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Welcome to your November newsletter. The weather here has turned very cold after a great late summer. I hope you are keeping well and your psoriasis is under control. The forum has been busy this month yet again with lots of threads updated and new members joining
If you haven't been on for a while we would love to see you so why not log in and update your threads or say hi to some new members. Would you like to have a feature in the newsletter, If you would like anything you've done or seen that might be interesting to other members, contact me or if you prefer any of the helpers HERE
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Please look at these introductions and come and welcome the new members that have taken the trouble to write an introduction. Blue jeans wrote .... im not new to this site but have not introduced myself yet .....
I am 61 and have had Psoriasis since I was 17 at varying degrees of intensity
I would only use natural treatments up until about 6 years ago
when it became unbearable. I think it may have been because of menopause
but I finally found a Derma I liked who convinced me to try Stelera.
Honestly it was life changing. I still always had some areas
but I was at about 80% covered before Stelera
I have since switched to Try?? - sorry I always go blank on the name-
But it is even better. Do I worry about long term effects of these drugs?' Yes
but my quality of life is vastly improved. Anyway
I don't want to forget that I am still a psoriatic and want to be more in
touch with this wonderful community
Read more here Harleysmum wrote . Hi there......
I got my first bout of psoriasis (as I now know it) back when I was pregnant with my first child 22 years ago. It covered the palms of both hands. I was told it was stress eczema and to basically change my lifestyle to get rid of stress and cover my hands with greasy ointments (not medicated). Needless to say that didn't work and I had to put up with it for the next 12 years or so. I did notice that when I went on holiday with my kids and not my (now ex-) hubby, my palms improved considerably. Having split from my hubby and moved in with my mother 8 years ago, my hands cleared up over the next 6 months - yay.
Fast forward to 2016 and I noticed a patch on the sole of my left foot. This just happened to coincide with my blood pressure shooting through the roof. As it got worse and appeared on my left hand as well, I was referred to a dermatologist, who didn't think it could be psoriasis as it was only in those two area - she tried me on various creams and a tablet to clear up fungal infections - none of which worked. After about 6 months she decided to send me for a biopsy (which took over 9 months to be done) and I was eventually seen by her again 14 months after our last appointment (she had me just putting E45 on while waiting for the biopsy and results, so you can imagine how much good that did)!
Anyway biopsy came back as psoriasis, so now I can actually (hopefully) get treatment that works.
So far I have been put on 2 steroid ointments one is dermovate (I can't remember the name of the other one). I was also put on 10mg of acitretin with fortnightly blood tests as I was/am diabetic (diet controlled) and my triglycerides were a "bit high". I was a bit surprised by also having to have a pregnancy test every month before I can pick the pills up from the hospital pharmacy (I'm 51, single and can't remember what sex is lol), but the pills seem to be working. They've just been increased to 20mg. Read more here KazzaG wrote .... Hi my name is Karen, I live in Brisbane, Australia and I am originally from the United Kingdom. I am a single mum of four and I work full time as a truck driver for a large postal company.
My Psoriasis first appeared when I was about ten and I believe was triggered by my dad getting a promotion, us moving house and having to start straight into a new high school. First sign was on my scalp, over the years it has spread around my body and now at the grand old age of fifty two I have Psoriasis pretty much everywhere in varying degrees.
I find stress aggravates it, certain foods, alcohol and the cold weather.
I haven't met anyone else locally who suffers from Psoriasis so I am hoping to participate and learn from others on this site,
Read more here Annettaj wrote .... I have rheumatoid psoriasis, I have also had low platelet count which was put in remission with prednisone. The prednisone was horrible but “fixed” both issues (I thought) but it was temporary. Platelets are in normal range but psoriasis it out of control. Humira stopped working after year and a half, stellara never helped, after loading doses and two more shots on consentx I have now developed pustules covering the soles of my feet and palms of my hands and on my scalp. So, my new doctor going to try..........................
Read more here
Members Treatments, Questions and comments . click on the links and see if you can help.
