Flare at 5 mg press 20 mg mtx: Hi, this my first... - PMRGCAuk

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Flare at 5 mg press 20 mg mtx

Jancorb profile image
30 Replies

Hi, this my first post.

I'm 3 years into PMR, have struggled to get below 8 mg press , so 5 months ago was given methotrexate. I've done quite well getting through 7 , then 6 mg preds.

But went to 5 preds on Sunday, today can hardly walk, pain levels and stiffness high. I thinking maybe as to increase Methotrexate to 25 mg, or would your advice be to go up with preds.

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Jancorb
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30 Replies
Jancorb profile image
Jancorb

Should say preds!!

Pred. Its that thats changed. Very difficult going to 5mg. 4 attempts for me and still at 6mg with a dmard.

Blackcat1M profile image
Blackcat1M in reply to

Hi don't increase mtx I am on 20mg and it does nothing for pmr, I have RA that's why I am on it, and I must admit I don't. know if it's doing anything so don't increase I agree with others increase pred. A lot of people are told mtx helps reduce pred, but I don't think it does

GerriMc profile image
GerriMc in reply to Blackcat1M

Sorry Blackcat, don’t agree. I have PMR and MTX has certainly helped me. It helped me get past 17.5 mgs of Pred where I was stuck for months. Each attempt to drop even 0.5 mg caused real problems. My Rheumy plots my CPR and ESR on a graph and there was a marked drop in both following introduction of MTX. I’m now down to 5 Pred and have no real side effects from the MTX. So, in my case, it’s doing its job.

GerriMc profile image
GerriMc in reply to GerriMc

Oh , BTW, I’m not saying Jancorb should increase MTX. I agree it’s the Pred that might need to be increased.

in reply to GerriMc

Its not the mxt treating pmr per se. But it has helped pred do its job. I am in the same position with a dmard. To the extent it has helped pred work well enough to reduce me from 14mg to 6mg without a flare, it has done it's job. Unlike pred a dmard isn't used by itself to treat PMR, or likely shouldnt be. However, once in pmr remission i suspect it can/will be touted as being used to suppress the immune system generally as in treatment if other arthritic conditions.

PMRpro profile image
PMRproAmbassador

mtx does NOT replace pred although it MAY allow you to get to a lower dose. But then again, it may not. It doesn't work the same for everyone. It got you to 6mg - if it were me I would go back to that for now and (possibly) try again but with either 1/2mg or using one of the slowed approached to reduction we talk about on the forum:

healthunlocked.com/pmrgcauk...

At present you are trying to reduce by well over the 10% that is recommended and the lower you get, the higher that percentage becomes. This may be steroid withdrawal rheumatisim or it may be you have got to too low a dose. The only way to find out which is to repeat the experiment with a drop that should avoid the steroid withdrawal. If the symptoms return - it is too low a dose.

But do not increase your mtx without discussing it with your rheumatologist.

Jancorb profile image
Jancorb

Thanks, I'm hoping the rheumi nurse will ring this afternoon. I've tried the very slow method of reduction several times but 8 mg was as good as I got. I agree, think I'm pushing myself to reduce, just fed up of all my different meds,

Soraya_PMR profile image
Soraya_PMR

I had great difficulty reducing down from 8, but when I finally achieved it, to 7 then 6 was relatively easy. Couldn’t do 5, succeeded at 5.5, failed again at 5, did a quick 10,9,8,7,6 and stopping here on 6 til I feel back in control. (No mtx)

Jancorb profile image
Jancorb in reply to Soraya_PMR

Thank you, my experience exactly. Not sure the MTX has made any difference. I'll go back to 10 then swiftly down to 6 and stay there.

Soraya_PMR profile image
Soraya_PMR in reply to Jancorb

I think a quick blast of pred is the better option. Don’t forget your R&R while you stabilise. Good luck.

Jancorb profile image
Jancorb in reply to Soraya_PMR

Hi again, the rheumi nurse just rang, she suggests going back to 6 for a week then alternate days at 6 and 5 mg , if still problems they may increase the MTX to 25 mgs.

in reply to Jancorb

I personally would still give it a blast at 10mg and reduce to 6mg in the way Soraya-pmr suggests. You need to get it properly under control. I have been on 6mg for months and rheumy said to stay there. If you do a blast and stay at 6mg IF thats controls symptoms, you can try after you are sure you feel ok. If 6mg doesnt work i would discuss going to the dose you felt best at. Mxt like my dmard is jyst there to help squeeze the juice out of pred. At tbe moment it hasnt got enough pred to squeeze!

Jancorb profile image
Jancorb in reply to

Thanks, I took another 5 mg preds this afternoon, feeling much better. It's so depressing to be reminded how awful this condition can make you feel. Slowly does it from now on,

in reply to Jancorb

It is. But a relief when pred works. Keep feeling better🌻

Soraya_PMR profile image
Soraya_PMR in reply to Jancorb

Glad you’re feeling better. You’ll soon be back to 6 then you can take stock again.

I’m going to try 5.5 again when I feel ready, and stick there a month. Think I was too hasty trying to get to 5 before.

Purple-Owl profile image
Purple-Owl in reply to Soraya_PMR

Sorry but what is R&R?

in reply to Purple-Owl

Rest & Relaxation

Jancorb profile image
Jancorb in reply to Purple-Owl

Hi, rest and recuperation, we all need a bit of that.

Soraya_PMR profile image
Soraya_PMR in reply to Purple-Owl

Sorry, I shouldn’t abbreviate!

Rest, Relaxation, Recuperation.

Or, Reading and ‘Riting on the forum? 😉

Jancorb profile image
Jancorb in reply to Soraya_PMR

😀😀😀

PMRpro profile image
PMRproAmbassador in reply to Jancorb

If what you need at the moment is 8mg, then that is what you need. It doesn;t mean you won;t get lower.

I and my rheumy would be ecstatic if I could get to 8mg!!!!

Hi

You must not increase your Methotrexate, it is not a drug to tinker with. 20mg is pretty much the standard dose as a Steroid Sparer.

You really should only be reducing in drops of 0.5mg of Pred now, the standard drop is by no more than 10%

If you were OK at 6mg go back until you settle then go down in 0.5mg drops.

MrsN

Jancorb profile image
Jancorb in reply to

Thanks, that's exactly what I've been advised to do, the MTX I think got me over the 7 mg barrier, but I'm going to go back to 6 them very slowly down to 5.

in reply to Jancorb

It’s tough when you get to 7mg as we’re only taking the physiological dose, ie what we need if we didn’t have PMR

I got down to 5mg on Methotrexate from 18mg

I’m actually seeing a New Consultant next week to discuss the options as l’m back at 12.5mg from 7.5mg but l have been suffering from Kidney Infection(s) since December.

I hope you can settle back down & then continue reducing more slowly.

Good Luck 🍀

MrsN

Daffodilia profile image
Daffodilia

Need to ask your doctor I think - good luck

dancersize profile image
dancersize

I was stuck on 6mg pred for 6 months so rheumy added mtx. Have managed to drop 1/2mg each month to get to 4mg pred after 4 months. I'm considering reducing the mtx to 10 to see if it makes any difference. I'd suggest going to 7mg for a week then try the slow taper.

Jancorb profile image
Jancorb

Thanks, I'm trying back at 6 then try 5.5 . It's cruel to be told initially that PMR often recovers after 2 years, not true. From what I've read most are still on medication for years.

Dawnint profile image
Dawnint

Up the preds and when you try reducing again try alternating 6 5 6 5

Jancorb profile image
Jancorb in reply to Dawnint

Thanks Dawn, I'm doing that starting in 4 days, fingers crossed.

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