Help needed for Ciclosporin
Posted Mon 9 Mar 2020 21.25 by DodgeWC51
Yes. It's Adulimumab trade name Humira. The MAB on the end is the important bit. It stands for Mono Clonal Antiboby. It is not a chemical drug as such, it uses an antibody , which is produced by the immune system to block the factor causing Psorasis. There is a lot of good info on line , it is a complex subject. You need to find out exctaly which one your Dermitologist is proposing.. Having read all I could find on the subject, I was wary to start with, but now very happy bunny. It works it's easy no side effects and no worry about dosing every 12 hours.
Posted Mon 9 Mar 2020 22.05 by Bethkin
They want to start me on apremilast?
However I haven’t heard anything in like 4 weeks now and they said it would be delivered so I’m a little worried?
Posted Tue 10 Mar 2020 05.23 by DodgeWC51
Jsut doing a quick check, but that is an oral medicine, . I'd phone the consultants secratary.
The Britsh Association of Dermatology web site is a mine of good info. http://www.bad.org.uk/
Posted Tue 10 Mar 2020 08.27 by JH2020
I’m now in day 4 of taking cyclosprin. Is it normal for the condition to worsen in the first few days? I have a new rash which has taken over all of my neck, rash around my eyes, swollen eyes, skin peeling on feet and hands. I am of work for two weeks so I’m desperate to see some improvements by the time I have to go back, they way I am now I can’t see me going back to work. The pain and discomfort is unbearable...
Posted Tue 10 Mar 2020 09.43 by Bethkin
I’m so sorry to hear that JH! I no it can be awful! Tbh with u mine started to clear up within a few days :/ but now it’s not as effective to me anymore hence why I’m changing over? It did make me feel awful like I felt sick a lot and shaky and dizzy but that soon got better. Maybe try and contact your consultant if it’s not better within the week and discuss this with them? Sometimes ciclosporin isn’t for everyone and with our skin conditions it’s abit of trial and error!
Let us no how you get on ;)
Posted Tue 10 Mar 2020 10.00 by JH2020
Thank you. I am seeing the dermatologist on Thursday so I’ll see what she says.
I’ve had no other side effects with it so far just not seeing any results yet which is frustrating but trying to keep positive.
Posted Tue 10 Mar 2020 21.00 by DodgeWC51
Hi mate. Two weeks , you would be lucky to see any change. Be prepared for months. Anti histamines will help the itching, and emollient bath or shower gels , such as E45. Though own brand baby wash works just as well and a lot cheapear. You my well end up with a sore throat. I used dilute TCP as a gargle mouth wash, or ask your GP for something. If you had Cancer would you be in such a hurry?
Take the matter seriously! You have a life threatening condition that will not go away. The Cyclosporin will work, but it's going to take time. Most of us were on it for around a year to eighteen months., and it feels like forever. Frustration is normal At 80 % Erythroderma, be thankful you didn't end in a hospital bed. You must have convinced your Consultant that are a sensible and level headed and WILL follow the treatment routine. If you are a unioun member , at work get in touch with the shop steward and talk to him, be preapred to be off a lot longer than two weeks. We all know the frustration, we have all been there , taken the pills and chewed holes in the tee shirt. Its a long haul, but you will get it under control!
Posted Tue 17 Mar 2020 19.52 by JH2020
started cyclosporin about a week and half ago. I’ve seen much less scaly skin, the pain has only lessened in the last 2/3 days. Last week I was still in agony. My body is still very red and I’m now going into the hospital daily to have BETNOVATE 1.0 ointments smothered over me.
Not seen any side affects expect the odd feeling of nausea from time to time.
Slightly concerned about going to the hospital every day being on An immunosuppressant however...
Posted Tue 17 Mar 2020 20.58 by DodgeWC51
The nausea is very common. You may feel odd tingles as well. It will still take another 3 weeks or so before the Cyclosporin really gets to work, then it's amazing . You do need to time the doses quite accuratley. Miss a dose by an hour or so and you will feel nauseasious. If your going out make sure you have the next dose with you. The other drag is blood tests. I thought about going down the local plumbers and getting a tap fitted to my arm. But you know you are being cared for.
The immunosupressant side, is a worry at the moment. We are all in that particular boat. Just wash hands , and be sensible. You will almost definitley get a sore throst and cough, it's Cyclosporin's trade mark. I found gargalling with diliute TCP soothed it, tastes foul, but hey! No germ virus or any othe living thing can survive it. A packet of throat lozenges is also useful to keep with you. Most importantly you are getting back in control of skin. Dear old Betnovate, my Mother had Psorasis, back in the 1960's that and coal tar was all they had. You may not think it now, but you can get completly cleared of any visible signs.
Posted Wed 18 Mar 2020 10.03 by Bethkin
Hey again JH and dodge ;)
Yes stick wit it JH so glad you’ve found some relief and the sickness will subside after a while! I remember my first week I was so dizzy and nauseas from it and I got aches in my legs and everything but just persevere with it!
My consultant rang me yesterday and told me I need to isolate for 12 weeks because my immune system is compromised? However I do still need to go for blood tests and things? it just means to spend the majority of my time at home! Luckily I can work from home which is a bonus!
