Now trying Methotrexate

[Anne-NRAS]

Its been some time... we complain when our life is not our own because of work and teenagers, boyfriend, mother and dog ! but I'm sure when there is less of that, I'll be complaining I want them back !

got to see my rheumatologist last week and he has started me on methotrexate. He has prescribed 7.5mg for 2 weeks and then 15mg for 6 weeks and at this point hopefully I can slowly reduce my Pred (still stuck at 10mg at day).

I have an appointment with the nurse specialist in 5 weeks and have to have a blood test every 2 weeks.

I've really noticed my memory has been terrible over the last 6 months and I can't lose weight.. I'm hoping that the common side effects of MTX will pass me by and that I can get off the steroids and back to normal ! Rheumy has his fingers crossed; I've got everything crossed .

[DorsetLady PMRGCAuk volunteer]

Good luck!

[PMRpro Ambassador]

All the best - hope it works for you. Pred weight - cut carbs. Lots...

[SheffieldJane]

Let us know how you get on Anne-NRAS!

[GOOD_GRIEF]

Did you gat a Rx for Folic Acid? It does wonders for MTX side effects, I'm told.

[Anne-NRAS in reply to GOOD_GRIEF]

I did thank you... taking folic acid everyday x

[Suet3942 in reply to Anne-NRAS]

Hi Anne, not the day you take the methotrexate though.

[Anne-NRAS in reply to Suet3942]

yes, thank you.. I don't take it the same day

[Elaine-W in reply to Anne-NRAS]

Hi Anne-NRAS

I am also taking Methotraxate and take folic acid once a week two days afterwards. I am suffering headaches and may talk to my rheumatology nurse about it. Thank You for sharing xx💐

[PMRpro Ambassador in reply to Elaine-W]

Some people need more - I know of patients taking 5mg every day except mtx day - others just get 5mg once a week.

[Elaine-W in reply to PMRpro]

Thank you for this information. I will use it next week at my appointment. My diagnosis is still up in the air. The rheumatologist said two months ago I have PMR or RA. Tests for RA were negative. I have improved a bit on methotrexate which I have taken for a month. My symptoms have been at different times, sore shoulders and sometimes neck, painful groins, thighs, for arms, wrists, inner ankles which also swell in the painful area. Swollen puffy hands at all times, So stiff and sore getting up from sitting and in the mornings. The stiffness sometimes settles down after a couple of hours but occasionally stays all day. My husband helps me up from a chair and rolls me over in bed to help me to get up. In sickness and health eh? These symptoms started when I reduced to 15mgs pred. I have been in pain all through the reduction to 10mg, my current dose. I take 12.5 methotrexate weekly. Any thoughts will be gratefully received xx

[Elaine-W in reply to Elaine-W]

I am so sorry, I just realised I started rambling on in Anne-NRAS post

[PMRpro Ambassador in reply to Elaine-W]

Doesn't matter!

If he thinks you may have PMR why is he using mtx and reducing your pred dose to a level that isn't working? If it is PMR you need a good 4 to 6 weeks on the starting dose to "clear it all out" so you can start reducing SLOWLY (and 15 to 10 in under 2 months is NOT slowly) to find the lowest dose that gives the same result as that starting dose did. The starting dose must be high enough in the first place or it won't work effectively before you start looking for the dose that is just enough to clear out the new batch of inflammation caused every morning.

If you have swollen and puffy hands and feet you may have something called RS3PE syndrome and it isn't uncommon alongside PMR.

I'd be seeking a second opinion...

[Elaine-W in reply to PMRpro]

Thank you for your reply. I know what you are saying makes sense. I have made an appointment to see Dr Rod Hughes this Tuesday coming. I will take letters and blood results etc with me. Thank you for making me wake up. I have been so stupid. It’s as if I thought I would get a gold star or brownie points for allowing my rheumatologist to bully me into dropping below what I could cope with. And I let him. ‘He will be so impressed when I see him and I have got down even further. Never mind that I struggle to go up one step into my house or climb into the car’. I have hands like Anthony Joshua the boxer 🥊. Believe me In Real life I am no push over but between these illnesses and some rheumatologists, we can doubt everything.

Thank you again and I will let you know how I get on xx💐

[Janicep]

I have had 6 wks of MTX and no side effects at all- down from 20ng prednisone to 15 since Nov but still quite sore BUT MTX had helped my wrists and shoulder.

Good luck and you will be fine