Hey Jaz! Nice to see you back.
Thanks again…it all helps put the puzzle pieces together as I wait for the next appointment. It feels like the whole auto-immune thing is just lurking in the background and being very cunning. I’ve had very little psoriasis spots…but back again this morning. Easily treated with Pro-topic ointment. Nasty powerful stuff but it works.
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Got it in one @Amos. And actually understanding that really helps. Or it does me.
A little more about biologics. Sadly it can take time for find one that works for you, or stays working for you, rather than just waiting till you get resistant to one. Some people are lucky and the first one they try is the one. Others have to search for one that suits them. And if you mess up and have to stop taking it in the first 12 weeks it can slow down or just stop working etc etc etc. Highly complex meds which need treating with the utmost respect is my view.
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I’ve been thinking and reading/researching…while waiting for my next rheumatologists 20 minute consult. (April 7) I have a few options:
- Stay on MTX @ 25mg and use Celebrex as needed(not very helpful during a flare)
- Stay on MTX and reintroduce Sulfasalazine
- Stay on MTX and try 5 mg Prednisone (I’ve read that MTX and Prednisone works very well for many people)
- Stay on MTX and start on Leflunamide
I’m obviously not happy with my current state of pain management. As noted in this topic, mouth sores caused my rheumatologist to take me off anything but MTX but after 9 months…it isn’t very effective. Mouth sores are gone since upping to 5mg folic acid. Looking back, I think the rheumatologist took me off Sulfasalazine too early…it may have been starting to help but the mouth sores interrupted things. I’m ready to just self medicate and experiment until biologics finally get applied. I’ve got standing prescriptions for all of the above. (Except biologics). I suspect that between 5 and 15 mg Prednisone will turn me back into a super hero jumping tall buildings! What would YOU do?
Knowing what I am going through, I wouldn’t plan on taking prednisone for longer than I’d absolutely necessary. And a few months at 15mg is definitely more than is necessary. I would continue taking the mtx and folic acid. If you’re having increased symptoms, I would add in anti inflammatory meds on a schedule, not just as needed.
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Avoid the pred at all costs sadly - that’s what I’d do. It’s a false positive as it doesn’t ‘stop’ anything, simply overrides things. And it causes a myriad of other issues along the way. It’s caused me to start the osteoporosis journey too. Pred is never an answer it’s simply a ‘rescue package’. So I’d avoid that other than simply requiring a 10 day taper dose where it can turn everything so positive but it then it always just ‘bites’ you on the bum afterwards.
So I would stay on mxt and either introduce sulfasalazine or leflunomide sadly. Or persuade your rheumy to introduce biologics.
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I don’t think many long-term PsA people here would recommend self-medicating or experimenting with the drugs you mention. Experiment with turmeric capsules perhaps, or green tea or more water or different exercises etc. but not with all this strong stuff. The only way I’d deviate from rheumy’s instructions would be to stop taking things that really bug me and that would be after a lot of soul-searching.
Also very difficult to experiment with DMARDs between now and April even if that were advisable. The effects of different quantities or interactions between them just take too long to evaluate properly in that time frame.
My ex-rheumy said that if he gave steroids to random people in the street they’d all feel better than they did already. But I wouldn’t mess around with them, oh no.
It’s good you’re identifying a range of different treatment regimes though. Almost everything you’ve written here sounds like the basis of a very relevant email to your rheumy. Especially this statement:
I was hoping to hear that 5mg prednisone is a great idea…safe and wonderful! Rats! I know you are speaking from experience…but man, I’m not very good at this waiting game that moves forwards only by standing still. By nature and past occupation, I’m a problem solver and efficiency was always important. Observe, test, diagnose and just do whatever is the most prudent thing to do…and do it today! To wait for 2 more months of lousy sleep and life being hampered by pain seems so unnecessary…its one thing if this is as good as it gets but I still have a lot of hope that it can be a lot better. Hope is what drives my impatience. I’m expecting that my rheumatologist will put me on one more dmards in April…why not do that now? Sorry, I’m asking questions that aren’t really directed at the good folks on this forum. And I can’t really be mad at the rheumatologist…she is in high demand and has to spread herself amongst many people far worse than me. I don’t think she does emails and certainly won’t respond to a phone call.
You have been patient and also very reasonable. You are aiming not to become one of those people far worse than you are at the moment. Someone in her team will open a letter.
Doesn’t she have “My Chart”? I’m silly, but I thought that was a universal thing. All of our doctors have it and it gives you a connection with your MDs that doesn’t require an office visit. Plus, all of our records and doctor/hospital notes are viewable in there. It’s a “free” service (I’m sure the cost is built into their general fees).
