Methotrexate? Is it too soon to go onto this drug

[Tiggy70]

Hi everyone, I was diagnosed with PMR in August 2020 and have found this forum invaluable over the past 13 months. This is my first post as so far I have always found the answer to my questions somewhere on the site. However on this occasion I would really appreciate some advice. I’ve just updated my profile so everyone can see where I’m at.

Basically I’m struggling to get below 8mg of Prednisolone and my Rheumatologist wants me to start on Methotrexate. I just feel it’s too soon as I’ve managed to get down from 15mg to 8.5mg in 13 months. I’m already on 9 prescription medications daily as I have type 2 diabetes. I take Omeprazole, Creon (pig enzymes to help my digestion), Metformin and Pioglitazone for the diabetes, Prednisolone, Risedronate, calcium and vitamin D problems, Atorvastatin, and Amlodipine (blood pressure). I really don’t want to add another drug to the mix!!

Any advice would be greatly appreciated thank you.

Tiggy70

[PMRpro Ambassador]

My personal experience with methotrexate wasn't good and there is no guarantee it will get you to a lower dose of pred. In your place I would be unwilling to try it. 8mg is already what is called a physiological dose, similar to the amount of corticosteroid the body makes naturally in the form of cortisol. While you are on pred, the body doesn't make more. Most good doctors stop worrying as much when the patient is down to 8mg and allow them to continue to taper on their own.

But it is your decision - and it may help you if you don't have side effects from it. I did and said no more.

[Tiggy70 in reply to PMRpro]

Many thanks for your reply. I don’t at this point want to go onto Methotrexate but where do I stand if I refuse. I feel my Rheumatologist already has me down as a trouble causer as I’ve had a battle over taking Residronate without a Dexa scan which I ultimately lost. He wouldn’t even give me a referral to book a private scan. What I really want to do at this stage is to up the Pred. until the inflammation is back under control, go back to 8.5mg where I was comfortable and then try the DSNS method again in a couple of months time. I haven’t actually spoken to the consultant personally about this. My communication has been through the Rheumatology helpline nurse..

[PMRpro Ambassador in reply to Tiggy70]

I personally don't think that is acceptable - because even if the speak the same language, something always gets lost in translation!!! Chinese whispers ...

[Tiggy70 in reply to PMRpro]

When I spoke to the Rheumatology nurse last Monday re upping my pred dose she hadn’t spoken to the consultant but made the recommendation for me to take Methotrexate based purely on reading my medical notes. She saw that he had mentioned MTX during my routine 6 month check up (a telephone consultation) in early September. She was reading from a letter he had dictated after my consultation a copy of which I have never received!

[PMRpro Ambassador in reply to Tiggy70]

No - that is not on ...

[Betty_H]

I was diagnosed in Dec 2019, and am on 10 mg pred / day + 7.5 mg MTX / week. I could not get below 15 mg pred before the MTX. I have just gone through a short flair, but with a bump in pred for 3 days (then tapered down to10 mg) I am doing well now. I was very tired and slept for the first week of treatment on methotrexate, but each week got better. I, too, have diabetes, high blood pressure. I also have chronic kidney failure, bipolar disorder, and degenerative arthritis of the spine. I'm on over 20 different meds each day, and I take them religiously. If you try the MTX, just be aware of how your body reacts to it. I can't tell if it's helped me or not. Go with your gut feeling. My last ESR (last week) was 6. I couldn't believe it. The lowest it had ever been before was 37.

[Tiggy70 in reply to Betty_H]

Thanks Betty for your response. I may ultimately have to go onto MTX but I feel it’s too early in my journey. Gosh I thought my 9 medications were a lot and you’re on 20! My CRP and ESR are both in the normal range and have been for many months. Pleased to hear you’re going in the right direction😊