I was diagnosed with PMR two years ago and took pred for a year. I had to stop due to worsening of my depression, development of fatty liver, and total cholesterol of 10mmol/L (this was July 2023, I had successfully got down to 2mg pred). At the same time I was diagnosed with an an autoimmune liver disease - AMA-Negative Primary Biliary Cholangitis. This first came to light due to deranged liver enzymes and itching.
To cut this short - I saw an NHS rheumatologist in February this year who organised a CT-PET scan which showed inflammation consistent with PMR. He wanted me to go back on steroids, which I didn't want to. He suggested Methotrexate as an alternative. I had my appointment with the rheumatology nurse 24th July. She asked how my joints were and I said fine, it's the muscle and areas around the joints where the pain, stiffness and immobility are. She kept talking about arthritis and the need to x-ray my hands! I told her my hands are fine and that I have PMR but she insisted it was the same as arthritis.
I had all the blood tests and chest x-ray and if these are OK I am to start 10mg tablets Methotrexate weekly. I told the nurse I would have to check with my hepatologist, and saw him 31st July. He said he doesn't like Methotrexate, it's not good for my PBC but I should try it if there's no alternative.
I don't really want to take Methotrexate as I can't find anywhere that shows it is effective as a stand alone treatment for PMR. I'm horrified by the potential side effects; I already suffer daily bowel issues and unrelentless fatigue along with pain and stiffness. My hepatologist says it's hard to distinguish which symptoms are liver related or due to PMR as PBC can cause similar symptoms.
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RunningRabbit7007
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Methotrexate is not an alternative to pred, it just helps to reduce the pred more easily. Having said that it does not work for everyone anyway. Methotrexate is really a drug for rheumatoid arthritis and just happens to help PMR in some cases.
Yes like Piglette said it is a steriod sparer... not instead of! It is working for me. I was stuck between 8 and 10 mg, I am now starting my taper from 3mg to 2.5mg.... all going well so far.
Good to hear methotrexate is working for you as a steroid sparer. I just don't know why a rheumatologist is putting me on it as a stand alone treatment for PMR. I'm really nervous because the rheumatology nurse is phoning me on Wed to give me the results of the blood tests and if all is ok then I start it. I'm not sure I can question their rationale but I will express my concerns about the side effects.
I would question whether they are using it to help you get off steriods or replacing them. It certainly is not an alternative and would push back it that is what they are telling you.
MTX is NOT an alternative to pred unless you belong to a a small cohort of patients for whom it is very effective - but they are a small minority. However, it is claimed to potentiate the effect of pred and that is why it is used alongside pred to reduce the dose required.
What concerns me far more is that your rheumy is totally uninformed about PMR - it is NOT "the same as arthritis" which affects the joints, PMR affects the soft tissues around the joints and rarely responds to the same medications as arthritis.
That said - we have had people on the forum who have managed their PMR symptoms on MTX, hydroxychoroquine or leflunomide alone. Unfortunately I suspect your hepatologist will be concerned about MTX and leflunomide because of liver concerns. The biologics are also hard on the liver. But hydroxychloroquine might be worth a try.
Thanks, I'm going to say no now I've had everyone's thoughts. Like you I think it's worrying that a rheumy and their nurse lacks knowledge about the differences between arthritis and PMR. I'll have a look at hydroxychloroquine.
Thanks so much for finding these, and looking at medication in regards to PBC, it's very helpful and appreciated. I'm going to give methotrexate a miss!
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