Hello Guest, Welcome To The Psoriasis Club Forum. We are a self funded friendly group of people who understand.
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Psoriasis Club is a friendly on-line Forum where people with psoriasis or psoriatic arthritis
can get together and share information, get the latest news, or just chill out with others who understand. It is totally
self funded and we don't rely on drug manufacturers or donations. We are proactive against Spammers,
Trolls, And Cyberbulying and offer a safe friendly atmosphere for our members.
So Who Joins Psoriasis Club?
We have members who have had psoriasis for years and some that are newly diagnosed. Family and friends of those with psoriasis
are also made welcome. You will find some using prescribed treatments and some using the natural approach. There are people who
join but keep a low profile, there are people who just like to help others, and there are some who just like
to escape in the Off Topic Section.
Joining Couldn't Be Easier: If you are a genuine person who would like to meet others who understand,
just hit the Register button and follow the instructions.
Members get more boards and privileges that are not available to guests.
OK So What Is Psoriasis?
Psoriasis is a chronic, autoimmune disease that appears on the skin. It
occurs when the immune system sends out faulty signals that speed up the
growth cycle of skin cells. Psoriasis is not contagious. It commonly
causes red, scaly patches to appear on the skin, although some patients
have no dermatological symptoms. The scaly patches commonly caused by
psoriasis, called psoriatic plaques, are areas of inflammation and
excessive skin production. Skin rapidly accumulates at these sites which
gives it a silvery-white appearance. Plaques frequently occur on the
skin of the elbows and knees, but can affect any area including the
scalp, palms of hands and soles of feet, and genitals. In contrast to
eczema, psoriasis is more likely to be found on the outer side of the
joint.
The disorder is a chronic recurring condition that varies in severity
from minor localized patches to complete body coverage. Fingernails and
toenails are frequently affected (psoriatic nail dystrophy) and can be
seen as an isolated symptom. Psoriasis can also cause inflammation of
the joints, which is known as (psoriatic arthritis). Ten to fifteen
percent of people with psoriasis have psoriatic arthritis.
The cause of psoriasis is not fully understood, but it is believed to
have a genetic component and local psoriatic changes can be triggered by
an injury to the skin known as Koebner phenomenon. Various
environmental factors have been suggested as aggravating to psoriasis
including stress, withdrawal of systemic corticosteroid, excessive
alcohol consumption, and smoking but few have shown statistical
significance. There are many treatments available, but because of its
chronic recurrent nature psoriasis is a challenge to treat. You can find more information
Here!
Got It, So What's The Cure?
Wait Let me stop you there! I'm sorry but there is no cure. There are things that can help you
cope with it but for a cure, you will not find one.
You will always be looking for one, and that is part of the problem with psoriasis There are people who know you will be
desperate to find a cure, and they will tell you exactly what you want to hear in order to get your money. If there is a
cure then a genuine person who has ever suffered with psoriasis would give you the information for free. Most so called cures
are nothing more than a diet and lifestyle change or a very expensive moisturiser. Check out the threads in
Natural Treatments first and save your money.
Great so now what? It's not all bad news, come and join others at Psoriasis Club and talk about it. The best help is from accepting it and talking
with others who understand what you're going through. ask questions read through the threads on here and start claiming
your life back. You should also get yourself an appointment with a dermatologist who will help you find something that can
help you cope with it. What works for some may not work for others
I'm a 43 year old woman who has suffered on and off all my life. Over the last couple of years my scalp has got so much worse. I've tried every shampoo and lotion there is and nothing helps.
Has anyone found anything that helps that I can recommend to my doctor?
I found my first patch back in 2000 it was small just at my hairline on top of my forehead. I was 33 then. I didn't give it much thought chalked it up to the hair colour I had just applied. But the patch grew and flaked and not long after my Dr, confirmed it was psoriasis. For the past 17 years it has completely covered my scalp, my knees. various spots on my back, toe nails etc. then just last week it is invading my face.
My Dr. is setting me up now to have cosentyx. I am excited and nervous at the same time. Afraid of the possible side effects, afraid it won't work, trying hard not to let this condition own me, But I am thankful to have the chance at being clear in nearly 20 years
Will be nice not to leave flakes everywhere I go..So glad to come across this site..Reading the experiences of others has helped put my some of my worries to rest.
Hi all,
Just joined the forum today.
I'm from bonnie Scotland nearly 62 yrs old. As most of yourselves suffered from psoriasis for a long time and now have diabetes type 2 as well, how lucky am i .
Hi All,
This is my first post.
Let me give a history of my Psoriasis (P)/ Psoriatic arthitis (PSA).
I first developed (P) in 1978, mainly outbreaks on my skin, my wife who is a nurse decided to buy an infrared/ultraviolet lamp, which cleared the (P) up, I've been fortunate since then it's never re-appeared. Fast forward to 1985, my finger nails started with a very small dark patch in the centre of the nails one at a time and hence since then I've had Nail (P) with badly pitted nails, the only other psoriasis was on my scalp and groin area. In 1989 I was put on methatrexate to try and clear up my nail P, unfortunately after 18 months I had to come off this as it was damaging my liver, it wasn't really improving my (P) anyway .
