Hello all, I am new to the forum and to PsA. (big family history of psoriasis, which I do not have, but my brother has both psoriasis and PsA) I went to see my PCP because of headaches and when she asked if anything else was bothering me I also told her about my recent joint pain, fatigue, eye issues and general blaa feeling. I did not put them all together. After some blood test showing some high SED rate but not RA factor she sent me to a Rheumatologist. Who immediately said “you don’t have PsA because you don’t have psoriasis or the typical symptoms”. So he did not do any blood work, only gave me Otezla samples and said come back in 6 weeks. about a month later I was feeling 75% better. I go back at 6 weeks and say it helped and he says "well I guess you do have PsA. Stay on Otezla and come back in 3 months. I do NOT have the typical display of symptoms. I have joint pain, but not in the joints he claims to be from PsA. No sausage like swelling of my fingers or toes. I do have some swelling after working all day. No pitting in my nails. Because I don’t have the normal symptoms I feel like he either doesn’t know what to do, or doesn’t believe its PsA? Now the Otezla is not helping as much. I work a physical job with my hands and am having a hard time getting through my work day again. Do I continue to give this guy a chance or seek a Rummy that I feels knows what he is doing. I don’t know what normal symptoms are like in the beginning. I only know what my brothers hands are like, and I do not have his hand/toe symptoms. what are others symptoms like? I understand everyone is different but I read online what are normal symptoms. then I come here and read from REAL people and read different symptoms. Sometimes I feel like I am going crazy. Like I’m making this up in my head because I don’t fit in the “normal” category. Sorry for my long rant, I’m confused and frustrated. Thanks in Advance.
Oh my goodness, I totally get this! PsA can affect any joint. But there are some rheumys who still do not recognise that. And that can be seriously frustrating and confusing.
I would say, are you sure you have no psoriasis, and have never had it? It is well known that psoriasis can come after PsA but there are many here who realise after a dx of PsA that their ‘dandruff’ or ‘dry skin’ may well be mild psoriasis. I managed to have 20 years of constant inverse psoriasis, (which admittedly had disappeared before my PsA dx), and yet to forget all about it. Why would I remember it anyway - it was something I had always tried to ignore and nobody had ever told me it was linked to a nasty joint disease.
Take it easy. The ‘I am going crazy’ feeling is quite normal lol! Just keep reading and engaging with all of us here, we’ll help you through. Good news is that you’re finally getting treated and it is working! Fabulous news, in fact. Now all you need is to get your head around it all, and that takes time.
Good question…it doesn’t seem as if your current rheumy does any thinking out of the box. There are so many different symptoms–some people have all or most of them–tons of swelling, sausage fingers, psoriasis all over the place, severely painful joints, and some have just a few affected joints and minimal or no psoriasis (but psoriasis or PsA in close family members). I do think doctors look for a combination of symptoms rather than one thing. You have a combination–the family history of psoriasis and PsA, PLUS your joint pain that responded to Otezla. Now that your hands are painful again–sure not like your brother’s, but still, they hurt!!! My swelling was pretty much all over, but very vague. I didn’t realize how “puffy” my hands, feet, shoulders, etc. were until after I started taking Enbrel and these places looked bony again! I guess my rheumy could see and feel it, though.
Your doctor may be slowly heading in the right direction, but why is he keeping you on Otezla for three more months now that it stopped working?
I had bad psoriasis in my teens and barely none when I got joint issues aged 53. However that didn’t start off with sausage toes or fingers, it started off in my foot in my ankle and along the tendons that go up your calf. Then my hand swelled up but the back of it and my wrist. I had horrid tennis/golfer’s elbow too and weird hip and back pain. I’ve remain having no pitting in my nails nor any skin psoriasis worth talking about. I’ve had horrible rib pain and last summer ended up with two unexplained pelvic stress fractures which mainly made the tendons from inside my thigh to my knee scream in pain. An awful lot of my pain can be along tendons but not in joints, classic PsA issues.
For PsA I can’t say there’s a ‘normal’ category of pain or parts affected, really. You have a family history of both psoriasis and PsA and you have reacted well to Otzela. Sounds like whatever is going on, your inflammation is/was reacting to the meds. Don’t forget inflammation issues like to wax and wane and flare too.
Are you horribly tired? After the first while that’s what really got me down, an exhaustion level that certainly wasn’t normal either.
I get the ‘going crazy’ bit I felt like that for the first year too. And I wasn’t going crazy and I’m guessing you’re not either.
Don’t forget the driver for PsA is an autoimmune issue. And since that means your immune system isn’t normal who knows how a faulty immune system might attack itself, hence the lack of what a ‘normal’ category might look at. I so get your need for a label but often even if you have a label your symtoms mightn’t fit that label anyway.
