Thanks for the replies. I think that the rheumatologist is a bit surprised and frustrated that I haven’t been much better on the MTX and Sulfasalazine. The prednisone is a bridge to who knows what is next. I seem very sensitive to slight changes of the amount of steroid. I feel less joint pain at 7.5-10mg but get strange swirly images in vision…not looking at an object but on the side lines…not sure if that makes sense. I’ve dropped down to 2.5mg for 3 days after 3 weeks of 5 mg and feel lousy. My head is off and mood affected. (I’ve never been moody or “down”…just blessed with a lifetime level disposition) I guess I’m at that decision point of “feel better and the heck with the risk of future side effects of prednisone or try and adjust to the pain (again). My rheumatologist intends well but is very new in her profession…and not a good listener. Its like she doesn’t know what to do when her flow chart of remedies runs out and she gave me prednisone to stop my complaining. Also, I think it has become a bigger process/longer to get on biologics in our province. Because I don’t have any real obvious nasty outward symptoms like very bad swelling in the toes or nails falling off etc, I have trouble explains the degree of pain that gets her attention. I don’t think that she has the experience or “touch” that can detect inflammation and has an aversion to touch or feel of another persons joints. Kind of like a massage therapist who mails you a bottle of massage oil but won’t get close! BUT, I have mobility and a degree of optimism.
Do you still have any tender joints / swollen joints? In the UK the key aim of treatment is to address these ‘red flags’ for joint damage. In fact it’s the same internationally as far as I know - the key role of disease modifying drugs, whether traditional DMARDs or Biologics, is to prevent joint damage and disability.
So I can see that it is indeed possible that your rheumy thinks your disease is under fairly good control and is now looking for ways to tackle pain, especially if joints that were once notably swollen have returned to normal size since starting treatment. However how your rheumy would know that joints are now much better without doing a thorough physical examination is beyond me. She should be paying a lot of close attention to joints, including looking for those that are painful or even tender on palpation. Not all rheumys are great at physical examinations but they should be.
Incidentally, having a naturally sunny disposition is a huge advantage. Keeping it quite that bright throughout the thrilling PsA ‘journey’ is a big ask.
My joints look normal to me but knees are very tender. Can’t walk down the stairs without holding railing but going up is better. Foot pain moves around a lot from the heel to ball of foot. It’s like the pain is deep inside the soul (foot not other soul!) and runs along the outside edge. They feel better moving but after sitting for a bit the cramping ramps up and leaves them tired and sore. My attempt to go from 3 weeks of 5mg prednisone to 3 days at 2.5 and zero today was a bust. Major flare up, headache, body ache…terrible joints including elbows and back. Legs felt like my quads had been beaten. So I grabbed my prednisone like a junky looking for a fix and in 5 hours all symptoms hugely reduced, thinking clearly and waking without a limp. Yeesh! I’m hooked! I was absolutely useless and now ready to split fire wood. It’s like I need the steroid to make the mtx and Sulfasalazine work at all!
Besides osteoporosis, steroids like to give you cataracts as well. I wonder if there’s any connection with that swirly peripheral vision thing, you suffer when the pred is higher.
Since your joints aren’t being ‘tracked’ by what we call in the UK a PsARC exam which is a physical joint by joint examination of the 68 joints known to be affected by PsA, it will be really difficult for your rheumy to come to any conclusion on your disease progression other than of course the mxt and sulfasalazine isn’t quite doing enough for you and you and pred are having too long a relationship.
You say your rheumy isn’t a great listener, can she read? I find I do lots better in getting my point across in the written word. I can be very direct and to the point in writing. Blunt even. Brutal even when necessary. And when I’ve previously got frustrated with my doctors, I’ve written to them. It produces excellent results and invariably an abject apology. Solely because of course they know what I write has to get added to my file, whereas what I say - they can just make notes on and express that how they wish. Stuff that’s required to be added to my file can get read by other people, hence the usual good reaction to what is effectively a complaint about their lack of care of me.
To be blunt @Amos your rheumy’s treatment of your PsA isn’t that cogent or optimal, given you’ve certainly done your time on DMARDs now. Bouncing you into a long relationship with pred at your age isn’t a good idea frankly. So if I were in your shoes I’d be making it really difficult for her to continue on that vein on a professional basis. I’d be calling her out on it and asking her confer with her superiors who have more experience. And if she continued to refuse to do that, I’d be calling her negligent.
Don’t get hooked. That just sounds like how things are when the traditional DMARDs haven’t really got the disease under control - pred seems like magic then.
I hear that rheumys aren’t starting people on biologics during the pandemic, so maybe steroids are the best option at the moment. But if that’s how it is you need a rheumatologist to tell you that, we can give our views from our own experience but the discussion about the whys and wherefores and safety of a course of prednisone needs to be between you and your doctor.