Marie92 asked ....Does Taltz stop hurting Hi every one! So I am new here and I wanted to get some feedback on taltz. I just started the injections yesterday and it hurt so bad :( do these injections ever stop hurting? I mean I'll take the pain to get rid of the painful psoriasis but these shots are no joke. Thanks!.... Click Here
Imapsomom says .... probably a dumb phototherapy question I notice tonight the boys rear end and lower back (areas that have never had sun exposure) are quite red and verging on burnt. We are due to go in for the third treatment of the week tomorrow. I will ask at the dermatologist office but I would appreciate your thoughts on a) do we wait until Monday and only go twice this week or b) go and ask for a lower dose snd less time so he is still getting the 3x uv but not getting a burn. It seems obvious to me to skip tomorrow, but I don’t want to lose and benefits (and time spent)
Read more here cbleahen asks .... Does Zudaifu cream contain steroids Have been reading on a variety of groups about Zudaifu cream, and whether or not this contains steroids. When I asked my Dermatologist he said all non-regulated creams contain steroids - it's the only way they work. I've only met my Dermatologist three times and trying to be nice, he doesn't really have a personality and one of the old-school consultants who quite possibly has a god-complex!
Read more here <
Psoriasis News and other related items .
Enstilar foam has been added to the list of topical treatments approved for psoriasis
Active ingredients: 50 μg/g calcipotriol (as monohydrate) and 0.5 mg/g betamethasone (as dipropionate)
List of excipients: Liquid paraffin, Polyoxypropylene stearyl ether, All-rac-α-tocopherol, White soft paraffin, Butylhydroxytoluene (E321), Butane, Dimethyl ether.
Shelf life: 2 years. Use within 6 months of first use. Do not store above 30°C. Caution: Extremely flammable aerosol. Important information: For skin use only (topical use). Do not get Enstilar in your mouth, eyes or vagina. If you accidentally get Enstilar on the face, in the mouth or in the eyes, wash the area with water right away. How to use: The can should be shaken for a few seconds before use. Enstilar should be applied by spraying holding the can at least 3 cm from the skin. The foam can be sprayed holding the can in any orientation except horizontally.
Enstilar should be sprayed directly onto each affected skin area and rubbed in gently. The hands should be washed after using Enstilar (unless Enstilar is used to treat the hands) to avoid accidentally spreading to other parts of the body. Application under occlusive dressings should be avoided since it increases the systemic absorption of corticosteroids. It is recommended not to take a shower or bath immediately after application of Enstilar.
Enstilar foam should be applied to the affected area once daily. The recommended treatment period is 4 weeks. The daily maximum dose of Enstilar should not exceed 15 g, i.e. one 60 g can should last for at least 4 days. 15 g corresponds to the amount administered from the can if the actuator is fully depressed for approximately one minute. A two-second application delivers approximately 0.5 g. As a guide, 0.5 g of foam should cover an area of skin roughly corresponding to the surface area of an adult hand..
Read more Here
Siliq better at week 52 than competitors .....This study suggests that brodalumab (aka Siliq and Kyntheum) is associated with a higher likelihood of sustained PASI response, including complete clearance, at week 52 than comparators.
Read the rest of the study Here Xeljanz (Tofacitinib) gets nice approval for psoriatic arthritis
Tofacitinib, with methotrexate, is recommended as an option for treating active psoriatic arthritis in adults, only if:
It is used as described in NICE's technology appraisal guidance on etanercept, infliximab and adalimumab for the treatment of psoriatic arthritis or the person has had a tumour necrosis factor (TNF)-alpha inhibitor but their disease has not responded within the first 12 weeks or has stopped responding after 12 weeks or TNF‑alpha inhibitors are contraindicated but would otherwise be considered (as described in NICE's technology appraisal guidance on etanercept, infliximab and adalimumab for the treatment of psoriatic arthritis). Read more Here Bryhali A new topical treatment gets tentative FDA approval for plaque psoriasis .... Bausch Health Companies and its dermatology business, Ortho Dermatologics, one of the largest prescription dermatology health care businesses, today announced that the U.S. Food and Drug Administration (FDA) has provided tentative approval of the New Drug Application for BRYHALI™ (halobetasol propionate) Lotion, 0.01%, for the topical treatment of plaque psoriasis in adult patients. BRYHALI Lotion is a new potent to superpotent corticosteroid that contains 0.01 percent halobetasol propionate in a novel vehicle lotion. Its safety has been established in clinical trials with dosing for up to eight weeks with no increase in epidermal atrophy. 1 The final FDA approval for BRYHALI Lotion is pending the expiration of exclusivity for a related product, which is expected in early November 2018. The company plans to launch BRYHALI Lotion shortly thereafter, as scheduled, in November 2018.
