Because I am curious, I just got a copy of all my 2022 medical records including all diagnostics and even the correspondence between physicians. It was a bit of an eye opener. My GP arranged for a whole body exam with a dermatologist which I went to. It was a skin exam that lasted 7 minutes and was superficial to say the least. The dermatologist report back to my GP said, “Patient denied examination below the waist.” No such thing came from me. I wrote a letter to the dermatologist asking what happened but no response…yet.
Keeping in line with my topic, I think that I have had unreal expectations of this disease being medicated to normality. In one report, my rheumy wrote to my GP, “the patient has unreal expectations of the ability for medication to “cure” his progressive disease.” My GP also gave me a bit of a talk explaining that the rheumatologist role is to diagnose the problem and arrange for the best medication with ongoing adjustments as needed…that’s it. I’ve been expecting counselling, advice, conversation and progress reports which my GP says would be great but not going to happen. (at least not here in Canada) Then for one more reality check, I was at a sports event (watching 
) and ran into a friend who is a young physician. He asked me how I’m doing with the PsA and I gave him a brief, “Less fatigue but overall more joints giving pain and more pain altogether.” He stopped me and said, “So it is worse than last year?” and I told him that it was and I was surprised that I wasn’t doing better on the Rinvoq. He stopped me and said, “You know this is progressive don’t you? The meds will slow things but they aren’t a cure.” Sigh. I think I am going through a needed mental shift and am discovering that I really haven’t fully accepted the potential ramifications of this disease. I think that 6 months of increased pain is just a flare and will settle down…but it might not. I don’t want to go from optimism to pessimism but likely need to land on reality in a number of areas concerning PsA. My latest x-rays are also showing a fair bit of OA just to keep from getting bored with only one arthritis. My GP prescribed 25mg prednisone to take for no more than 4 days as a steroid “blast” to settle the bad times down. I feel that since I’m already on an immunosuppressant, prednisone would just knock my immune system to nothing. Well, thanks for your ear, it is sunny in Manitoba!
Good for you getting all of your medical records! Some patient portals allow the patient access to pretty much everything, including physician notes, others are more limited as to what is accessible to the patient.
Outright lying is ridiculous! You denied examination below the waist? You were expecting a full body exam, so clearly you were okay with the idea.
Sadly, in terms of progression, yes. I gave up hoping for remission many years ago and have my primary goal as slowing progress. While that transition in thinking is a rough one, it also sets you up for greater success overall because your expectations are realistic. I give myself little vacations from pain by taking an NSAID for a few days, and limit my steroids as much as possible.
Gotta admit my mind has been wondering somewhere along those lines as well.
Here in somewhat sunny BC I find appointments rushed - you’re in, you’re out, next…wait, I had some questions !!! My rheumie is a whirlwind, see her briefly, spending more time with the nurse who goes over everything. Everyone is so busy, overloaded - there’s no time ! I was waiting for an appointment for neck issues with the arthritis physio, took five months, during which I figured things out on my own. Geez…I gotta live my life in the meantime, wind up doing the research myself.
My rheumie once told me that the goal of treatment (besides slowing progression) was to get rid of pain(!). My research does not show that - I’ve even read a 30% reduction is a goal/possibility. At the moment my Taltz is wearing off and I have another week to my next injection (and another week after that for my next appointment). Fingers are swelling, pain everywhere, bad sleep, dropping things, knees hurt, psoriasis back on my elbow…etc. I am only as good as my current medication.
Is it slowing progression ? Maybe…I sleep in wrist splints, Oval 8 splints, and splints on my little fingers. I stretch daily and exercise and rest but…what is the inevitable ? They don’t tell you that up front - and I think they should. We are so used to medication “fixing” things but I think our meds are a band aid to some extent. Some people don’t want to hear the truth, not me - I want to know what I’m dealing with, even if it pisses me off.
I’m dealing with some OA creeping in as well, getting a bone scan in August as my T scores weren’t so good three-four years ago and follow up scans fell through the cracks during COVID and me moving. FWIW, I work with seniors with a host of different health issues - it’s a reality check for me as I see what NOT doing things to help oneself can do…as well as seeing those that just got hit by that lightening bolt (like us) and have to deal with some…excrement !
