I want to delete me from here, how please?

Hi everyone, I'm Flynny and a sufferer for over 20 years. However, I'm now using a new drug not licenced in the UK called Fumaderm or Fumeric Acid. It's working!!! Really working.

Thanks again Micky made it sticky

What is Acitretin and how does it work?

Acitretin (Neotigason) is a member of a group of drugs called retinoids, closely related to Vitamin A.
It works by slowing down cell reproduction in the skin.


What conditions are treated with Acitretin?

Acitretin is licesed for and most commonly used for treating Psoriasis.
Your Dermatologist may also use it for treating other skin conditions, including:
lichen planus, lupus erythethematosus, ichthyosis & Darier's disease.


Will Acitretin cure my skin condition?

Acitretin is not a cure for these conditions, and when the medication is stopped, the condition is likely to return.
However, most patients will see a gradual improvement of their skin, starting about 2 weeks after treatment commences and continuing for up to 12 weeks.
This improvement should then remain while continuing the treatment.


What dose should I take?

The dose will be dependant on body weight and the type of skin condition you are being treated for.
Acitretin capsules come in 10 & 25mg strengths with most patients taking between 10 & 50mg daily.
It is not advised to take more than 75mg daily.


What time of day should I take Acitretin?

Acitretin is best absorbed into the body alongside fats.
Therefore, it is best taken after a meal.


When should you not take Acitretin?

If a woman becomes pregnant while taking Acitretin it is highly likely that the unborn baby will be damaged by the medication.
Because of this, it is not normally given to women of child bearing age.
Women who have taken Acitretin should wait at least 3 YEARS before attempting to conceive.
Men taking Acitretin can father children with no additional risk.
It is also recommended that patients taking Acitretin DO NOT donate blood after stopping treatment for at least 1 year, and certainly not while on the treatment.
This precaution is taken in case the donated blood is given to a pregnant woman.

If you have had problems with your liver, kidneys or suffer from high cholesterol or diabetes, you should speak with your health professional prior to treatment.



What are the common side effects?

In general the side effects are mild and settle when the dosage is reduced.
An initial worsening of Psoriasis may be seen when the drug is first taken.

High doses may cause dryness of the skin, lips, nostrils & eyes.
The skin may also peel and become fragile.
It is recommended to use a regular moisturiser and lip salve.
There is an increased risk of sunburn and you should use a regular sunscreen.
An increased risk of skin infections is seen if the skin becomes dry and cracked.
Nose bleeds can occur if the inside of the nose becomes dry and cracked.



What are the rare side effects?

Although rare, more serious side effects may be observed, these include:

Increased pressure on the brainmay result in headaches and visual imparement.

Muscles and joints may ache after excercise.

Hair loss and/or thinning may occur.

Increased fat levels in the blood and inflamation of the liver can occur, these symptoms should be closely monitored with regular blood tests.

There may also be a link between Acitretin and mood change, although this remains unproven.

Prolonged use may affect the bones and it may be the case that X-rays will be taken to monitor this.



How will I be monitored for side effects?

Prior to treatment and at regular intervals during medication, your doctor will organise blood tests.
You should be monitored at regular intervals.



May I take alcohol while on Acitretin?

Yes, but with strict limits.

For example:

Keep to less than 1 large (250ml) glass of wine or
1 pint of premium beer (5%) DAILY
These amounts for women should be reduced by 30%


Can I take other medicines while taking Acitretin?

Many drugs can be taken with Acitretin but some but some may interact.
It is very important that you tell your doctor & pharmacist that you are taking Acitretin, this applies before taking any other mebication including over-the-counter medication.

Drugs that may interact with Acitretin include:

Vitamin A: doses above the recommended daily allowance should be avoided

Mini-Pill: Progestin only pill

Antibiotics: Tetracyclines

Methotrexate

Antifungals: Ketoconazole

Anticonvulsants: Carbamazepine

Anticoagulants: Warfarin


This is by no means an exhaustive list and you should always consult your healthcare professional.



