Ciclosporin

Posted Fri 21 Dec 2018 9.33pm by Welshsha (edited Sat 22 Dec 2018 7.29pm by Welshsha)

Evening all,

My skin is suffering from a major flare up, I have psoriasis on my legs arms back tummy and hands and feet.

Never had p on my hands and i am so concious of it.

The psoriasis got worse when I was admitted in hosptial in April with gall stones , and was diagnosed with inflammation of the stomach, had jaundice and had mri scan and they have found two cysts on my liver and a tumour on my adrenal gland(which is not cancerous) but am.under going test to check it's not active.

Eventually had my gall bladder and stones removed in July, but had complications a week after surgery, I had heamatoma infection which erupted and had surgery to drain and remove infected area, leaving me with open wound for 9 weeks and it was only three weeks ago the final scab disappeared.

I'm at my wits end as coal take doesn't work any more, doctor prescribed enstilar spray, zero base and not bloody improving.

I went to see derm last week had a melt down and been prescribed

Ciclosporin, was unsure whether to start it as of side effects but this week started taking tablets I'm not expecting a quick fix but any idea when I would notice any improvement ,I need something something to ease my mind.

So sorry for the saga story but I have had enuf.

Posted Sat 22 Dec 2018 0.35am by wendyloish

Hi Welshsha,

I feel for you. I remember my problems before my gall bladder was removed. That was only a few years ago. But some time ago I had a tumour on my thyroid and now have Hashimoto's throiditis. My heart enlarged and I got atypical angina. I have a raft of other problems all of them relating to general autoimmune attack and resulting inflammation. You might be having the same sort of generalised attack.

I think you may be lucky, with access to a rheumatologist. That might be a better specialist, rather than a dermatologist. If I were you, I would go ask my GP that question, before I settled for the ciclosporin. Have a look at the "Psoriasis ans Treatments" section of this website, and you will see what other options besides ciclosporin may be open to you. The immune suppressor you have been prescribed may or may not have side effects for you.

I hope this has been helpful

wendyloish

Posted Sat 22 Dec 2018 0.55am by pdr321
A long sufferer of plaque psoriasis who found an effective treatment after 27 years (blueberries). I have now been clear for over 2 years.

Hi Welshsha,

I am not a fan of ciclosporin, having taken it on three occasions in my life, gradually it lost its efficacy anyway. If you are only taking it for psoriasis then I suggest that you immediately stop using it and add blueberries to your diet instead. I have done exactly this and have now been clear for more than 2 years. Previously I was a mess, covered in psoriasis, bleeding and miserable, now I am a new man. My forum on the subject has had many positive results, with more than 20 people reporting benefit. Eat 15 to 20 a day for a month, as bought from the supermarket, you should see benefit by then. Don't mix this with taking ciclosporin at the same time. I guess this sounds too easy when it is first explained, it has been nothing short of a miracle for myself and some others.

Good luck, Phil

Posted Sat 22 Dec 2018 7.27pm by Welshsha (edited Sat 22 Dec 2018 10.05pm by Welshsha)

Thank you for reply Wendy and Phil very much appreciate it.

I had tried Methotrexate , orally and injection but it made me so Ill, I felt I was hit by a bus each time I injected myself.

Also had tried Acitretin which raised my liver count so high I had to stop.

Coal tar was my best friend worked a treat. Now its stopped.

alphosyl was the best cream.i have ever used worked wonders and then it was discontinued

I have not taken my second dose of

Ciclosporin tonight.

Going to go try the blue berry theory .

Had some today to try and it's disgusting but willing to try anything other than meds.

Have my blueberrie ready for work 😁

I bathe in dead sea salts , lucky my p isn't flaky as I moisturize alot

So fingers crossed Phil I get same results as yourself.

Have a lovely Christmas both and thanku again

Big love

Sharon

Posted Sun 30 Dec 2018 7.06pm by Welshsha

Hiya Phil

I came off Ciclosporin, had only been taking a few days anyway and felt my hands where hot , but after reading your blueberries method. I have been giving this a try.