I read - what kind of 80 year old do you want to be ? I want to be an active, mobile one…deck might be stacked against us a bit…but I’m going down fighting anyway. Keep plugging along and I hope the prednisone gives you some respite - I freaking love prednisone, but of course it’s bad for you. sigh
Thanks. I’m scared to turn on Netflix as it will probably choose movies that depict 78 year old thin Norwegians cross country skiing, after snowboarding and running 23 miles. When I see that, I’m convinced that they are on prednisone. Ya…prednisone works so well it scares me. I wonder if it actually is a problem taking with biologics or Jak inhibitors? I appreciate your optimism and hope it is contagious.
Here’s a bit that I can see you still haven’t ‘got’ yet. We have PsA because we have an ABNORMAL immune system. So us lot are not starting out with a hunky dory working perfectly immune system like those people without any autoimmune disease. We’re starting out with a significantly challenged and abnormal one which is the only reason we have PsA in the first place. Ergo our PsA meds are trying to ‘normalise’ our immune system so that our disease activity reduces and indeed frankly just works better. So the reason a med is called an ‘immune suppressant’ (and it’s a really stupid name to call them too!) is because they deem our immune system ‘over active’ so they are ‘suppressing’ it back to normal. But it doesn’t mean your immune system is frankly that ‘suppressed’ whatsoever on our meds, just closer to working ‘normally’.
Understanding that goes a long way to resetting your thinking about our meds and why we take them too.
Since I’ve been medicated for PsA I’ve not caught a cold. Therefore I can only conclude my immune system is thankfully working a lot more normally. And I appreciate many of you haven’t been that lucky in that. But seriously our meds are NOT suppressing our immune systems, they are trying to normalise them.
How on earth are they telling that difference that definitively? That’s bonkers frankly. And no doubt wholly incorrect.
PsA damage loves to present just like OA does. It’s really difficult to see much difference for the most part even for those very specialised radiologists. And most times only an ordinary radiologists is looking at the evidence too. Much does depend on whether you’re over 60 or not. So I’ll just leave that here. When they stop saying dismissively ‘that’s just OA damage’ which effectively means ‘nothing to do with me’ they can take your disease activity and disease progression a lot more seriously too. So the OA stuff needs seriously challenging more so if your PsA is very active.
There is no cure in the world for any autoimmune disease sadly. There’s lots of med induced remission for many of them, IBD’s being a case in point. They regularly experience coherent remission with and indeed without meds too. I have Crohn’s changes in my cells in the large bowel. Right now I have zero symptoms and have had none for the past few months. It’s likely put itself into remission because I take no meds for it and my PsA med can irritate it.
Us lot with PsA however don’t figure that highly on med induced remissions sadly or much other types of remission. My view is that’s because our disease is so systemic. But we can certainly hit the highs of med induced better management.
I still have PsA and I still get niggles and issues (remember many tendon issues can take up to 3 months to heal up too) but frankly it’s not severe presently. I am slower than I was. I am more careful with what I expect to do than before getting PsA but I’m doing pretty darn well thankfully. And long may it last.
I developed sudden onset PsA as in literally blew up with it aged 54. I’m now 61 and in that time since I suffered 7 osteoporitic fractures (now thankfully medicated so bone densisty is back to normal and no more fractures)) and tried 5 PsA meds. Thankfully my 5th one is still working this well after 3 years as the previous 4 either didn’t work at all or failed within weeks. When I started out that was my rheumy’s goal for me to get me much more stabilised disease activity wise and functioning fairly normally. Right now we’ve probably reached that goal.
But it’s a situation that change on a sixpence as in overnight. You can’t take it for granted at all. So I remain careful and measured in what I do. But most of I remain incredibly grateful to be medically managed this well right now. And I do live my life with optimism because the array of meds we can try keeps expanding. And the research into manipulating the T-cell from the off is growing hugely through varying cancer research which will bode well for us lot too.
So @Amos you’ve tried 3 meds to date haven’t you? Mxt, humira and now Rinvoq. Maybe it’s time you tried another one? To not assess you for trying a new med isn’t managing your PsA disease activity is it, given it’s sliding down that slope towards worse and worse symptoms. I appreciate your issues with your rheumy but maybe it’s time now to get to be a more assertive patient with him and call out his lack on going management of your disease activity.
