Hi guys,
Apologies beforehand…I really just want to vent a little. (I think the newly added statins are making me grumpy. Or grumpier!) In talking to my PCP this week I’ve asked for some suggestions on a new rheumy, as I feel my current one is just passing time with me. (He does not like that I’m not open to biologics right now, and so I feel as if I’m being punished with a “well too bad, deal with it then” attitude from him.) Also I don’t think my current rheumy properly addressed the severe issue I had with my right foot back in August. But here’s my beef. My PCP made this comment to me the other day" "PsA generally just affects one joint at a time…a finger here, a toe there."
WHAAAAAAT? I’m absolutely floored that he believes this. And I’m not sure how to handle it or confront him with it.
Hey @kris1010!
YIKES! On the one hand I get that your RHEUMY might not agree with your (for now) stance on biologics and that her/his opinion on this could influence your treatment. But your PCP is just ignorant to PsA symptoms. Perhaps you should buy him a copy of the “PsA: The Facts” book.
I’d be happy to point with one of my affected fingers at his rear end which I might firmly kick with one of my affected toes.
Ouch! However … I guess your PCP is what we call a GP here in the UK, a generalist. Sometimes familiar with PsA but sometimes not. Annoying that he made what I too would see as such an ignorant statement though but personally I wouldn’t be too worried about that as it’s your rheumy that really matters. I reckon you should keep the dialogue open with him. You shouldn’t be punished but it’s important to know his thoughts about why biologics are the way to go.
LOL! Good suggestion on the book!
Yes, the PCP and GP are one in the same. And I know that there are a lot of people who believe in the power of biologics. But I’ve also read so many patient accounts of having catastrophic side effects from these drugs. Not to mention that it seems they don’t work for very long with many people and then they have to try yet another, and another. I have a young (42 yrs old) friend with severe RA and lupus.She has run the gamut of the biologics in the last 5 years. She is now on the last attempt with an infusion drug that costs $30,000 per treatment every four months. And she is STILL flaring horribly and having to take prednisone. She developed kidney stones that required not one, but two surgeries. She was hospitalized for an acute life threatening infection from a cold sore and almost died. And I don’t think she is in the minority. I’m not knocking anyone who can afford them, take them, and get some relief and improvement with symptoms. But for myself, I have no health insurance and I can’t afford the possibility of a catastrophe, landing me in the hospital with a serious infection that my immune system can’t fight. Prednisone was at one time hailed as a wonder drug. But now we know that, even though it can sometimes heal a flare quickly, the long term side effects can be devastating. I fear that this may be the case for some of the biologics years from now once the researchers see how people do long term on these drugs.
I hear what you’re saying about possible side effects in the long term from biologics, as they’ve only been around for what, 15 years? 20? Regardless, I’ve already had a few surgeries and know that there will be more. If I can slow disease progression and joint damage now, with minimal side effects now, I’m good with that. I was diagnosed with PsA at 36 years old and plan on living with it for a long time. I’ll take the theoretical risks over the very real, right now risks of joint damage and chronic pain.
In terms of your GP, yeah, it sounds like he needs some education.
I don’t disagree with what you’re saying Stoney. I didn’t get a diagnosis until last year, but have been searching for an answer since 2008. So at 57, there is no doubt a lot of damage already done. (But who knows because there have been no x-rays or diagnostics requested. I just know that if I walk for 15 minutes I end up in bed the next day in agony.) I understand living in the here and now and wanting some quality of life. Right now I feel I have none. It isn’t really the long term effects I’m as concerned about at my age. It’s the short term possibilities that worry me more. I’ve always been that patient that hears…“wow, never saw THAT side effect before!”. I’m glad you’re doing what you need to do. You have a lot of years left and hopefully it will be quality time.
I’m assuming your friend is receiving BENLYSTA. I hope it works for her. It has for my granddaughter although she has joint issues still, the kidney involvement has been slowed (not stopped as we have been praying for, so she is still on "borrowed time, barring a miracle. BENLYSTA is close.
You do understand what your friend has is far different than what you have and that BENLYSTA is the first biologic to have much effect on SLE…, the 5-year survival rate among patients with lupus nephritis was close to 0%. until the addition of immunosuppressive agents such as intravenous (IV) pulse cyclophosphamide and more recently BENLYSTA has led to documented 5- and 10-year survival rates as high as 73%,
Speaking of odds:
Eyes. If you have PsA or psoriasis, it may affect your eyes in different ways. You may get pink eye (conjunctivitis), dry eye syndrome which causes dry, burning, gritty-feeling eyes or swelling in the white part of the eye. About 7 to 25 percent of people with PsA develop eye inflammation, called “uveitis.” The condition can affect one or both eyes. It can cause pain, redness, irritation and disturbed vision, which may lead to permanent vision loss.
