry to hear about your husbands experience... im currently in the same boat. I was on 120mg Skilarence and did get bad stomach cramps (i honestly thought my appendix was bursting the first time!!!)... im meant to be upto 3x 120mg now, some days i do and other i take 2x 120mg.... I also get the kidney pains about once a week which are terrible, really painful and make me physically sick. I spoke to my derm nurse today who says i need to get a urine sample looked at.. Prior to this i self injected methotrexate but that made me really sick.... Hope he gets sorted soon! regards, David

Posted Tue 13 Nov 2018 07.55 by Moshdi
Psoriasis wearer 40+ yrs

Hi all, today I've taken decision to stop Skilarence as the side effects just too painful for me. I managed to get to the end of week 4 and my skin has improved dramatically, but the thought of continuing with the pains in my stomach, which reminds me of contractions, is just too much. I also suffered the face flushing, which I found also painful but could cope with. Going to email the dermatologist today to tell her my decision. First morning in 3 weeks waking up without the cramps. Looking forward, this drug not for me.

Posted Wed 6 Feb 2019 08.32 by alixlloydee

Hi all. I started Skilarence 2 weeks ago after almost of year on Methotrexate. Methotrexate was great, my psoriasis completely cleared and apart from the odd headache I managed to avoid any side effects; unfortunately my derm said it wasnt sustainable as it was interacting with my liver too much. So I started taking Skilarence 2 weeks ago, my derm doesnt follow the usual dosage approach and instead im still on 30mg a day - i go back this afternoon when he will decide whether to up it or not. The first week I didnt notice any side effects other than the odd cramping which wasnt too bad; however since Sunday Ive had intense flushing about 5 hours or so after taking the tablet and consistent stomach cramping, i was up most of the night last night and couldnt get any relief ive never felt cramping like it! Ive searched relentlessly to find people who have tried skilarence and there doesnt seem much out there - should I stick with the Skilarence and try and work through the side effects? Will the side effects ease? Im concerned that im experiencing such intense cramps on the lowest dose. Any advice would be great!

Posted Wed 6 Feb 2019 22.21 by Moshdi (edited Wed 6 Feb 2019 22.23 by Moshdi)
Psoriasis wearer 40+ yrs

Hi there, sorry you’ve started to get side affects. For me it was such a relief to come off this drug. The stomach pains were horrific and I knew I couldn’t continue. I spoke with the dermatologist who said I shouldn’t have struggled with side effects for as long as I did (just one month) and unfortunately this drug doesn’t suit everyone. I’m waiting for appointment to come through as being offered biologics now, had tests and X-ray last week. Wishing you well on your journey. Mo

Posted Sun 24 Mar 2019 22.18 by Anna1

Hi I have just started my 3rd week of skilarence and my psoriasis is already showing slight improvement plus I am not getting any side effects. I'm just worried it may not continue to work. I don't want the horrible effects but from what everyone is saying it seems you must have to get them. My dermatologist gave me a strong antihistamine and I'm wondering if that's why I'm not getting any.

Posted Fri 31 May 2019 23.21 by Julies39

I'm on week 4 of skilarence no signs of improvement..constantly have upset stomach but manageable. Just so upset no improvement. Anyone else had this slow response. Thanks

Posted Thu 6 Jun 2019 20.16 by JuneK

Hi all, it's been a while since I posted (over a year) my hubby is still taking Skilarence , he eventually got up to 4 a day, then a recent blood test said his white blood cell levels were high he was told to come down to 3 a day. Then another consultant said he could increase again to 4. So the stomach cramps started again when he went from 3 to 4 a day. His condition has improved bit it's seems to have reached a plateau now when there's no change. It is a lot better than it was and he sometimes can now were short sleeves , but the consultant is still referring him for biologicals / injections in the next few weeks. I'll keep you all posted how that goes.

Posted Thu 6 Jun 2019 20.20 by Julies39

Hi June I was on stelara and clear within weeks. Its fabulous. However my dermatologist because I got diagnosed with breast cancer said to come off it..I'm on week 4 of skilarence and no change to skin. Constantly got a bad stomach. When did your husband see a change. I start the strong strength next week. I'm dreading it. Thanks julie

Posted Thu 6 Jun 2019 20.50 by JuneK

Hi Julie, I'm sorry to hear you have been diagnosed with breast cancer, I hope they are taking really good care of you. My hubby had great results first of all with Cyclosporin but it was too damaging to his kidneys. That was really fast acting too, but the condition came back quickly after stopping them. With the Skilarence it took about 6 weeks to see another improvement. He is a million times better than without treatment but it just seems stubborn now and won't improve any further . The stomach cramps were debilitating but he just got used to it after a while and now realised he doesn't get them as much . He's currently taking 4 x 120mg tablets a day.

Posted Thu 6 Jun 2019 21.10 by Julies39

Yes June I'm ok and all clear of any cancer had awesome treatment...my skin and menopause depression is the hardest. I'm dreading starting the 120mg next week but if it gets me clear I'll plod on..cyclosporin was also amazing but my blood pressure went through the roof that's when I went on stelara.. not one flake for 7 years it was a dream..dreading the summer being covered up it's so soul destroying

Posted Thu 6 Jun 2019 21.15 by JuneK

Great news that you fought and won one battle...just a few more to go. I forgot to mention the hot flashes with Skilarence , The way my hubby described them was exactly the same as I experienced with the menopausal flashes, so I imagine you won't know the difference if and when they happen :( ... good luck !!!!!

Posted Thu 20 Jun 2019 12.59 by gemhud1

Hello All, I've been on Skilarence for a year and I find it to be a miracle drug. Yes, the first 3 months of it are brutal. Hot flushes lasting hours, stomach cramps, extreme diarrhoea multiple times a day. But, when you get to week 6 and your psoriasis starts to retreat, it makes it all worthwhile! After being on it for a year I still get the odd hot flush and rush to the toilet a couple of times a week, but the side effects are minimal in comparison to the start. If you can hang in with it for four months you will be over the worst of it and know if you can cope. I was on Fumaderm for 3 years which is a very similar drug and after all that time the side effects dropped to every couple of weeks. After a year of Skilarence I have about 3% coverage of psoriasis on my body and feel very positive. Amazing seeing as this time last year I was at 90% coverage and in a very dark place in my mind. Good luck with your treatments everyone!

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