Hello.. I've had psoriasis for 15 years starting from the age of 10. Its progressively gotten worse now covering roughly 45% of my body and over half of my face. I've gone through everything.. I've been smothered in tar and wrapped with plastic wrap, horrifically burned by the UVB booth, was on topical steroids for so long they stopped working but my body went through withdrawal when I stopped applying them... but I completely stopped trying a few months ago when the doctors told me the only thing that could help me now were chemo drugs. They want to give me shots to slow down cell production. Yeah, sounds great, except of the side effects of the drug that make me (and my mother, a hem/onc nurse that actually cringed when I told her their recommendation)
I have depression and anxiety brought on by an entire life of psoriasis. Recently it got even worse due to my separation (a big part of which was caused my ever growing psoriasis) Even though I just turned 25 I wouldn't even leave my home at all if it weren't for my two kids. This right here is me trying to help myself for their sake because lately I find it hard enough just to roll out of bed in the morning.. If I can make myself go to bed in the first place.
I can see that I'm about to hit a wall in a serious way so I'm asking for help before I get there.
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Mahnamahna
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Hello and welcome, I know how you feel except my Ps arrived with me at my birth so I've had a long innings reaching the ripe age of 62. Yes I've had all the treatment that is available and tried some 'funny' ones and it's not gone away. I get very anxious, panic attacks, stressed and have had depression. So nothing new there, we are both in the same boat but how do we deal with it?
I presume the chemo drugs that your talking about is Mtx = methotrexate, if I'm correct then you will start off on a low dosage to begin with before gradually moving to a higher dose, this will be the day of your choosing. Then on the rest of the week you will take Folic Acid to help you, but never on your Mtx day.
I took this drug at the start of my PsA journey and it petrified me to think what I was doing to my body, but what you have to remind yourself is that this drug is given to chemo patients but in a MUCH HIGHER dosage. You will only have a small amount by comparison. Whilst taking it I found that for the very first time in my whole life I was free of any Ps, that in itsself was very liberating!
So do take the plunge if you can, we will be here to hold your hand and take your rants. And if you don't want everyone to see your post and only those that are on this site then hit the privacy key at the end of the post then it will be hidden from public view. I tend to use that button most of the time.
As to your feelings of depression, have you mentioned any of this to your GP as they can refer you to get cognitive counselling where your given the tools to help you through your bouts. I took advantage of it and it's helped me, so much so that if I see my GP now with it he knows I'm really floundering and can't get myself out of it.
I hope this piece has helped you and it's not too long, I hope you feel better soon.
Thank you for the kind reply. I've gone for counseling but didn't find it helped me much. I find I get more out of talking with others that have psoriasis.
Yes, it is methyltextrate they want to put me on. They had me do the blood work, chest X-ray, and the whole exam. I realize it isn't the same dose as for cancer patients but I judge things on the severity of the reactions. The doctor made very sure to tell me that I physically will not be able to get pregnant, it will just abort. Also that I can't have more than a small glass of wine in a day because the medication is already hard enough on my liver.
That in itself makes me want to keep it as far from my body as possible.
Are you still taking it? How long have you been on it? I am still curious about it.. Might keep it as my very last choice if things get too bad.
Hi M, so sorry to hear you are struggling with so much at the moment. I can only give advice on what measures I have taken to keep my psoriasis, depression and anxiety manageable. We are all different and what works for one doesn't always work for another and as you already know there is no quick fix.
I have suffered with this for 28 years, got my first patches after the birth of my daughter when I was 22 so am very aware of the impact it has on our self esteem. Like many other sufferers I would cover up and wear cardigans and long skirts on the hottest of days and left swimming trips with my daughter to her dad and Nan and avoided many social events. I can't speak for everyone but I feel that psoriasis, depression and anxiety are intricately linked.
I decided to stop using steroid creams a couple of years ago, my psoriasis would come and go regardless of what I was putting on my skin, sometimes the creams worked other times they did nothing. I have also read about the effects topical steroids can have on the adrenal glands. I'm changing my diet gradually, cutting out wheat, gluten, caffeine, sugar and all processed food, the next to go is dairy. Drink lots of filtered water too.The good foods can be added back gradually when your gut has healed and your skin has cleared, it may take some time. Also if you have an instagram, facebook or youtube account follow Jon Maddison, he's inspirational, although his raw vegan diet isn't for everyone he has cleared his psoriasis through diet, too extreme for me though. Also look up Dr axe's advice on psoriasis and leaky gut, there are many supplements that may help you, probiotics, digestive enzymes, vitamin D, milk thistle, slippery elm bark, to name a few. You are not alone, there are many of us out here to offer support and guidance.
Thank you, I'll definitely look that up. I changed to a vegan lifestyle about three years ago and did notice a vast improvement. I'm having a very hard time cutting out desserts, though I know it'll be worth it because of how badly my skin reacts to too much sugar. I've always taken vit D but never tried the others. I guess I'm going shopping today!
I'm with Georje on Mtx. Your mother's response must have really given you pause for thought, I can see that. But no matter how much we respect one person's opinion I think it is important to weigh up a range of views and facts about this type of treatment.