Maybe you need to find a rhuemy with a better bedside manner who just can just guide you along in a better way. Would that help? As you can see we can help too.
Glad you found us, and hope our stories help!
What you were saying kind of reminded me about what sometimes parents say about babies, usually in hindsight, when a well meaning stranger asks if they’ve read… (insert baby book name here).
“Well I did, but apparently my baby didn’t”.
Seems like maybe your Rheumy read the book, but your PsA didn’t.
There are plenty of “averages” and “normal” in PsA that are in (particularly the older) published literature.
Interestingly, I’d suggest most of the cohort on this forum doesn’t match them well. There are all sorts of potential explanations for this, but for now, just know it’s not unusual (certainly my Rheumy originally said I couldn’t possibly have PsA without dactylitis )
That you have responded to Oztela certainly indicates you have an inflammatory, and likely autoimmune condition.
In terms of your Rheumy, if he is willing to work with you and treat it as such, even if he doesn’t know a lot about PsA (particularly if you are willing to do some research), then it’s certainly worth trying to develop a trusting relationship, unless you feel you have a great alternative (like a PsA Centre of excellence) available.
On the other hand, if despite your response to Oztela and other clear indications, you feel like you are banging your head on a brick wall, and just can’t get further treatment, then Definitely look at alternative rheumatologist.
Doctor’s think way too much in “average is normal” when they test a blood test, any test really they will test a lot of non sick people and put the results in a graph and then some people will be much higher then average and some way below… But they make a bottom and top number that doesn’t include those and say “normal” is between those lines… But normal for some people is below the “normal range” or above…
If I get into an accident and my Hb drops by 40% in a few minutes the doctors will think I’m fine… because mine is really high for a female… (usually there’s other signs for that much blood loss… but still)
Then there’s the other problem that online searches bring up higher what people click more… And people click more if they thing OMG!!!.. if you search for PsA nails (maybe don’t do that it’s horrible) you will find really extreme examples of PsA nails… my nails have been affected for about 10 years… and they never looked that horrible! My nails look pretty much like normal nails except that the white part on 2 of my nails gets up higher… I haven’t found a single picture of nails like mine…
I didn’t know I had psoriasis until I had to go to a dermatologist because I was diagnosed with prostate cancer. She was doing an all over body look and looked through my hair and told the nurse I had psoriasis. I always thought I just had some dandruff.
I had been in neck and shoulder pain for about 10 years from a car wreck and three neck surgeries. After I had my prostate removed, I had to have a fourth neck surgery and refusion shortly after. After that surgery I had terrible pain in my arms and elbows, which the neurosurgeon said was from the pinched nerve in my neck. About 6 months after the neck surgery my arms were some better, but a curious thing happened. On my last neck fusion they used bone off my hip instead of cadaever bone because the previous fusion with it had failed.
At the 6 month mark my other hip had started hurting. My surgeon had told me my butt and hip would hurt for a year from having bone chiseled off it, but it seemed to have spread to my other hips. He prescribed a 10 day course of prednisone because he felt is was inflamation. The pain went away for about a month, then came back. He didn’t know what to think because he couldn’t find any inflammation markers in my blood. We let it run its course.
At the 9 month mark, the pain in both sides of my butt had spread to my hip joints and lower back. I went through another round of steroids and it cleared up some, but in two weeks it was back. I was shuffling when I walked.
I did my own research and sort of figured out it was PsA. By the time I got to good rhuemy, I was in bad shape. He agreed with me and pointed out about 6 other unique symptoms of PsA and I had them.
I had been through three doctors before I sat down and did my own research. I didn’t think I had the normal symptoms either, but my doc is pretty good and said that didn’t mean much and neither did blood test.
Otezla worked for me about 10 months, now I am on Enbrel. I think you will find out that if you have PsA, there will be a lot of trial and error in your treatment.
-Thanks everyone. Hearing everyone else’s stories really does help me feel like the “normal” doesn’t matter or change the symptoms I am having. I will give my Rummy a chance. I go back in about 3-4 weeks. I am trying really hard to manage my diet and reduce the inflammatories I consume. That is something I can control. However, not doing a great job at it right now. Pain, fatigue and depression over this entire thing is not getting me back into the gym. I work in physical therapy so I understand the benefit of exercise but am still having a hard time getting out of this funk. Tomorrow is a new day. Thanks again for all your input.
Yes the sheer tiredness and exhaustion is gobsmacking isn’t it? That in turn makes everything just worse. The only dietary changes I saw made any difference was simply not eating any sugary stuff. That wasn’t hard as I don’t have a sweet tooth. But when you’re in the throes of such tiredness don’t be too strict diet wise as if you’re anything like me that sort of thing takes mental agility and that also seems in short supply at times too. So you can end up in a downward spiral of not succeeding at anything, which makes everything just 10 times worse.
