Hello everyone!

What brand of lotion works for you? I've tried countless natural brands (including oatmeal variants, Mother of all Creams, etc.) and every single one feels like a chemical burn for about an hour after applying.

Thoughts?

Hello All,

So glad there is a board with others to empathize. A little background...

I contracted Psoriasis during Desert Storm in 1990 from CARC and depleted uranium and was sick with a 103.4 degree temperature for two weeks. I was hospitalized and flown to Weisbaden, Germany for observation. My military medical record concludes with "...probable bacterial syndrome". Needless to say, I've had an open case with the VA for over 25 years and have been denied service connection five times.

With that stated, I've felt my "Psoriasis" has been misdiagnosed and unique. The reason is due to all the "successful" therapies and medications I've taken over three decades ranging from: natural therapies, Otezla, Stelara, Humira, Enbrel, Corticosteroids and various light therapies. None have been successful and have resulted in unique side effects (e.g. psoriatic "doughnuts" on my skin, extreme behavioral changes, etc.). My "coverage" has ranged from 20% to 90% and is asymmetric.

My latest visit to the doctor resulted in prescribing Cosentyx with 8 syringes as a "loading dose".

I am curious if anyone has experiences these strange symptoms, had similar side effects or contracted Psoriasis in the military. Also, what should I expect from taking Cosentyx.

Thanks for the advice and I welcome your comments.

Hi all

Looking for some advice please.
I'm recently diagnosed with psoriasis.. I'm experiencing swelling of my legs mainly where's the bigger patches are, and my feet. I do have hypertension and I'm on losartan and a diuretic. My doc said my blood pressure meds is not the cause of the swelling as the class of drugs it is, it shouldn't give me that side effect.  Doc said it's the inflammation of the psoriasis? Not sure please help.

I think i have severe facial Psoriasis (around both eyes) . Derm thinks it might be periorificial dermatitis , shes put me on anti-bios. I've my doubts 

10th day of taking Anti-bios and its getting worse

it burns and feels like its on fire at times 

Anyone any experience with this ? 

Help appreciated

It is clear that one of the causes of Psoriasis is a genetic dependency of one of your ancestors and that in that cases it is very wel possible that siblings or other family also can have Psoriasis (or Psoriatic Arthritis of course), be it brothers or sisters, or nephews, nieces  and cousins.

But... it is a bit unclear if this is the only cause. Or that there would always be a genetic component necessary for getting Psoriasis.
As Fred always says: “Anyone can get Psoriasis.”, and I myself think that there are more causes, at least bacteriological causes, that make it possible that you will get Psoriasis  at a certain moment in time.

I wonder how this is with the members of Psoriasisclub. Do you have ancestors or siblings or perhaps children who also have Psoriasis? Or do you think there is no genetic cause involved in your Psoriasis?

Therefore I made a poll, where you can tick one or more possible relations or no relation at all.

I hope you like this approach and maybe it will tell us something. I have set the time limit of the poll to 30 days which should give most of the regular visiting members a possibility to vote.


Caroline

Hi all

My name is liezel, i live in cape town, South Africa.I have just been diagnosed with psoriasis. Honestly I don't even know what kind I have. The dermatologist I'm seeing is treating me with creams that i honestly feel is not working. I'm mostly covered in hot red spots on my legs and thighs.. I'm currently suffering from intense burning that is non stop. I'm feeling extremely overwhelmed at the moment as there is a world of information out there and I honestly don't know where to begin. 
But thank you for all the posts I read it helps a lot. I don't think people know how this disease affects you emotionally. 
Being a mom and having to cope with this while still being productive at work and a great mom is hard. 
I'm hoping that you guys can give me some tips on how to cope.

Thanks 
Liezel

This study looked at the. impact of having family history of psoriasis or psoriatic arthritis (PsA) on psoriatic disease.

Quote:

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Objective:
Psoriatic arthritis (PsA) has a genetic background. Approximately 40% of patients have a family history of psoriasis or PsA, which may affect disease features. The aim of this study was to assess the effects of family history of psoriasis and PsA on disease phenotypes.

Methods:
The data from 1393 patients recruited in the longitudinal, multicenter Psoriatic Arthritis‐International Database (PsArt‐ID) were analyzed. The effects of family history of psoriasis and/or PsA on characteristics of psoriasis and PsA were investigated using logistic regression.