Information sourced from the British Association of Dermatologists.

Thanks for this thread Micky, I will make it a sticky thread so people will always be able to find it.

What is Ciclosporine and how does it work?

Like Penicillin, Ciclosporine was discovered as a substance produced by fungi.
It was found to suppress the immune system and was developed for suppressing the immune system of transplant patients to prevent them rejecting their transplanted organs.
It was subsequently found to benefit patients with a range of diseases and conditions caused by immune reactions.


Why suppress the immune system?

There are several reasons:

In "auto-immune" diseases, the immune system attacks the body itself.
These diseases can affect just one organ - such as the heart, liver or skin - or a number of organs.

There also diseases in which the body's immune system becomes over active, letting a disease persist or even get worse.
Suppressing the immune system can then be helpful.

After transplant surgery, the immune systemhas to be suppressed to stop the transplanted organ being rejected. Most patients who have had a kidney or heart transplant take Ciclosporine as part of the combination of drugs used to suppress their immune system.


Which skin conditions are treated with Ciclosporine?

Ciclosporine is prescribed for conditions in which the immune system is to active.
It is only licensed to treat Psoriasis & Eczema (UK, could vary with country).
However, drugs are often used for conditions not included in the original license application.
In the case of Ciclosporine, these include bullous pemphigoid, pyoderma, gangrenosum, chronic actinic dermatitis and cutaneous vasculitis.


Will Ciclosporine cure my skin condition?

None of the skin conditions for which Ciclosporine is used are "cured" by this treatment.
Usually, a gradual improvement is seen, starting in the first few weeks of treatment, and then Ciclosporine will be continued to keep the skin problem under control.


What dose should I take?

Your Doctor/Consultant will advise you here, as the dose prescribed depends partly on your body weight.
Ciclosporine is usually taken in capsule form twice daily.
The capsules are available in 4 strengths: 10, 25, 50 or 100mg.
Ciclosporine is also available as a liquid.
The total dose taken is usually within the range of 2-5mg per kilo of body weight per day.

NB: Grapefruit or grapefruit juice should not be taken for an hour each side of the dose, as it grossly affects absorbtion rate.

Also note that different makes of Ciclosporine can be absorbed differently by the body, so it is recommended to always use the same medication from the same source. If you change medication however, then it is possible that you will need to have a Ciclosporine level blood test performed.


What are the possible side effects of Ciclosporine?

In some people Ciclosporine can cause sickness (nausea), diarrhoea, gum overgrowth, tiredness and excessive hair growth. It can also produce a mild tremor.
Sometimes a mild burning sensation of the hands and feet can occur in early treatment.
If Ciclosporine is used in a high dose it can affect the liver.
The side effects tend to be reduced or get better if the dose is reduced.


Are there any long term side effects of Ciclosporine?

The long term side effects include reduced function of the kidneys and raised blood pressure.
If you suffer consistently with high blood pressure, you will probably not be considered for this treatment.
The dose of Ciclosporine has to be reduced or stopped if there is a significant rise in blood pressure or effects on the kidney function.
Provided the treatment is closely monitered and appropriate adjustments are made the side effects can be reversed.
Ciclosporine can also cause increased levels of lipidsin the blood (ie: cholesterol).

Taking Ciclosporine for a number of years increases your risk of getting some types of Cancer.
This includes skin cancer, and patients should limit their sun exposure.
If you are concerned about this, you should consult with your health professional.


How will I be monitered for side effects?

As Ciclosporine can have adverse effects on the kidneys & blood pressure, your doctor will arrange for you to have regular tests of blood & urine, and checks on your blood pressure.
These tests will at first be frequent, then less often once the dose has been stabilised.
You may be asked to keep a record of your treatment in a log along with your test results. Take this with you on any follow up appointments.

You must not take Ciclosporine unless you are being closely monitored.


Does Ciclosporine effect fertility or pregnancy?

