Psoriasis... Psoriatic arthritis..... Ankylosing spondylitis..... Please help

[Gefm]

Get ready for a long post 😂

I'm new here, I'm just a bit lost at the moment to be honest.

I've been diagnosed with eczema all my life, however last month I got diagnosed with ankylosing spondylitis, shortly after this I had the worst flare of "eczema" on my hands and wrists that I've ever had. I went to see my rheumatologist last week who has now said it isn't eczema it's psoriasis.. The one that blisters. I also have been diagnosed with psoriatic arthrits in my hands and fingers. My skin is the worst its ever been it feels like I have burns all down my arms and hands 😔 I rang the gp today as I think it's infected but they said it wasn't an emergency so they couldn't see me today.

Another thing I would like advice on is medication, my rheumatologist has prescribed me adalimumab injections.... I haven't taken them yet as I'm too scared, I done the wrong thing and googled it which returned many reviews saying it was a poison and people developed cancer 😱 so now im terrified to take it. I'm only 29, I don't want to end up with some horrible illness because of those injections.

I would really appreciate any advice or personal experiences

Thank you

[Gefm]

Thank you so much for your reply!

Honestly I can't knock the rheumatologist, I've had these problems about 9 years and got told of my previous rheumatologist that I had fibromyalgia and nothing else.... For a long time. I knew there was something up so i changed to the person I'm seeing now and on the first appointment he had me in for MRIs and other tests and it was the third time I seen himast week and I was diagnosed, he's been brilliant!

The drugs are really scaring me to be honest I'm going to see my GP on Thursday so I'm armed with questions 😂

Thank you again for your reply

[Batty1]

Humira has been around the longest of all biologics (25yrs) I think and yes it can cause cancer although I believe the risk is very small.

I have had psoriasis for (45yrs) Im 50 and I have only had psoriatic arthritis for the past (4) years that attacks the tendons in my hips,knees and feet not so much the actual bones (joints), My Rheumatologist says I probably had PSA forever just not debilitating as these past 4 years (diagnosed with thyroid cancer 4yrs ago). Unrelated to biologics at the time of Thyroidectomy I was on Stelara.

You have to outweigh the Pros with the Cons when it comes to Psoriasis/PSA and using Biological injections.... Psoriasis will never GO AWAY they might take a vacation for a while if your lucky (I never was) PSA could also just go away for how long who knows. If the PSA is left untreated how much damage is being created? Again won’t know until the damage is done and I bet you had this going on for a long time unbeknownst to you that it was happening. Not all Biologics work for everyone and might have to jump around.... DO NOT stop them abruptly could have major PSA backlash! Learnt this the hard way.

I have been injecting Cosentyx monthly for 2yrs as well as have blood test done every 6 months and I have not suffered any bad side effects (cancer) from them (reality) people with Psoriasis can end up with cancer/heart disease and other things naturally and reading these drug pamphlets you get can make your skin crawl... they list everything!

I think its smart with anything drug related to remember that all MAGIC comes with a price and so does not treating your condition!

[Gefm in reply to Batty1]

Thank you so much for your reply it was really helpful and very appreciated ☺

I have a phone call with the nurse next week so hopefully that will help my decision ☺

[chunkypie]

Hi i've used two Biologics, One part of a trial for 5 years (tofacitinib) and one injection Cosentyx (secukinumab) that ive been on for about 2 years and have never had any problems. The only problem i ever had was with Cyclosporine, Would never touch that again.

[Gefm in reply to chunkypie]

Thank you

I haven't heard of that last one you mentioned but will definitely be approaching any of them with caution lol you hear so many horror stories 😔

[chunkypie in reply to Gefm]

Like all reviews whether it's for hotels or medication. Most people are more likely to post a bad review than a good one

[Gefm in reply to chunkypie]

You're very correct!

[Gefm in reply to Gefm]

You don't by any chance know anything about the erythrodermic psoriasis do you?

[Batty1 in reply to Gefm]

Actually after reading the following and seeing photo this is probably what me and my late father had but I was never told I had one kind of Psoriasis over another kind and that’s probably because most doctors including dermatologist don’t know too much about Psoriasis and the biggest issue with Psoriasis and psoriatic arthritis is EVERYONE disease is pretty different in how is messes with you... I have what is called Kobener’s Phenomenon which causes Psoriasis to breakout after you receive and (injury to skin).

Below is the information I found:

Erythrodermic Psoriasis

Image of Erythrodermic PsoriasisErythrodermic [eh-REETH-ro-der-mik] psoriasis is a particularly inflammatory form of psoriasis that often affects most of the body surface. It may occur in association with von Zumbusch pustular psoriasis. It is a rare type of psoriasis, occurring once or more during the lifetime of 3 percent of people who have psoriasis. It generally appears on people who have unstable plaque psoriasis. This means the lesions are not clearly defined. Widespread, fiery redness and exfoliation of the skin characterize this form. Severe itching and pain often accompanies it.

Individuals having an erythrodermic psoriasis flare should see a doctor immediately. This form of psoriasis can be life-threatening.