Hi there @Poo_therapy and thanks for sharing your experience and knowledge…always helpful. Regarding the normalization via meds, I admit that I am confused. I was definitely in the same thinking as you that we are normalized not compromised by meds but the pile of mixed information thrown at us has me rethinking and then thinking again. During Covid, those who were immunocompromised could get to the front of the line for first go at the vaccinations because we were deemed “high risk”. All we needed was a physicians note or copy of a prescription proving that we were on biologics. This was coming from the CDC, WHO and other health organizations. My rheumy also encouraged quick vaccination because I have a “weakened” immune system. So while I still tend to agree with your good logic, yikes, the health professional rhetoric is confusing and potentially misleading. I too went through the covid seasons without a cold or flu. Mind you, I did have that mishap with my chainsaw but I don’t know if I should blame covid, PsA or Rinvoq. (I know who my wife blames…the nut behind the saw!)
You are a good testimony of the potential to feel very close to normal and that is worth celebrating.
The lack of PsA knowledge is so obvious amongst most of our physicians. My GP doesn’t know anything about enthesitis. Last week I saw my GP, showed her how red/purple my big toe large knuckle was and she said, “Oh, that is obviously OA”. I tried to explain how it doesn’t hurt while walking but flares up randomly or an hour after I start to rest. The most pain and bruised look occurs when I am sleeping at night and wakes me up often. Right now, the mentality is that there is no where to go after Rinvoq so go buy some expensive insoles and take Tylenol. Unfortunately, in Canada, we have to play the suck up game with our specialists, treat them as infallible or lose them and it is dreadfully difficult to find another. I would love to blow off steam and warn them “I know this poo person who wants to straiten you out…” but again, I would lose what I have. I’m convinced that my rheumy put me on the bottom of the list because I challenged him on a few issues. He was unreasonable when I didn’t see his “special” foot guy who isn’t covered by our medicare program. Sometimes I don’t see the physio or buy orthotics or a CPAP machine simply because it is too expensive. (I did have a sleep test which revealed, “mild occasional sleep apnea that could be managed by oral devices or changing sleep positions”…he is still ticked off that I buy a CPAP machine from his recommended company. oh well…I hope I make a bit of sense. I think I’m venting. Oh yea…I have also been on sulfasalazine.
Ahh the problem with Covid is that back then they hadn’t a clue what might happen with us lot on our meds. But here is what happened.
The earliest research came out of Italy showing us on our meds catching Covid with no vaccine then available and they did OK. They didn’t all die like flies. That was followed by similar research across the globe.
Then they found the sickest of patients with Covid had ‘immune storms’ a bit like my ‘sudden onset’ PsA and the only meds that helped them were meds made like ours to calm the ‘crazy’ immune system. So if our meds did that then why were we so at risk solely by taking our meds?
So (and these are solely my own thoughts) frightening the pants off us lot as regards Covid was probably unnecessary. Having us shield for months on end was likely totally unnecessary. And the relevant doctors treating us knew no more than each of us frankly. Why should they have known though? Why did we have that expectation? Covid was brand new not only to us but to them too. They were only doing what varying disease infection control regulators told them to do. The disease infection control regulators didn’t have much of a clue either. Therefore as Covid developed and we had the chance to study it, then everyone started to understand better.
So it’s not rational to import a level of tested medical knowledge to the advice we were all given back then by our own doctors as regards Covid. There was no tested medical knowledge available at all, there was just the ‘best guesses’ they could come up with at the time. So of course it was misleading and confusing. But it was trying to keep as many of us as safe as possible. And for that I am grateful. I’m glad I was thought about and not dumped on the possible ‘to die’ list.
We had no idea about the damaging extent of Covid. But it turned out people with diabetes had more risk than us and what ‘load’ of the virus you got to infect you was pretty important, so sadly was skin colour and weight issues and of course endemic respiratory issues. So perversely my life long asthma was probably more a risk to me than my PsA.
@Amos I know a lot of Candians on my PsA med (a med made specifically for PsA and psoriasis too) and other PsA meds beyond the three you’ve tried, who do seem to have a relatively decent working relationship with their rheumy. And who are doing OK PsA wise too. Why not at least try to find another for a second opinion? Not all of them are as arrogant or interested in being as powerful as it seems your present one is.
Having spent a decent chunk of my career teaching rheumys like yours and varying other medical consultants to given ‘cogent’ evidence (not arrogant evidence which falls apart so quickly) in court, I’m afraid every medic I see gets fully questioned as to some of the rubbish they spout out at me. I’m sure I have ‘watch this one’ written in code on all my medical notes and records too. And I truly couldn’t care less. All I care about is receiving the best most rational care for such a very crazy illogical disease as PsA is that I can. But we do have to be our own advocates often and we must confront too. Always.