It is best not to take Ciclosporine when pregnant, however it is possible.
If you are planning a family, or if you become pregnant during treatment, you should consult your health professional asap.
You should not breast feed while taking Ciclosporine.

May I drink alcohol while on Ciclosporine?

There is no evidence or reason for you to avoid alcohol while taking Ciclosporine.


Can I take other medicines while taking Ciclosporine?

Ciclosporine may be prescribed in combination with other drugs.
However, some other drugs interact with it and you should always tell any doctor treating you that you are taking Ciclosporine.
You should not take over-the-counter medications without discussing this first with your doctor or pharmacist.
However, there are many drugs that can be taken with Ciclosporine.

Drugs that may interact with Ciclosporine include:

Aspirin & non-steroidal anti-inflammatory drugs (NSAIDs) ie: ibrufen & diclofenac

Antibiotics:  erythromycin, clarithromicin, trimethoprim, ciprofloxacin, rimfampicin,
                 doxycycline.

Antifungals:  fluconazole, itraconazole, ketoconazole & amphotericin.

Blood pressure treatments:  ACE inhibitors, beta-blockers & calcium channel blockers.

Hormones:  oral contraceptives & corticosteroids.

Digoxin

This is not by any means an exhaustive list and you should always inform any relevant health professionals that you are taking Ciclosporine.


Can I have immunisation injections while taking Ciclosporine?

You should avoid immunisation injections with any LIVE vaccines, such as Polio & Rubella (German measles).
Flu injections & Pneumovax are safe and recommended.


Where can I find out more about Ciclosporine?

If you would like to find out more about Ciclosporine, or have any concerns during or prior to treatment, your first point of contact should be your healthcare professional or pharmacist.

Any individual case can be different and this information is just a guide for anyone wanting to know the basics of Ciclosporine.




Information sourced from British Association of Dermatologists.

It's often mentioned that being overweight is not good for psoriasis, and I must admit I do agree. My dermatologist told me to try and lose some weight, and although I have only managed to lose 5 Kg I do believe it's helped a little. The problem is with me I just cant keep it up, I'm at the age now where I'm thinking life is to short to worry about it. I'm now doing a 5 Km reasonably fast walk every day and that's as far as I'm prepared to go.

Anyway back to the study from Dr. Peter Jensen, of the Copenhagen University Hospital Gentofte, and colleagues.

Importance:
Psoriasis is associated with adiposity and weight gain increases the severity of psoriasis and the risk of incident psoriasis. Therefore, we aimed to measure the effect of weight reduction on the severity of psoriasis in obese patients with psoriasis.

Objective:
To assess the effect of weight reduction on the severity of psoriasis in overweight patients.

Design:
Sixty obese patients with psoriasis from our dermatology outpatient clinic were enrolled in a prospective randomized clinical trial in which they were allocated to a control group or an intervention group.

Setting:
University hospital outpatient dermatology clinic.

Participants:
We included 60 of 69 eligible overweight patients with psoriasis (body mass index [calculated as weight in kilograms divided by height in meters squared], 27-40; aged 25-71 years).

Interventions:
The intervention group received a low-energy diet (LED) (800-1000 kcal/d) for 8 weeks to induce weight loss, followed by 8 weeks of reintroduction of normal food intake, reaching 1200 kcal/d. The control group was instructed to continue eating ordinary healthy foods.

Main Outcomes and Measures:
Psoriasis Area and Severity Index (PASI) after 16 weeks, with Dermatology Life Quality Index (DLQI) as a secondary end point.

Results:
The median PASI for all patients was 5.4 (interquartile range, 3.8-7.6) at baseline. At week 16, the mean body weight loss was 15.4 kg (95% CI, 12.3-18.5 kg; P < .001) greater in the intervention group than in the control group. The corresponding mean differences in PASI and DLQI, also in favor of the LED group, were −2.0 (95% CI, 4.1 to −0.1; P = .06) and −2.0 (95% CI, −3.6 to −0.3; P = .02), respectively.