Around 2000 the only treatment I was getting for (P) was Alphosyl shampoo for my scalp nothing else, but I noticed the joints in my fingers were swelling slightly and painful mostly in the cold weather.
In 2009 both my hands exploded literally they went 4 times their size. I was assigned to a rheumatology consultant. I was given the option of either Leflunomide or Sulphasalzine, I opted for Leflunomide.This had been working ok up until 2015, my PSA then gradually spread to my feet shoulders, hips and spine. By mid 2016 after a utrascan of my hands, I was also given an addition of Naproxen to my Leflunomide . Taking this made me feel ill and it also gave me a stomach bleed so this was discontinued. Oct/nov 2016 I was then put on Sulphasalzine in addition to my Leflunomide, all was ok until dec of same year when I went seriously ill ended up in hospital,they thought I had pnumonia then sepiticemia,I had an ecg and xrays taken, all were clear and given intravenous antibiotics, released on xmas eve, taken off all meds for PSA, started feeling slightly better just had a thirst and feeling lethargic.
I then restarted my Leflunomide all was ok a week later started the sulphsalazine in the morning, by afternoon I went ill again phoned my doctor and told him I wasn't taking sulphasalizine any more. For anybody who has regular blood tests done, I've had monthly tests since 2010. One of the tests is called LFT (liver function Test), they check your CRP levels, mine's normally sits around 6, when I went ill it jumped to 122.
On January 17th 2017 I developed type 2 diabetes,. In February I had a massive flare up of my PSA,it got so bad I couldn't dress myself , my wife had to dress and shave me and cut up meat when having dinner, it took me almost half an hour from my bedroom upstairs to downstairs.
By this time I've also been allocated a Rheumatology Led nurse, so phoned my doc he told me to contact my nurse which I duly did seen her a few days later, she took measurements of my hands and feet (swelling), I was given two general cortizone injections, these helped slightly but not enough, my painkillers were changed co codamol 8/500 to 30/500.Two weeks later I returned to see my Rhuematology nurse who then informed me
that the coventional drugs for PSA were'nt going to work any more, but there was a new biological drug called Cosentyx (sekukinumab), Due to the costs of this treatment I would have to wait for it to be approved. It took 7 weeks to be approved ( I live in Scotland so I'm under the auspices of the NHS), this was approved by April.
My first dose (week 0) was the 18th of April (i'm on 150mg dose), five days later the pain had gone completely I kid you not , the swelling in my hands reduced by week 2, I've just had my month 4 dose and swelling still down.
The only side effects I've had are a runny nose when I eat and very slight herpes on my lips.
Since December I'd been off work until early July, when I had my flare up I thought that was the end of my working career ,but thanks to Cosentyx
I've started on a phased return to work and really my only concern just now is learning to work with Diabetes too.
Anyone reading this who suffers from PSA I highly recommend get in touch with your doctor and get on this. It's only a young drug if fact i believe it's only been available since 2013, (I'm still taking Leflunomide as well, this maybe due to one injection per month).
Please note, injections are delivered to your home as they have to kept in the fridge.
Posted by: Vincent - Wed-09-08-2017, 19:06 PM
- Replies (26)
Hi - been on Fumaderm since Oct 16 - progressed from white to blue tablets but not passing 120mg X 3 per day.( Liver results and extended 11 weeks travel thro US suspended dose to higher levels ) .
Following return had to suspend for 5 weeks due to significant foot surgery ....restarted but after 3 weeks severe itching thro body - face ,ears, head, ands etc ......saw my Derm Dr today and she says we are not really progressing with FUM tablets ......altho some improvement on the PS but not enough with going fwd on a higher dose.
So we are moving along the road and kicking in with Methotrexate........so just wondering if any folks have had any experience good or bad going along this road
Kind regards
Vincent
While the above information is from the manufacturer, it seems strange to me that it's basically the same as Fumaderm and yet the common side effects differ greatly from my experience
Skilarence lists as common side effect as high total white cell count
Common side effects (may affect up to 1 in 10 people):
- increase in all white blood cells (leukocytosis)
- increase in specific white blood cells called eosinophils
Whereas Fumaderm warns to watch the white cell count for dropping
Leukopenia ( reduction of white blood cells) Treatment with FUMADERM must be discontinued immediately in the presence of a significant reduction in leukocyte count- particularly if values are below 3,000ul
Lymphopenia ( reduction in specific white cells if the lymphocyte count drops below 500ul treatment must be discontinued immediately
I'm on Fumaderm and my blood count goes down from time to time .....but has never gone above normal. And from other people's experiences that I've read, it's been the same
Edit by Fred: This is a split thread from: Skilarence
After I was told I had psoriasis I was given all different types creams on a try this one systems. I was then given methrotrexate . I was on it for nearly 2 years when my doctor at the hospital told me to stop taking methrotrexate and I had to go for a liver biopsy which was very painful, I was told that the methrotrexate had scared my liver. I was then put onto Acitretin 2x 10 mg caps for about 2 to 3 years then it was increased to25mg caps but that made me I'll so it was put back to 2x10 mg caps which I am still on.I still have my palms and the soles of my feet pealing but rest of my body is almost clear. My advice to anybody on methrotrexate to keep having your blood tested at regular times.
