Hello again, well I did it…went for a second opinion. The Prof. had a cancelation so I got to see him yesterday!! I was in there for 90 mins. He gave me a thorough examination, went over medical history and tests and did diagnose PsA. However he said it is very mild and that is why he agrees with the Rheumy not to go any further yet other than continue taking the NSAIDs. So basically he said what my Rheumy said but in a nicer way!!
That’s fine. This makes you more comfortable with the diagnosis and the treatment probably. The same thing may well happen with my husband when he gets a second opinion with my rheumy. The first one that he saw, I thought he was an idiot.
Check out my post at Good rheumy/bad rheumy
I’m a little confused, (which is not unusual), did the first rheumy actually diagnose PsA? I’d been assuming they didn’t. Personally I’d be a little wary of settling for NSAIDs even with ‘mild’ PsA, I do not relish taking the DMARDs etc. but I like that they are aimed at preventing joint damage. But still assuming that you’ve gone from no diagnosis to a firm PsA diagnosis, that is real progress for sure.
There, Yael, it’s amazing, isn’t it, how getting someone else’s take on your situation helps it all make sense.
Now a word about “mild”. The amount of pain you feel can be unrelated to the severity of your disease. Mild disease doesn’t mean that you will necessarily have mild pain. I know, I know, it makes no sense. Conversely, we’ve had people here with severe disease who thought they were being whiners when they said they ached. And the severity of your disease can change! That is why it is important to be seen by a rheumatologist at regular intervals. Often that is six months. What did the professor suggest in the way of follow up?
Finding out that you do, indeed, have PsA isn’t exactly a cause for celebration, but it is very good to know what is going on, and to be in a position to keep an eye on it.
Just out of curiosity, what did the professor say about fatigue? Your rheumatologist kind of blew that of, didn’t she?
S
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It does make one feel better, but keep in mind doctors are brilliant when they agree with us. Followup is critical. I think I’d have a talk with doctor number one. Dr. two told you what you wanted to hear, it gave you relief etc etc. BUT (there is always a but with me) I’m not convinced Doc two is any better. You see there is NO SUCH THING as mild PsA (or for that matter any inflammatory arthritis.) Heres the difference:
There was once a brilliant gastroenterologist whose fame spread far and wide. He had the reputation of treating the worst of cases with best results. If nothing worked, his magical hand would.
But, this brilliant guy had a deep burning passion of his own. He had always wanted to be an automobile enthusiast. He had always dreamed of tinkering with cars in his garage and indulging in motor sports.
So, one fine day he decided that it was time he should realize his dream. Being brilliant, no doubt, but without experience; he decides to enroll in an automobile repairing course.
His burning passion made him absorb whatever the course had to offer and he was ready for the test. He gave the test and performed brilliantly.
But, when the results came, he was left baffled.
He had scored 200 out of 100!!!
Being an honest gentleman, he thought of getting the mistake corrected.
He goes to his instructor and points out the extra 100.
The instructor sits him down and says:
“You dismantled the whole engine perfectly, so I gave you 50/50.
You re-assembled it back again perfectly, so I gave you 50/50.
But by Jove, I’ve never seen it all done through a tail pipe. That’s where you
get the extra 100.”
It was easy for doctor 2 to say PsA. But in the end he didn’t do squat. Now I believe early aggressive treatment is the least expectation (and frankly most protocols agree with me) When you PsA is no longer “mild” its too damn late. You already have damage that can be seen (thats why its now moderate - look it up) and likley have “degenerative changes” which some of these guys will call OA, Old age, being fat, working too hard etc. In the end there isn’t a bit of difference between the Brilliant GI doctor and Joe the mechanic. They both got it right… Style doesn’t matter, results do.
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I totally get it tntlamb (the story helped!) and thanks to the others for your input. The Prof confirmed when I asked him do I have psoriatic arthritis but actually in his letter he wrote “sacroiliitis with psoriatic background”. He explained that there are discussions in the medical field whether to treat immediately with biologics or start with a less aggressive treatment. He felt in my case I should continue the NSAID for another 6 months and then do an MRI again.
I am quite concerned about biologic treatment. Injections, weak immune system - other side effects? I am not sure if I want to go down that road especially when it doesn’t don’t cure completely. I haven’t looked into this much because it hasn’t yet been suggested to me by the drs.
Just something else -I was wondering - do anyone of you have night sweats?. I am on hormones for menopause but I still have night sweats on and off. I was wondering if there was a connection and nothing to do with the menopause.
yael, without medical knowledge I can’t say whether sacroilitis is caused by PsA. But ‘itis’ means inflammation and PsA causes inflammation big time. I’m pretty sure it is possible to get inflammation independently of PsA but my ‘PsA antennae’, the ones that have grown considerably over the last 4 years, would be wiggling like crazy if a doc drew a dividing line between any joint issues and my PsA. It’s something I’d investigate more at least.