Conclusions and Relevance:
Treatment with an LED showed a trend in favor of clinically important PASI improvement and a significant reduction in DLQI in overweight patients with psoriasis.

Source: NO LINKS ALLOWED

Hi everyone, I went to the hospital today for my first appointment in 6 month's.
I was previously on MTX and had major problems after having a course of Malaria tablets.
I am now being given the option of going back on the MTX, or go on to Ciclosporin or even Acitretin....?????
Can anyone give me any info on the latter two, as the info I have is very basic?
Many thanks in advance
Regards
Micky.

Hi Everyone,
I live in Andover, Hampshire in the UK. I have had Psoriasis since around 2002 and over the years it has steadily worsened and I may be getting psoriatic arthropathy  (arthritis) in my joints just to make things worse!!
I currently have a moderate amount on the usual places and torso/back and it has been bugging me for a while now (about 2 years since I was last clear)
I had a bad flare up in 2008 and was covered in P, but it cleared up nicely after spending 6 weeks sunbathing for about 15 minutes each day (I was in the Army in Afghanistan) after which I was mostly clear.
I have tried all the creams and ointments and none of them do any good for me. I want to try some UVB treatment but the NHS doctors are rubbish and aren't interested so I was wondering if anyone had any knowledge or experience of a commercially purchased UVB lamp and how expensive/effective they are?
Any information would be great as I am seriously thinking of spending some money on one soon.
Rob

Just found this site and am so thrilled! I feel so alone since developing this horrible skin disease/rash called psoriasis/eczema?? It just started about a year or two ago and is slowly getting worse...I have been to three or four doctors who keep giving me different creams to try but all of them only made it worse. Now I'm just trying to make my own and trying different combinations of herbs, etc. I feel so alone in this whole thing and from seeing some pics online it has me really scared so...glad to make friends with others who are also suffering with this.

Hi all
I have seen a few forums, I think this is the most fun!!!!
My name is Sylvia and this is my first time posting on this forum.
I have had psoriasis since I remember it, it starts from my scalp and it goes down to my belly. I learned how to somehow live with it, but during winter it can get very bad. Indeed the most that helps me is sun.
I have just given the opportunity to try a new natural treatment, and I will tell you more once I will get to the end (still a couple of weeks)... it seems to be good, but I still want to see whether it satisfies all the promises... hey, keep your fingers crossed for me please!
Talk to you soon! And enjoy another great day
Sylvia

When I was 15 I had my first significant psoriasis outbreak. I was away from home for the summer so I went to a doctor I'd not seen before. He prescribed some sort of cream for me. It didn't come in a tube but in a 4oz white container with a screw on/off lid. It was was the consistency of hand lotion, quite runny, and was a whitish colour with a greenish/yellowish tint. I was instructed to apply it twice a day and it worked amazingly well and years went by before I had another outbreak. I have no idea what it was. it was so long ago that I have no way of finding the doctor (long retired) and asking him. I've tried many things since and nothing has been as effective as this medication was. I suspect it was not a steroid as the use instructions had none of the usual warnings that come with the corticosteroids medications, but I could be wrong.

If this description rings a bell with any of you please let me know what you think it might have been.

Thanks

duaneaise@gmail.com

The secrets of the itch have been discovered by scientists at the National Institutes of Health and hope one day to be able to turn off chronic itch without causing unwanted side effects.

Quote:

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Scientists at the National Institutes of Health report they have discovered in mouse studies that a small molecule released in the spinal cord triggers a process that is later experienced in the brain as the sensation of itch.

The small molecule, called natriuretic polypeptide b (Nppb), streams ahead and selectively plugs into a specific nerve cell in the spinal cord, which sends the signal onward through the central nervous system. When Nppb or its nerve cell was removed, mice stopped scratching at a broad array of itch-inducing substances. The signal wasn’t going through.

