Talk to your doctor about this asap! I’d go off it if I were you…I was also crying and in more pain than I thought should be normal. I feel so good now! ALMOST NORMAL AGAIN!!! 
I’ve never done the walking/jogging thing, but we do have a lot in common…I also had problems with taking care of the grandkids and my drawing was placed on hold. I’m actually starting to have some ambition again!!!
HOLY COW - if that’s not an endorsement for Humira and Enbrel I don’t know what is! Incredible that you were so close to surgery or transplant with the heart disease. I’m growing a little more hopeful with each positive post. Thank you!!! 
Keep giving me hope! I just want to be semi-normal - I don’t have to have it all! And I’m stopping the statins today. The vascular doc put me on them not for high/bad cholesterol but because he said he “suspected” I had plaques in my blood vessels. (You’ll remember the initial onset with my suddenly numb and very painful swollen foot back in August.) PCP has said this diagnosis is a “possibility”. I just need to sit down with him and have a long discussion if he doesn’t agree with the specialist. I will look for some natural supplementation that may help with the arterial issues and the plaque.
All I say on this thread is wow. This forum is simply amazing. I don’t have the extent of your issues @kris1010 (or maybe I did - I was one where it hit me like a truck - fast and furiously) but when I first joined this forum, I had a lot of similar thought processes to you. And I was similarly and gorgeously gently educated. I’m 55 too. However in many ways I’m lucky - I’m in the UK with the NHS so I’m never going to be funding my own drug treatment, those issues just don’t figure here. Getting to be offered the drugs can be difficult. Getting a rheumy that knows their stuff can too but not the money issues or indeed the money issues dealing with potential side effects either.
However I now connect with and know of a lot of people who are on biologics. For some, one or the other doesn’t work, for others they’re swamped with many of the very serious issues that PSA can do like Mr Lamb described and indeed suffers. However the overwhelming majority do incredible well - just like Sybil described. So much so that if I ever need them, now I simply wouldn’t hesitate. But a year and half ago I was simply as horrified as you appear to be.
I’m glad to know I’m not alone in my fear of biologics. I know that at some point I will have to choose quality of quantity of life. And Mr. Lamb makes a very good argument for biologic therapy! I want to get a second opinion from a rheumy that I feel more comfortable with, and then will decide where to go from there. And you’re right - this forum is amazing, and I can’t even begin to tell everyone how grateful I am for the support and information given to me. My spirits were lifted yesterday, simply because I felt that there were so many who understand where I am right now.
kris1010, we do get where you are with this. Without good insurance, of course you do not want to provoke a crisis by taking a biologic. But realistically, the percentage of folks having severe SEs from a biologic are miniscule compared to the potential damage that PsA can cause.
Sure, you can read accounts of a person who has actually had that catastrophic reaction to a biologic, but you aren’t going to read hundreds of stories that go like this: I took a biologic and nothing happened except I felt better. And I still have both my knees, both my hips and I can go shopping without a store scooter. If you can’t afford to land in the hospital with a drug reaction, have you ever priced knee replacements? Because that might be what we’re talking about. Your PCP is pretty much clueless, and your rheumatologist is recommending the no-risk option, the one that will protect you, however severe your disease is. He clearly doesn’t think yours is the finger-here-and-toe-there kind, and he’s probably read what Chandran, one of the world’s top PsA researchers has said: Early and aggressive treatment gives the best prognosis. So that’s what he’s recommending: cut to the chase, she’s got this disease so let’s stop it from wrecking her joints, or making the damage there is (if there is any) worse.
But it’s important that you be comfortable with that treatment plan. If I were you (OK I’m not, but still …) I think that I’d be pushing hard (and willing to invest some money if necessary) for a more accurate assessment of my disease. For me that would mean getting a second opinion from a rheumatologist specialized in PsA. An assessment like that would probably involve imaging. Sadly, even rheumatologists can get this disease very wrong. And as for your PCP … buy him the book janeatiu mentioned. I gifted one to my GP. She said thank you but I don’t think she was very amused by my magnanimity. We see it so often here: PCPs who’ve completely missed the diagnosis, or underestimated the potential of this disease to cause damage. And all, of course, to the detriment of the patient. The docs still get their fee.