Posted by: jiml - Mon-07-08-2017, 14:35 PM
- No Replies
What Skilarence is and what it is used for
What Skilarence is
Skilarence is a medicine that contains the active substance dimethyl fumarate. Dimethyl fumarate works on cells of the immune system (the body's natural defences). It changes the activity of the immune system and reduces the production of substances involved in causing psoriasis.
What Skilarence is used for
Skilarence tablets are used to treat moderate to severe plaque psoriasis in adults.
Response to Skilarence can be generally seen as early as week 3 and improves over time. Experience with related products containing dimethyl fumarate shows treatment benefit for at least up to
24 months.
Do not take Skilarence
- if you are allergic to dimethyl fumarate or any of the other ingredients of this medicine
- if you have severe problems with your stomach or intestines
- if you have severe liver or kidney problems
- if you are pregnant or breast-feeding
Monitoring
Skilarence may cause problems with your blood, liver or kidneys. You will have blood and urine tests before treatment and then regularly during your treatment to make sure that you are not getting these complications and can continue to take this medicine. Depending on the results of these blood and urine tests, your doctor may reduce your dose of Skilarence or stop treatment.
Infections
White blood cells help your body to fight infections. Skilarence may reduce the number of your white blood cells. Talk to your doctor, if you think you may have an infection. Symptoms include fever, pain, aching muscles, headache, loss of appetite and a general feeling of weakness. If you have a serious infection, either before starting treatment with Skilarence or during treatment, your doctor may advise you not to take Skilarence until the infection has resolved.
Gastrointestinal disorders
Tell your doctor if you have or have had problems with your stomach or intestines. Your doctor will advise you on what care you need to take during Skilarence treatment.
Children and adolescents
Children and adolescents below the age of 18 years should not take this medicine because it has not been studied in this age group.
Other medicines and Skilarence
Tell your doctor or pharmacist if you are taking, have recently taken or might take any other medicines.
In particular, tell your doctor if you are taking the following:
- Dimethyl fumarate or other fumarates. The active ingredient in Skilarence, dimethyl fumarate, is also used in other medicines such as tablets, ointments and baths. You must avoid using other products that contain fumarates to prevent taking too much.
- Other medicines used to treat psoriasis, such as methotrexate, retinoids, psoralens, ciclosporin, or other immunosuppressants or cytostatics (medicines that affect the immune system). Taking these medicines with Skilarence could increase the risk of side effects on your immune system.
- Other medicines that can affect your kidney function, such as methotrexate or ciclosporin (used to treat psoriasis), aminoglycosides (used to treat infections), diuretics (which increase urine), nonsteroidal anti-inflammatory drugs (used to treat pain) or lithium (used for bipolar disease and depression). These medicines taken together with Skilarence could increase the risk of side effects on your kidneys.
If you get severe or prolonged diarrhoea with Skilarence, other medicines may not work as well as they should. Talk to your doctor if you have bad diarrhoea and are concerned that other medicines you are taking might not work. In particular, if you are taking a contraceptive medicine (the pill), the effect may be reduced and you may need to use other barrier methods to prevent pregnancy. See the instructions in the patient leaflet of the contraceptive you are taking.
Skilarence with alcohol
Avoid strong alcoholic drinks (more than 50 ml of spirits containing more than 30% alcohol by volume) during treatment with Skilarence, as alcohol can interact with this medicine. This could cause stomach and intestinal problems.
Pregnancy and breast-feeding
Do not take Skilarence if you are pregnant or trying to become pregnant, as Skilarence may harm your baby. Use effective methods of contraception to avoid becoming pregnant during treatment with..
Do not breastfeed while taking Skilarence
Dose
Your doctor will start your treatment with a low dose (using 30 mg Skilarence tablets). This helps to reduce stomach problems and other side effects. Your dose will be increased every week (switching to 120 mg Skilarence tablets from week 4 onwards).up to a maximum of 720mg a day at week 9
Your doctor will check how well your condition is improving after you start taking Skilarence and will check for side effects. If you have severe side effects after an increase in dose, your doctor may recommend that you temporarily go back to the last dose. If the side effects are not troublesome, your dose will be increased until your condition is well controlled. You may not need the maximum dose of 720 mg per day. After your condition has improved sufficiently, your doctor will consider how to gradually reduce the daily dose of Skilarence to what you need to maintain your improvement.