There is ‘less aggressive treatment’ that often precedes biologics and that involves the traditional DMARDs, i.e. Methotrexate and co. There is some doubt as to how far they prevent joint damage in PsA but one thing is for sure and that is that NSAIDs do not. Thing is, there is symptom control, which is of course highly desirable and a lot of things including exercise, good diet and, I believe, NSAIDs may help with that. Then there’s disease control, preventing irreversible joint damage. You’re right, there’s no cure but it’s the joint damage that really messes us up and I’d say that is the one main reason why so many of us advocate biologics.
Another thing to consider is that many health & health insurance systems require patients to try a DMARD or two before they may qualify for biologic therapy. So where I am getting on a DMARD pronto is an insurance policy of sorts. Don’t know if that applies in your country.
I’ve never had any side effects from biologics. Humira makes me feel well and provides the very best chance of keeping me mobile and getting the Christmas cake cooked. If you’re inclined to find out more there is a lot of information on this site about biologics.
Of course what you decide to do is up to you, I’m not lecturing or hectoring I hope. I’m just trotting out all the stuff my PsA antennae are telling me to, just in case it helps.
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Thanks Sybil - that really helps. I will look into biologics further and maybe DMARD - at the very specific moment my lower back is killing me and I feel like taking 3 months worth of NSAID all at once!!! but as you know it comes and goes and probably/hopefully tomorrow I’ll feel different. Still have to see what Dr. says at end of Jan before I can change treatment.
Me too, strangely enough, exactly like you - lower back is murder.
Here’s my read on NSAID treatment. If you see two 80 year oldarthritis patients walking and one is motating great and the other is not. You don’t look at their arthritis you look at their kidneys. The good motator has great kidneys and poor motator does not. You can BET the kidney patient has a long history of NSAID use.
There is not a single drug in the arsenal that has more or more severe side effects than NSAIDs (except maybe prednisone) We have been conditioned to believe NSAIDS are safe and everything else is not. It is a lie. The most likle reason you are on an NSAID regime at this point is to qualify you for the $30,000.00+/year biological treatment. Yes Bio’s suppress your immune system but keep in mind it NEEDS suppressed. Long term data suggests that us bio users don’t get sick any more often than non users and we do NOT get sicker than when we do. IN FACT we have ewer hospitalizations than non bio users due to infection. (Disease control is a great thing) AND we have more healthy kidneys.
You’ve worried me about the NSAID now 
! It doesn’t even help. Still in pain. OK but how to I get my doctor to prescribe biologics when the clinical findings are only “mild”??
After a number of years of using NSAID’s, I took myself off of them last year, at least on a scheduled basis. My blood pressure is rising, and my hearing isn’t what it once was. And I’m only 45. The more that researchers know, the more clear it is that long term use of NSAID’s is unwise.
How did I do? After having a rough few weeks, I’ve been fine overall. I am on a biologic and an oral DMARD.
Hi yael, I am sure tntlamb will clarify if I’m off-piste here, but I doubt that short-term NSAID use is particularly risky. I think it’s more the long-term reliance on them that is best avoided if possible.
It is hard to know exactly what to ask our rheumys when we’re at the beginning of this PsA journey. It took me a while to realise that it’s important to ask them what the longer-term plan is. In the UK the NHS goes by certain protocols for treating PsA and it may be as well to try to find out if there are any agreed pathways where you are. Could be, for example, that starting with NSAIDs is the usual first step but given what you’ve heard here you could ask how long you’d be expected to stay on them. I don’t know if 6 months is pushing it a bit, but I probably wouldn’t want to wait that long if it was possible to move on with treatment sooner.
Could you contact your rheumy to put some questions to him about where he sees treatment going? I think you would be on very firm ground if you were to mention that you are wary of long-ish use of NSAIDs and also that you know they will not prevent potential joint damage. Plus if your joints get more swollen, more painful, or inflammation shows up in your bloods etc. etc. that could help you make a case for biologics. A lot depends on whether there are certain pathways, protocols, algorithms or whatever they call them that ordain how things go.
Thanks Sybil - yes I’m just at the beginning. I’m in Israel and under a health plan so I am sure they don’t just jump into biologics (due to expense) without other options first. My next appointment is end Jan but I run out of NSAIDs soon so I’ll have to contact her (but by phone) for another prescription. BTW - back feeling a lot better now - no reason (apart from an afternoon rest) - very strange this thing, the level of pain comes and goes. Now my hands hurt!!!