It all keeps coming back to whether your rheumy is on top of things and the communication with her. You’ve been trying to second guess your rheumy’s strategy for so long. I find it strange that any rheumatologist would be particularly ‘surprised and frustrated’ by Mtx and Sulfasalazine not quite doing the job. You shouldn’t be having to read her emotions, she should be explaining her thinking and her plan.
Sybil is right - the way you are describing that, it’s unlikely the MTX and sulfasalazine are working much at all (but don’t stop them without talking to your Rheumy - they might feel like they aren’t working much but could still be doing nothing).
Remind me how long you’ve been on those steroids for? After I’d been on steroids 9 months, it took me at least 3 MONTHS to taper off. And that only worked cause I got on a good effective biologic first (I was most certainly well hooked). You are also likely going to need to go slower if you’ve been on them a few weeks or more.
February 17/20 I started back on Sulfasalzine 2000mg/day. I had quit after 2 months of using it when mouth sores began. Rheumatologist increased my folic acid to 5mg/day, mouth sores cleared up and then back on the Sulfasalzine. March 12/20 I saw the Rheumatologist again with complaint about foot cramps, foot pain and increasing knee (both), elbow and occasional hip pain. Started with 10mg prednisone for 1 month, 7.5 for 1 week and 5mg since then. (While waiting for sulfasalazine to work) Since the Sulfasalazine, I have not had any psoriasis and back pain is much better. The prednisone has helped the fatigue and general blah’s but while I had less joint pain at 10mg, my head felt off, sort of like too much coffee and I had those vision issues. At 7.5.g prednisone the vision thing (sort swirling distorted images not in the line of sight but peripheral) was increasing. That went away at 5mg. Yesterday was one of the worst crashes since I started on this journey fall of 2018, going from 5 to 2.5 to 0 in 3 days didn’t work very well) I am amazed at how quickly my headache/eye ache and overall flu like feeling disappeared after only 3 hours of 5mg prednisone. Yesterday’s episode was bad enough that I will be very cautious getting off it too quickly.
As to communicating with my rheumy, twice I have taken time to type and print a brief but concise history of my joint pain, medication etc. I gave my brief journal to the receptionist upon arriving at the waiting room asking that the Dr read it before seeing me. The rheumy didn’t read it and asked questions that were already on the print out. Last time, I asked if she read my journal, (about a page and half, large type). She then pulled out and said, “Oh, i didn’t see that you have stuff on both sides) and put it away. Because we have health care, there is no competitiveness for patients. Often a patient will be “black listed” for attempting to switch specialists. Merely asking for a second opinion can be detrimental to finding another rheumy and they tend to be pretty sensitive to any challenging of what they are doing. (Or not doing). I have to walk on very thin ice being Uber careful with my choice of words lest I “upset” their omniscience.
There seem to be plenty of studies out there suggesting that long term (life?) use of less than 10 mg prednisone, vitamin d and weight bearing exercise can greatly decrease bone deterioration. Really don’t know what to believe anymore.
The Idiot’s Guide (the way I see it) - steroids okay as rescue remedy with the blessing of a doctor we trust (that last bit would be an issue for me too, from what you describe). Otherwise pursue the most sustainable treatment, well the treatment that ticks as many boxes as possible. To my mind that’s biologics.
I had quite a few steroid shots in my backside in the early years. I hear they’re not done very often in the US. Only ever had one short course of oral steroids so I’m unsure … but wasn’t your ‘taper’ more like jumping off a cliff?
This is so frustrating for you. Many years ago, while still quite young, my husband had a stroke. The second time his vision was disturbed, he got me to drive him to hospital. Then we sat in the first department we came to and every time someone asked him what he was there for he calmly said: ‘I’m not leaving till I’ve had a CT scan.’ He’s not known for grand gestures. It worked. Just saying …
I’m wondering if the vision changes on higher doses of prednisone aren’t related to you blood sugar levels. Vision changes related to cataracts are slower and don’t get better with lowered doses.
I don’t know what to tell you Amos, other than the big picture of your treatment plan isn’t working, and it sounds like you’re stuck with this rheumatologist for now. Keep doing what you’re doing. Be super clear, including your functional concerns, not just pain. For example, when I wake up in the morning, my knees are stiff for a minimum of thirty minutes. I can only walk for 10 minutes on a flat, and I was able to walk for 45 minutes that included hills 6 months ago.
Thanks for all thoughts and direction. You have no idea how helpful the advice is and maybe as much or more, having “ears” to allow me to talk and think through my ongoing saga. Your patience and ability to listen is very appreciated!