Method of administration
Swallow Skilarence tablets whole with liquid. Take your tablets during or immediately after a meal. Do not crush, break, dissolve or chew your tablets, as they have a special coating to help prevent irritation of your stomach
Possible side effects]
Like all medicines, this medicine can cause side effects, although not everybody gets them. Some of these side effects, such as reddening of the face or body (flushing), diarrhoea, stomach problems and nausea usually improve as you continue treatment.
The most serious side effects that may occur with Skilarence are allergic or hypersensitivity reactions; kidney failure or a kidney disease called Fanconi syndrome; or a severe brain infection called progressive multifocal leukoencephalopathy (PML). It is not known how commonly they occur. For symptoms see below.
Allergic or hypersensitivity reactions
Allergic or hypersensitivity reactions are rare but may be very serious. Reddening of the face or body (flushing) is a very common side effect which may affect more than 1 in 10 people. However, if you become flushed and get any of the following signs:
- wheezing, difficulty breathing or shortness of breath,
- swelling of the face, lips, mouth or tongue
stop taking Skilarence and call a doctor straight away.
Brain infection called PML
Progressive multifocal leukoencephalopathy (PML) is a rare but serious brain infection that can lead to severe disability or death. If you notice new or worsening weakness on one side of the body; clumsiness; changes in vision, thinking or memory; confusion; or personality changes lasting several days, stop taking Skilarence and talk to your doctor straight away.
Fanconi syndrome
Fanconi syndrome is a rare but serious kidney disorder which may occur with Skilarence. If you notice you are passing more urine, are more thirsty and drinking more than normal, your muscles seem weaker, you break a bone, or just have aches and pains, talk to your doctor as soon as possible so that this can be investigated further.
Very common side effects (may affect more than 1 in 10 people):
- decrease in white blood cells called lymphocytes (lymphopenia)
- decrease in all white blood cells (leukopenia) - reddening of the face or body (flushing)
- diarrhoea
- bloating, stomach pain or stomach cramps
- feeling sick (nausea)
Common side effects (may affect up to 1 in 10 people):
- increase in all white blood cells (leukocytosis)
- increase in specific white blood cells called eosinophils
- increase in certain enzymes in the blood (used for checking the health of your liver) - being sick
- constipation
- gas (flatulence), stomach discomfort, indigestion
- decreased appetite
- headache
- feeling tired
- weakness
- feeling hot
- abnormal sensations of the skin, such as itching, burning, stinging, tickling or tingling - pink or red blotches on the skin (erythema)
Uncommon side effects (may affect up to 1 in 100 people):
- dizziness
- excess protein in the urine (proteinuria)
- increase in serum creatinine (a substance in the blood used for measuring how well your kidneys are working)
Rare side effects (may affect up to 1 in 1,000 people): - allergic skin reaction
Very rare side effects (may affect up to 1 in 10,000 people): - acute lymphatic leukaemia (a type of blood cancer)
- decrease in all types of blood cells (pancytopenia)
What Skilarence 120 mg contains
- the active substance is dimethyl fumarate. One tablet contains 120 mg dimethyl fumarate. - the other ingredients are: lactose monohydrate, cellulose microcrystalline, croscarmellose
sodium, colloidal anhydrous silica, magnesium stearate, methacrylic acid-ethyl acrylate copolymer (1:1), talc, triethyl citrate, titanium dioxide (E171), simethicone, indigo carmine (E132) and sodium hydroxide.
This post was edited to show very common side effects from modified leaflet
Posted by: jiml - Sun-06-08-2017, 21:14 PM
- No Replies
Leflunomide
Leflunomide belongs to a group of medicines called anti-rheumatic medicines. It contains the active substance leflunomide. Because of its effect on the immune system , leflunomide can reduce the inflammation that causes pain, swelling and stiffness in the joints
Leflunomide is used to treat adult patients with active rheumatoid arthritis or with active psoriatic arthritis.
Symptoms of rheumatoid arthritis include inflammation of joints, swelling, difficulty moving and pain. Other symptoms that affect the entire body include loss of appetite, fever, loss of energy and anaemia (lack of red blood cells).
Symptoms of active psoriatic arthritis include inflammation of joints, swelling, difficulty moving, pain and patches of red, scaly skin (skin lesions).
• How to take your medicine
Always take this medicine exactly as your doctor or pharmacist has told you. Check with your doctor or pharmacist if you are not sure.
• For rheumatoid arthritis: 10 or 20 mg Leflunomide once daily, depending on the severity of the disease.
• For psoriatic arthritis: 20 mg Leflunomide Winthrop once daily.
Swallow the tablet whole and with plenty of water.
It may take about 4 weeks or longer until you start to feel an improvement in your condition. Some patients may even still feel further improvements after 4 to 6 months of therapy.
You will normally take Leflunomide over long periods of time.
•If you take more Leflunomide than you should, contact your doctor or get other medical advice. If possible, take your tablets or the box with you to show the doctor.
•If you forget to take a dose, take it as soon as you remember, unless it is nearly time for your next dose. Do not take a double dose to make up for a forgotten dose.