For a week now been taking them, as well as my vitamns and cod liver oil and moisturizing, noticed top of my arms there is a slight improvement but hands are still bad.

Blueberries I eat about 20 a day.

Had a flare up the other day in work which was disheartening. But I blame the air con I work.. is there anything else u can advise me plz.

I do believe my operation is the main reason for my flare up bit that was 5 months ago, but it took 9 weeks for wound to close up.

Sick of living in this skin😪😪

Posted Sun 30 Dec 2018 11.04pm by wendyloish

Hi Sharon,

I think perhaps it is possible you are expecting too much from simply eating blueberries. They are effective in that they contain polyphenols, which are antiinflammatory. If your only immune problem was psoriasis the blueberries might indeed be sufficient to help. But you have described problems with your immune system that go a long way beyond simply impacting your skin. Your digestive system (stomach, gall bladder), your liver, your endocrine system are all under stress. I think also you are depressed, suggesting that your brain is being impacted as well.

There are other medications you could try, which might be more suitable to you than the ciclosporin.

And if you are interested in the whole body approach that blueberries represents, perhaps it might be a good idea to try eliminating inflammation causing foods from your diet, rather than just taking blueberries to dampen down the impact of the inflammation once it it already there. As a first step, try cutting out gluten, lactose and high fructose foods (like apples and stone fruit) and see if that helps.

I would urge you to go back to your GP. He/she might be able to find something that will suit you in the way of lifestyle changes and/or medications that will fix your problems.

Good luck, and hang in there!

wendyloish

Posted Mon 31 Dec 2018 0.02am by Welshsha

Thank you. For reply Wendy.

This last year been a.nightmare as at first I didn't know it was gallstones, I thought it was anxiety ..

Unfortunately psoriasis is heredity, my. Mother and my siblings have it

too.

My mother is a celiac so Is living on gluten free diet and still has p.

Not just eating blueberries, or.expecting a miracle.to happen straight away but trying something that has been successful for others is worth a try.

Dead sea salts moisturing vitamns , vitamn d( on this for life from gp)

Had p.since I was 22 and was.clear for a period of time and this gall bladder took it's toll.

I am.wary off pumping more chemicals into my.body that may cause more damage,

Tried all the creams and like.i said previously alphoysol was the best cream.i ever used and it's discontinued.

Posted Mon 31 Dec 2018 1.32am by wendyloish

Hi Sharon,

Yes I know about the hereditary factors, as they run through my family as well. But you can't do much about that side of things, that is why I try to concentrate on what I can change. I never knew I had a gall bladder problem until I woke up at 2am one day, and was in excruciating pain. When I lay on my left side I vomited, but on my right side was OK. I waited until 6am before calling an ambulance. Had to have my gall bladder removed within weeks. Priority one. The surgeon said it was terribly infected, but I have come to realise since then that there was no source of infection, and what he really meant was that the gall bladder was terribly inflamed. You see, inflammation is normally taken to be a response to infection. But for me it was an autoimmune response.

Getting back to your problems, I think the celiac connection may be important to you. Some of the research I have done on line has suggested to me that gluten sensitivity may play a part in my problems. I have a cousin with celiac disease as well, not as close a connection as yours, but still possibly connected.

I think that if you have gluten sensitivity, you may develop lactose intolerance as a secondary problem. There has been some supporting research done in this area. And if you read some of my other posts you will see that I have concluded that sugar, and especially fructose, is part of the problem.

it is a hard thing to give up so many pleasurable and apparently health giving foods, but if you do, you may find like I did that the quality of your life will improve so much, that you will be able to stick to it.

I am happy that you are already thinking along the lines of vitamin D, as I have come to the conclusion that is important.