Does anyone know of people in their ‘80’s with PsA who have a long history of treatment?
@Stoney, it sounds like your decrease in mobility is concerning…how can you get it back? Different biologics? I’m always concerned about loss of function (especially permanent). AND that optimistic problem solving nature of mine deep down still thinks that PsA is something to beat rather than endure! If I was randomly stopped on the street and asked if I have a disease, I would instinctively say, “No, I just hurt today”. (hummm…sounds a bit like Monty Python…its just a flesh wound!)
I’d have you all over for a BBQ after I wash my hands if you lived closer…take care!
Sorry, those were both examples. Right now I’m dealing with three broken bones in my feet, presumably from the steroids. That’s my primary mobility issue right now. Normally I can walk a few miles with no real problems, but as I said, right now I’m much more limited. I’m actually using a bone stimulator right now for six weeks and hoping that it’s helps the bones heal. If they don’t, I’m actually quite ready to do surgery on them now. I broke my left foot over six months ago, and I’ve been in the walking boot for 3 months. I broke my right foot just over three months ago, and I’ve been in a surgical shoe for much of that time. I have to admit, that the big toe break still hurts.
And I think I mentioned, that I had cataract surgery this past year? One of the cataracts was forming before I started on the steroids two years ago, but one of them appeared and grew fast after starting to steroids.
That’s really horrible. We have healthcare too in the UK as everyone knows, our pretty decent NHS. No patient is permitted to be ‘blacklisted’, most clinics are over suscribed with patients. But we’re entitled to ‘second opinions’ on the NHS and can with some degree of hard work and persuasion get a referral out of our area to a doctor of our choice. That depends on the local funding body. Their rules change all the time too. But my rheumatologist is 300 miles away from where I live. The reason is solely that I wanted to be treated by her given her expertise and managed at the time (it was easier) to persuade the powers that be to permit to be seen by her. That was 3 years ago. At the time I saw her I was on no meds. Now I’m on my 5th (3rd biologic) and actually doing incredibly well. The only reason I’m doing incredibly well is solely because I’m treated by a significantly competant rheumy. It was the good people on her who persuaded me to be both med compliant and indeed to get to see this particular rheumy.
So can’t you blow this up a bit with your elected officials as to why with healthcare are patients scared to get a second opinion? How does that maximise their treatment? Why are the consultants permitted to reside in such omniscience towers? Who regulates your rheumy? What is their complaints procedure? How are patients protected from medical negligence? I’m afraid my personality type is that if I see such grabbing of power in this way, I go all out to topple the tower down and stomp all over them. I loathe injustice and taking such advantage and I’m never scared of saying so loudly.
The goal @Amos is to get you treated optimally. Things won’t get better until you are treated optimally. You’ve done your DMARD time and sadly they’re not enough to manage your disease progression. Pred causes untold other issues as sadly you’re finding out just adjusting the dosage. In medical negligence terms it’s your rheumy who is now skating on the thinnest of ice. I’d make sure she was really aware of that and really scared of it too.
I can see where you’re coming from with this!
I know we have members in their '80s, maybe some who are older, but personally I haven’t spotted posts from any for a while. But years ago I joined a very busy Rheumatoid Arthritis forum & still take a look sometimes. There are plenty of 80+ folk there who have had a long and often apparently satisfactory relationship with traditional DMARDs and Biologics. Which is encouraging!
And I reckon it’s reasonable to aim for long-term mobility, well I’m aiming for that. Prevent / minimise joint damage - that’s the key. Tell your young rheumy you have a lot of very important projects to complete in the next 30 years which won’t get done without her help. Ageism creeps in everywhere, often unconsciously.
I asked you a question then disappeared! Sorry about that, but glad we have such a good community of people to give their thoughts and support.
I hear your frustration with your Rheumy and the feeling that you are pretty stuck there. Sigh.
Sounds like there are a few positives though - whilst the sulfasalasine isn’t doing enough, that it is helping is a start. And you are, at least, on DMARDs. There are people who stay on 5mg a day of steroids for many years and it helps them.
It sounds like there is a high chance you are not going to be one of those people though if you have side effects already that are bothering you.
So to the not-so-great. By the time I was 5-6 weeks into prednisone on a similar dose, I, like you, could not get off it and had a terrible crash if I even tried. Don’t be like me and keep trying to get off it without doing something different. I can be a bit of a slow learner 
I needed better disease control to get off steroids, because the withdrawal from the steroids themselves is a real challenge, and I didn’t seem to be able to deal with poorly controlled disease and withdrawal at the same time as a job and child (reading that; of course I couldn’t!). It could be possible if you are willing to hit pause on life while you taper. To give an indication, I got down to 5mg pretty quickly, then I had to taper by 1mg a week (and sometimes a bit less) - I was on them a lot longer, so you need to talk to a doctor to find out what the right taper schedule would be for you. A GP might be able to help you with this.