Symptoms

Severe redness and shedding of skin over a large area of the body

Exfoliation often occurs in large "sheets" instead of smaller scales

Skin looks as if it has been burned

Heart rate increases

Severe itching and pain

Body temperature goes up and down, especially on very hot or cold days

Erythrodermic psoriasis "throws off" the body's chemistry. This causes protein and fluid loss that can lead to severe illness. Edema (swelling from fluid retention), especially around the ankles, may develop, along with infection. The body may not be able to maintain its temperature. This can produce shivering episodes. Erythrodermic psoriasis also can bring on pneumonia and congestive heart failure. People with severe cases often require hospitalization. Erythrodermic psoriasis can occur abruptly at the first signs of psoriasis or it can come on gradually in people with plaque psoriasis. The reason erythrodermic psoriasis appears is not understood. However, there are some known triggers.

Triggers

Abrupt withdrawal of systemic treatment

Severe sunburn

Allergic, drug-induced rash that brings on the Koebner phenomenon (a tendency for psoriasis to appear on the site of skin injuries)

Use of systemic steroids (cortisone)

Infection

Emotional stress

Alcoholism

If YOU have this type of Psoriasis READ the TRIGGERs ... Do you have this type? I believe anyone who has untreated Psoriasis could look super red and inflamed (I was super inflamed when I started Stelara) This is only reason I did biologics I hurt just putting on clothing my skin was giant patches of inflamed raw skin!

[chunkypie in reply to Gefm]

Just to say I start hyrimoz sunday and not worried at al 🙂 I've heard of pustular psoriasis but dont know a lot about of that's the same thing. All I can say is the Biologics I've been on have always helped. The tofacitinib completely cleared me and cosentxy was about 70% clear. Good luck with your meds.

[Tabithab]

Hi. I’m sorry you’re having such an awful time of it. I’m almost 57, and have had psoriasis since boom I was 7 and psoriatic arthritis since 2001. Then Antiphospholipid Antibody Syndrome and mutated genes too. I don’t like having anything mutant. 🙄

Don’t fear the Biologic drugs. The first one you try may not be the right one for you. But hopefully you and your Dr can find it.

You needed to see find a Dermatologist who specializes in Psoriasis. The type of APS you’re talking about is Pustular. I just got over the last time My hands and feet broke out in that. It’s not all gone.

If you’re u are in DFW area of Texas then you could see Dr Allen a Menter at Baylor he’s my Dr. not all dermatologists are current or even knowledgeable about Psoriasis.

One important thing to remember about Palmer Plantar Ps is that you must get that skin moist and keep it that way. Never let it dry out or it then cracks and bleeds.

Here’s a good way to get start-

Lewis Technique you will need - white cotton gloves if you’re broken out on hands and Or white cotton sport (like No See socks and any other pair of socks that will be bigger and taller than the white cotton ones. And for hands you’ll need a pair of surgical gloves or similar. And ointment that you’re using on hands /feet

And one more item- you will need 2 plastic bags that fit on your feet( I’m a women’s 9-1/2 shoe and have used large food storage bags for years- the kind that come with twist ties. Recently I cut the zippers odd two Hefty gallon freezer bags. I like them because They don’t slide around as much.

Now your ready- I pull a stool up to side of my bath tub (no more enjoying nice warm baths - I’ve had the top two layers of skin come off from the knees down on both legs 3 times in the past 20 months. All 3 after soaking in bath.

But feet /hands -are hard to get under control and to say bye to. Soak hands I. Comfortably warm but not hot hot water. You could put oils in water or colloidal oatmeal or Epsom salts. Have other items near by. Soak hands /feet until the plaques are Softened. If you don’t have cm ulcers or infections in these parts you can gently scrub the area.

I’m going to tell the rest as if you have all four paws affected. 😉. I take out one foot and gently pat dry q bit. Now slather on your cortisone. Ointment or if you’re on a break use a good lotion and then cover it with Vaseline. I find it holds in a lot of moisture and it’s not that $$$$. Now wet the white cotton sport socks in warm water , wring our excess water and without disturbing the goo on the bottom of vour foot, stretch open the wet sock and put it on. Follow with plastic bag and then the bigger sock.

Repeat with your other foot. Now soak your hands the same way, blot, apply topical medicine or anything moisturizing& tip with Vaseline too if you like. Now wet and wring out cotton gloves. Putting them on so they won’t remove all the medicine. Then put medical gloves Over the cotton ones.

Some only leave These on for a few hours. I once was very very fatigued.& left them on 2 days. I got yeast infections on my skin. Burns too. Lol but I’ve learned a lot. 😁

Now, I like to do this in the evening and sleep with iT on. Next morning remove it. I’ve also had Dr do this to me from knee down. But he used a gauze that’s medicated and infused with zinc , then covers in ACE bandages. He put Clobetasol ointment on legs first then the wraps. When he’s done with all the layers THEN he tells me I’m to keep on for the ne week! Lol. But it really helped. The process is called an Unna Boot.

Always keep all the CB psoriasis moist with your meds and between doses use lotions (Dollar Tree sells Dermasil Lotion for $1 - it’s $8 and up everywhere else and I have lived it since the 70’s. Get the regular dry skin treatment) also Vaseline. I often slather that on my hands and put surgical gloves over it. Messes up nail polish but not that awful. Better than split open skin.

Sorry this is so long.