I would welcome any advice for my appointment tomorrow morning. I am getting a second opinion, fresh set of eyes and hands with a rheumatologist. I’m down to 2.5 mg Prednisone and having old stuff come back like greater knee and foot pain. My goal is to be seen while hurting…success! Not sure what approach to take. Go in with all my experience and “knowledge” gleaned from the last 16 months or just shut right up and let the rheumy lead?
BTW, I just read through a series of old posts from 2014 July when I searched “prednisone”. …oh man, I had no idea the amount of “guff” you moderators have had to put up with! You all are incredibly gracious but true to your mandate for this support group. Thankful for each of you, be encouraged!
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Going in on the low dose of prednisone is definitely a good move. personally I would probably start off with an overview, and then obviously the doctor will do an exam. I wish you luck with it. Prednisone for long term is not the greatest game plan.
We live in the age of the internet and you’re an intelligent person who has had a long time to live with your symptoms and try to make sense of them. Therefore I don’t think there’s much point in pretending that you have zero knowledge of PsA or the best treatment for it.
You’ll need to listen and to answer questions for sure. But I’m sure you’ll also know how to contribute relevant knowledge and your own experience as appropriate.
Wishing you a very positive appointment.
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Is there a standard exam for Psa so that I have an idea as to what should be done? Last rheumy took less than 10 minutes for physical check on maybe 6 joints, arms out, palms up palms down. It would be good for all newbies to have something to expect from their visit. When do I stop being a newbie? Maybe after graduating to my first biologic? What do you think of having “banners or gold stars” to celebrate landmarks like…who has had the most biologics, the longest on one biologic, the most ridiculous herbal cure tried… 
We might as well keep a sense of humour about it all. Laughter is still my best medicine! I’ve been thinking of making a crossword puzzle with Psa terms but would need input from @tntlamb.
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So I get a full exam of my systems. Lungs, heart, eyes, mouth, belt, etc. Joints its thorough as well. Large joints all get moved for range of motion, small joints are felt and visually inspected. It’s a relatively quick exam, but thorough. I also get asked questions about symptoms. Mind you, my first rheumy just retired, and I started seeing her replacement. Same thorough exam. Also questions about meds, any side effects, etc.
Delighted you’re getting a second opinion. Delighted you’re low on pred too. You truly need to get off it though.
Google a PsARC examination - that is what should be done for PsA by the rheumy in the UK. It permits the recording of the state of each of the present 68 joints currently deemed affected by PsA. Some argue the number should be increased but it’s certainly a good starting place.
Don’t let them just do 28 joints as that’s only for RA.
God only knows why your original rheumy only looked at 6 joints - that can’t have told her much at all.
You can imagine what I’m like in a medical examination! I let the doctor go first and I listen and I answer questions and then I take over and get them to answer all of my questions and won’t leave until they do!!! I ask a lot of questions beginning with ‘why’. Sometimes those are ‘why haven’t you…’ also.
Best of luck and tell us how you get on.
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Well I got my second opinion today from the province’s longest standing rheumatologist. The appointment was right on time and the first thing he said was, “Thank-you for taking the time to write out your journey for me, it is very helpful”. Whenever I would go see my previous rheumy I would bring a typed condensed diary of my ups and downs, flares and triggers…she never read one of them. He is over 60 and loves his work each person being a new challenge for him to get on a journey to a better quality of life. Has no intention of retiring anytime soon. He asked why I was still on two primitive meds that obviously aren’t helping much. He described MTX as throwing a blanket on a fire…kind of chokes things down for a while but not anywhere near as effective as the biologics which can snuff out the match that starts the fire. Sent me for a pile of blood work and commented that I have never had a urine test and a bunch of blood chemistry stuff was missing from previous requisitions. So, after a fair bit of poking and prodding he has every reason to confirm PsA and that I should get on a biologic as soon as he can get it approved with the Health Care panel who have to give their ok to finance it. (technically they could request another Dmard but he has a degree of influence on them) Might take 10-14 days for lab work to get completed etc. , he will review the results, send for me for a chest x-ray and TB test. He also commented that it is good that I didn’t go on Leflunamide. He said that it seldom helps and that it is just MTX with an additive and if I have a bad day after MTX, Leflunamide will be much worse. “It’s old school stuff and I haven’t seen it actually help”. He is quite positive that a biologic will benefit me greatly. But while in the waiting, he did say, “No point in feeling so miserable, at this point if you function much better with 7.5 mg prednisone, then take it and I’ll get you off that stuff once we get the ball rolling”. He was cordial, efficient and ended with, “We would be glad to serve you at our clinic”. Oh yea, he asked why I wanted to change from the previous rheumatologist. I said, “She told me that at 60 I am getting old and should expect a certain amount of pain”. He sighed and mumbled something about “millennial doctors…don’t realize that they are here to serve the patient”. First impressions: I think I found a good one!
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Amazing! That’s really good news that she was so thorough.
This looks good. I have to admit that unlike @Stoney, I generally don’t get a full MOT anymore - although it’s so long since I’ve seen the consultant that half of my MOT-able parts will have fallen off by the time I get to see them! Writing stuff down is something I’ve often found useful, too. I was in a very bad place with my bipolar several years ago when they were trying this drug and then that drug, and I ended up writing a long letter about two weeks before my appointment, acknowledging that they had to try them before biologics but to try to take into consideration that there were other parts of me that were ill beyond my joints! Sadly all specialists seem to forget that the knee, heart, brain, teeth or whatever they happen to examine work in conjunction with other bits of us!
