Hi I'm 24 i was recently diagnosed with psa. I think I've had it for years i just didn't know until things got worse. I'm trying to work full time but i'm exhausted. I have plaque psoriasis all over my scalp, knee, forehead and other locations.My job complains about my flaking and i don't know how to make it stop. My joints swell and every night i toss and turn from the pain. I have tried topical treatments of all kinds and i take a lot of motrin daily with no relief. My doctor says I'm high risk for cancer if i use the biologics. I don't know what to do and I guess I'm just trying to see if anyone is in the same boat. My nails hurt so bad. Every single one of them is affected by this.
Sch12, welcome. We are all in the same boat. You are now in a place where all of us have had some, or all of what you are experiencing. This is not a pleasant disease, but it does get better. There is hope.
First, you need to learn all you can about PsA. Unfortunately, PsA is a quirky disease which many doctors (and even some rheumatologists) don’t seem to understand well. Many of us have discovered that the key to getting an accurate diagnosis and appropriate treatment is by being well-informed about our disease and assertive with our doctors. It’s not always easy, but it is always worth the effort.
We have a mantra here: fear the disease, not the drugs. Which doctor was it that informed you of cancer risk? Was it your rheumatologist? Unless there has been a landmark study released today which we haven’t seen yet, I’d be wondering where s/he is getting their information.
You don’t know what to do. Sure, we’ve all been there. What you need to do is learn all that you can about PsA. What you should do will then become clear. This is a great place to do that! We’re glad that you found us. Oh, and yes, my nails used to hurt really badly too.
Thank you so very much. I’m just really struggling with this. I’m unsure about the cancer thing they just told me I was high risk if I use the biologics. They also told me nothing else will help. Do you have flare ups? I’ve been trying to learn as much as I can. Mine has been constant for more than a year I don’t seem to get better only worse. I’m hopeful with the medicine though. My hands hurt I feel so much weaker. Is this similar to you? Thank you for being here I appreciate it
And yes I saw a rheumatologist!
Flare ups? Aches? Stiff hands and feet? Fatigue? Depression? Itchy skin? Crumbling nails? Sure, been there, sch. And a few more places as well: click on my profile picture and scroll down until you see my profile information. There’s only one thing worse than being diagnosed with PsA. That’s being undiagnosed, with PsA. Read, learn and ask questions, and it will get better.
Thank you I’m gonna go read it now!
Wow I’m so sorry it took so long for you to get diagnosed. You seem like a very strong person. Another concern I have is I’m very very bad with medications I get all the side effects of things. I’m scared of the shots because I hear they are very aggressive. I know you said you’ve been doing much better with the medication. I guess I’m just going to have to have high hopes for it I’m just terrified of how my body will react. I have asthma along with a bad gall bladder horrible acid reflux I just am scared the medication will do more harm to my already falling apart body
I got strong too late, and old too soon. If I had been really strong, I would have allowed myself to admit that there was something wrong, and insisted that my doctors figure it out before I quit my job because I was too tired to continue. I would have sought a second opinion before I had lost my knees, hips and feet. If I’d been really strong, I would have advocated better for myself.
One of the interesting things about treatments for this disease is that the drugs that are the most effective are the ones with the fewest side effects. Go figure. And if you’re scared that the medication will do more harm to your already falling apart body, how does the potential damage of PsA grab you? I don’t want to sound mean, but really, that’s what we are talking about.
But I will say it again: learn as much as you possbily can. It will pay off. Start with The Newbies’ Guide. If you can, get this e-book
http://www.amazon.com/Psoriatic-Arthritis-Facts-Dafna-Gladman-ebook/dp/B003FNAI8S/ref=sr_1_fkmr0_1?ie=UTF8&qid=1445312300&sr=8-1-fkmr0&keywords=gladman+chandran+psoriatic
Decide to become your own expert on your own body. You can do it.
Thank you very much. I wish you all the best and yes I know this disease is worse than medication. I’m definitely going yo get on something I’m just nervous about it.
Of course you are nervous about it. We get that too, boy do we ever. I’m really not as mean an old crone as I sound, but my experiences have made me really militant about people getting the right treatment. Hang in there, and hang out here. There are some really nice people (unlike me, LOL) here too.
Seenie
PS how do you pronounce “sch12”?