Results:
Four hundred‐forty‐four (31.9%) of patients had family history for psoriasis and/or PsA. These patients were more frequently women, had earlier onset of psoriasis, more frequent nail disease, enthesitis, deformities and less frequently achieved minimal disease activity (MDA). Among 444, 335 patients only had psoriasis in their family, 74 had PsA and 35 patients were not clear therefore excluded from further analysis. In multivariate analysis, family history of psoriasis was associated with younger onset of psoriasis (OR: 0.976) and presence of enthesitis (OR: 1.931) whereas family history of PsA was associated with lower risk of plaque psoriasis (OR: 0.417) and higher risk for deformities (OR: 2.557). Family history of PsA vs psoriasis had increased risk for deformities (OR: 2.143) and lower risk for plaque psoriasis (OR: 0.324).

Conclusions:
Family history of psoriasis and PsA has impacts on skin phenotypes, musculoskeletal features and disease severity. The link between family history of psoriasis/PsA and pustular/plaque phenotypes may point out to a different genetic background and pathogenic mechanisms in these subsets.

This study suggests the monitoring of distinct T cell subsets rather than just absolute lymphocyte counts may provide more meaningful insights into both the treatment safety and efficacy of Fumaric acid esters (FAEs) especially in psoriasis patients of middle to older age.

Quote:

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Background:
Fumaric acid esters (FAEs) are used to treat psoriasis and are known to cause lymphopenia in roughly 60% of the patients. Much remains to be elucidated about the biological effects of FAEs on lymphocytes.

Objective:
To evaluate the influence of long‐term FAE (Fumaderm®) treatment on peripheral blood CD4+ and CD8+ T cells, CD19+ B cells and CD56+ natural killer (NK) cells in psoriasis.

Methods:
In this single‐centre retrospective observational subcohort study, we obtained leucocyte and lymphocyte subset counts before initiating FAE therapy in 371 psoriasis patients (mean age, 47.8 years; 63.3% males) and monitored them during treatment (mean treatment duration, 2.9 years). Multiparametric flow cytometry was used for immunophenotyping.

Results:
FAEs significantly reduced the numbers of CD4+ T, CD8+ T, CD19+ B, and CD56+ NK cells. Among lymphocyte subsets, the mean percentage reduction from baseline was always highest for CD8+ T cells, with a peak of 55.7% after 2 years of therapy. The risk of T cell lymphopenia increased significantly with the age of the psoriasis patients at the time that FAE therapy was initiated. It was significantly decreased for the combination therapy with methotrexate and folic acid (vitamin B9) supplementation. Supporting evidence was found suggesting that T cell lymphopenia enhances the effectiveness of FAE therapy.

Conclusions:
Monitoring distinct T cell subsets rather than just absolute lymphocyte counts may provide more meaningful insights into both the FAE treatment safety and efficacy. We therefore suggest optimising pharmacovigilance by additionally monitoring CD4+ and CD8+ T cell counts at regular intervals, especially in patients of middle to older age. Thus, further prospective studies are needed to establish evidence‐based recommendations to guide dermatologists in the management of psoriasis patients who are taking FAEs and who develop low absolute T cell counts.

Do any of our members donate blood ?

I was talking with Mrs Fred about donating blood and the fact that we have never been able to donate blood in France. As far as I know we still can not donate because we lived in the UK between 1980 to 1996 and they wanted to remove the risk of Mad Cow. (No I'm not getting into the politics of it all)

I also said that I doubt I would be able to donate blood anyway as I have been on Bio's for around 12 years, I also don't think anyone taking Oral or Bio treatments for psoriasis can donate. But it got me thinking and I don't know if any of our members do donate blood.

Thoughts ?

Hi all,

I hope all is well. After the initial saga of trying to source Skilarence privately, I found that SuperDrug stocks it at roughly half the price of anywhere else, so decided to give it a shot in the first instance.

So far so good, with limited side effects, although last night I did get a hot flush in the middle of the night which woke me up as it was uncomfortable against my pillow. I was wondering if anybody had any tips for either heading these off or managing them once they hit? It didn’t last more than about 20 minutes but It wasn’t a pleasant experience!

This study suggests improved Psoriatic Arthritis (PsA) screening is needed in patients with Psoriasis (PsO)

Quote:

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Background:
Despite increasing awareness of the disease, rates of undiagnosed psoriatic arthritis (PsA) are high in patients with psoriasis (PsO). The validated Psoriasis Epidemiology Screening Tool (PEST) is a 5‐item questionnaire developed to help identify PsA at an early stage.

Objectives:
To assess the risk of possible undiagnosed PsA among patients with PsO and characterize patients based on PEST scores.

Methods:
This study included all patients enrolled in the Corrona Psoriasis Registry with data on all 5 PEST questions. Demographics, clinical characteristics, and patient‐reported outcomes were compared in Corrona Psoriasis Registry patients with PEST scores ≥ 3 and < 3 using t‐tests for continuous variables and chi‐squared tests for categorical variables; scores ≥ 3 may indicate PsA.