•Do not take Leflunomide
- if you have ever had an allergic reaction to leflunomide (especially a serious skin reaction, often accompanied by fever, joint pain, red skin stains, or blisters e.g. Stevens-Johnson syndrome) or to any of the other ingredients of this medicine
- if you have any liver problems,
- if you have moderate to severe kidney problems,
- if you have severely low numbers of proteins in your blood (hypoproteinaemia),
- if you suffer from any problem which affects your immune system (e.g. AIDS),
- if you have any problem with your bone marrow, or if you have low numbers of red or white cells in your blood or a reduced number of blood platelets,
- if you are suffering from a serious infection,
- if you are pregnant, think you may be pregnant or are breast-feeding.
Posted by: jiml - Sun-06-08-2017, 20:57 PM
- No Replies
Sulfasalazine
What is sulfasalazine and how is it used
Sulfasalazine is a type of drug known as a disease-modifying anti- rheumatic drug (DMARD). It works by modifying the underlying disease process to reduce inflammation, pain and swelling in your joints.
It can be used to treat:
* Psoriatic arthritis
* rheumatoidarthritis
Sulfasalazine doesn’t work immediately. It may be at least 12 weeks before you notice any benefit.
You shouldn’t take sulfasalazine if you’re known to have an allergy to salicylates (e.g. aspirin) or to sulphonamides (a type of antibiotic).
How and when do I take it
Sulfasalazine tablets should be taken with a glass of water. Sulfasalazine is generally prescribed as Salazopyrin EN-Tabs –
These tablets are coated so that they don’t dissolve quickly in your stomach. They should be swallowed whole and not crushed or chewed.
Your doctor will advise you on the correct dose – usually a low dose at first (e.g. one 500 mg tablet daily). This is usually increased gradually over a period of about four weeks – typically to two 500 mg tablets taken twice daily. The dose may be adjusted according to the severity of your symptoms.
Sulfasalazine needs to be taken regularly to keep your symptoms under control.
i originally joined this forum to ask a simple question, but i guess i may as well join the group.
since adolescence i had really bad dandruff, but after a few years, lesions appeared on my private areas, which made me go to the doctor, leading to my diagnosis of inverse psoriasis. this was about 10 years ago. these days i get lesions on my back and stomach too, and recently my arms and legs have joined in on the fun.
originally i treated with steroid creams, but then discovered protopic, which i used happily for years. however, one day i got incredible side effects - i could not stop scratching. as a sufferer from psoriasis, i know very well what itching can be like - this was 100 times worse, i ran into the bathroom and stayed for 15 min in a cold shower.
despite this experience, i tried again the next night, and went through the same thing again.
so it was back to daivobet for me. see im fortunate enough to have a light case, so no biological or systematic treatment for me.
now ill rant:
this nasty "gel" stains my cloths, so i only use it before going to bed. but see i work really long hours, and i study 2 nights a week ontop of that, not to mention my drinking habit. so by the time i get home im usually starving and exhausted, theres no way im spending 15 minuets rubbing horrible creams into my skin.. even if im a good little boy and i use the cream 4-5 nights in a row (a rare occurrence) theres no way in hell it will happen on the weekend. so i use the "gel" in 2-3 day patches, with a few days interval in between.
all this to say, im treating my p all wrong, and im very much aware of it.
i went online to find out the the recommended diet is (for me) virtually impossible. i get stressed easily too...
i may have been diagnosed 10 years ago, but i still feel like a novice, and i simply do not know what to do. i hope to gather some more info (partly from this forum), and go back to my doctor. but im pretty sure he'll just tell me again that for my case, daivobet is my best option...
and it was really hot too, like 35 degrees Celsius, and it wasnt a new tube either, it was already a few months old anyway. im afraid to use it now, but ofcourse the psoriasis is flaring up right when i least need it, and it will be hell to wait till i can see a doctor. anyone got any insight? would it be ok to use anyway? whats the worse that can happen? any help will be greatly appreciated, thanks
I've had PPP for about five years and about six months ago it became pretty much unbearable, so I caved in and told my dermatologist I'm ready to try the oral meds. Three months ago I started on Neotigason/Acitretin 25 mg for two weeks and then upped it to 30 mg until I saw the dermatologist again. The worst of the side effects were that my lips were peeling badly and the inside of my nostrils was incredibly sore, but my hand and foot were definitely improving, to the point where I can show my hand without the PPP being obvious.
Wasn't particularly happy with the coating on my palate after eating, some dizzy spells, very dry skin all over, itchy spots appearing on my legs, hair loss - most of the usual side-effects. I was advised to cut back to 25 mg to lessen the side effects, and that's helped. Still get patches on my legs that I never had before and they itch, and spots on my arms itch too, mainly in the evenings. I stuff QV intensive moisturiser up my nose at least twice a day now instead of on my hand and foot which helps the dry and sore nostrils. My lips have improved but still get dry. It's been quite something to see how much skin has peeled off both of my feet, top and bottom, in places I never had PPP. When my skin is wet it becomes disturbingly smooth and sticky, and I have to be careful in the shower that I don't slip on the tiles. My foot hasn't improved as much as my hand, but apparently feet take longer. I'm glad I can walk without a limp now, though!