I had psoriasis since I was in elementary school. That was 30 years ago. Omg, I feel old! Back then, no one told me anything about psoriatic arthritis. Maybe they told my parents? My parents don’t remember and they’re 70 years old now. I started on methotrexate in April 2013. I remember it well. I researched and read about mtx and found from others that the best time for me to take it is on Fri night with dinner. My tummy doesn’t get so upset if I take it with food. And mtx makes me really sleepy, so I just go to bed after dinner. The next day I’m usually wiped out and end up in bed all day. Sometimes I need a 2nd day to recover. Since I work M-F, I use the weekends to recover. Then I’m well enough by Monday morn. I was very scared to take mtx because it’s chemotherapy. I had to try very hard to take it at first. After a couple of months, I realized that it wasn’t the end of the world and there are lots of us taking it.
Almost all my fingers are sore and I sit at a desk on the computer all day except when I’m counseling homeless seniors. Its been difficult to grasp a pen with swollen and sore fingers. Especially when it’s cold. The a/c in the building can make my joints hurt more, so I run my hands under warm water in the kitchen at work. That helps loosen them up and relieves some of the pain. My doc prescribed stronger pain meds when I mentioned that I can’t sleep thru the night and that I wake up 2-3x from pain. Now the meds knock me out and I get a lot more sleep. It’s amazing how much better I feel after getting more sleep.
The psoriasis is no longer on my scalp, neck, elbows, knees, ankles, and other areas. It’s in my nails. I get black lines in my nails that look like splinters and hurt. If I do get a flare on my skin, I use steroid cream right away to get it before it gets out of control. Sometimes I can tell the psoriasis is coming because certain parts of my skin feel tingly and itchy. So I’ll hit it with steroid cream and that usually catches it before it becomes psoriasis.
I started on a biologic 2 months ago. I don’t notice any changes yet. I’m hoping it helps. I’m on mtx and the biologic. The disease seems to be progressing and I’m getting worse even though I’m on meds. The unfortunate part about the dmards and biologics is that it might take several months to notice any effect. It’s been a long process for me and I still haven’t found a good combo of meds yet. What’s nice is that if the meds work, the doc tells me it’ll help with the PsA and the psoriasis.
Hope you can get meds that will help you regain quality of life.
Aloha,
Spammy
Hello sch12, welcome, I'm glad you found us.
I just want to second everything Seenie says really and also encourage you to buy the book she has recommended to help you understand what is going on with your body and where it could be leading and treatment options. Sure, all the medications are scary, but you know what? PsA scares me more, almost every single day. In your shoes I would definitely want to understand why my doctor is saying there is an increased risk of cancer for a biologic because my understanding is that short term studies have not indicated greater risk for patients treated with anti-TNF agents and you are way too young to have to accept 'this is as good as it will get' treatment.
Truly we have all been where you are now and the journey to improved health can be a rocky one. For me the best thing ever is that I have a whole bunch of people here who will hold my hand on the journey, help me navigate the rocks, support me through the side-effects (and disappointments) and, most important of all, celebrate the successes both small and large.
Hi sch12!
I understand that the decision to start treatment can seem scary and I think you are wise to start what is already a great discussion to help with the decision making process. I just want to pick up on that word 'aggressive'. We often talk here about the need for aggressive treatment. And it's not an easy word to accept when you're recently diagnosed. After all, that's when the disease seems like the aggressive thing and quite naturally, you'd like everything to be nice and gentle! But if we're talking biologics, I take that word to mean that they are aggressive towards the disease process rather than on the whole body.
I was chatting to a dermatologist (I've seen a lot of them recently, and, incidentally, they finally came up with a good management regime for my psoriasis which may be of interest if nobody's set such a thing up for you) and he referred to biologics as 'smart' drugs. I kind of knew this already but I liked the fact that an expert used this term. The way he described the way bios act is that they target certain parts of the immune system cleverly rather than just knocking out as much of it as possible in the hope of obtaining some relief from the disease. Smart sounds good to me and I reckon it's accurate. That word aggressive is still useful but to me just means something that is most likely to work with no messing!
sch12 said:
Wow I'm so sorry it took so long for you to get diagnosed. You seem like a very strong person. Another concern I have is I'm very very bad with medications I get all the side effects of things. I'm scared of the shots because I hear they are very aggressive. I know you said you've been doing much better with the medication. I guess I'm just going to have to have high hopes for it I'm just terrified of how my body will react. I have asthma along with a bad gall bladder horrible acid reflux I just am scared the medication will do more harm to my already falling apart body
Hi sch12, and welcome to this support group--sorry you have PsA, but this place can help you, as you've already noticed!