Because the nervous systems of mice and humans are similar, the scientists say a comparable biocircuit for itch likely is present in people. If correct, this start switch would provide a natural place to look for unique molecules that can be targeted with drugs to turn off the sensation more efficiently in the millions of people with chronic itch conditions, such eczema and psoriasis.

The paper also helps to solve a lingering scientific issue. “Our work shows that itch, once thought to be a low-level form of pain, is a distinct sensation that is uniquely hardwired into the nervous system with the biochemical equivalent of its own dedicated land line to the brain,” said Mark Hoon, Ph.D., the senior author on the paper and a scientist at the National Institute of Dental and Craniofacial Research, part of the National Institutes of Health.

Hoon said his group’s findings began with searching for the signaling components on a class of nerve cells, or neurons, that contain a molecule called TRPV1. These neurons, with their long nerve fibers extending into the skin, muscle, and other tissues, help to monitor a range of external conditions, from extreme temperature changes to detecting pain.

Yet little is known about how these neurons recognize the various sensory inputs and, like sorting mail, know how to route them correctly to the appropriate pathway to the brain.

To fill in more of the details, Hoon said his laboratory identified in mice some of the main neurotransmitters that TRPV1 neurons produce. A neurotransmitter is a small molecule that neurons selectively release when stimulated, like a quick pulse of water from a faucet, to communicate sensory signals to other nerve cells.

The scientists screened the various neurotransmitters, including Nppb, to see which ones corresponded with transmitting sensation.

“We tested Nppb for its possible role in various sensations without success,” said Santosh Mishra, lead author on the study and a researcher in the Hoon laboratory. “When we exposed the Nppb-deficient mice to several itch-inducing substances, it was amazing to watch. Nothing happened. The mice wouldn’t scratch.”

Further experiments established that Nppb was essential to initiate the sensation of itch, known clinically as pruritus. Equally significant, the molecule was necessary to respond to a broad spectrum of pruritic substances. Previous research had suggested that a common start switch for itch would be unlikely, given the myriad proteins and cell types that seemed to be involved in processing the sensation.

Hoon and Mishra turned to the dorsal horn, a junction point in the spine where sensory signals from the body’s periphery are routed onward to the brain. Within this nexus of nerve connections, they looked for cells that expressed the receptor to receive the incoming Nppb molecules.

“The receptors were exactly in the right place in the dorsal horn,” said Hoon, the receptor being the long-recognized protein Npra. “We went further and removed the Npra neurons from the spinal cord. We wanted to see if their removal would short-circuit the itch, and it did.”

Hoon said this experiment added another key piece of information. Removing the receptor neurons had no impact on other sensory sensations, such as temperature, pain, and touch. This told them that the connection forms a dedicated biocircuit to the brain that conveys the sensation of itch.

But the scientists had stepped into a conundrum. Previous reports had suggested that another neurotransmitter called GRP might initiate itch. If that wasn’t the case, where did GRP fit into the process?

They tested the receptor neurons that express GRP, finding the previous reports were correct about this molecule relaying the signal to the central nervous system. GRP just enters the picture after Nppb already has set the sensation in motion.

Based on these findings, Nppb would seem to be an obvious first target to control itch. But that’s not necessarily the case. Nppb also is used in the heart, kidneys, and other parts of the body, so attempts to control the neurotransmitter in the spine has the potential to cause unwanted side effects.

“The larger scientific point remains,” said Hoon. “We have defined in the mouse the primary itch-initiating neurons and figured out the first three steps in the pruritic pathway. Now the challenge is to find similar biocircuitry in people, evaluate what’s there, and identify unique molecules that can be targeted to turn off chronic itch without causing unwanted side effects. So, this is a start, not a finish.”

ive been on 45mg stelara for 2 yrs and its done me great.
have a long history of p and have tried everything else...this has been the best medication for me.
i recently got strep throat and flared up everywhere - my last stelara injection (4 weeks ago) hasn't helped at all. is there any risk in taking another dose 4 weeks later to kick it into gear..just as a one time thing? has anyone ever done that before? considering im not on the 90 mg i'm assuming it might be ok...