Thanks again, you have given me much to ponder. You raise a good point about trying other meds rather than thinking (as the rheumy has pushed) that Rinvoq is the best. Rather, I need to find out what is best for me not assuming that whatever is the latest med on the block is the best. There is a bit of a fear of regret as our system doesn’t allow one to drop one med to try others and discover that the previous was better. Once dropped, we can’t go back to a previous drug….even if it proves to have been the best that they can do. (for now) I’m thankful that our optometrists don’t operate that way!
It’s not just the Candian system that doesn’t like you to go back on biologics meds previously tried that’s the system everywhere for good reason too. You can always try cDMARDS again like mxt, leflunomide or sulfasalazine. And indeed you can go and off JAK’s like Rinvoq as many times as you like. Neither of those cause you to grow antibodies to the med. However with biologics like my Cosentyx or Humira etc we do tend to grow antibodies to them given any sort of major break so going back on them tends to simply not work. Hence the edict of not going back but that applies to biologics only.
Sounds like the story I got. I think the biologics may just hold it in check…maybe.
I would discuss with the doctors that they never told you your expectations were unrealistic. Be nice if they actually explained things to us!!
I decided mine were “unrealistic” a few years ago. But I have a doc that is willing to keep trying different meds. May not be an option for you in Canada. I’ll probably be going to an infusion this summer of Skyrizy.
Thought I would jump in here…I am also Canadian (I live in southern BC) and have been on many drugs. The latest one given me is also Rinvoq - however, I have yet to start it as I am concerned about the risk factors for both heart disease and cancer. I am high risk already for those. Furthermore, I have had shingles, have herpes simplex 1 and have recently had a complicated case of diverticulitis - again all things Rinvoq can cause havoc with.
My Rheumy has been attentive and listens to my concerns - but sadly, she informed me yesterday she is leaving practise (She is the busiest Rheumy in all of BC) and she is moving on to training. Needless to say, I am devastated as I have been punted to a Rheumy in Kelowna, an hour and a half drive from where I live in Oliver. Starting all over is brutal…I am educated and play an active role in my healthcare - something many Dr.'s have issues with. I hate the idea of starting all over.
Anyway, I recently came off Otezla - and for me it was very effective…for 8 months. Simponi did not work, I tried Methotrexate twice and side effects were unacceptable. Failed Sulfasalazine twice.
I had - strangely - INCREDIBLE success with hydroxychloroquine. It kept my disease in check for 11 years. I miss it - but eye damage became a concern.
As I pan on refusing the Rinvoq . I am at a loss as to what to try next. The Rheumy wants me on pills as I need the short half life of pills in case I have another bowel perferation…need to be able to restore my immunity quickly. Had I been on biologics when it happened, I may have not had the ability to fight off that massive infection.
That said, my Rheumy told me that although thesee drugs normalize our opveractive immune systems, we are STILL at higher risk of infections. It’s kind of like when you take antibiotics…they do good, killing the bad infection, but thay also do bad, killing the good infection. Immune suppressants cannot gauge where normal is…they just suppress…this does affect ones ability to fight infection. Which type of immune suppressant makes a difference too. Something like Otezla works differnt than an anti TNF or the like.
BTW - I recently read a study that shows great efficacy of Otezla in treating severe covid. (Might be why when I got covid it was soooo mild.)
Anyway - I am terribly frustrated. I have been in a flare since mid Feb and I am VERY reluctant to start on Rinvoq.
I am curious if anyone here has discussed low dose prednisone with their Rheumies or if they are on low dose prednisone?? I read a study of a large group of people on low dose prednisone (less than 7mg a day) for the treatment of PsA, over more than a year, and it said the results were very good, and the negative impacts were almost non exsistent. Thoughts?
brain fart…antibiotics killing good and bad bacteria - not infection!