So be gentle with yourself on lots of levels.
Sorry Nicole, I missed this bit when I replied. Hence congratulating you on the ‘fabulous news’ that treatment was working. Doh!
But it is far from unusual to find that the first drug we try either doesn’t work or doesn’t work enough or stops working at some point. And although your rheumy’s apparently blinkered view of PsA sounds a bit concerning, he was quite proactive in terms of treatment.
I think the acid test of this guy is what he does next. There’s a book you might find useful: ‘Psoriatic Arthritis, the facts’ by Dafna Gladman and Vinod Chandran. I would imagine most (all?) rheumys will have heard of them, Dr Gladman is from the esteemed Toronto Clinic. You may find a few gems in there that could influence your own view as to whether or not you have PsA. And it would be a very reputable source to glean some information from to run past your rheumy.
You mention sausage digits, I know they are ‘classic’ symptoms. But I’ve never had that, loads of us do not have & have never had that particular symptom.
Which of your joints are affected? And do you find that your pain and stiffness is worse after rest, especially first thing in the morning? My PsA first showed itself ‘flamboyantly’ in the knees. And also, any skin issues whatsoever? Even really small ones? I have found I can be covered in psoriasis and the dermatologists take an age to diagnose it, but a weeny little patch can be enough to clinch a dx of PsA.
absolutely no skin issues. Mom, mother in law, brother and cousins have psoriasis so I am very familial with it and I have not had any spots. As far as the joints right thumb at all 3 joints, index and middle finger primarily at the knuckle closes to the hand, right great toe, right shoulder, and worst of all is my elbows. I have also had some issues with inflammation of my right eye. Everything is very stiff in the morning. Then better after a while but due to my job of needing my hands and arms for lifting body parts for stretching, joint mobilizations and deep tissue massage, by the end of the day my hands and elbows are just screaming. And writing for my paperwork just kills my thumb. My elbow are in a chronic state of epicondylitis. Do you know if the medicines help with the tendon pain or more with the joints? I feel like the Otezla has help with the joint pain but no the tendon inflammation? The more I have to use the joints the worse the tendons get. Rummy says some of the joints are an Osteoarthritis no from PSA. So I had a orthopedic surgeon do an x-ray of my Toe, and NO osteoarthritis. He feels the pain is inflammation from PsA, not OA.
I really do appreciate all the feed back.
Oh no, not the OA thing! That is my personal bugbear! You are likely to have some OA, most people do. Some from wear & tear due to life in general and some perhaps from PsA if you have that because it can cause OA in joints too. I cannot get any doctors to even consider the possibility of PsA damage in my (very messed up) thumb joints, but others here have had a different experience.
Otherwise Nicole, it sounds to me like you may well have PsA but obviously just from my own experience, I have no medical knowledge. And clearly that rheumy of yours is indeed thinking inflammatory arthritis or surely he wouldn’t have gone for Otezla.
I think the medicines typically help with joint inflammation rather more than that from tendon attachment points. But there again, when the drugs work they so often seem to make pretty much everything better.
My pattern of pain, though perhaps not as bad as yours, is very similar. I tend to do quite a lot of physical work so the middle part of the day is easiest, the sweet spot between loosening up and getting knackered!
You hang on in there. Keep pushing for more clarity on all of this. One thought, can you ask for help with your hands - perhaps from a hand OT? There are a range of gloves that support the thumb joints, some may allow enough flexibility in the hands for the kind of work you do.
Yes my elbows were agony, I used to go for a walk with one or both them in a sling from my scarf as walking with my arms down was the worst thing I could do. In my hand it was always the knuckle joints that were worse and certainly in my foot it was that long tendon from the outside of my foot all the way up the side of my leg. PsA is very well known for causing such tendon pain, incredibly well known for it.
So do a little research, print out what you think is important and bring it along to your rheumy appointment along with your orthopaedic x rays results and ask him to quit talking about OA (as that’s not right) and get on with dealing with your inflammation!
Honestly. I’m incredibly sort of demanding of my doctors but in a nice way. I do all the research and basically ‘shove it’ in their faces and then say shall we discuss? And I don’t let them off the hook till they’ve convinced me. If nothing else it makes me feel better emotionally. And remember you don’t need skin issues to have PsA.
anyone tried the vegan no gluten diet ? A couple years ago I started and am still on it, but certainly the dreadful pain of the disease at the time was only relieved after diagnosis and months of cortisone, methotrexate and patrol. After starting cosentyx a few months ago I stopped gradually the prednisone, the pain and stiffness initially returned but slight, in various joints, hips feet the worst problem the knees which did not allow for walking last year, now much better. Am very interested on your comment on sugar and inflammation, will stop sugar again. I wonder if the idea of antiinflammatory diet has important roots, as well as different food allergies. Am a very allergic person, is there a connection?