I still, after 9 months on my diet, have some spots of psoriasis. My skin was among the first things to indicate autoimmune problems, and it seems it will be the last to get fully under control. But the level of psoriasis is bearable. Mostly it hangs around my ears, but for the last month or so it has been on my face. Fortunately I am so old now (72) I really have got past the vanity part of my life. I am treating my face with topical ointment and cleansing it with a coal tar shampoo, followed by sorbelene with tea tree oil. This keeps the bacteria at bay. So, I am not cured. But all my other symptoms, like pain and stiffness (psoriatic arthritis and spondilitis) are under control.

wendyloish

Posted Tue 8 Jan 2019 9.32pm by Dolly123

I know it's a big step going on cicosporin but I would really have a think before you quit it completely. I've have psoriasis since I was a young teenager, And it completely ruled my life and it still does to this day. Personally I would not give up my medication for blueberries... But that's just my opinion I have came so far I've had light treatment and tried other tablets like skillerance but had an allergic reaction I've now been put on ciclosporin and havnt been taking it for very long an my skin is less red it feels so much smoother when out the bath (my legs actually feel the most normal they have felt In years) and I haven't had anymore new patches come up. I'm not getting my hopes up but so far so good.

Posted Wed 9 Jan 2019 9.08pm by Shaun

This treatment is the wonder drug. The treatment slows the white cell reproduction down and you should be clear in around 3 to 4 weeks if you are on the right dosage

Posted Wed 9 Jan 2019 10.45pm by Welshsha

Hiya Shaun

Thanku for ur reply I am apprehensive about talking this drug, esp with all the side effects,

I did take for 5 days and had hot hands and head aches . So came off, I am trying this blue Berry method at the moment, It may work or may not.

I take my vitamns and cod liver oil every day and Hoping on some improvement.

I am undergoing tests atm and need to know that the tumour they found on my adernal gland is not active, if all clear then I will probably start this medication.

After the year I have had Shaun I can't risk any more ill health,

Need to change my mind set and be more positive about my skin than getting more stressed and upset of every new patch.

Posted Sat 12 Jan 2019 11.26pm by Dolly123

Hiya can anyone tell me how quickly there Psoriasis went completely on ciclosporin? All the bumps and scales have completely gone and all my skin feels so smooth my arms are nearly clear but i do have some red marks where the poarasis has been still left on my legs and hands an feet will theses disappear quite quickly? Thank you

Posted Thu 17 Jan 2019 10.15pm by Elaine1

Hiya

I have had psoriasis for forty years, l have tried every cream and lotion going. I was hospitalised for coal tar treatment. I have also tried the puva light, ciclosporin and methotrexate.

Ciclosporin and methotrexate really helped and l had no side effects but after some time my psoriasis flared up again.

Eight years ago l started the injection Humira and now for seven years l have been completely clear. I have regular check ups at the hospital and have had no side effects.

I know feel like l have never had psoriasis, no more covering up and covering myself in lotions and creams!!

Elaine ☺

Posted Thu 17 Jan 2019 10.57pm by Welshsha

Hiya Elaine

I seen my derm last week had a complete melt down about the spread of the dreaded p,

He understood why I am cautious of talking Ciclosporin at this present time.,

Once my test results come back about my tumour on my adrenal gland and it's all ok I will start Ciclosporin. Derm has told me.oral meds.or injection is the way forward for me.

Derm has put me back on coal tar for the time being and it's been a week and there is a slight improvement . Been using on a daily basis.

Trauma has brought on this episode of p all over my body , hopefully it will start calming down.

Ain't holding my breath tho

Posted Fri 18 Jan 2019 2.19pm by Elaine1

The one drug that does work to completely clear up psoriasis is Humira.

I really think all the creams, lotions, tar and medications they offer help soothe the condition but never clear it.

I had been under dermatology for years and had never heard of Humira.

It was through a tv programme l heard about it.

Then after some time and persistent l was given Humira. Unfortunately it all comes down to cost. ☺

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