I could do with some advice: My hair has been thinning and I'm worried enough about that, but it's my eyebrows! Although I'm a brunette, my eyelashes and eyebrows are quite light and the Neotigason seems to have thinned what little I had in the way of eyebrows to the point where they're not obvious at all. I always used an eyebrow pencil to fill them in to make my face look less 'blank', but there's not much left at all anymore. I'm wondering about costmetic tattooing to help my self-esteem but I'm worried that the effect of the Acitretin on my skin may cause more problems. Does anyone have experience in cosmetic tattooing, or general tattooing, while using Neotigason/Acitretin?
Thanks to all for sharing their stories and making us all feel less alone in our struggles with this disease.
M.
Quote:
Bristol-Myers Squibb Company (NYSE: BMY) announced today that the European Commission (EC) has approved ORENCIA alone or in combination with methotrexate for the treatment of active Psoriatic Arthritis (PsA) in adult patients for whom the response to previous disease-modifying antirheumatic drug (DMARD) therapy, including methotrexate, has been inadequate, and additional systemic therapy for psoriatic skin lesions is not required.
This approval, which allows for the expanded marketing of ORENCIA as a treatment for PsA in all 28 Member States of the EU, marks the second new indication for ORENCIA in less than a year; in September 2016, the European Commission approved ORENCIA, in combination with methotrexate (MTX), for the treatment of highly active and progressive disease in adult patients with rheumatoid arthritis (RA) not previously treated with MTX. PsA becomes the third autoimmune condition, along with rheumatoid arthritis and juvenile idiopathic arthritis, for which ORENCIA is approved to treat in Europe.
“This EC approval builds on the well-established profile of ORENCIA in Rheumatoid Arthritis and exemplifies our commitment to ongoing clinical research of ORENCIA as a potential treatment for autoimmune conditions where treatment options are limited or where patients have not been helped enough by other medications,” said Brian J. Gavin, Ph.D., Vice President, ORENCIA Development Lead at Bristol-Myers Squibb. “Despite the current availability of medications, there are many people with active Psoriatic Arthritis who are in need of a new treatment option; the approval of ORENCIA now provides a novel immunotherapy approach that may help these patients.”
The approval was based on results from two randomized, double-blind, placebo-controlled studies (Studies PSA-I and PSA-II) in which a higher proportion of patients achieved an ACR 20 response, the primary endpoint, after treatment with ORENCIA 10 mg/kg intravenous (IV) or 125 mg subcutaneous injection (SC) compared to placebo at Week 24: 47.5% versus 19.0% and 39.4% versus 22.3% (p< 0.05), respectively. Responses were seen regardless of prior tumor necrosis factor inhibitor (TNFi) treatment in both studies.
So here goes I thought I'll start a new Thread so I can track my new treatment on treating my psoriasis with a biological drug called Stelara. It's my third biological treatment. I was previously on Ebrel which lasted 2 years and Humira which lasted 3 years. I hope his diary will help others who is starting Stelara or thinking of starting Stelara.
My psoriasis is serve... At its worst it's everywhere taking over at least 80% of my body, when they start to go on my hands and feet that's when I know it's a bad flare and eventually on my face but this has only happened a few times, thank goodness. I don't usually get psoriasis on my hands and feet or my face. It only happen a when I get a serious flare.
So this recent trigger which has taken me off humira to Stelara has been rather bad. But I'm lucky it hasn't started on my face so this isn't the worst it's been. Though having psoriasis on my hands and feet have been a pain and I salute anyone who suffers from this. It's not pretty.
Starting Stelara wasn't easy I had gone to see my Dermo noticing that my psoriasis had started to come back Humira wasn't working anyone and my psoriasis was starting to appear on my legs. I had been pretty much 100% clear in Humira for 3 fabulous years. I was told that Humira isn't working anymore and I was to start Stelara which I agreed to. We did all the paper work and I was assigned to a nurse. She told me it would take 2 weeks to process. I went home and waited. During this time my psoriasis decided to come in vengeance it came up hard and fast and it decided to give me arthritis along with it. OMG I did not know pain until my joints stiffed up and I could not walk or move. I went to the GP and was prescribed Naproxen which made walking bearable. 2 weeks went by and I still hadn't heard from the drug company about delivery of Stelara and nurse appointment to inject me I followed up with my assigned nurse who chased up the drugs for me and planned delivery. A lady called to arrange delivery and told me the earliest the drug would be delivered is 5 days from now and then it would take another 5 days for a nurse to come for my first injection. I broke down and cried. I had been off humira for 3 weeks at this point and my psoriasis was getting worst by the day.
Let me tell you how important it is to have a good dermatology team I called my nurse who has been with through me with countless flares and knows my skin well. Within the hour she had the delivery date escalated and a nurse to come do my injection the next day.
