Rheumotologist wants to change from prednisone to... - PMRGCAuk

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Rheumotologist wants to change from prednisone to methotrexate...

Lever profile image
18 Replies

Has anyone been switched from prednisone to methotrexate? My rheumatologist wants to do this. I’ve had PMR since November 2017. I’m down to 7 1/2 mg. I did go down to 1 mg but got terrible pain. Went up to 10 mg and then got it down to five but was in pain. I also have bronchiectasis. My pulmonologist said it’s fine to go on methotrexate. I would appreciate anyones advice who has had this experience, thank you

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18 Replies
YuliK profile image
YuliK

Mrs Nails is the expert at the moment for methotrexate...

I was advised too, but I have a fatty liver so I declined.

Hang in there ,one of our lady mods will direct you.

Cheers

YuliK. 🌹

Morning Lever

YuliK is up just ahead of the gang this morning. Thanks YuliK 🌷

As far as l am aware none of us have been ‘switched’ from Pred to Methotrexate.

In general it is used as a ‘Steroid Sparer’ to help us get the best out of the Pred & reduce the dose steadily.

I’m guessing you’re in the USA has he told you how he proposes to do this, as you have to start on a low dose MXT to see if you can tolerate it, then increase it & taper the Pred.

I have written a couple of Posts on MXT l’ll be updating them & can send you a link.

Kind Regards

MrsN

PMRpro profile image
PMRproAmbassador

I wonder why your pulmonologist says methotrexate is OK - this

ncbi.nlm.nih.gov/pubmed/219...

would be enough to put me off it if I had bronchiectasis unless I REALLY needed it.

But let's look at this overall:

You have not yet had PMR for 2 years and have reduced to 7.5mg on your own. That is what is called a physiological dose, about the same amount of corticosteroid as your body produces in the form of cortisol naturally. Most good doctors stop worrying at that sort of level. It is more than likely you will get slightly lower - 6mg is probably on if you go about it carefully in 1/2mg steps down.

PMR has a median duration of management with pred of 5.9 years, barely a third of patients are off pred entirely in 2 years. The median time to get to 5mg is 18 months. 40% of patients are still on pred, albeit low doses, after 10 years. The rate of adverse effects, other than cataracts, is similar in PMR patients on low dose pred and an age-matched population not on pred.

medpagetoday.org/rheumatolo...

Do you get worse chest infections due to the bronchiectasis? If so, do you need antibiotics when you do? If you do, you will have to stop the mtx each time. Methotrexate is unlikely to replace the pred - it MAY allow you to get to a slightly lower dose of pred but there is no guarantee. It works for some, it doesn't for others. And methotrexate DOES have lung toxicity listed - it can lead to lung fibrosis although unfortunately I can't find figures.

Personally I would refuse to take it if I were in your shoes - but I have had bad experiences with it myself so maybe I am biased. You are early in a PMR journey, you are already at a relatively low dose and you have time. And, above all, you have a pre-existing lung condition. Use of corticosteroids, which are hard to avoid in managing PMR, and DMARDs concurrently is known to increase the risk of infections and there is no evidence that methotrexate will REPLACE the pred. It may for a few patients who may have been misdiagnosed - no promises though.

ncbi.nlm.nih.gov/pmc/articl...

Baileyw06 profile image
Baileyw06 in reply toPMRpro

I have been on prednisone since April 2017.

I have tried to get below6 and have had flares . My Doctor said she will be happy if I get back to 6 and stay there . Right now I am going from 6 1/2 to 6 on the 5 week taper.She said that there are very few side effects and having constant inflammation and pain is worse ! I have been taking CBD oil which is helping me and no side effects.

PMRpro profile image
PMRproAmbassador in reply toBaileyw06

Hallelujah for a sensible rheumy!! Where are you?

Baileyw06 profile image
Baileyw06 in reply toPMRpro

In Florida and it is my primary physician, haven’t been to a Rheumotolgist.

PMRpro profile image
PMRproAmbassador in reply toBaileyw06

Hallelujah for a sensible PCP who feels confident to manage PMR then and has sense. Lots of people in Florida seem to struggle.