Finally @Amos. He sounds competent, thorough and does what any PsA rheumy should do - want to treat you aggressively. I’m so delighted for you. Hopefully in a few weeks time you should be on your way. Did he mention which biologic he wanted to start you on? I’m so relieved for you frankly - that other rheumy has an awful lot of catching up to do if she wants to turn out at all competent. Meanwhile enjoy the pred.
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I’ve read your account of your appointment 2 & a half times now and I still can’t see any way in which it could have gone better!
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Yes and I am thankful for all who have walked with me here. He didn’t mention which biological he has in mind as of yet as he said he needs to ponder the blood work carefully. He also examined my finger and toe nails and commented on pitting that is beginning…didn’t happen before. The whole medical system is very slow and I think many of us have been “trained” to accept sub-par treatment. As has been posted here often, we really have to be involved and self advocate while living graciously with rheumatologists who are equally human and subject to all the good or bad traits we humans have to offer. But it was very freeing to cancel my appointment with the first rheumy and tell the receptionist, “I found a new Specialist”.
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Amos, I read your description, and like Sybil, it sounds almost like a dream to me. I am so joyful for you - you really do deserve it, you have been so patiently reasonable despite the challenges, and I’m looking forward to hearing things improve for you soon.
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I love the response from your rhuemy. It suggests that maybe your getting older could be the source of your ailments. My first Rhuemitoligist was a collegiate swimmer. She said " when I move my arms it hurts " while she motioned the butterfly swim move. " is your pain like that?" she asked. She was suggesting that wear and tear is a possible source of pain and damage. All the while, I’m sitting there with sausage fingers and toes, questioning myself if I was at the right place to take of my health needs. The lab results then showed the c-reactive as evidence. The MTX, prednisone, Humira journey began from there. That was 2014.
In my experience, it is advisable to stay off of prednisone as much as possible due to rebounding affects. This being said, when I was at my worst, my doctor prescribing me a " bump and taper" prednisone regimen resulted in the long running benefits I have today. Though, I cannot say I’m in perfect symbiosis with my meds and PSA now, I still hold prednisone as a last stop measure and not a " go to" response.
Currently, though, my last lab had my Eosinophils is at 19.9 %, so i’m really wondering if I’m sick or am I having a flare? I’ll be checking in with my Rhuemitoligist ( whom I so appreciate)soon.
Thank you for your article,
Be well
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Time for another update! Its been a week since my first appointment with new rheumy. Monday 9 a.m. I received a surprise phone call from him. He began by apologizing for not getting back to me before the weekend, he was swamped with patients but spent time on the weekend at the cabin studying my charts, blood work etc. He is convinced that I need to get on a biologic and expects really good things but I have to be approved for the $$ coverage. He applied for me but I was turned down as they are sticking to their requirement of 3 failed DMARDS. He won’t put me on Leflunamide (like the previous rheumy) because he said it is, “MTX with an attitude and because I already have a bad day after MTX, Leflunamide will be much worse”. So his course of action is adding to my sulfasalazine and MTX a very mild daily dose of Minocylcine. 1. It has been approved as an anti-inflammatory for arthritis purposes so it might help and 2. if at any time I feel even slightly ill from it, he can mark as another failed DMARD and move me forward. So, good news as to how he is handling this. He also said my blood work is not as clear as he would like (mixed results) because of the prednisone. I need to get off of it. But I suspect that I am suffering withdrawal as at 2.5 mg, I am not doing well. Increased flue like symptoms and headaches that keep me from functioning. I feel like garbage! As soon as I add even 1 more mg of prednisone I perk up a lot. I suspect that my adrenal gland is pretty lazy. So at this point I can’t tell if I am having a flare of Psa or prednisone withdrawal or both! I’ve never been addicted to anything but man, it is very temping to reach for the bottle of those little white pills cuz THEY WORK! He did say that I need to work out a taper plan with my GP…(my plan isn’t working so well). Until then, I remain optimistically preddy-zoned!
I am seriously loving your new rheumatologist. He operates like mine does. It makes you feel safer and more cared for doesn’t it? Give the next ‘DMARD’ a go and see.
Pred tapering. It’s hard but the flu like issues pass after a couple of weeks. So it is sadly more of issue of enduring them with your GP support. You’ll work something out really you will. Just a notion but it might be useful to up your B vitamins at the same time B12 especially. And Vit D. Talk to your GP about that too.
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Wow, that is refreshing to hear about the rare doctor who is competent and cares!
Good luck!
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I love that your doctor is on the case and has spent his weekend studying your charts etc.!
The blood work thing puzzles me … so many of us show little or no inflammation in terms of CRP or ESR almost as soon as we start DMARDs and I believe the effect is even more pronounced with steroids. Yet that doesn’t mean that all is well - it’s the physical exam that usually gives the lie to that.
I think my CRP went from 45 to 0 after a few weeks of low dose steroid treatment. Yet I still couldn’t walk etc. Sounds like a case of silly old insurance company though, from what you say your rheumy will find a way through to biologics.
I also have very few visible signs of inflammation but high levels of pain. Knees and feet just keep at me. What we hear from the medical system likely isn’t the whole story but fresh eyes and hands are refreshing. This rheumy didn’t second guess the diagnosis at all while the first rheumy said she was unsure because I had such little response to the Dmards. Pressing on!
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Yes, I feel in good hands with someone that certainly has much experience and seems to possess a level of genuine care. Good tips, thanks.