Results:
Of 1516 patients with PsO, 904 did not have dermatologist‐reported PsA; 112 of these 904 patients (12.4%) scored ≥ 3 and were significantly older, female, less likely to be working, and had higher BMI than patients with scores < 3. They also had significantly longer PsO duration, were more likely to have nail PsO, and had worse health status, pain, fatigue, Dermatology Life Quality Index, and activity impairment.

Conclusions:
Improved PsA screening is needed in patients with PsO because the validated PEST identified over one‐tenth of registry patients who were not noted to have PsA as having scores ≥ 3, who could have had undiagnosed PsA. Appropriate, earlier care is important because these patients were more likely to have nail PsO, worse health‐related quality of life, and worse activity impairment.

Hey all, never been in anything like this before, got diognosed with psoriasis in 2002 but recently having a bad breakout, sick of itching getting me down and just wanted to meet and chat to people who understand. I'm Carla by the way x

This study looked at the efficacy, safety, and effective dosage of 308‐nm excimer light in the treatment of scalp psoriasis.

Quote:

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Background:
Scalp psoriasis is a major therapeutic challenge due to the hindrance caused by hair. Treatment with the 308‐nm excimer lamp is purported to provide many benefits over conventional phototherapy. This retrospective study evaluates the efficacy, safety, and effective dosage of 308‐nm excimer light in the treatment of scalp psoriasis.

Methods:
We retrospectively reviewed the medical records of patients with scalp psoriasis who received treatment with 308‐nm excimer light. Clinical and epidemiological data as well as details regarding treatment were statistically analyzed to determine the treatment outcomes.

Results:
Twenty patients with scalp psoriasis were included in the study. Their mean age was 47.45 ± 17.93 years. Eleven patients responded to treatment at the end of 10 sessions. The median baseline Psoriatic Scalp Severity Index (PSSI) was 12 (range, 3‐32). At the end of the protocol, the median PSSI was 4.5 (range, 0‐24), indicating a statistically significant reduction (P<0.001). Common adverse effects included erythema, irritation, and desquamation.

Conclusion:
The 308‐nm excimer light appears to be an effective and safe modality that requires short treatment time. The modality could be considered as an alternative or adjuvant treatment for scalp psoriasis.

Hello,

It took 21 years to get almost rid of my scalp psoriasis. Very slight traces remain, but overall looks very good, and I do not see it coming back. I have now seen 15 days of complete clearance! This is incredible news for me personally. So I want to share what I actually did to get rid of this condition. Please note I am free and open to questions and I will try my best to answer as many people as possible.

First of all let me state that my scalp psoriasis was visually not very scary. Most of it was hidden behind my hairline. However, slight traces could be seen and if you move the hair aside you could see very serious lesions. So here are my point-wise notes:

1. Never Tried Any Meds (Except Once)
I have never tried any meds except just once 18 years ago for just 2 times, and I noticed that I did not react well to it. I saw slight bleeding on site where I applied a topical cream. Can't remember the name. And I also lost hair at that site. I was quite worried and discontinued the medication immediately. It took 3 years to get rid of the lost hair patch. I had to work very hard to recover from this.

2. Digestion
You must improve your digestion. You must be able to digest all food you eat! 

3. Elimination
You must be able to eliminate well.

4. Sugar
Avoid sugar (especially refined sugar). If you must have sugar, use only brown sugar and not more than 2 spoons a day. Natural sugar from fruits is fine. However no corn syrups.

5. Dental Health
This is very important. By the time you complete reading this article, you will realize that nothing special needs to be done, as you will have zero dental issues if you follow all the points. However dental health does play a significant role. The germs in your gums and tooth plaque travel to your intestines and body and circulate in your blood.

6. Metabolism
You must have a healthy metabolic cycle. Never eat when you are not hungry! You must be able to burn what you ingest, not just digest it. High metabolism will give you more energy with less food, and you will feel more hungry.

7. Diet
Eat less food, and do not over drink water! It's important that you eat less food. If you are not hungry for dinner you must skip dinner and instead eat a fruit or yogurt. Consume fewer grains but do not eliminate them completely! Try Indian lentils over wheat. Rice is more acceptable than wheat. But Indian lentils and beans are best. 

8. Probiotics
You should make natural yogurt at home (home-made) and eat it daily.

9. Exercise
You should do a light jog of 3 miles every morning, about 5500 steps or 3 miles approximately. You must do a total of 10K steps every single day. Your average must be above 10K.