Baileyw06 profile image
Baileyw06 in reply toPMRpro

Thanks, I am very lucky because of your group, she listens to what I share with her from the site and she does a lot of research.When she diagnosed me she gave me all the information on PMR.

in reply toBaileyw06

That is great news. Having been at 6mg for 12months I can say NOT tapering gives you a boost.🌻💜

Baileyw06 profile image
Baileyw06 in reply to

You haven’t had any flares?

in reply toBaileyw06

A few days when I thought some more pred might help, but when I accidentally took a double dose i didn't feel any better so presume I am about right. I did have a bit if a do a few months ago but I realised it was fibromyalgia flare. Some days if I forget to take my steroid sparer I can feel my thighs start to burn but the sparer squeezes more out if me. I did swap to taking 5mg coated pred at 10pm and a 1mg uncoated in the morning.

Baileyw06 profile image
Baileyw06 in reply to

I guess we need to listen to our body.I have severe arthritis , bursitis, and a torn miniscus in my knee but now can feel the difference from PMR pain . I treat those problems with heat,Tylenol , or Bio Freeze . I guess I use The CBD oil as a sparer and that has helped me.I also need to pace myself and take naps and not overdue!

in reply toBaileyw06

That's exactly right on all counts 🤗🌻

katiemills profile image
katiemills

I agree with everyone else - I’d think long and hard about taking the methotrexate. My rheumy has said he’d be comfortable if I managed to get down to 6/7 mg prednisone and stay there for a while , so I wonder why your rheumy wants you to take it now ? You’re almost in a safe place , so to speak . Mine actually said he wouldn’t put me on methotrexate if I got that low on my own . I have really struggled to reduce since I was on 20mg so at 13 mg he started me on methotrexate to help me reduce . I don’t seem to have any nasty effects with methotrexate but I don’t have any preexisting chest conditions either..Methotrexate isn’t a replacement drug for prednisone - it’s meant to help the prednisone do it’s work more effectively. Mrs Nails and PMR Pro are the true experts so I’d always heed their advice . Good luck !

Jocelyn344 profile image
Jocelyn344

If you have been advised to take methorexate, should be OK. I have failed to get below 11.0mg, in spite of careful tapering. If it suits you, good luck. I also have brochietasist due to having had whooping cough when a toddler. Just becomes difficult when I get a chest infection.

Good luck, but do not tolerate more pain than you can.

bonnielm1 profile image
bonnielm1

I went from prednisone to methotrexate. I was on prednisone for approximately 3 years. I got a new rheumatologist that did not want me on prednisone any longer. I would try to taper then I would have problems and have to go back to a higher dose. It was awful. My skin was getting real thin and also my bones. Gained weight. I was always having mood swings. So I tried to come off of it with methotrexate The pill form of methotrexate made me sick. My hair would fall out real bad. So then I started giving myself a methotrexate injection every week. Much better than the pill for me. I also took biotin and some other vitamins to help the hair problem. It took probably another 9 months on methotrexate with no prednisone. Finally I am medicine free. I have lost 50 pounds. I feel great. It was a long struggle.

Telian profile image
Telian in reply tobonnielm1

Well done you! Love a success story albeit a bumpy ride.

Christophene profile image
Christophene

I have refused Methotrexate too. A recent 2017 scholarly research article, said Methotrexate should only be used if a person has had a 2nd relapse ,but that does not necessarily mean Prednisone should be stopped.

What is worse? Weakened bones for which there are other treatments and meds, or taking a cytoTOXIC medication.? There is a lot of controversy here in this forum, and within the medical community about so-called disease modifying drugs; ,(DMARDS); how does a drug know how to preserve healthy cells and attack disease causing cells.? That's where you are with Methotrexate which is used to treat cancer in higher doses.

A factor is your current dose of Prednisone; if his plan is to drop your prednisone suddenly and completely, and change to Methotrexate, by how much.? Ask these questions before agreeing. I admit I am against Methotrexate. Good luck.

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