Read more here ..Click Here BMS-986165 phase 2 trial results ...Quote:
Bristol-Myers Squibb Company today announced results from a Phase 2 study of BMS-986165, an investigational oral, selective tyrosine kinase 2 (TYK2) inhibitor, in patients with moderate to severe plaque psoriasis. Efficacy endpoints including ≥75% and 90% reduction in the Psoriasis Area and Severity Index (PASI 75, PASI 90) were achieved following 12 weeks of treatment with ≥3 mg daily of BMS-986165, with a favorable risk-benefit profile. Nasopharyngitis, headache, diarrhea, nausea and upper respiratory tract infection were the most common adverse events (AEs) reported.
“Moderate to severe psoriasis remains undertreated and many patients struggle with insufficient disease control, leaving a significant need for effective and convenient therapies that can provide a positive impact on patients' lives,” said Mary Beth Harler, M.D., head of Innovative Medicines Development, Bristol-Myers Squibb. “BMS-986165 is a novel, oral, selective TYK2 inhibitor with a distinct mechanism of action that has the potential to help psoriasis patients control their disease, and is planned for study in a wide spectrum of immune-mediated diseases.”.
Read more here .. Cimzea pooled analysis of week 16 data .... Results of a pooled analysis of week 16 data from three randomized controlled trials for Cimzea (certolizumab pegol) for the treatment of patients with moderate to severe chronic plaque psoriasis
Certolizumab pegol, an Fc‐free, PEGylated, anti‐tumour necrosis factor (TNF) biologic, has demonstrated favourable results in three ongoing, phase 3, randomized, double‐blinded, placebo‐controlled trials in adults with psoriasis.
Data were pooled from the ongoing trials to investigate efficacy in selected subgroups and add precision to estimates of treatment effects during the initial 16 weeks of treatment.
In each trial, patients ≥18 years with moderate‐to‐severe chronic plaque psoriasis for ≥6 months were randomized to receive certolizumab 400 mg, certolizumab 200 mg or placebo every 2 weeks for 16 weeks. Coprimary endpoints for the pooled analysis were responder rates at Week 16, defined as ≥75% reduction in psoriasis area and severity index (PASI 75) and physician global assessment (PGA) of 0/1 (‘clear’/‘almost clear’ with ≥2‐category improvement). Safety was assessed by treatment‐emergent adverse events.
Read more here This study investigated the molecular mechanism of Methotrexate in the treatment of psoriasis
Methotrexate (MTX) is used to treat psoriasis, a chronic inflammatory skin disease.
The objective was to investigate the molecular mechanism of MTX in the treatment of psoriasis.
Regulatory T cells (Tregs) and effector T (Teff) cells were isolated from the blood of patients with psoriasis and healthy controls. The proliferation of Teff cells was detected by carboxyfluorescein succinimidyl ester assay. The interferon (IFN)‐γ and interleukin (IL)‐17 levels were analysed by enzyme‐linked immunosorbent assay. The expression of CD73 and FoxP3 were determined by flow cytometry. The expression of proteins in the AMPK/mTOR pathway were detected by Western blot analysis.
The Results:
The data suggested that patients with psoriasis have Tregs with decreased immune suppression function and reduced expression of CD73 compared with healthy controls. Moreover, MTX could significantly restore the immunosuppressive function of IL‐17‐secreting Tregs. This, in turn, inhibits aberrant proliferation of Teff cells in patients with psoriasis, reverses downregulation of CD73, upregulates phosphorylated AMPK and inhibits phosphorylated mTOR, and downregulates IL‐17 and IFN‐γ levels.....
Read the conclusions here Illumya / illumetri .... this biological drug has now been added to our ever growing list of prescribed treatments and as it's now being prescribed in the USA and soon to be available in Europe
Read about it
here . This small study evaluated the efficacy of Cyclosporine A (CsA) in psoriasis
Psoriasis course involves increased secretion of pro‐inflammatory cytokines, among others, a beta transforming growth factor (TGFβs) and its receptors. Cyclosporine A (CsA), an immunosuppressive medicine with the molecular mechanism of operation connected with the properties of cell cycle suppression, is often used in the treatment of severe forms of psoriasis. The efficacy of therapy is assessed based on the disease clinical progression indexes – Psoriasis Area and Severity Index (PASI), body surface area (BSA), and Dermatology Life Quality Index (DLQI). The aim of the study was the evaluation of the efficacy of the CsA treatment of patients with psoriasis vulgaris, based on the clinical parameters and an assessment of the expression profiles of TGFβs and TGFβRs, depending on the concurrent diabetes and metabolic syndrome.