What a great discussion you’ve started! PsA is a disease of many faces, a slippery fish to catch, and doctors aren’t always good at dealing with it. The variability in its effect on people is truly mind boggling. Aggressive treatment can involve major financial considerations and a certain amount of risk, but non treatment can lead to catastrophic damage. On the other hand, it could all just be … the tempest in the proverbial teapot.
Wouldn’t it be so much easier to have a doctor say,
“Here are your test results, you have a bad case of PsA, stage 3 on the tnt scale, and what we do for that is this treatment. It’ll be be a rough go for three months, but then your chances of being completely cured are 97%.”
Then all your friends would go ooh and aaah and send cards and flowers and deliver casseroles and this time next year everything would be just fine and you’d live happily ever after.
But if that were the case, we wouldn’t have a wonderful community like this, and great discussions like this one. Hang in there, Kris! (And hang out here with us.)
Wow Seenie!
I must say that your post really spoke to me, and you hit a lot of nails on the head. I read your profile story - and there are so many parallels that apply to what I’m experiencing. I’ve been dealing with this crap for almost 10 years and feeling my body (and life) continue to erode. The foot erosions you mention hit home because there are so many days that I can hardly walk at all. And forget shopping or anything that requires me to be on my feet. Even cooking - something I love so much - has lost its joy because I hurt so badly afterward. I’m in agony. I keep asking for foot x-rays/diagnostics, and now I’m going to insist on it. My hips, my pelvis, me knees, my spine - all so painful. An MRI showed severe facet arthrosis in my spine, and yet no one has made any connection with this to PsA. And when my current rheumy declared that I have PsA, there was no mention of ANY diagnostics. Why IS that? It’s a travesty that I, and others, have to figure this stuff out on our own in order to be advocates for our health and well-being.
I will take your comments regarding biologics seriously, and you make some strong points that a biologic may save me from some serious and expensive surgeries in the future. (i.e. “If you can’t afford to land in the hospital with a drug reaction, have you ever priced knee replacements?”) Hindsight is 20/20, and since I don’t even understand the realm and scope of what I’m dealing with, I can’t begin to know what is ahead for me. Hearing of others’ experiences is sobering, and helps me to put things in perspective for the here and now.
I have to say that after posting this thread I’ve felt more support than I’ve ever felt in my life regarding this journey. None of us can “fix” one another. But to know I have the freedom to say what I need to say means so much to me. I realize that I have to make decisions on my own, but know that a lot of the folks here have already been through so much more than I can even imagine. So I’ll continue to say thank you to all for pointing me in the right direction, and I learn a little more every time someone takes the time to share their experience with me (and all of us).
That is because there are none.
Here is how PsA is diagnosed.
And it doesn’t help that there are no blood tests either: 51% of PsA patients have inflammatory markers in the normal range.
The diagnosis and the assessment of this disease is entirely done on a clinical basis: what the doc can see, feel when you are there in the office. What I think is happening is this: your rheumatologist has detected more than enough stiff and swollen joints to suggest that your disease is serious. You’ve had it for years, and it’s not getting any better. You are in pain. Your rheumatologist doesn’t want to see erosions on an x-ray: he wants to prevent them, or prevent them from getting worse if you have them already. Never mind the x-rays, because if the x-rays show something it’s already too late. (Tnt, correct me if I’m wrong, won’t you?)
Now that’s from your rheum’s point of view. From where you sit, you’d feel more confident about your possible decision to start a biologic if someone did imaging and said “See this here? If that gets worse, you’re looking at permanent, crippling damage”. Fair enough. But that’s a bit like waiting until you have a minor break in while you consider whether or not to buy homeowner’s insurance. Yes, homeowner’s insurance is expensive.
You are so very welcome. We don’t do this work for the thanks, but when someone is grateful, it makes our day every single time. We have a lot of collective experience here, and we also have @tntlamb. 