GI Tract. Having psoriatic arthritis may make you more likely to have inflammatory bowel disease, especially the form called Crohn’s disease, which causes diarrhea and other gastrointestinal issues. A 2013 study in Annals of the Rheumatic Diseases found that women in the U.S. who had psoriasis were four times more likely than others to develop Crohn’s disease; those who had both psoriasis and psoriatic arthritis had a nearly 6.5 times increased risk.
Heart. Studies have shown that psoriasis, PsA and cardiovascular disease are linked. Chronic inflammation can damage blood vessels, increasing the risk for heart attacks and strokes. A 2013 study in the Journal of the European Academy of Dermatology and Venereology found that having psoriasis raises the risk of developing cardiovascular disease by 25 percent, while PsA increases the chances even more – by 57 percent.
Lungs. The inflammation that causes PsA may also harm your lungs, causing a condition known as interstitial lung disease that leads to shortness of breath, coughing and fatigue. This condition tends to also affect people with other rheumatic diseases, such as rheumatoid arthritis and ankylosing spondylitis.
Liver and Kidneys. Since so many people with psoriatic arthritis have psoriasis, your doctor will also pay attention to how your liver and kidneys work. Having psoriasis increases your risk of having chronic kidney disease and a type of nonalcoholic fatty liver disease. Your PsA increases these risk even more.
So essentially you have at minimum a 1 in 4 chance of developing a very serious co-morbidity with uncontrolled disease compared to a one on THOUSANDS chanc of a serious medication side effect. I’m not surprised your Rheumy is on the verge of firing you as it takes a year or more to get a treatment protocol working. If something shows up, you and he are screwed.
The effects of Predi have always been known, there was simply no other choice for many and it doesn’t take years for them to show up but as little as a week on high dose
BTW your PCP is repoponding pretty much to Dr. Google information. Asymmetric psoriatic arthritis is the most common form, and is exactly what he is describing. So for MOST patients he is absolutely correct. (Not much comfort is it?) We don’t see those folks here nor do they often show up in Rheumies offices. I guess that what happens when you research on the internet.
You are correct on the medication being Benlysta. And, although my friend is neg ANA for lupus, her rheumy still believes she has lupus. This is an issue that I continue to wonder about for myself, as my mother had SLE but my ANA is negative. I have been seeing a nephrologist since 2009 for protein and blood in my urine which worsens by the year. (She has said I don’t have CKD as yet, and I’ve had the blood/protein issue since I was 16, but she thinks there is possibly a mixed connective tissue disease happening. The problem is that a kidney biopsy is needed which out of pocket would cost $5-10k for me.) I also have Crohn’s disease diagnosed when I was 42. I have the chronic dry eye, left eye - maddening. And have now been diagnosed with small blood vessel disease. No clue what my liver is doing but will find out soon as I’ve been put on statins and blood work is mandatory. So far lungs are clear. Heart disease runs in my family. Haven’t had any cardio testing. But with the blood vessel disease it’s highly likely that I have heart involvement. (The “new or worsening heart failure” disclaimer on the biologic info scares the heck out of me.) Another issue I have with my current rheumy is that when I mentioned the correlation with the kidney issues and PsA he just shrugged (yes shrugged) and said, “Oh, I don’t know about the kidneys, that’s not my area.” (And it seems that although I’m supposed to have a “team” of caregivers, none of them are coming together for my benefit.)There is NOTHING in my patient chart that even says what kind of PsA my rheumy suspects. I really don’t have much faith in him at this point. Looking for an alternative rheumy and surprisingly, there aren’t that many in my large medical community. I’m so glad to hear your grandchild is doing well with her treatment. I hope she will have continued success. It hurts to see a child or grandchild struggling with a disease that impacts their life so much. (Both my grown sons have TD1 and it’s heartbreaking.) I suppose I should be thankful that my diagnoses came later in my life. But I have struggled with chronic health issues since I was a teenager - been diagnosed, un-diagnosed, misdiagnosed. But I keep trying. Glad you mentioned the assymetric PsA/Google info. Perhaps there is more info in my rheumy chart on the type of PsA I have. The problem is that both my PCP and Rheumy are independent of the two large big medical systems in my community, so it takes some work to request files instead of looking it up on a common system. I know one thing for sure…if PsA is what I have (and my body is currently covered in psoriasis patches) then it is NOT as simple as assymetric PsA as I have pain in my hips, pelvis, knees and my spine is a wreck. Not to mention the feet. Now dealing with the continued neuropathy/pain in the right foot said to be caused by the small vessel disease and possibly a plaque that lodged in my big toe. And then last week the left foot went haywire with pain and swelling after being on my feet for 30 minutes shopping. (Anyone else have a foot that starts with pain at the outside ankle and works its way across the top of the foot?) Sorry, I’m venting and running on again. Sometimes I just need to get it all out, and my poor husband gets so sick of dealing with me sometimes. (He’s a gem though - he does his best to keep everything on an even keel.) No one else understands this crap, which is why I’m on this forum to begin with. And I appreciate ALL the answers and input from everyone. Sorry to sound like I’m whining. I keep it all in, then just get fed up with it and go off. 
