intro to Methotrexate : 5 years in and my Doc has... - PMRGCAuk

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intro to Methotrexate

Sunny1947 profile image
3 Replies

5 years in and my Doc has me on a decreasing dose of Pred (now at12.5).He has started me on Methotrexate 1 month ago .currently on once a week after increasing from 2 -4-6and now 8 .. the vial is in the the room so too sore to get up and check it for dosage. Mornings are brutal … but things subside somewhat during the day

Should methotrexate have kicked in yet?

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Sunny1947 profile image
Sunny1947
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SnazzyD profile image
SnazzyD

Hello that doesn’t sound like a good state to be in. Can you fill in a bit of detail? So, 3 months ago you were on Actemra having flared at 3mg, but now you’re on Methotrexate? Did they think that Actemra wasn’t working at all because you flared? 3mg is not a big dose, were they not happy to keep you there like some people do? You say you are having brutal mornings and you are on 12.5mg of Pred. At what dose did your pains start to get bad again?

Methotrexate can take some weeks or months to really take effect if it is going to but being like this is not acceptable to my mind especially as you were beetling about happily before. Does the prescriber know how debilitated you are and are they expecting you to be like this for a potentially long time?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

SnazzyD has replied re MTX etc.. and asked why Actemra was stopped when you so low on Pred.

Do have to wonder whether the comment in your last post might have a bearing on things.

am very active which helps with bone loss and scoot around full of pep most days .So if you are very senior and on Pred and feel well just go with it .

The drugs may deal with the inflammation caused by the underlying PMR -but not the illness per se.. You need to do your bit and maybe adjust your level of activity.

Would say your PMR is still very active even after 5 years or you have something else going on as well. Think you need a good heart to heart with your doctors

PMRpro profile image
PMRproAmbassador

Definitely doesn't sound right to me - did the increased dose of pred have any effect before starting to reduce the dose? MTX can take up to 6 months to allow any significant reduction in pred dosage - it takes a year to make a statistically significant difference and that's if it does work for you. If it works it CAN be brilliant, but that is for a very small proportion of patients. The figures you give are confusing - is that the number of 2.5mg tablets you are taking? As opposed to dose? It usually needs 15mg and above to make a difference, that's only 2 weeks so far, nowhere near long enough for a decent effect,

MTX doesn't replace pred in PMR - it MAY allow a lower dose but no guarantees. If you are this bad - your care provider needs to know. And one of the adverse effects of MTX is bone and mucle pain - don't dismiss that as a possibility.

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