(And we love teasing him!)
What has made me one of the site stalwarts is the very wise (if blunt) advice that I got here in the year after my diagnosis. It was that advice that made me an advocate for myself, and sent me seeking specialist care and aggressive treatment, something that my then-rheum didn’t consider necessary. Those PsA specialists literally gave me my life back. And now I’m trying to give a little bit back by helping others learn about this wretched affliction, and by encouraging them to advocate for themselves. And yes, you have the freedom to say what you’re thinking here, and we do a pretty good job of passing the tissues as well.
Keep those questions coming, and have a good weekend! 
(That’s a hug for you.)
Seenie, I SWEAR you are channeling my mother! 
She was always my biggest defender, and could always help me see things in a completely different light. So I guess I can’t throw my current rheumy under the bus for not ordering diagnostics. LOL So now maybe I DON’T want to know what’s going on inside my body (any more than I already do), but yes, there is still a need to know where I stand. (No pun intended as I can HARDLY stand at all.)
Again, thank you. And hugs right back!
Seenie is right on here! And, kris, even if it doesn’t seem that you have severe damage at the time, it might give you problems down the road, after you start a biologic! That’s what happened to my back and even worse, my feet! I had had the stiff, painful back for YEARS, not even considering that was related to PsA. And neuropathy in my feet, not linking that with PsA.
When I started Enbrel in 2014, my back felt 100% better. No pain or stiffness, UNTIL it completely went out after about 6 weeks on Enbrel! What a disappointment that was. And, I’m sure it happened–nothing to do with Enbrel–because I didn’t heed my body’s warning with the symptoms that damage was in the making. My feet, too!. I had had the neuropathy years ago, which was helped by taking Nortriptyline for about a year. I had no idea my feet were damaged, because they didn’t hurt after that. About 9 months after starting Enbrel, my feet “went out”. Xrays and an MRI showed terrible erosion, including complete erosion of the cartilage between the bones in my arches. All of this probably could have been avoided had I started treating the disease sooner–maybe, maybe not. Hindsight is always 20/20.
I’m telling you, once the damage is done, and this disease is sinister–you might not even “feel” the damage happening–it’s too late. Not to scare you, but it IS scary. I have done a lot of worrying about the possibility of being wheelchair bound…I’m glad that going off the statin has made a difference, but my feet will never be right.
Seenie can tell you about the damage her feet have had and what she’s had to endure because of that…it’s not fun and it’s pretty much impossible to fix once the damage is done.
You’re the first person to mention the neuropathy in your feet in connection with PsA. I plan to have a lengthy discussion with my primary doc who doesn’t seem convinced of the vascular doc’s diagnosis of small vessel disease. My blood flow study was excellent…no issues EXCEPT my big toe had minimal pulse. This is the toe that has had gout, or PsA or both for years. I’m more inclined to think there is nerve damage in that toe from inflammation or erosion. And regardless of most everyone telling me they didn’t have the swelling that I experienced in my right foot in August, I just got over the same exact thing with my left foot, minus the neuropathy. No doubt in my mind this is arthritis. Swelling is mostly gone but the pain continues. I am thinking more and more about a biologic. Though the frightening patient reviews I read are still in my head. But maybe I just need to suck it up and hope for the best instead of expecting the worst. I still think I need foot x-rays for a baseline of where I stand right now.
Yes, I can understand why you want that imaging of your feet. I’d probably want it too, even if my rheum didn’t think it was so important.
My hands had carpal tunnel syndrome in both hands, confirmed by nerve conduction testing. Then at one point I started to get numbness and tingling in my feet. Not all the time, but it concerned me. Dr. PCP ordered nerve conduction testing for that too, thinking it might be “tarsal tunnel syndrome”. But the tests showed nothing significant. This was all around the time of my diagnosis.
The same month I was diagnosed, I had a carpal tunnel release on one hand. It helped, but the symptoms didn’t disappear completely. I chose not to have the second one done because I had other fish to fry. And what do you know, I started the biologic and the carpal tunnel symptoms disappeared. I never had the foot numbness again either.