Sorry to learn you’ve so much to cope with. #breathe
Kris, tntlamb knows what he’s talking about. I can understand where you’re coming from, though, because I was in that same place four years ago. What you say
is EXACTLY what I was saying from age 55 when I was diagnosed until age 61 when I finally decided to swallow my fear and try the biologic. I was SURE I’d have SEs and it would stop working right away and I’d be a guinea pig hopping from one biologic to another. But, I’m one of the lucky ones (and I think there are a good percentage of us) who had/have very good results with our first biologic.
IDK if there is an assistance program available for you, having no health insurance…the Enbrel Support program pays for everything but $10 a month, for which I am thankful because I couldn’t afford the monthly $5,000+ cost. But, it only subsidizes people with private health insurance. There might be other programs for people without insurance, IDK.
I’m not telling you what to do, but I’m pretty sure if I hadn’t started Enbrel when I did, I’d have gone stark raving mad by now dealing with all of my psoriasis and PsA. OTC pain meds don’t work well for the inflammation and I’ve never taken prescription pain meds other than a couple times on prednisone for a few days (which had miraculous, but temporary effects).
I do have some high BP and high cholesterol problems (started before I was diagnosed with PsA) and a coronary blockage last August. I wanted to tell you this: I was put on a statin (Crestor) - a very small dose for high cholesterol following my blockage. About two months on it, I started having increased severe pain in my feet (mostly left foot), intense pain in my neck and shoulder blade, and depression. I finally talked with my internist about these symptoms and she took me off the Crestor. That was about a month ago and I feel like a new person! So, look out for that statin. Tntlamb told me statins and beta blockers don’t mix well with our disease. So, far I’m still taking a beta blocker, a calcium channel blocker, a blood thinner and a daily aspirin, none of which seem to be giving me SEs.
I consider myself a success story with Enbrel, however knowing that it might not work forever. But, taking it convinced me that I need to fear the disease, not the meds. I’m sure my attitude would be a lot different if Enbrel hadn’t worked for me…but I’m glad I decided to give it a try.
Good luck, kris, I know you’re in a tough place right now. 
Negative ana lupus does exist, and may be more common that many think. If you get a hold of your records you might want check if a anti-Ro/SSA or antiphospholipid antibodies test has been done. almost all negative Lupus patients will be positive. This is a test that should be repeated as false negatives are fairl common. As your story indicates History and symptoms trump bloodwork every time. Good luck I/we do understand your situation. With the Crohns and eye issues you have I would certainly have another discussion with your Rheumy about a biologic (prolly humira from what others have experienced) Negative Patient experiences as found on the internet throw a lot of folks into confusion even thought postive experiences are usually not found they WAAAAAY outnumber the negatives. People just don’t bother complaining about what works…
Yes, if you get to a stage that you are happy to talk to a Rheumy about a biologic (and if you have a Rheumy you can trust that conversation might happen a whole lot better and earlier), then with the eyes and Crohns I’d second Humira.
One interesting thing my Rheumy said (he has a terrible bedside manner but really knows his stuff), is that for people with enteric associated arthritis (I don’t know if that’s you, but it’s possible), they are not finding the same periodic “running out” of the biologics where they stop working. He’s got patients who have been on Humira for ten years still going strong. I’ve been on it for 4 and a half now.
But, before any of that, it sounds like you need to get a team you can trust if at all possible. I agree your GP has just seen the google version, which probably is a majority of PsA, just not who you meet here - with only one joint at at time, if they don’t have bad fatigue, then for many it just isn’t a big enough deal to find us. But, you know many of us have / had PCPs who have never heard of PsA, and had to educate them from scratch. The fact that your PCP either knew of it, or googled it as a result of your case is actually really encouraging.
I understand that your medical team is not all within your control with insurance etc, but figure out what is, and work with that.