I had my injection 3 days ago, it was painless and I have no side effects and in fact I think I already see some improvement. My psoriasis is less red and not as raised. It still not great but as least it looks like its calming itself down.
I hope that my journey here will help others who are about to take Stelara or newly taking Stelara and that we can experience this together and get better together.
Posted by: Wooley - Sun-23-07-2017, 11:06 AM
- Replies (62)
Hello everyone......
Thanks for allowing me onto the group, I stumbled across it last night.......it is great to see that there are so many people on here willing to help/listen and share experiences....
So April this year, completely out of the blue, I started to get pustules on my hands and feet. I was originally misdiagnosed with pompholyx , was given a steroid cream but it just got worse, went back to the doctors who suspected palmoplantar pustulosis psoriasis (PPP). Following consultation with Derm Consultant I was indeed diagnosed with PPP. I have never had any experience with psoriasis, no family members have ever suffered so feel a bit like i have been hit by a bus to be honest!!
I think the main thing for me is that i feel totally out of control with all the medications/lotions/potions etc, I understand it is a long process trying to find something that works for you personally but I just feel that everything is out of control...... seems every time i go to the hospital i am told to stop taking this and start taking that. GP prescribed Calcitriol (didn't see any improvement using that) a Coal Tar lotion and Epaderm (which is disgusting), then a month later the Consultant prescribed Lotriderm and Protopic and Dermol 500 lotion then i am not kidding you 10 days later (last Thursday) i had an appointment with the nurse and she tells me to stop taking Lotriderm and Protopic and instead take ClobaDerm and another Coal Tar treatment which is much stronger.......Not only has this all been confusing, but at £8.60 an item would have cost me around £120 so far for all this medication, luckily i got a pre-payment prescription card very early on....but now I also have a bathroom that resembles a pharmacy
So since i started taking ClobaDerm my feet have become unbearable and feels like i am walking on broken glass and the upshot of this is i have stopped using everything prescribed and am using a normal everyday moisturiser....the next step for me is PUVA which i start next week so fingers crossed that helps the condition somewhat.....Has anyone else had this treatment?
Will definitely be looking for advice on natural lotions and potions available or what helps other people on the group.....
Apologies for the huge ramble but boy does it feels good to blurt all this out.....so thanks for reading
Posted by: Spotless - Thu-20-07-2017, 09:35 AM
- Replies (26)
Hi,
I thought I'll join the club been lurking here for a few days. I start Stelara today and very nervous about yet another biologic that may not work for me. Been on Enbrel and Humira.
I've had psoriasis for as long as I can remember and I've been on everything that's possible to treat psoriasis. Unfortunately after Humira stopped working I have developed arthritis (god hates me) and this is another ball game. When you can't walk that's just a different story.
So here all flared up waiting for the nurse to come inject me. It's taken 3 weeks to process through the NHS here in London I don't know if that's normal but it has been terrible waiting to start.
So here I am and so happy to read really good success stories about Stelara.
Cheers!
A girl who really really wants to be Spotless!
I have had psoriasis for 16 years. I was first diagnosed when I was 34 years old and I believe it was first triggered by a stressful event. It is also partly hereditary – my mother has it and my grandfather was thought to have it.
In the first few years I was treated with a series of medications, including dovonex (useless), light therapy (good but had a flare straight after the treatment was completed, so not long lasting) and dovobet (my lifeline for the last 14 years). My psoriasis covers more than 10% of my body and is mostly on my legs, feet, elbows, scalp and ears. About 2 years ago it began to spread to my torso and flare fairly frequently. I have also developed mild psoriatic arthritis in my hips, knees, feet and hands, including dactylitis in my left thumb. I have had to use dovobet fairly continuously since then.
I wasn’t keen to move on to more aggressive systemic treatments (methotrexate and biologics) because of the side effects. At this point I should mention I am a medical writer by trade, and have written extensively on the use of these treatments across a wide range of immune-related disorders, including psoriasis and psoriatic arthritis.
I did some research on Removed to see what studies had been carried out on the natural control of symptoms associated with psoriasis. As everyone has probably read, diet is a big factor. So I decided to try diet as a way of controlling my symptoms. I stopped eating gluten, lactose, sugar and limited alcohol to a couple of glasses of wine a week. I managed to follow this for about 6 months and did notice a gradual improvement. I maintained the diet until about 6 months ago, when I was worried I could make myself gluten/lactose intolerant. So I gradually began to reintroduce these to my diet. I also wanted to enjoy life! So I would have sweet stuff and a few more drinks on occasion. One thing I have noticed through this elimination diet was that I definitely had some dietary triggers that resulted in almost immediate flares (same day). These were wheat (bread/pasta/cake) but not necessarily gluten, more than 3 glasses of wine in one sitting and a high dose of sugar (e.g., large slice of cake). All 3 would be a disaster. The flares start in my joints and the skin itching begins after that. I can minimise the impact of the flares by taking ibuprofen and antihistamines (one loratadine and one cetirizine – generic brand) – and obviously not repeating the dietary mistake!
