I had my second appointment with my new rheumatologist this morning, he is very thorough, and I'm to have chest xray, hip and leg ultrasound and shoulders and neck. He thinks the pmr may have morphed into psoriatric arthritis. I don't have psoriasis, but my uncle had it and my son has it. He wants me to taper from 9.5 to 9mg and see if the inflamation markers go up. My bloodtests are always normal, yes I've still got thigh pain, neck and shoulder pain, and mild hand pain. He's working on a process of elimination and if the markers stay normal, wants me to go on methotrexate. I know nothing other than what I've read on here, so would really appreciate your thoughts. And suggestions. He has said if pain increases on tapering to go back to 10mg until after my holiday in Aussie at the end of July. Thank you all in advance for any help/suggestions. It is coming upv4 years in October since diagnosis and start of pred. I firmly believe if not for covid I would have been nearly off pred by now as in the beginning I managed to taper 1 mg per month until a flare(wasn't aware of the slow taper then as not on this forum) consequently ended up on the yo yo cycle. Sorry to ramble, but feeling gutted, as if I haven't had enough trauma and stress this year, losing my husband and shifting house ten days later. Thanks for reading!
Kiwi sufferer
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Kiwisufferer2019
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Strange that he is recommending pred if your bloodwork (markers) remain normal, especially because you report they always are (a percentage of folks never have raised markers). Symptoms do certainly count as well, and many would argue they are a more reliable indicator of your disease activity.
I had been on pred for 3.5 years, the last year and a half stuck at 9mg. After a discussion with my GP I began seeing a rheumatologist who was also thorough and reasonable, involving me in the decision making regarding my health and path forward. Together we decided I would try Methotrexate as I knew that I would never know if it worked as a steroid sparer till I tried it. I also took comfort knowing that unlike pred, I could stop it abruptly without consequence.
The up side is I’ve not had any side effects from the MTX and I have been able to lower my pred dose but my tapering progress was delayed for 6 months over the winter months due to frequent infections/illness that required antibiotics which meant temporarily halting my weekly MTX injection. The down side is being on both pred and MTX made me more vulnerable to getting sick and with a compromised immune system less able to fight off sick bugs and requiring longer to heal from them. I was also dealing with the stress of loss and grief during that time.
I know that MTX is helping because when I paused it for 3 weeks and PMR symptoms returned. But it doesn’t help everyone, and for some folks it makes them feel worse. You won’t know unless you try, but you also need to weigh whether it’s worth it given you are not on a high dose of pred presently. You are also currently experiencing painful symptoms so I’m not sure tapering your pred dose at this time is wise.
Are you still in a yo-yo cycle or have you settled at a dose and are able to slowly taper? Given all the stress you’ve endured this year I would take that into account regarding where you are and how you are feeling (and this is also not conducive to tapering). All of these things should be taken into consideration when making your decision to taper or on board a new medication.
Sorry for your loss and the challenges of shifting households shortly thereafter….that is a lot for you to contend with. All the best as you make the best decision for your health moving forward.
Thank you so much for your informative advice/reply PMR Canada, so very helpful, I should have also said at the very beginning my inflamation markers were 88, but since I got down to 10mg it has been normal. He did say if the pain level increases to up my pred back to 10mg, I have been at that dose since before Christmas, then when Ted died my Gp put it up to 20mg as I was feeling very unwell. That was only for a few days, then 15mg then back to 10. So fairly stable for several months.
I had a rheumy who was determined my PMR symptoms were due to PsA - never had psoriasis in my life although an aunt had it. At our final contact he'd at least moderated to "an inflammatory arthritis" but another 14 years on and there is still no sign of any joint damage! I also never had raised markers - at least, not out of normal range, they were raised for me.
Methotrexate is the first line treatment for PsA and is very effective, it also works for a small proportion of PMR patients so it IS worth a try but, in my opinion at least, there should be a low threshold in terms of how it affects the patient with side effects.
I agree with all that PMRCanada has said - and your rheumy should not underestimate the effect of bereavement and the subsequent adjustments which are hard enough even when you can stay in your home, as I also know all too well.
Thanks for that PMR PRO I am dubious, but will give it a go, after my holiday. I've never had psoriasis, but my Uncle had it and my son has it. I don't quite know what to think, but I haven't got any swollen joints, just muscle pain in thighs and shoulders and hands, it's also hips, and I get pain in my right hip which is a replacement joint, that seems confusing!
Which ALL fits with PMR which is a soft-tissue problem and not a joint-affecting inflammatory arthritis - much the same for me and I suspect your guy would have done the same with me. After 18 years of whatever it is I have - not a sign of joint damage!
Thanks PMR PRO, I will proceed with caution, will not let the symptoms escalate that's for sure, if they increase I'll be straight back to 10mg. Not worth the misery. I'll keep you informed. Thank goodness I've now got a small garden and section.
My wee Meg, she had her first groom last Friday and last vaccine this morning.
I can relate. My rheumy has changed my dx after 4 yrs from PMR to sero negative RA to inflammatory polyarthropathy to psoriatic arthritis without psoriasis. I’m off steroids but he keeps pushing Methotrexate. I asked him if he even really knows what I have and he said the only thing he knows for sure is that I have an autoimmune disease. I have no signs of joint damage…..it appears to be muscles and tendons mainly. So thinking about going back on 1mg daily as maintenance steroid dose since sed rate is back up to 57.