Oh yeah! I left out that I was diagnosed with high BP in 2008, which is why I began seeing a nephrologist with the proteinuria issue. Am on an ACE inhibitor. Believe me, I do NOT want to take the Zocor 20mg, and after only a week it IS causing more pain, no doubt about it. I could not sleep last night for the deep muscle pain in my left leg and this is a new symptom. Statins also cause issues with the seratonin levels in the brain, and I’ve been moody and crying over everything all week. (And ranting in the psoriasis forum! :-D) And I just recently read that BP drugs with diuretics in them (mine has a diuretic) can raise blood sugars. As can statins. As can prednisone which I take at 7.5mg daily maintenance dosage. My non-fasting BG levels have been around 150 the last two tests. HbA1c does not yet show TD2 or borderline. But it’s coming. I know it is if I keep taking all 3 of these meds. With all that said, I REALLY appreciate your take on starting a biologic GrandmaJ. I know that I may well have to swallow my fear and try to find some kind of normalcy of life again. Until 2008 I walked/light jogged 5 miles a day, and had more energy than I could deal with. Now I feel like a big painful blob. I can’t keep my precious 8-month old (only) grandchild because it hurts to carry her across the room. I have trouble with my artwork because my hands hurt. And I never go anywhere anymore because it just plain hurts to try. (Yes, I’m whining…I can hear the little violins playing. I know it can always always be so much worse.) I am probably going to take my chances and stop the statin once I talk with my PCP.
Interesting point with the enteric assoc arthritis. These are the wonderful things I learn from the people here. In December I went through the process of applying for patient assistance for Humira. And was approved. But then chickened out. So now I have to figure out how to determine if I have enteric assoc arthritis? The only GOOD thing about not having health insurance is that sometimes I have more control in who I can choose for my team. I look for independent docs (very few of them,but my current rheumy and PCP are independent) because they tend to be more understanding of self pay, etc.
I’ve asked and asked for a more thorough test for the lupus. Docs have been testing me with the ANA since I was 20. Always negative. So when I ask for a more thorough test they just shake their head and say there is no reason to test. My current rheumy told me that the ANA test is VERY accurate. And I’ve read just the opposite. As to patient reviews - I will try to find the page again and post the link. There were both positive and negative reviews regarding Humira. I can’t remember what the ratio was though.
(Will try to do better in responding to all of you at once in the future instead of so many different replies.)
kris, there’s a lot here, phew! It’s a great discussion!
You don’t have to respond to me, there’s a lot of replying to do to more detailed and thoughtful responses.
I’ve just got a little summary of my experience. PsA hit me hard, I looked like a flipping skeleton by the time I was diagnosed. After reading your post I started thinking back to the worst times, like when it took 2 people to help me get to the edge of the sea from our chalet just a hundred yards away. Prior to diagnosis I’d forgotten what it was like just to feel okay in my own body, I was always exhausted.
I started Humira in 2014 when I was 58 and I’m a different person, I take myself down to the sea these days and then I swim in it. I climb ladders and I work hard and I’m usually pretty damn well.
My honest opinion is that PsA undermined my health considerably for years quite apart from the classic symptoms. I’ve never been gungho about taking drugs but the ones I take seem to have boosted my overall health as a ‘side effect’ of controlling the PsA.
I need the success stories Sybil! When chronic illness and the symptoms come on slowly it’s different than being suddenly slammed in the face with an acute onset of pain. It’s insidious, and life as I knew it seems to slowly fade into nothingness. So glad the Humira gave you back your life. It’s a nice visual to think about swimming again. We have a pool (unheated, so only about five months of use) but even swimming was too painful for me this summer, and the heat quickly left me debilitated. Will keep your success story in my mind and heart for the future! 
That makes me happy kris! When I started Humira the last thing I envisaged was writing endorsements for it that sound like cheesy ads! Thank you, actually, 'cos I sometimes forget how far I’ve come till someone prompts me to re-visit!
I think you’ve hit a nail on the head when you compare slow onset with the hit by a truck variety. I got so ill relatively quickly that there was no thinking to do with regard to drugs. It was only later I realised the truck had been coming down the road for a long time.
Well if that all you are looking for… My pain started after I broke my back (second time first time I fell out of an airplane on a hiking trip in SE Asia in the early 70’s) I had to quit my job. The pain continued to get worse, but I managed to get off the narcotics and out of the wheel chair most of the time until a bad experience in Sea World. I was diagnosed with Congestive Heart Failure it continued to progress to the point I was considering an experimental “shrink wrap” surgery or going on the transplant list. For reasons I’ll never know I went to the dermatologist to get some moles burned off and some cream for the couple spots of P I had (usually had my PCP take care of both. He watched me get of the exam table and said “My Gawd man, you have PsA” to make a long story short 2 weeks later I started Enbrel and within 67 mos my heart was better, the P was gone, sold the wheel chair (kept my cane for travelling) and left on an extended cruise of the Med. 2 years back I changed to Humira because of a bout with uveitis. (haven’t had a problem since.) If only I had figured it out sooner I’d have 2 less joint replacements (with more to come) no permanent heart damage, and have had a much better trip to Southern Cali with my grandkids. (nothing worse than being taken PAST the free beer stand at Sea World on a stretcher…