My mom and I have the same Internal Medicine Doctor. She’s been prescribing low-dose prednisone to my mom ongoing for almost 20 years and my mom’s 95 and doing pretty well. I hope someday she’ll be ok with treating my pain with prednisone if I ask for it.
By law, all patients have access to their medical records but very few hospitals or health care providers make it available online. I would have to bring a thumb drive or some means of getting the data from my GP…or it could be printed. Its slowly coming to Canada but still in the dark ages.
Are you sure we’re not related in some way @Amos? I’m exactly like that. I remember exploding at my rheumy at an appt about the sheer horror and ridiculousness of now living my life in 12 week batches, seemingly never getting anywhere. And did she realise what an absolute torture that was? Etc etc. I actually ended up in tears too much to my annoyance. She understood and took the time to explain the science of the 12 week waiting periods which helped - a little. But since then my treatment has always been incredibily efficient.
I don’t think it matters what you think your rheumy doesn’t ‘do’ as regards phonecalls, emails or letters. I’d do all 3 anyway, persistently and relentlessly until I got a sensible response. Or to put it another way, I’d now ensure she will now ‘do’ all three and with aclarity too. I never think there’s anything wrong in making changes happen of this nature.
It’s my illness, my pain, my incapacity, my side effects and the rheumy is there to ‘serve’ that in the hope of making things better. She’s not in an ivory tower, her professional standards and ethics don’t permit her to ignore patients etc etc etc. So why think you can’t demand more of her time when you do need more of her time? And you do need more of her time, right now. You’re not loopy or one of those people who want to be at the doctor’s all the time, quite the opposite I’m guessing. But you’re in pain, your present treatment isn’t at all working and has been reduced and things need to now move on, pretty quickly indeed. I agree hanging about for another 2 months is plain silly really.
Persistence by definition always wins.
Hi Amos. I whole-heartedly agree with Sybil and Poo_therapy that you deserve to get the attention you need from your rheumatologist. Working as an assistant for a rheumy’s office, we always appreciate a phone call whenever a patient has questions, comments, or updates, even if we are super busy and might not be able to resolve everything immediately. Even if we can’t reach the doctor at that exact moment when you call, messages from patients can be sent to the doc to respond once s/he has the time and get the ball rolling, which is much better than waiting a couple months standing still. Unfortunately due to a short supply of doctors, many rheumy offices are very busy and there are (almost) always going to be other patients who are in worse condition, but that doesn’t mean you should have to stand by and stay in pain with no attention at all between appointments. You have been very patient and understanding of your rheumy and as a health worker I am very very appreciative of your kindness, but don’t be afraid to let them know what you need even if it seems rude to ask. A good doctor will work things out to make sure you can get taken care of. You deserve it!
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Time for an update since i asked, “What would you do?”
Next week I will put pressure on my rheumatologist and insist on a prompt appointment rather than waiting till March.
Because I have been on my feet with a week long speaking engagement, I took 5mg prednisone last Sunday and 2.5 mg per day for 3 days after that. By day 2, I had the lowest amount of foot pain in the last 3 months. Renewed normal amount of energy and all other joint pain backed off substantially. Since off the prednisone, everything is coming back. I was surprise how effective such a low dose was but I have never taken prednisone while on MTX. My GP will tell me that quality of life is very important and at that dose don’t worry about. But my rheumatologist will likely mess around back to another dmard. Sure wish it were easier and I could settle into a routine. Since upping the folic acid to 5mg, I haven’t had ny mouth sores or issues.
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Glad you’re going to push for a much earlier appt with rheumy. Really glad such a low dose of pred worked so well for you too. Be careful of any rebound though. And really glad the folic acid did exactly what it was supposed to. Let us know how you get on with getting an earlier appt with rheumy.
Something that eased my mind at the stage you’re at was having a rheumy who really wanted me to commence biologic therapy. I understood why he tried a 3rd DMARD - he didn’t want to but due to cost he was under pressure to ‘stretch’ the protocols and try yet another cheaper option.
It’s unlikely that your rheumy enjoys apparently messing you around. I still think you need to get a better dialogue / understanding with her. I know, I know … it’s the ‘20 minute challenge’!!
Worth trying to confirm whether or not biologics are in her sights. If not, I’d be tempted to look further afield, inconvenient as that may be.
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Yes I agree. If the specialist would even allow up to 3 brief emails per month, the system would become far more efficient. Some appointments could be eliminated as quick questions require short answers. Like, “my mouth sores are gone, should I continue with sulfasalazine or try Leflunamide?” But with the no phone calls, no contact until the next appointment, months are lost in the waiting. She is now on holiday for a few weeks…wait it’s out.