My best guess is that swelling from PsA in my wrists and feet was choking off the nerves, resulting in neuropathy. When Enbrel started to fail, I had to go back to wearing wrist braces at night. Humira took over, hands were OK and no neuropathy in feet.
Start trusting your own assessment of the what’s going on in your body.
Can I ask where you are reading these frightening patient reviews?
I have a very strong opinion about which doctors should treat which diseases. I have read many bad stories here about GPs not understanding PsA. I think this diseases should be left to the experts.
I have been treated by a psychopharmacologist *(good psychiatrist) for years for depression. Just like with depression, I don’t think GPs should be allowed to prescribe neuroleptic drugs. I don’t think there are many GPs that should be prescribing biologics.
I am in the same boat you are in. I have been resisting the biologics for a year, but now my rheumy tells me if I don’t I will be disabled soon. I have read and studied everything about them. I have decided I am going to have to move forward with them despite the possible risks. Some of the best information I read about them was from tntlamb on here. I understand the statistics behind the drugs, but he makes some good point about the numbers.
One thing to consider is that they now know that just having the continuous inflammation from the PsA also puts you at higher risck for cancers and cardio-vascular events.
I would recommend that you search the website here and review some of the information tnt put out there. Some of it is a few years old, but still relevant.
You make some good points as usual Seenie. Of particular interest is the description of your neuropathy. The sudden onset I had with my right foot is what keeps me questioning what may be happening with my body. I really don’t have much doubt regarding my PsA dx. But I had some HLA gene testing in 2012 by an integrative practioner (mostly useless) and one of the alleles (may not be using the correct terminology) showed I am susceptible to Sjogrens Syndrome. This disease can also cause severe joint pain as well as vasculitis and neuropathy. I’ve had such a journey with misdiagnoses (as I know many here also have) that has made me question many things. It seems doctors just take a stab at a diagnosis when there are no definitive diagnostics. My hope is just to look at all aspects regarding my symptoms. And, maybe, in the end, it doesn’t matter. But I think we all have a need to put a name to what we are experiencing.
As to the patient reviews on Humira, there are many. And actually most of them are positive regarding this drug helping PsA. I will post the links. The scariest reviews (not posted here, just too negative) are from a class action suit for Humira. What I want to avoid is being treated for one thing and then find out years later that I have something completely different going on. This happened with a Wegeners Granulomatosis dx in 1992, and it took me 3 yrs to get a second opinion and learn I did not have this disease. 3 years of high dose antibiotics that wrecked my body. So, I will keep following my instincts, and hopefully not convey that I’m a hypochondriac while doing so. One starts to question their sanity after years of looking for answers.
No friggin’ kidding. I know exactly what you are saying
Interesting story about the WG. Somewhere in this crowd is someone with that diagnosis as well. But who is it …???
I expect there are a lot of people on this forum who share the sentiment. I can’t tell you how many eye rolls I’ve had from various doctors in the last 10 years. (Not blatantly, but I saw them anyway!) It makes me sad, it makes me angry at times. Because I should not have to be the one trying to figure out what’s happening with my body and the impact the chronic issues are having on my quality of life. I feel sure that the evolution of the internet and search engines are the bane of most doctors. The biggest travesty is that they don’t realize and appreciate when their patients are doing everything they can to HELP them figure it out. (Most of us anyway.) There was no very little info about anything on the world wide web in 1992. And so I would go to the mall bookstore and pore through nursing manuals on Wegener’s Granulomatosis. symptoms, etc. Again, the travesty here was an ENT who was, in my opinion, lazy and complacent, and so even though I had a negative biopsy for this disease he decided I had it anyway. And then sent me to a rheumy who was also lazy and didn’t try to figure out any other possibilities for my symptoms. As it turned out, 5 years later with different docs, I was found to have severe dust/dust mite allergies that were wrecking my immune system. A little more diligence just might have saved me 5 years of pure misery.
