Psoriasis, My life.

[jax553]

Hi, I have had this rarer type of pustular psoriasis and didn't know until recently it was rare, and it is a real nightmare, I have been subjected to abuse because when people look at your hands they don't want to touch you, Even some of the Medical staff, has given me a hard time, because of it, I wanted to learn more, and decided to join a research branch, to see more of what this disease does, My life has been one long nightmare, and when My Psoriasis was really bad my hands were clawed and so stiff and sore I could not move them, But now I have heard of Many different Medications to take and I want into that, So Do i battle with my Dermatologist or research to get this Medication?

[Hidden]

Hi jax553,

You are not alone! You may ask for a referral to a Rheumatologist as well. Have you been diagnosed with pustular psoriasis by a Dermatologist?

[jax553 in reply to Hidden]

Hi Chinchi, yes I have, I have had numerous meds Acitretin, Methotrexate, Puva, and many many topical cream none of which worked, I was put onto Sulphasalazine, and was taking 6 a day, but I did not like how they made my skin look yellow, and decided to leave them off, I think they are mainly for the Psoriatic Arthritis too.

[Seahorse02]

@Jax553,

Why do have to “battle” your dermatologist?

I have Pustular Psoriatic Arthritis as well. I wear some type of gloves (frilly, sun protective, or plain white cotton) when it’s flaring & I have to go out. Questions about the gloves are easy - I just say I have a rare skin disorder, but most times people won’t even say anything if I have them on. White cotton would work for a man as well. They can be purchased at drugstores.

[jax553 in reply to Seahorse02]

Hi, Seahorse, I went to Dermatology, this very morning, and she insists I have dry skin, I want to throttle her, I asked her why is it I have been diagnosed with this rare disease, and not told, I asked her, why if there is nothing more you can do, am I thrown away in a corner and why is it when up and coming drugs are not an option to me, right now, She went through a list of drugs all of which I have tried, none of which did anything at all, She then asked about the light treatment, I told her I had it 4 times and 4 times I was burnt, I am so fed up, I want to scream.

[Hidden in reply to jax553]

Hi again!

Could you ask for a referral to a Rheumatologist? Are you having any signs of arthritis?

Where exactly have you noticed the yellow colour whilst taking sulphasalazine?

I don’t have any signs of Psoriasis on my hands but the pain is so bad I’m thinking of wearing gloves at night because they seem to relieve the pain to some extent.

A second doctor opinion is always a good idea.

🤗

[jax553 in reply to Hidden]

Hi, Chinchi, My hands were going yellow, my clothes were going yellow, I am already under a Rheumatologist, I have Pustular Psoriasis on my hands and feet, It is so very painful when the blisters start coming out, I described it as 1000 hot needles going into my body. at once. I have also been blessed with the psoriatic Arthritis too, along with the osteoarthritis I have, I have large nodules forming on my hands and feet, but am told that PSA is not eroding, my bones, So I take it as non-erosive Psoriatic Arthritis, I have found that just lately I am getting more problems trying to do things like hold a cup of tea, and doing my chores, I cannot seem to get myself up and going, all I want to do is rest, [ who knows, perhaps I have lazyitis to go with it]

[Hidden in reply to jax553]

I have lazyitis too 😁 thanks for answering. What about menopause?

[jax553 in reply to Hidden]

Hi, been there done that at age 32, Had hysterectomy, but no HRT until in my fifties when I wanted to kill everyone who crossed along my sight, My GP said Oh Dear your hormones are really off the Scale, Thanks, Doc, Then I was Diagnosed with Hip Arthritis, which was quite mild, from there it just exploded into a whole body pain, with Osteoarthritis, and PS Arthritis, I am approaching 65, and would love to go to the shops on my own, and would like to be independent again, Guess what Sherlock no such thing. They Didn't believe me and said it was Fibromyalgia until I demanded a second opinion and they found I was being eaten away with Osteoarthritis, So who is out there to help us in our need.?