Couldn’t possibly ever be a vegan or have no gluten in my diet. And certainly don’t practice any sort of exclusion diets. However sugar is well known to increase inflammation, so I don’t add it to things as when I do or eat something very sugary it can increase pain. That won’t stop me eating a piece of cake though, not that I do that often anyway. I don’t have a particularly sweet tooth to be honest and don’t eat many sweet things. And I’ve never added sugar to things like tea or coffee. However a decent bit of chocolate occasionally is always lovely.
I personally don’t think severe exclusion diets help PsA that much, it might help other things but
in my view not PsA. And as PsA is an autoimmune disease that could increase some sensitivity or allergies, I’d guess.
Sorry for the two replies the first got posted too soon.
@nicshare yes it’s all so confusing and frustrating! My first noticeable symptom was about 3 years prior to my PsA diagnosis, I was diagnosed by a podiatrist with a Morton’s neuroma (inflamed joint tissue) but in a different location than where it is commonly found. I hadn’t ever been diagnosed with psoriasis but I’ve been told my occasional skin flare ups are acne or eczema. My dad has a skin problem he calls eczema, and my brother has textbook psoriasis. Next up after the foot pain, I had fatigue, depression and overall body aches. My GP doc gave me antidepressants and vitamin D. I was still in a ton of pain with the body aches. Especially while trying to fall asleep. I would roll around on the floor groaning thinking this isn’t normal. I’ve had lower back pain since my teens, but one area was worse than usual and no massage or heat or ice could relieve it. I told my GP the pain is bad enough I need to go on disability and she referred me to a rheumatologist saying ‘I really don’t think they’ll find anything’. After a 45 minute exam with a lot of questions the rheumatologist told me I have PsA (this was in 2016), with my family history of psoriasis being a factor. He also said it’s common for lower back pain to emerge in your teens. My sacroiliac (a word I now use everyday) pain was a factor in diagnosis too. I had no sausage fingers, pitting. My labs came back with elevated CRP and sed rate and my pelvic X-ray showed some minor changes so from his perspective those all confirmed his diagnosis. We tried a few RXs over the course of 3 months, then Enbrel gave me relief for a year. When it failed, my finger joints started to hurt and my fingers did swell. Not like sausages, but my rheumy recognized they were swollen. And my sed rate tested sky high. I’m ok saying PsA is the thing, but I care more about my treatment path than the disease name. I try to stay focused on keeping my inflammation down because when the numbers are low I feel better. When they jump up I don’t feel well at all. It’s important to trust your rheumy. I had to switch docs a few months ago and my second one was just was a bad fit. He didn’t believe my pain was as bad as it is. My new doc is great and that makes all the difference. I don’t feel well now but I agree with the treatment strategy I’m on so I’m optimistic. Hope some of this helps.
Hi Nicole! I totally understand! If you happen to read what I just posted (I belong post) you will read that I wrote about my RA doc being one of those that believes in PsA way before major skin issues. If you are able - I’d suggest finding a doc that believes you, it makes a big difference. At least it did for me - saved me. I didn’t write a lot about what I go thru or the pain from PsA as I also have Fibro pain - which I know the difference at times. So glad you found this site as they have great advice. I’d just like to add - trust yourself and your body. I wish you well on your journey. Hugs.
Hi Letizia; I sometimes belief the sugar plays an issue. For me the problem is I have trouble sticking to vegan or no sugar or low carb (LC actually does really help me along with the lower sugar idea). I can see how puffy I get, how much more pain I feel when I ‘go off’ my food plan. Which sucks - because I think seriously, you feel better way do you continue to do this to yourself!. I really do know tomatoes and potatoes cause me to be unable to sleep with all the pain I get - ironically those two I can stay away from!!! I look at them and think/see the pain and it’s like fire, I back away and say to myself - not worth it. I so wish I could do that with a lot more foods! I congratulate you for being able to do vegan, no sugar. Glad you are feeling better on it. And yes, I do feel there is a big connection.
I agree sugar is BAD stuff, but I think is so hard to give up. I wish I didn’t have such a sweet tooth!!! I see how my grandkids crave sweets and they get so much more than I got as a kid—I keep trying to tell their parents to avoid giving in to them, but I guess it’s a good pacifier!
I’ve been eating 2 stalks of celery every day, and I’m wondering if this really does have serious health benefits—I have been more regular than ever lately!