Hope you all keep safe and well with everything going on!! Xx
Posted Wed 18 Mar 2020 10.40 by DodgeWC51
Hey Bethkin, all right for some! A 20second commute. :-) Be a bit difficult for me as I drive a bus. Though mostly singing to my self to stay awake at the moment, very few people about. Bluewater shoping Extrvaganza, the biggest in Europe. Car parks only about 1/3 full. One thing the Royal Navy used to do if there was an infection aboard ship was compulsory gargle with an antiseptic mouthwash twice a day. Always worked. So that's what I'm doing.
Keep safe all.
Posted Wed 18 Mar 2020 10.46 by Bethkin
You say that dodge but I would do anything to get out the house already lol! I’m a nurse so they didn’t want to risk it at all! I feel like I’m betraying the NhS in their hour of need and feel so guilty for it! But I suppose I need to put myself first for a change!
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Posted Wed 18 Mar 2020 11.37 by DodgeWC51
Look at it this way. Not only would you be out of action, but how many would you spread it to? I know it's frustrating to have to sit on your hands, but there is nothing to be guilty about. You are taking a proffesional descion.
Posted Thu 23 Apr 2020 17.12 by JH2020
Just thought I’d update everyone. Been on Ciclosporin for around 7 weeks and have seen a really huge improvement in my skin. I’ve had routine bloods and the consultants have been happy with the results. I have recently been checking blood pressure at home as requested by the consultant and it has been raised for the last few days or so it’s In the hypertension stage 1 area. Has anyone else experienced this? I am going to call the hospital tomorrow to get their advice.
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Posted Thu 23 Apr 2020 19.32 by Heidiloobylou75
Ohhhh amazing drug. But made me feel light headed and general fatigued. Now on apremilast and disappointing, can’t change now as of covid 19
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Posted Thu 23 Apr 2020 20.26 by DodgeWC51
Cyclosporin is a remarkable drug, those of us of Certain Age, remember Christian Barnard doing the first heart transplant, the patient lasted about six weeks before rejection. It wa sthe invention of Cyclosporin in the 1970's that made routine transplants possible.
Drawbacks, it made my fingers and lips tingle, and my sense of taste ended up quite bizzare. Good points! It controlled the Erythroderma, and that could have killed me. Seven weeks is not long , that you're showing improvment is great, but it is only a start. There is a regime of tretaments, which your Dermatologist will explain to you, the down side is they take a Looong time. Currently your body is at war with itself, and both sides are kicking hell out of you. It gets better, Though I would be lying if I said I was sorry to come off Cyclosporin. Drink plenty and keep the dose timing regular, I found if I missed the timing by an hour or so it made me feel quite woozy. The easy thing to say, and the hardest thing to do, blood pressure varies all over the place with all sorts of things, one of the best controls, don't worry about it. Talk to your Doctor, there is a lot of knowledge about management of side effects they will be able to help you. You can always blow of steam here, we all understand.
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Posted Thu 23 Apr 2020 20.49 by JH2020
Thanks yes it really is an unbelievable change. Regarding the blood pressure my diet has been pretty bad so It’s probably more to do with that than the drug. Doing more exercise now and will try to cut down sugar.
Not experience any side affects at all. I missed a dose by 5 hours once and I could see my body flaring even In that short time. It’s working wonders
Posted Thu 23 Apr 2020 23.04 by Bethkin
I loved the ciclosporin! I would do anything to go back to that but uNfortunately after 2 1/2 years of being on it (which isn’t usually recommended apparently) my kidneys started playing up and no longer like it! Now I am in constant battle with my psorisis!
I tried methotrexate but wasn’t working and I was getting really bad nausea and cysts all over my face. Now I’m on apremilast... been on it for five weeks and the side effects are horrendous but it’s my last option before being sent to biologics!
Constant nausea, headaches, diahorrea, sickness I’ve lost half a stone since being on it! I’ve been getting restless legs too but apparently that’s not a side effect? Fatigue daily wanting to take naps which isn’t like me at all!
How are u finding it Heidi? And how long have u been on it? Every post on here regarding apremilast nobody has got back to me on si would be great to chat to someone that’s been on it!
On the other hand I’m glad it’s working for u JH!! keep at it!! :)
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Posted Fri 24 Apr 2020 05.21 by DodgeWC51
The boilogics are the last one on the list, not least as they are around £9,500 a year. I'm now on Adulimumab, Humira, It is brilliant!!! The intial loading dose is three jabs over a fortnight, then one a fortmight. You are shown how to inject yourself, simple and totally efective. The patient notes are intially scary, but as my Consultant said , they are written for lawyers . Practically biologics are easy to use and no side effects, I'm now 100% clear.
Posted Fri 24 Apr 2020 08.11 by Heidiloobylou75
Bethkin
Well I’m not that pleased actually, the apremilast ain’t working I don’t think. I’ve new breakouts which dermatologist said can’t happen. But it is. Was working then not. Strange. I’d be interested in the biologics, what does that entail?
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