The group under study composed of 32 patients (15 with the metabolic syndrome, seven with diabetes) treated with CsA for 84 days. The molecular analysis included extraction of RNA, assessment of TGβF1‐3, TGFβRI‐III gene expression with the use of the RTqPCR method. The clinical assessment of the effects of this pharmacotherapy involved evaluation of the parameters: PASI, BSA, DLQI before therapy commencement, on the 42nd and 84th days of therapy....
Read about it
here .
Want More
A lot of members only threads and journals have been updated, come and see if there are more replies on your thread ... why not log-in and have a quick look around.
*There are other members only boards. But as it depends on how many posts you have made and what group you are in I won't add them here. The only way to see them is to make more posts.
Fred's Music Column.
Flexi Discs: Do you remember the Flexi Disc? You would get them free at some gigs as promotional items or find them in a copy of your favourite music paper/magazine, even sometimes as giveaways on breakfast cereals. The sound wasn't that good and they were never going to last long, but it was a good way of giving a new band a try rather than spending your hard earned cash on a vinyl.
I found they played better if you put one on top of a vinyl to give a more solid base and put a coin on the playing arm, the decent ones were made from PVC but some where made on resin coated cardboard or embossing paper. In Russia people would make illegal bootlegs on x-ray film and they were known as Bone Records. I vaguely remember some recording booths on the fairgrounds where you could make your own recording, i think some of those were recorded on a Flexi Disc. The Beatles would send out a Flexi Disc to all members of their fan club at Christmas, the disc would include spoken words and a piece of music. MAD magazine also released some specials. Other uses were for Bird and Whale Sounds and there was even one for the funeral of Winston Churchill.
Oh and they are still with us today due to the popularity of the vinyl record making a comeback. Sadly I no longer have any of mine but I did have a few promos, and yes I did have one of birds tweeting and twittering. *I would like to hear from anyone that still has some, so please do post in the on the members only boards.
Decades Quiz Time: Who recorded the album.
#1 1950s: Saxophone Colossus ?
#2 1960s: Lonely and Blue ?
#3 1970s: In Rock ?
#4 1980s Invisible Touch ?
#5 1990s: The Globe Sessions ?
#6 2000s: Laundry Service ?
Members recommendations: This month I asked our members to recommend a track to listen to.
Maryam: Sleeping Sun by Nightwish.
wooleyb: I Would Have Waited Forever by Yes.
jiml: Why Worry by Dire Straits.
D Foster: Ain't No Sunshine by Bill Withers.
Caroline: Don’t Stop Swaying by Sophie B. Hawkins.
JohnB: Crime Of The Century by Supertramp.
Raxyl: 7 years by Lukas Graham.
Imapsomom: Inside and Out by Feist.
That was a good mix, thank you to those that took part. Members can add or see more Here
One in my collection: Emily Small by Picadilly Line.
See you next month.
Recipe Spot
Leek and Pasta Bake
Treat this recipe with extreme caution – it is seriously addictive and ever so easy to consume good old fashioned comfort food the type that sticks to your ribs as it goes down. Going back for thirds is not uncommon.
Not much to this, just grab the following;
350g of chunky pasta we use spirals but Penne works well
3 small leeks
175g smoked bacon
50g butter (no you cant use Margarine its rubbish)
For the sauce
50g Butter (no you still can’t use Marge)
40g Plain flour
1 Pint milk
175g Cheddar cheese
75ml double cream
Start by cooking your pasta for 10 minutes ( no more!) in a large pan of salted boiling water then drain in a colander and rinse with cold water to stop the pasta cooking any more. There is nothing worse than soggy overcooked pasta.
While the pasta is cooking the butter make the sauce, starting by melting the butter in a pan and adding the flour to make a roux cook this down for a few minutes before adding the milk slowly to form the white sauce and simmer very gently
On the other ring melt the other pat of butter and sweat the leeks and bacon down.