I did some more research to see what evidenced-based natural supplements are out there that could have benefits in an immune-related disorder such as psoriasis. Psoriasis is inflammation – your body attacking itself (in our case our skin). It is also associated with vitamin D deficiency. For many immune-related disorders there has also been the suggestion that gut imbalance is a factor. Basically, our gut bacteria (microbiome) are out of whack. So I focussed my research around anti-inflammatory supplements, supplements good for the skin and probiotics for the gut aspect. I have honed my list of supplements down to the following:
1.Vitamin D (10,000 IU per day)
2.Bio-selenium and zinc
3.Turmeric (curcumin 600 mg with 5 mg organic black pepper)
4.Astaxanthin (12 mg)
5.Biotin (10,000 μg)
6.Omega 3, 6 and 9 (1200 mg) – fish oils
7.Optibac probiotics extra strength (they have shown the good bacteria in their capsules make it through the stomach acid – many others don’t)
I get 1-6 from Removed and 7 direct from the manufacturer (in the UK).
I take one table of each every day after dinner and have been doing so for 6 weeks now. I have noticed a major improvement in my psoriasis and joint pain. It took about 3 weeks to notice the benefit. I have managed to come off dovobet completely for the first time in over 2 years – I was using it every evening. My plaques have gone from red, scaly, itchy/sore to flat stains in the majority of places. I still have minor raised plaques on my elbow and one on my feet. I am not having any side effects from taking the supplements. I do try and stick to the wheat free, low sugar, sensible alcohol intake diet. I also keep my skin well moisturised by applying an emollient in the morning and at bedtime.
It has made a big difference to the quality of my life, which has been fairly dominated by my condition. I would be interested to see if this has any benefit in anyone else willing to try, as I recognise this is only a case study of one person.
Posted by: Fred - Sun-16-07-2017, 20:24 PM
- No Replies
Quote:
Novartis, a global leader in Immunology & Dermatology, confirmed today positive 5 year efficacy and safety results for Cosentyx® from a Phase III long-term extension study in patients with moderate-to-severe plaque psoriasis. Data will be presented at a key medical congress in the second half of 2017. 5 year Phase III data are a recognized milestone for assessing long-term efficacy and safety of innovative treatments.
"Cosentyx has consistently demonstrated sustained efficacy and safety providing psoriasis patients a new standard of long-term care," said Vas Narasimhan, Global Head of Drug Development and Chief Medical Officer, Novartis. "With the first data from a pivotal trial with 5 years of follow up, Cosentyx continues to demonstrate it can provide what psoriasis patients want, a life with clear skin."
4 year Phase III data presented at EADV 2016 showed Cosentyx delivered almost clear or completely clear skin in a majority of patients (PASI 90 - 66%, PASI 100 - 44%) after 4 years of treatment. The data showed that with Cosentyx, 97% of PASI 90 and 99% of PASI 100 response rates were maintained from Year 1 to Year 4.
Recently, new label updates announced for Cosentyx in Europe demonstrated long-term superiority of Cosentyx versus Stelara®* (ustekinumab) in moderate-to-severe plaque psoriasis on the basis of 52 week data from the CLEAR study, and expanded the use of Cosentyx for the treatment of moderate-to-severe scalp psoriasis. Cosentyx was launched in 2015 as the first and only fully-human IL-17A inhibitor to treat psoriasis and is now licenced for the treatment of psoriatic arthritis and ankylosing spondylitis as well. Novartis remains committed to investigating important scientific questions with Cosentyx that address unmet needs and could significantly enhance patients' quality of life.
About the study
The long-term extension study for Cosentyx in patients with moderate-to-severe psoriasis is designed to analyze efficacy and safety over the period of 5 years (Week 260). The current data analysis for Cosentyx includes all patients who reached a PASI 75 response at Week 12 and subsequently received continuous treatment with 300mg secukinumab until the end of Year 5. The study includes analysis of the PASI 75/90/100 response rates over the extended treatment period from Year 1 (Week 52) to the end of Year 5 (Week 260), analyses of body surface area (BSA) and absolute PASI (i.e. assessments of increasing relevance to the dermatologists), showing how many patients still on study drug had no more than 1% of their BSA covered by psoriasis, mean PASI and BSA improvement, as well as the safety profile of Cosentyx.
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Psoriasis Cure!
How many people have Psoriasis?
In 2012 there were approximately 36.5 million prevalent cases of psoriasis, and by 2022, GlobalData epidemiologists forecast that this figure will reach approximately 40.93 million.
The condition affects individuals of both sexes and all ethnicities and ages, although there is a higher prevalence of psoriasis in the colder, northern regions of the world.
The prevalence of psoriasis in the central region of Italy is 2.8 times greater than the prevalence in southern Italy.
Caucasians have a higher prevalence of psoriasis compared with African-Americans, but African-Americans in the US tend to suffer from a more severe form of the disease.