If 1mg makes your QOL better - any doctor would be rather silly to not allow it! All that is possible in autoimmune disease is to manage the symptoms. If that happens with a tiny dose of pred - is that not job done?
I couldn’t agree with you more. I saw him yesterday and FINALLY convinced him to let me manage the 1mg of prednisone as a maintenance dose…..at least for the next 4 months! My sed rate was back to normal on that dose before so I’m hoping the same thing will happen again. You ladies are so wonderful for sharing your wealth of knowledge with this community. I can’t thank you enough!
Hi Kiwisufferer. So sorry you are going through this and at such a vulnerable time too. This disease throws up so many curve balls and it certainly keeps us on out toes. It’s good that you are having investigations and you are happy with your specialist - that’s a positive. I am also having trouble tapering from 9mg and have got stuck. Saw my Rheumy Monday and she too has recommended Methotrexate and folic acid. I was very “anti” MTX but I do feel I must get rid of the steroids - it’s affecting many other systems badly. I am presently in Christchurch having cardiac ablation tomorrow and, if all goes well, I will start the MTX on Monday. I will let you know how I get on but it will take a month to kick in. Hope you can get it sorted but look forward to your holiday in Australia. By the way your little doggie is adorable and must be wonderful company for you 🥰 Take care.
It takes more than a month for MTX to have an effect - if it does at all. Nor is it guaranteed to get you off pred entirely, it only does that for a small number of patients. Just so you don't get your hopes too high only to be disappointed.
Thank you sharing your knowledge, I will give it a fair go with not too many expectations, do you get the soreness from thighs up into your buttocks and hamstring area? Also I have pain in the groin, not excruciating, but uncomfortable and annoying when I walk. Janis
Oh yes - all of that and more but IT isn't directly PMR, it is greater trochanteric pain syndrome and it doesn't respond well to any systemic treatment and even MTX won't do much about it I suspect, Targeted treatment, including steroid injections and physio has a far better effect. The groin pain when walking is probably iliopsoas bursitis, down the outer aspect of the thigh is trochanteric bursitis. I had both with untreated PMR and could barely walk then, after starting pred which had an immediate effect in general (6 hours) it was 4 or 5 months before the bursitis was gone.
The mistake many rheumies make is that it is all "just" what they think of as PMR. This
Thanks Hoopy1950, yes this complaint is a right pain! I like many others, have led an active life firstly on the dairy farm and then on a smaller block where we planted an orchard, I've always had a big flower garden and vege garden, it's really hard not being able to do what we once did, aging aside, until I succumbed to polymialga I could work outside all day, then overnight everything changed. Good luck with your procedure, I'm very lucky I don't have anything like that. I hope all goes well for you and the methotrexate helps you. I look forward to hearing a positive result for you🤞
I am sorry that your husband died. It is so hard to bear.
Moving from a familiar home is so stressful.
These life events will have contributed to how bad you feel now.
I think you need time to heal. You were doing so well and you can again.
Adding in a challenging drug, perhaps unnecessarily, might not be a good move.
I had what I thought was psoriasis on my feet and the diagnosis of psoriatic arthritis was seriously put forward. A smart young podiatrist took a sample from my feet and told me it was athletes’ foot. The appropriate treatment has got it under control. Psoriac Arthritis does not seem to be a very precise diagnosis.
Thank you Shefield Jane for your kind words, the Rheumy won't make a decision until after my scans next week, it may just be that I have to up my prednisone dose agian😤 but time will tell. This was meant to be a better year for us, but unfortunately life doesn't always go how we plan! Or hope. I keep telling myself I'm doing OK, but I miss my husband terribly and I guess the body reacts to all the adverse events in its own way. I read an interesting article about stress and how the autoimmune system reacts. That was food for thought. I will say my Rheumatologist is not rushing to start me on methotrexate and I will be having regular blood tests as well as the scans. I don't feel he's on the right track, as it's not joint pain, it's in the muscles and soft tissue. Time will tell. Thanks again for your message. This forum is a lifeline for me. Kiwi
my heart ❤️ goes out to you that is so much to cope with, I’ve just started on Methotrexate yesterday 10mgs a week I was completely exhausted all day, I’m also on 5mgs of Prednisone a day.
it’s safer to stay at 5mgs or under Prednisone my rheumy tells me as it’s been nearly a year on all different levels of Prednisone, and he says Methotrexate has been around for over 50years he assures me that it is safe, and it will help me get of the Prednisone too, I will start tapering in a few months time by 1/2 a ml a month. So there is light at the end of the tunnel you see. If you have a great Rheumatologist that you align with completely and you trust him you’re in a good position. If you don’t then change specialists, I was lucky I had a referral from a family friend who is also a dr, and I trust her implicitly!
Wishing you all the very best for everything XxHeidi
Thanks so much Heidi, for your info, that makes me feel encouraged. I'm walking every day now, just a flat walk around the park with my little dog. I go back to Rheumy after my trip to Australia beginning of August. I've been on prednisone for 4 years come October, so would like to get down/off if I can, but time will tell. I'm staying on 10mg until after my holiday. I will let you know what happens.. Good luck to you too. It's so good to have support on this forum. Janis.
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