I had to jump in because, 1) our youngest kid is a daughter just about your age 2) my hands and fingers were a huge problem, too and 3) I was extremely afraid of the meds to treat PsA! So, we have some things in common. And, I have to mention, I'm worried our daughter is headed for having some serious health problems--she has lots of ailments and no diagnosis of anything yet.
I'm 62 and, luckily, only had to deal with psoriasis from my early 20s to early 50s. Maybe there were some flares of PsA in-between, I always had a stiff back And off and on aches and pains, but no Dx until 55.
I was so afraid of biologics, DMARDS, and even nsaids I refused to take anything other than occasional OTC nsaids and just suffer with the pain, fatigue and everything. But, I'm telling you, sch, that was a mistake! I finally agreed to take Enbrel 15 months ago and it had miraculous results!!! And, no side effects!!! It's not like those other meds in that I don't think it harms the liver or kidneys or anything like that. It can lower your immune system, but it doesn't in a lot of people. I just want you to know that those aches and pains could and probably will (unfortunately) start attacking other joints and tissues. I'm not sure how much better off I'd be if I had started Enbrel at 55 instead of waiting until I was nearly 61, but now I have a bad back, bad feet and lots of wishing I didn't.
So, like others told you, learn more about the disease--it's an ugly disease, and, I also have to mention 4) I never in a million years thought I'd get PsA just because I had psoriasis. I thought it was extremely rare, but not thinking that anymore!
You seem very nice! and its actually just my initals you can call me steph!
Seenie said:
Of course you are nervous about it. We get that too, boy do we ever. I'm really not as mean an old crone as I sound, but my experiences have made me really militant about people getting the right treatment. Hang in there, and hang out here. There are some really nice people (unlike me, LOL) here too.
Seenie
PS how do you pronounce "sch12"?
I’m just going to touch on high risk for cancer from biologics. I don’t know your personal medical or family medical history. this article addressed RA specifically but is still relevant - http://www.medpagetoday.com/Rheumatology/Arthritis/44487
I've just read this through. I'd heard that having a disease that causes systemic inflammation heightens the risk of several types of cancer. And although this article focuses on just one type of cancer, Lymphoma, that is basically the message of the research they mention: that the disease (specifically RA) carries an increased risk of Lymphoma and the use of biologics probably has little or nothing to do with it.
Unfortunately I'm pretty sure that having PsA, especially uncontrolled PsA does increase the risk of some cancers. And that's one of many reasons why the inflammatory process needs to be got under control. But then, right down the bottom of the article, they point out that ankylosing spondylitis does not seem to increase the risk of lymphoma and also that the risk with PsA seems to be less than it is for people with RA. So there's a little bit of extra good news for us there!
I reckon this is a very helpful article Stoney.
Stoney said:
I'm just going to touch on high risk for cancer from biologics. I don't know your personal medical or family medical history. this article addressed RA specifically but is still relevant - http://www.medpagetoday.com/Rheumatology/Arthritis/44487
Stoney, great article. Thanks.
We need tntlamb, our stats man, to weigh in on the cancer risk question. To the best of my recollection (mind you, my memory ain't what it used to be) the cancer risk is only elevated for young men with Crohn's disease. But I'm hoping that lamb will correct me if I am wrong.
Thank you everyone you have really helped ease my anxiety about the medications I have an appointment monday let’s hope I can get on medication!
Hi steph,
If your rheumy still drags his feet about medication try to find out exactly what his thinking is. Might be as well to formulate 'just in case' questions beforehand. The most obvious one being: 'what is it about my medical history that, in your opinion, puts me at a greater risk of cancer than other people?'
It's hard to see any basis for leaving someone with PsA without treatment. It may be ... it just might, I don't know .... that you do need a cautious approach given your other health issues. But if that is the case then there's all the more reason for outlining and very clearly explaining a plan of action. No treatment plan + no satisfactory explanation = being fobbed off I think. In which case, there are other rheumys .....
Well that's the worst case scenario! But here's hoping the appointment will be much better than that and really move you forward. Preparation on your part will help for sure.