[Hidden in reply to jax553]

Oh dear, I've seen that film before... menopause is not just a phase, it's a serious health condition that should be top priority.

You had hysterectomy but have kept your ovaries, right? What type of HRT and for how long?

There are recent studies showing that hysterectomy should be avoided unless absolutely necessary, guess why? Bone issues! Even if you keep your ovaries.

[jax553 in reply to Hidden]

Hi, Chinchi, Yes I think I was the only one that slipped through their net, I had a very bad breathing problem after I worked on a Kidney ward, I lost over a third of my lung capacity, and was deemed not fit, At 32 I was thrown on the scrapheap, and fed Bull Shit, I had to take so many steroids I became Diabetic, I am not supposed to be on any steroids I now find my inhalers are in fact steroid, I am now an unstable diabetic again, and cannot have meds until I have this test to determine If my Adrenal Glands are working, Because You probably will not believe this, but, I take no meds for diabetes but am still having hypos? Get that, This is hormonal, and I do believe that because my hormones are not behaving quite as they are supposed to, I am Not pregnant, {unless I am The Immaculate conception} Have no Uterus, to bear a babe, so why are my hormones up? I may as well give up.

[Rosedail]

I feel really bad for you!!! It seems you are trying to find the right hormonal balance (with an Endocrinologist?), but also are diabetic and have one or more autoimmune diseases including the painful pustular psoriasis.

Have you asked your Rheumatologist to try you on one of the biologics like Humira or Embrel and are those the type of medications you want to try? (My apologies if one of the meds you listed was a biologic that I did not recognize.) Here in the US they are very expensive at about $5,000 a month, but with all the painful symptoms you listed I would think you would be a candidate to have those covered. Perhaps if you wrote a long list of all your symptoms and diagnosis, when they started, and all the meds you have already tried, some Rheumie might finally listen to you. (On the other hand, I am not a clinician and I have no idea if your other health conditions would cause your physicians to not prescribe the biologic meds, fearing an adverse health event.) You have my best wishes for some sort of relief from all your pain. It is only natural that you would want to be independent again and I very much hope that you achieve that.

As an aside, I too burn so easily that the clinicians are astounded. I've given up light treatment for my psoriasis, although I try to get outside every day for walks. Also cutting out breads, pasta and baked goods (only special occasions) has helped quite of us over on the PMR support group. PMR is another autoimmune disease that I have. My best to you!

[jax553]

Hi, Rosedail, Thank You for your kindness, I nearly cried when I read it, I have asked to go onto something better, but all they do is offer me what I have taken before, They did not work, along with messing up my liver and kidneys, I am being referred, to another Dermatologist, who is also head of Research, so I am hoping I stand a better chance, I have yet another batch of blisters, up and running riot on my hands and feet, It certainly looks like I will still have this disease, when I pass away, at least on the other side of the bridge there is no pain and no sickness, and until then, Nothing.

[Patient0]

Have you tried diet changes for SIBO or SIFO?

jjvirgin.com/are-you-sifo-s...

I am not recommending the diet on that website as I haven't tried it but it does have a simple explanation of the two conditions.

I do have psoriasis but very mild and also diagnosed with arthritis last year. I have managed to control with diet changes and I am just finding more and more stories like this where diet change has worked.

I am sure you have spent a lot of time trying different things. At least rule it out if you haven't already.

Good luck xx

[jax553 in reply to Patient0]

Hi, Thanks for the heads up, now there you have a major problem, Diet, I eat very little, Maybe 1 slice of bread and butter with a Banana, or egg, or just a bowl of cereal, I have no appetite, haven't for years, Don't feel hungry, never fancy anything, I have a block set up somewhere in my mind, that prevents me from eating any meal, My husband says I am Anorexic, But I disagree, I had a Tumour removed from a Saliva Gland, and have had no appetite since.