10. Yogic breathing or Pranayama
Every morning on an empty stomach, perform atleast 15 minutes of yogic breathing. Check out Kapalbhati or Anulom Vilom on Youtube.

11. Avoid Processed Food
Avoid processed food (usually dead food), such as muffins, pastries, cookies, donuts, chips etc. The stuff usually in bakeries and packets. Minimize bread, eat very little. Avoid frozen food. Eat only freshly made food. Prefer gourmet food over cold foods.

12. Vegetarian
Try to become a vegetarian. But I do not think this plays a very big role as long as you are not eating processed food.

13. Weight and BMI
You must reduce your weight and BMI. Keep a BMI of less than 23. This is hard but doable. You an avoid sugars and fats. You may be dieting, but you must reduce your BMI below 23.

I had about 70% of above done right, but it wasn't unfortunately enough. I had to get all 13 things correct, before I saw the results. No 5 and 13 were most important.

(Sat-19-01-2019, 02:00 AM)Green0wl979 Wrote: Best of luck to you Martin! I just started my first dose today after being on Humira for 2 years with spotty success. Hope you see results soon!

hi all. started my new drug yesterday. cosentyx after stelara had failed. had 2 injections yesterday. 2 injections next monday and so on for 5 weeks. then its one injection per month. feel ok apart from feeling like im getting a cold. will update on my journey

Hi there,
I'm new here - hello!
Wondering if anyone can help. 
After I go for a run, +7miles, the psoriasis spots on my back on stomach flare up. 
I'm assuming it is from the irritation from the clothing mixed with the sweat from exercising. Does anybody know that the best clothing is for running long distance as a Psoriasis suffer?
Thank you!
mjb

Happy new year all. 100% clear skin finally after 12 years , after only 2 months of treatment.
Thank you Novartis!

This French study looked at the dermatologist's position and the patient's preoccupations as to psoriasis and pregnancy.

Quote:

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Background:
While some information on psoriasis impact on pregnancy is available, very little is known on the preoccupations of women afflicted by the disease or on the dermatologists’ (D) positioning as to psoriasis and pregnancy. The “Objectifs Peau” project demonstrated a 4.7% prevalence of psoriasis in women aged 18‐45 years in France.

Objective:
This project sought to further address these issues in view of a targeted action plan.

Methods:
A questionnaire was made available to 361 D of different types.

Results:
Overall, 152 D answered the questionnaire, 50.7% working in private or mixed practice and 49.3% in hospitals, with 63% females (DF) and 37% males (DM). Over the last 3 months, the mean percentage of women of child‐bearing age seen by these D was 28.6%. The main issue addressed by D upon psoriasis diagnosis was the patient's wish to become pregnant in the short‐term (84%), while the compatibility of drug treatment with pregnancy was the issue prioritized by patients (64%). Among DM and DF, 46% and 29% reported having been confronted with an unplanned pregnancy, with their reaction mainly dependent on the treatment taken in 66%. Regarding follow‐up, 26% D declared having shared their decision‐making with gynecologists, while 56% considered the first pregnancy trimester to be the highest risk period. Only 28% D were familiar with existing recommendations, with only 21% of them considering them appropriate.

Conclusion:
Overall, 26.2% of French psoriasis women are of child‐bearing potential, in line with our dataset (28.6%). Only 56% D considered the 1st pregnancy trimester to be the highest risk period, with only one‐third familiar with existing recommendations. The gap between recommendations and actual practices must be addressed through policies that take women's preoccupations better into account.

I've been diagnosed with Psoriasis and Psoriatic Arthritis for just under three years.
Started off innocently, and took over a year to actually grab my attention. 
Mid 2017 until Mid 2018 - All the first off meds such as Methotrexate etc...
Nothing with any results.
Beginning of 2018 the Plaque growth jumped exponentially.

No decent dermatologists in my country.
Had to find out about biologics on my own. 
Went to the US to see a dermatologist. Prices we're absurdly high.
Was able to find Cosentyx marketed as Scapho in India.
Still extremely expensive but much cheaper than Cosentyx from the US.

Planned on starting Cosentyx in October however;
Did a TB test; came back positive;
Turned out i had a mycobacteria not TB. 
Currently on isoniazid and wasn't allowed to start Scapho until i had been on isoniazid for atleast two months.

Just had my 5th loading dose of Scapho last week.
Seeing decent results but not as good as some of the posts i had been reading on.
I'm on Scapho without any dermatologic supervision.

My Plaque psoriasis is extreme, Scapho has only cleared around 15%.
Now that loading is over, i want to use it bi- monthly.

Has anyone here ever deterred from the standard dosage?

Cheers,