Throw the pasta leeks and bacon into a decent sized trough ovenproof dish (give it a good mixing up) add the cheese to the white sauce and mix in well season well with salt, pepper and fresh grated nutmeg then pour over the pasta mix.
Mix a couple of tablespoons of freshly grated parmesan a good tablespoon of breadcrumbs and a pinch of cayenne and crumble over the pasta and sauce.
This will keep for a good while before its needed so can be taken to this spot well in advance. When you need it whack the oven on to 180°C (350F gas mark 4) and bake for 30 to 40 minutes until its lovely and bubbly with a nicely tanned look. If you are doing for a dinner party it will keep in a warm oven if your guests are running late. Serve at the table from the dish, shovel onto your plates and enjoy!
Serve with Mmmm? I think on balance a Valpolicella would be nice or if you must a Pinot Grigio.
Now then that's mine done where's yours? Trough and shovel here I come!
Enjoy
Johnb
To read more recipes or to add your own
Click here
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In This Issue
Top Tips for newly diagnosed psoriasis sufferers
If you have recently been diagnosed with Psoriasis or even if you have sufferered for years, members have been posting things they feel may help you cope, you can follow the link below to see more tips that members have posted
But here's a couple to start
Talk: Don't keep it to yourself. Share with your friends, family, colleagues and our members here.
Read: You have Psoriasis, try to get some knowledge about your disease, it will make you a better partner for your dermatologist in order to find the best treatment for you.
To see the full list of top tips Or if you have one to share
Click Here
Sneaky peek
We have an active Off Topic Board and we thought we would share some sneaky peeks with our lurkers.
Films to recommend Turnedlight wrote I second Raxyl on Interstellar and the Martian (seen it quite a few times!)
I would add the new Bladerunner film - it gets better each time I see it, and I’ve always liked Bicentennial man though possibly a bit dated now. I like the Mission Impossible films too.
As to old movies, I enjoyed the 1955 Ealing studios The Ladykillers and also The 39 steps (not sure which version I’ve seen, probably the 1970s one). . Why not add your favourite film to the list
.. here Why not drop in for a drink and a chat, there's usually someone there for company and some nibbles on the bar ..... THE BAR
Poetry section
Turnedlights poetry corner ..
"This month Turnedlight has given us another limerick ......
Halloween
The witches held a Halloween ball
They cackled and danced round the hall
They drank too much sherry
And made themselves merry
And then off their broomsticks did fall
.
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Just a small bunch of friendly people with psoriasis sharing information and support.
Psoriasis Cure!
Stop Press
Arsenalfan has updated his Methotrexate experience
Just thought I'd pop in with a quick update. Been on mtx for about 5 months now and it's worked wonders for me. It's cleared me up about 99.9%.. have a couple of stubborn patches but are very small and not angry looking at all. Still got the pink patches that are evidence of where some of psoriasis was but my dermatologist said these will fade too but that might not happen until the summer.
Dose is 15mg and I can't say I've suffered a single side effect at all. Not even any tiredness. Infact I feel more energised than ever, though this could be due to the slump that is dealing with psoriasis has been lifted.
Read more HERE
HenryB wrote it's been a long time
Been a really long time since i posted last (approx 2 years...)
When I last posted I was on Acitretin and things were not going well.
About a month after my last post I was put on Methotrexate and have been on 15mg /week since then.
I can happily say that after 8-10 weeks all my patches were cleared and I have been cleared for the better part of the last two years.
So far I have had no effects from Methotrexate. Bloodworks getting done every month although that is a real pain as I loose a day's income every month for a 2 min bloodwork. (I can live with that Cool )
I'd just like to say, Psoriasis can be controlled. Just stick with it and you'll get there. It might be a painful, frustrating process but something will work for you.
Read more HERE
fingers has updated his thread
Hi folks! Well I returned to my Dermatologist after 6 months!! and he couldn't believe how my psoriasis hasn't flared up much!!
I have been showering with an olive oil soap and using coconut oil,
I do use Estella 3 times a week but am needing it less and less, he said I wouldn't get accepted for biological treatment with my current coverage!!...so I said happy days!!!!....I have another appointment after Christmas to see if it stays away!! ....so all in all........I'm in a good place!!!
Read more HERE