But, any way you cut it, you need to keep trying to communicate with the Rheumy (or another one) to let her know that the side effects are not ok, and you want off steroids - but you need help, and another DMARD.
Good morning and welcome to a new week of life! Even pain is a reminder that one is alive and active.
The many replies that I have received have been great! Time for a bit of an update:
I arranged a video-talk with my rheumy mostly to get a prescription for the shingle vaccine. Having spoken with two friends in five days who have full blown shingles, I decided it was one more thing I don’t need! Rheumy said it was no problem apart from the potential side effects but there is one particular vaccine that I would need. Any thoughts or experience with a shingles vaccine?
She also encouraged me to stay the course with MTX, Sulfasalazine and 5mg prednisone for another 38 days (my next appointment with her) BUT for the first time, she did mention that I may have to change to another class of medication if i’m not improved by then.
I then spoke to my GP who is closer to my age and has been excellent with our whole family, about my horrible foot cramps. She suggested that I likely am low on magnesium and calcium and recommended a suitable dose and include vitamin D. I’ve been taking that for 4 days and cautiously think my foot cramps are lessening.
I don’t tolerate milk very well so I likely have been low on those important minerals.
I also explained my situation and doubts about my very new rheumy…she agreed that a second opinion would be valuable and one from someone a bit more experienced and not within the same clinic. So, potential progress exists!
Oh, choose your words carefully…I told my wife of 39 years that our GP agrees that I need a new rheumy…My wife heard “roomy” and was somewhat shocked! I have convinced her to stay around as she is the BEST!
That’s incredibly positive other than the potential fallout of your wife’s opinion of a new ‘roomy’. Second opinions usually raise everyone’s game positively for the patient.
Another update: I’ve had a dry cough for 3 weeks that is getting worse. Called my Rheumy to let her know and heard nothing until I called again this morning (friday), She said it’s likely an infection so I should stop the MTX. No indication as to how long. I also called my GP who got me in for a chest x-ray in 30 minutes because she was concerned that MTX can cause lung problems. If the rheumy would have gotten back to me by Tuesday, I wouldn’t have refilled my prescription (out of my pocket) Tuesday afternoon.
How long after I stop MTX will it take for a potential increase in my joint inflammation?
Who knows? Nobody can say. But seeing that you aren’t getting amazing relief from it, you may not notice too much when you discontinue.
You asked about the shingles vaccine. You’re right about not needing one more problem. My nurse-practitioner said the same to me last year. But she wanted me to have shingles and pneumonia. Gave me the shivers that did. I called my rheum, whose response was “Excellent idea!” And incidentally, she also asks about my flu shot every year.
I had no big problems with either of those vaccinations, except for one of the shingles shots. I felt a bit tired and draggy for a few days, and my upper arm hurt like %&#@!!! “Oweee it hurts!” sounds stupid coming from someone with PsA, and who has had several joint replacements, but honestly! On the other hand, I’ve also had a couple of friends with shingles, and I’ll gladly take three days of sore arm instead of that, thank you very much.
A second opinion is a good idea. A different roomy, not so much.
Seenie
PS Did you know that our very own @tntlamb is our official representative at The Ministry of Silly Walks?
Thanks for the warning about the arm pain. You didn’t say which arm…If I know, I’ll get the other arm done to dodge the pain. I’m still waiting for the results of my chest x-ray, nothing moves quickly lately. Good to know about @tntlamb and his high position. I’m sure he will represent us with a whole heart! I no longer need to train for silly walks…they come quite naturally. Because of this persistent cough, I think I’ll wait on any vaccinations. From what I’ve read, the shingle vaccine doesn’t necessarily give life long or even long term immunity.
Thank you all for the information on prednisone. It has been really instructive and helpful as I’m new to all of this with a recent PsA diagnosis. I have been on 5mg daily for three months and have asked to taper as I have osteopenia and I’m not comfortable being on it for long. The dr suggested I do not take the prednisone every other day for a week and then stop. But that seemed too sudden so I’m now doing 2.5 mg every other day and see if I can stop after a week of that. I’m also trying to get Humira on board (been consistently on it for 6 weeks now).
On a different note, I did the shingles and pneumonia vaccines on the same day, but different arms. The shingles hurt worse, so I would suggest injecting it into your non-dominant arm. I’m due for the second doses shortly. (Not super excited about it as I felt a bit crummy after it for a couple of days.)
Thanks again for sharing your experiences. It really helps me understand the experience more.