I've been taking Mtx for quite a few years now and I am really in pretty good shape. The amounts taken are so small as to take it out of the chemo category. That's how I see it and doctors have told me that too. I also take Humira (I have PsA).
From what you describe the impact on your life is extreme. Many thousands of people take Mtx. Some get minor side effects, some get more severe side effects and some, like me, get virtually none. All should be monitored at least monthly through blood tests. These blood tests are a godsend because any adverse effects on the body are picked up so quickly. For years I've had raised ALT, a liver enzyme. As I actually seem to need Mtx to prevent severe psoriasis, the decision was made to give me a liver scan to see if the ALT levels were something or nothing. Up to a certain level they can, apparently, be of negligible importance or not, the scan was the only way to know for sure. Result: I have one tip-tip liver. Woohay! And this despite the fact that I used to enjoy a drink rather too much for decades before getting PsA.
Mtx could make a huge difference to your life. With good monitoring you should be very safe.
Thank you for sharing that. I'm definitely going to seriously consider it. I don't like taking any kind of meds so its a big struggle for me. I don't even like taking Tylenol when I have a migraine. I had two babies (one four hours, one sixteen hours) without any kind of medication or pain killer. So putting something on this level into my body on an extended regular basis terrifies me.
I was exactly the same Mahnamahna. Agonising over whether or not to take one Nurofen .... I am so not a pill-popper by nature! I think something that has influenced me is that PsA hit me very hard after probably chugging along un-diagnosed for many years. I lost a load of weight, could not stay awake for more than a few hours, could not walk or use my left arm. I recall saying quietly, trying to avoid melodrama, "I feel like I'm dying". And my very no-nonsense husband did not disagree. Seeing what PsA could do, how bad it is for the whole body, made me go for the least worst option of the drugs. When things get tough there are decisions to be made.
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Incidentally, I do realise that you are talking about psoriasis, not PsA. But I can't help wondering whether the skin disease affects the rest of us .... our emotions, our energy etc. .... just as much as PsA does if it is severe.
Forgot to mention night shades, have swapped white potatoes for sweet ones and no tomatoes, (including ketchup), aubergines or peppers. It seems like a huge loss at first but there' s so much choice out there.
Hi, it's a bummer. I developed the condition in 1989 and in Sept 1990 found myself in St Thomas' hospital for 3 weeks of intensive Coal Tar , UVB and other treatments. It was zapped, but to keep it at bay I worked with a Homeopathetic Specialist and we utilised a combination of Aromatherapy, Hypnotherapy and stress counselling...in addition to prescribed medication. And for the last 25 years I have controlled the condition. Sometimes I get lazy and it starts to return, and it takes a couple of weeks intensive work to regain control. Every so often, it finds a new way to attack, and I have to research and work to zap it..currently I am fighting it in the scalp. I have monthly counselling which is really like therapy, I am a great believer that the condition is connected to the nervous system and is linked to mood and your neurological conditioning. Its interesting to note that MY Psoriasis is most prevalent when I am happy...its almost if my defences are down and I get lazy...yet when i'm under stress and busy it's easier to control. I use Dermovate in combination with the homeopathtic stuff . Not sure if this is any help, as others have said what works for one person doesn't necessarily work for all. Good luck. J
It's worse when you're happy .... that's different! I'd say everything is better when I'm busy in a good way, i.e. with time to recover but some degree of stimulating stress.
It's just that I had inverse psoriasis, mildly but absolutely day in, day out, for 10 or more years. Then, one day, following the conclusive end of a very difficult relationship, I woke up and my armpits were clear. And I had no more psoriasis for over 20 years!
Hi Mahnamahna. I'm guessing the drug they suggested was methotrexate? I just wanted to say, I started this in February, and it has made me feel much better already. The dose they prescribe for psoriasis or psoriatic arthritis (which is what I have) is MUCH lower than the chemo dose - usually 10-25mg as opposed to >500mg/m2. The list of side effects is terrifying! I was really scared before my first dose, and prepared to feel sick, turn yellow and have my hair fall out, at least! But I was also pretty desperate, so I tried it... And I can report I have felt a little bit nauseous and pretty tired the next day... And that's it!
I would say, it is definitely worth considering seriously. Because MTX is prescribed not just to clear up your psoriasis, but also to help prevent PsA, which - if left untreated - can cause permanent joint damage. And your risk of PsA is higher, the worse your psoriasis is...
PsA often happens invisibly - you get aches and pains, but often not even much swelling - until suddenly one day you need a hip replacement or something! That's what happened to me: my (usually) mild flexural psoriasis and my PsA were unrecognised for years, and I had a hip replacement and my hands and feet had begun to deform, before I was even diagnosed. Like you, I used to avoid even a Tylenol/Paracetamol, but now I am pretty desperate to prevent further damage, as you can imagine. So if you've got the chance to take MTX *before* any joint damage happens, I'd advise you to seriously consider it. Good luck!
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Like you, I used to avoid even a Tylenol/Paracetamol, but now I am pretty desperate to prevent further damage, as you can imagine. So if you've got the chance to take MTX *before* any joint damage happens, I'd advise you to seriously consider it. Good luck!
Im new to this disease so I have lots of questions. Are the rest of these symptoms all PSA too? 
Please Help Me!!!
Burning feet.