Its the long term use thats the problem not short term. It seems that rotating lessens the long tern effect but there really isn’t good data on that.
I’m sorry if I scared you that wasn’t my intent. NSAIDS don’t effect disease progress (this we know) and can make you feel better. The other thing is NOT all PsA progresses. so a wait and see is not always a bad thing if your doc is on top of things. FWIW Rheumys aren’t the best explainers/teachers so you do have to ask as Sybil and Stoney pointed out. If asking doesn’t give you a plan, step 2 is demanding.
[Here](file:///C:/Users/Tom/Downloads/Guidelines-psoriarsis-sec-1.pdf) is an international protocol which BTW Israel was a part of developing. It can sure give you some ideas of whats going on. (this one comes from primarily dermatology)
From what I understand from Israel is quicker to the biologics when the Ps is greater than the A which is not unusual as the DMARD step isn;t rreal helpful to the Ps so working both Rheumatiology and Dermatolgy isn’t a bad plan either. Step therapy is pretty much the norm world wide…
Hi yael,
Just wanted to also put my two cents in about bios being safe. I was mostly worried about my immune system–that’s the big reason I waited several years before getting on a biologic. I’ve been on Enbrel for almost 2-1/2 years now and I can remember having two mild colds and strep throat once that responded quickly to penicillin. That all happened during the first year. I haven’t had any viruses in over a year now, so I think that’s a pretty good indicator biologics don’t mess much with the overall immune system. I do have a low white cell count, but the doctor tells me the certain cells within that WBC count that protect me from infections are normal–I don’t quite understand how that works, but I take his word for it, considering I’m around coughing and sniffling grandkids and college kids at my job nearly all the time and never catch the stuff!
I’ve been instructed not to take NSAIDS (they bother my stomach anyway) because I’m on a med called Plavix that makes my blood slippery to avoid clotting since my stent was put in. They say if it eats holes in my stomach I could bleed to death from that! I did ask my rheumy at my follow-up this week if he thought PsA or being on Enbrel had something to do with my clogged artery and enlarged heart. I told him how when I was really sick with my PsA symptoms a couple years ago I felt like I wouldn’t live past 70 my body was so weakened and my heart felt “tired”. He really couldn’t say positively whether or not PsA had anything to do with it and he was fairly certain Enbrel had nothing to do with it. He said in my case it’s more likely the heredity thing as my sister and brother (who don’t have PsA) both had early heart attacks.
It’s all so complicated and who knows what kind of damage our bodies are having from all of this? I have always been good to my kidneys as far as not taking too many pain pills, and I stay away from prednisone, too, since my doctors scared me about how dangerous it can be. I’m extremely lucky Enbrel has been my good friend–no side effects, no downside to taking it other than how expensive it is, but here in America there’s “Enbrel Support”, which pays a big chunk of it so I only have to pay $10 a month! The only thing here is that once a person goes on Medicare, which I will in about 2-1/2 years if I retire at 66, I’ll have to switch from Enbrel to Remicade and I dread that!!! I’m already stressing out about it and hoping I can continue my job until I’m at least 70 to stay on private health insurance and Enbrel.
It’s stressful thinking about what PsA is doing to you, yael, and I hope you get some solid answers soon and can go on with a less painful life–it really is possible, hang in there!
Whilst its good to hear from all your experience I am so sorry that you have been suffering. I do think that my situation is mild in comparison. I have decided to wait and see but the infomation you have given me is most helpful and I will be in a postition of better knowledge when I see Rheumy end Jan. Thanks so much, Grandma J, Stoney, Tntlamb, Seenie, Sybil and wish you lots of pain free days.
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Thanks yael! Wishing you all the very best too. Keep dancing and let us know how things go.
Yael, I think you are moving in the right direction: you have a diagnosis and what sounds like two competent rheumatologists on your team. As for “mild”, our friend tntlamb is likely to say “having mild PsA is like being a little bit pregnant”. I have to concede that he might well be right: while my first rheumatologist was saying that I had mild disease, I suffered extreme joint damage in both my feet and my hips. My gut feeling was that she was wrong, but I felt I needed to trust her. She isn’t the one paying for my mobility scooter, though.
I’m encouraged, as you must be, that it’s only a bit more that a month before you go back for another check. That is excellent.
Happy holiday season to you, Yael, and be sure to keep us in the loop here.
I would wait and see if NSAID works, but at next appointment if you get vague information and being told some of your symptoms are being dismissed, I think I would move rheumys. But try and be patient, as i have learned nothing moves fast in the treatment of PsA. I wish you the best going forward.