Hi guys, new to this forum but I have been a scratcher for what's been an eternity since I was 1 year old. Think I have been on every treatment available and the current treatment has been far the best ever but it has taken decades to get to where I am. I have had all sorts of topicals, steroids, tablets, lights including UVB, PUVA and TLS01 , had weeks on end in hospital for treatment and now finally I am on a combination of injection (Etanercept) and Methotexate tablets which I have been on for 2 years and I am almost psoriasis free and the scratching is down to a minimum now. I want now to be totally free but happy enough if it remains stable.

forever optimistic

Scapaflow

Hi everyone. My name is Cassie. I will be 26 in sept. I've been suffering with psoriasis since I was about 5. Since I've had two children and put on some weight it has gotten worse. I use to only suffer on my scalp. Its moved everywhere and I mean everywhere which just sucks. I no longer feeling beautiful. The itching and the pain make it really hard to save energy for my children. So most days I push myself too far trying to not let them know mommy is tired and not feeling well so I end up suffering more. But I'm a warrior and I'm not going to let this disease run me down. I hope I can meet more people like me that I can relate to. Cant wait to start talking to new people.

Hi all,  my son also has psoriasis, he is 11 and has suffered with this condition for two yrs, he has had numerous creams that haven't worked and now is about to embark on methotrexate, I know this works well and I am familiar with it having used it previously my self, would love to hear your thoughts, x

More Men are offered Biological Treatments for psoriasis than Women. Is it sex discrimination, or is there another reason? This survey from researchers at Sweden's Umeå University thinks it has found the answer.

Quote:

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Objectives:
Moderate to severe psoriasis, once regarded as merely a skin disease, is today seen as an inflammatory systemic disease. The sex ratio of the prevalence of psoriasis is balanced. In recent years several reports have documented that men receive more systemic or UV treatment than women, and different hypotheses were made. In PsoReg, the national registry for systemic treatment of psoriasis in Sweden, we have, like other European registries, observed a predominance of men (59%), especially of men treated with biologics (63%). Biologics are a relatively new group of very effective but high-priced drugs. The objective of this study was to analyse if women are discriminated by not having the same access to the high-priced biologics.

Design:
Population based cohort study using data from a nationwide quality register of psoriasis patients.

Population:
2294 patients with moderate to severe psoriasis receiving systemic treatment from a specialist in dermatology.

Main Outcome Measures:
Time to initiation of biologic treatment. A multiple Cox proportional hazard’s regression was performed, with time to initiating a biologic treatment as the outcome in order to assess the independent role of the patient’s sex in initiating such therapy. The psoriasis severity was defined as a time-varying variable.

Results:
Men had more severe psoriasis than women according to the Psoriasis Area and Severity Index (PASI), regardless of age at enrolment, and throughout the study period. The analysis in the multiple Cox regression show that age, psoriasis severity and psoriasis arthropathy were relevant factors for initiating biologic therapy, whereas sex is not.

Conclusions:
Although as many women as men are believed to suffer from psoriasis, men seem to be more severely affected by psoriasis. The asymmetry in allocation of biologic therapy thereby probably reflects the differing disease activity between the sexes, and is not a discrimination against women per se.

Are you single and looking for love? Do you have psoriasis? Do you want to meet the person of your dreams?

****** are making a third run of the romantic, insightful and acclaimed documentary series ********* for *******.

Once again they will be following people with a variety of conditions through the highs and lows of their quest to find love. As with both previous acclaimed series they will explore and challenge some of the issues and barriers that are faced.

They are very interested to hear from you if you suffer from psoriasis and feels this affects your search for love.

If you are interested in taking part please get in touch on *****************

Hello all

Im new to the site and forum so thought Id drop by and say hi to you all. Hope to chat more now I have found you guys

Love to all

xx