Hi everyone, I haven’t reached out lately, but I read and learn from all of you. I am so grateful for this forum. Im sorry you are going through all this Amos. I can relate. My PSa is getting worse. Most meds don’t agree with me. Methotrexate= nausea. Otezla = suicidal ideation. Humira= chronic sinus infections. Simponi aria= chronic sinus infections. The next med we are trying is cimzia. Let’s hope it works. I can’t take this chronic pain. My quality of life is suffering. I have been in the worst flare ever. Currently taking prednisone for serious plantar faschiitis. OUCH! I wish i could take prednisone forever. I feel like superwoman, but we all know the side effects of long term prednisone use. Its awful worrying if I will be able to continue working with this insidious disease.I really love my career as a Respiratory Therapist, but it’s getting harder to be on my feet. Thank you for listening to my rant. My thoughts are with all of you. Im trying to stay positive, but it’s hard.
Just wanted to mention that here in BC I have gone back to old drugs a couple of times. Failed methotrexate a few years ago and just went back on it in Dec. (Failed again hahaha). I also tried Sulfasalazine twice after a year off inbetween. And even with the eye concerns the Dr. Said we could reconsider hydroxy as it was sooooo good for my enthesitis and morning stiffness…so anyway, I do not think it is a “Canadian” thing…maybe just your province, or your Rheumy
Thanks for the many thoughts and replies. If my Gp had her way, I would be on low dose prednisone because I responded very well to it. She feels that all things considered, its benefits out way the risks. But I guess it would be experimental as to what the lowest dose would be that would work and not destroy bone mass etc.
Sadly low dose pred helped me suffer 7 osteoporitic fractures in the midst of sudden onset PsA. It was pretty miserable. I was on low dose pred because I was then having a huge issue with PsA meds. Kind of like why you’re considering them now. Thankfully I got over that and became coherently PsA med compliant. I’ve tried 5 meds so far, mxt, sufalasalazine, biosimilars to humira and enbrel and finally and thankfully Cosentyx which has worked extraordinarily well for me for the past 3 and a bit years.
I’m curious as to why you’ve not tried the interluekin biologics, like Cosentyx, Talz or Stelera etc. Incidentally I do have bowel changes indicating Crohn’s discovered a good 18 months after starting Cosentyx but those bowel symptoms seem to have disappeared now too, thankfully.
The ‘normalisation’ of the immune system by our meds is in my view a bigger plus than the rampaging out of control immune system causing PsA in the first place. And for me at least it causes no infections of any other sort.
I tested positive for Covid whilst on Cosentyx and suffered no symptoms at all. Given I’m a life long asthmatic I was terrified of Covid too. But it seemed that Covid infection didn’t want to play with me at all. Thankfully.
The beauty of all JAK inhibitors is that you don’t grow antibodies to them and they leave your system really fast if they cause issues or if you suffer an infection that needs treatment. I can see why your rheumy was thinking they were a good idea for you.
None of the meds are perfect however so sometimes it’s a question of trying the best compromise. The disability and pain levels of uncontrolled PsA is pretty difficult to live with in comparison to the ‘what if’ potential of side effects though. That’s my view at any rate.
Part of the attraction to prednisone is that it brings such rapid relief and when in the midst of a long and intense flare, it is very tempting. I have the prescription but too scared to take it. I was so messed up getting off it last time that I treat prednisone like gun powder…volatile stuff! My GP wants me to use a four day blast of 25mg to break the pain rut that I’m in. She feels that increasing pain causes more inflammation pain and because I have no long history with prednisone, (the longest I took it was four months) it will give me a break and possible better ability to rest.
Rinvoq has been pretty good in many ways but it is still the new guy on the block. It was only approved for PsA 3 years ago.The rheumys have much optimism about it but only time will tell as to how our bodies react to it in the long term. From what I have been told, AbbVie Care is counting on Rinvoq to be the main go to drug for many autoimmune diseases and they are supplying many people Rinvoq without charge in order to spread the good news and get as many success stories out there as possible.
I only rarely take prednisone at this point, needing to reserve it for when it’s the only/best option. I wound up on it for a number of months a few years ago after covid. These days, taking a very strong NSAID for even just a day will often give me the relief that I need, even if it’s just temporary.
Hi Amos, your post helped me. I forget about the progressive nature of this condition. winter’s been especially tough pain wise and I start looking for ways to blame myself. I’m on cimzia for the 6th or 7th year plus celebrex and gabapentin. Looking at your records is a very good idea. All of us in the USA and Canada anyway have this right. My happiness is inversely related to my expectations.
Biologic have too long of a half life. The concern is if I have another bowel perferation my body will not be able to fight the massive infection. Pills have a short half life. Also I travel all winter…have had severe Dengue fever and typhoid. Both would have likely killed me if I was not able to fight infection.