I’ve now been diagnosed with serum negative rheumatoid arthritis and PMR, I have got myself down to 9mgs of Prednisone, I tried going to 8mgs but way too flarey.
Seeing another Rheumatologist in two weeks just to get a second opinion, then I will be most likely going on a Low-dose methotrexate and stopping the Prednisone I imagine!
Even at 9mgs of Prednisone I still feel the rhuemy in my forearms, hands and fingers and shoulders a bit, of course not nearly as bad but I’m still aware of it in my system, this has been a very tough few months indeedy!
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Heidiypi1
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I have RA and PMR. I have a methotrexate injection 12,5 mg weekly and take 9mg prednisalone daily. I’m pretty good at the moment and I’m trying to taper the pred. Whenever I get to 8mg things start to happen again so I’ve accepted it’ll take a while . I developed the RA 8 years ago then the PMR 5 months ago. I think it was linked to the covid vaccines . There has been some discussion about this as apparently there has been a big rise in PMR diagnoses in the last couple of years. ☹️
I see from your profile that you have a number of conditions so the rheumatologist will be focusing on all of those, but when it comes to potentially prescribing methotrexate at the point of taking 9mg of pred, it will only be an addition, not a replacement to pred.
Methotrexate is known as a steroid sparer, meaning that it is prescribed to help you reduce your pred intake over time. Wishing you all the best.
If you have both RA and PMR - and it is possible - then you may not get much lower on the pred yet as methotrexate only works for PMR for a small cohort of patients. On the other hand - it is the gold standard for first line treatment for RA and reducing the damage done to joints by RA. If you are lucky you WILL be in that cohort, because when it works in PMR it is very good but there are no guarantees. There is also the return of adrenal function to normal - if you haven't been on pred for long, that shouldn't be too much of a problem if the PMR is managed by the MTX.
"Methotrexate is ranked as the 'gold standard' disease modifying anti-rheumatic drug (DMARD) for the control of inflammatory arthritis. The over-active immune system in RA causes pain, swelling, heat and redness in the joints, stiffness and other symptoms such as fatigue and flu-like symptoms"
"The combination of its perceived efficacy, acceptable safety profile, and low cost, as well as decades of clinical experience, makes MTX the cornerstone of treatment for RA and the anchor drug in combination with various biological agents."
and it remains the most widely used DMARD for initiating treatment:
"Jul 5, 2022 — Even in the current era of biological targeted therapies, MTX remains the initial preferred antirheumatic drug and is considered to be the gold .standard"
The last speaker at the Arthritis Support Group, run by Arthritis UK - just told a close friend last week that Methotextrate is still the Gold Standard for treatment for RA.
I must be thick but you tend to muddy the waters........
Personal experience is a bit of a problem in my eyes. We humans, whilst we have similarities are really individuals, so what suits one, will not suit another. So we just have trust.
i assume you are gone....but I feel the need to say this. I and.I assume others are here for the.personal experience. We have docs...we can read research. You come to a place like this to learn how it is to live with this disease. To find and get ideas on ways to treat and cope. To be able to ask questions or whine because you can't stand it. I am from the states I do not think we know anymore or are better than anywhere else. I don't want to read snarky comments like that while facing a disease like this. The only snark I want are when people that really know this stuff snark at some of our docs screwing us up with their prednisone issues.
There really isn't a lot you can tell jinasc about living with this disease. She founded the first English PMRGCA charity (there was already a Scottish one) and that provided the drive to found this one. She was also responsible for a dedicated forum that predated this one. She has influenced regulatory decisions in the GCA field and facilitated research funding. I think an apology is called for,
I already replied to a message from PMRpro. I am sorry that you are upset. Obviously I was upset by what I felt were dismissive comments. I appreciate the work she has done and her experience but here you read posts. I am not sure I have seen many from her. I just felt like I needed to let her know how I understood her comments. We come here broken and for me I have gained so much and what I read was that things that were being contributed were not important which is the opposite of what I have learned from you 2 in particular. My intention was to stand up for that. I am sorry I have upset you...that makes me sad. I apologize if I have offended anyone.
My doc wants me on methotrexate ...but I didn't do well years ago when I took it for RA. But she did say I would be taking it with pred just a lower dose for PMR. I don't know what I will end up doing but I have a month before I have to think about it. I hope things work out for you....good luck. Take care.
I’ve had PMR for 4+ years and got stuck at 9mg pred for over a year. In Jan of this year started MTX (25mg) and it has helped me taper pred down to 6.5mg thus far. I dropped .5mg every 6 weeks and stayed at new dose 1-4 weeks depending on symptoms and circumstances (e.g when I travelled for 3 weeks).
Thus far it has worked for me but unfortunately a family tragedy and some recent jaw tenderness, along with an upper respiratory illness (bronchitis), I’ve upped my pred to 9mg again the past 5 days and held my MTX until I finish my antibiotics. Then hopefully I can taper back down rather quickly (within the 10-14 day window).
I am so sorry you are dealing with this diagnosis. PMR is relentless for sure. I have been on Pred 5 months at 2.5mgs. Recently, I had to up to 5mgs to have quality of life. It concerns me! I can handle low grade pain, but not everyday. So, we will see. Hopefully, I can taper back to 2.5 in a month or two. A long car ride made my pain much worse. I could not take methotrexate. I pray you can get relief.
Keep a watch on your bone health.
Downtime, I hear you about the vaccine!!! We need to stay on top of this.
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Started Methotrexate
methotrexate
Methotrexate
Average dose 18months into PMR/GCA
What is classed as low dose steroids