I agree with you on the opinion that GPs/PCPs should not be in a position of diagnosing illnesses that should be dealt with by a specialist. I went without a PCP from 2008 until this past August because I despised the “big box” practice that I went to. Instead I saddled my poor nephrologist with the task of primary physician, mainly because we have an excellent rapport and she has been willing to send me to anyone I ask for. But it became obvious that I needed a referee (PCP) to help me navigate all my health issues. The PCP I chose has been wonderful, and definitely agrees with specialists for diagnosing. And yet, he doesn’t always concur with the diagnosis. And will recommend a second opinion if he feels the necessity.
As to you starting a biologic, I have given this a lot of thought myself these past few days. I joined this group for emotional support, but I also have learned volumes in reading about the experience of others. It’s been almost a year since my PsA diagnosis. And my issues have deteriorated tremendously since then. My hesitation comes from, more than anything, a lifetime of weird drug reactions and hearing “Gosh, I never saw this happen with this drug before.” I always seem to be the exception rather than the rule. But, again, at some point I have to take a leap of faith and hope that this time the experience will be a positive one.
kris, I was impressed on how many positive reviews your site had. SA lot of ther negatives were pretty easily explained but… I feel for the lady who lost he brother. but frankly if it had been her sister and closer to 50, I would be more likely to blame the Humira, remember PsA is a T-cell disease to begin with and Tcell lymphoma happen almost exclusively to males age 15 - 40. Those complaining that it didn’t work after 3 or four doses or work at all apparently didn’t get the memo that biologics (as well as non-biologic DMARDs) take 3 -6 months to work and even the only about 40% of the time…
My granddaughter has multiple health (actually I have two living with me that do) as well as being on the low functing side of the spectrum. BUT she does know her body… Not long ago she had a seizure at wok and they took ker to the ER. As usual they blew he off,when the when she told them the seizure wasn’t the problem but rather the pain in her gut. (PsA is actually thee least of her issues most of the time)They were discharging her when told them she was going to call her REAL doctor and she did. Her 5 foot nothin Rheumy was in the ER within ten minutes and she was HOT. I haven’t seen a blowup like she had anywhere outside of an OR ever.
The difference between a doc who gets (a specialist) it and one who doesn’t (a PCP) is amazing. She threatened to take a hammer and wack the ER docs baby toe. so he could understand just how much pain a tiny bit of inflammation could cause… And challenged him to walk and move normally afterwards. As it turned out Tana did have a problem. After reluctantly doing a CT with contrast they found a small amount of Inflammation right next to her appendix which effectivley mimicked appendicitis. Some IV steroids, ABX and a shot of torodol later, she was good to go. I could give you a long list of “not a big deals” that were over ruled by her Rheumy. It is amazing what a wee bit of inflammation can do in the wrong spot…Both my cardiologist and Rheumy tell me the same thing regularly STAY the Heck out of the PcPs office, as they are likely to kill me… Pretty much I start with my Rheumy with a problem.
Thank you for putting some things in perspective Mr. Lamb. I DO take the negative reviews with a grain of salt. And I’m thankful for your pointing out theTcell lymphoma predominately in males. As well as your underscoring that biologics can take months to work. I will admit that after reading some positive reviews on Humira, I might expect it to work quickly.
Your poor granddaughter! Atrocious experiences, but far too common. Kudos to her for standing up for herself and calling her rheumy! I will say that my PCP seems to take me seriously, and he does have many years of experience which counts for something. Even so, I realize that it is imperative for me to find a rheumy who can look at all aspects of PsA and the plethora of effects it has on the body. This is why I’m not comfortable with the lackadaisical attitude of my current rheumy. I plan to try yet another one in the near future. He is 70, so I can only hope he will continue to practice for a while if he’s a good fit.
Thank you for the encouragement and knowledge!
My rheumy is OVER 70, but he has shared his basic advice to me enough times I think he may be senile “You gotta be more like my dog - If you can’t eat it or play with it pee on it and move on.” Usually this means hes changing my meds.