Methotrexate instead of Prednisone?

[newsusy]

I just had a routine appointment with my Rheumatologist about my GCA. Once I hit 7mg. I have been tapering prednisone by .5mg a month and am currently at 6mg. I have had no problems in the way of flares since beginning the Prednisone regime a year ago. She said once I hit 3mg. that she wants me to quit taking Prednisone and wants me to go on Methotrexate instead which was a bit of a shock to me. This has never been mentioned before. I expected to keep tapering slowly until I was off it especially since there have been no problems so far. Of course she is concerned about my being on it for longer than she figures I need be. She also said once I hit 3mg. the prednisone has just a placebo effect anyway. Really?The idea doesn't sit right with me... what if abruptly stopping Prednisone results in a flare and I have to go back on Prednisone at a much higher amount to take care of accumulated inflammation? Essentially adding more Prednisone than I would have had having stayed the course I am on. What if adding a new drug - methotrexate - results in new side effects, especially since the prescribing of such isnt really warranted considering I have been on a pretty even keel? Not saying that that wont change as I reduce further but why plan to fix what isnt broken? Thoughts?

[Mamamia21]

I am no expert in this but I would absolutely say that just removing Pred, even at a low level is extremely dangerous. There will be others along, who are far more knowledgable than me to tell you this but it should not be done. You can't replace Pred with Methotrexate. It is a steriod sparer not a replacement. It is often used to help you come off Pred but you use it at the same time. I was struggling at 8mg and was put on Methotrexate to help me reduce which has helped me as I am down to 2mg now. It does not work for everyone either... I certainly wont just be stopping overnight and will probably be on steroids for another 2 years at least...

If you are currenly reducing nicely then I would not add anything else into this mix until you need to. Those are my thoughts anyway. Hope it helps 😊.

[Smithie49]

Hi newsusy. I was on 7.5 mg pred when my rheumy added methotrexate. This was back in Jan this year. I've reduced my pred very slowly to 6 but think it may be too low as I'm very stiff. I've had PMR over 3 years and had a few flares while trying to taper. I'm not sure what's helping what or whether I'd be in the same situation if I'd never started the metho but my rheumy never suggested I stop pred abruptly . That seems like asking for trouble. Hope it works well for you whatever you decide.

[DorsetLady PMRGCAuk volunteer]

Bonkers idea - as you have been on Pred for about a year and down to singles figures so obviously managing to reduce without too much problems, what is the point in changing medication. And to be honest 3mg is not going to cause you any issues after being on higher doses for GCA.. and in fact stopping it may do a lot of harm.

She obviously doesn’t have full understanding of GCA, Pred nor adrenals.

[PMRpro Ambassador]

What utter tosh. To put it mildly and politely. I am left to ask if she has any medical training and whether she slept through her physiology and pharmacology lectures if she did.

To start with the non sequitor: if pred is only a placebo at 3mg, exactly why does she imagine MTX is required in the first place? MTX doesn't replace pred in ANY way in GCA/PMR. It may be useful in a small cohort of patients with PMR for whom it can be a really good substitute for pred. But by no means all. It should be considered for a patient stuck at 10mg or thereabouts - but NOT at 3mg. And it is introduced alongsidea reducing pred dose - not stop pred and start MTX.

At 3mg the pred is still plenty to suppress adrenal production of cortisol and it acts as a replacement therapy. To stop pred suddenly even at 3mg is tantamount to medical negligence as it puts you are a high risk of an adrenal crisis since your body may well not be producing any natural cortisol. She needs reminding of that - get the address of a good medical negligence team just in case!!

And any good and well informed rheumatologist should know that as little as 1mg (and less) can be enough to keep the ongoing production of inflammatory substances by the underlying autoimmune disorder under wraps to prevent a relapse. It cured nothing at the start, it is a management strategy and is required as long as the autoimmune part is active and that can be well over 2 years. IF you have pure GCA, i.e. with no component of PMR symptoms, then you are more likely to taper to zero and get off pred in a straightforward manner but there are no guarantees. We have people on the forum whose GCA flared at under 5mg.

[PMRnewbie2017]

GCA and PMR aside, I really think your Dr needs to be reminded that after 4 weeks of treatment with Pred at a dose higher than 5mg your HPA will be suppressed. The speed at which normal cortisol production resumes depends on several factors including cumulative dose of Pred, and length of time on treatment. Opinion varies about what dose of Pred is equivalent to the daily amount of cortisol produced but some research I looked at recently says 3 to 6mg. So at 3mg of Pred you are still likely to have a reduced natural output of cortisol. There is lots of information which states that it can take many many months to reduce from 2.5mg to zero and the path is not always linear, ie there will be good days and bad days and even at zero, patients struggle for up to year if they encounter stressful events in their lives. If you are computer savvy perhaps you could go to your next consultation armed with references to back up what I and my peers have said? Or even print off these replies to your post?

[piglette]

I often wonder how many people go through a lot of pain and discomfort because some doctors are really not conversant with the way drugs work? I do think the medical training can be weak in this area too.

[Prof99]

It can be difficult to ‘stand up’ to a Rheumatologist and say NO – but knowing what I know now, and in your situation, I would definitely say NO to MTX. Firstly, MTX takes 3+ months to have an effect IF it is going to work for you – so stopping Pred to take MTX would leave your body with no help at all. Secondly, if the majority of people on this forum find even dropping by 1mg or ½ mg brings back symptoms, I very much feel that stopping at 3mg will send your body into shock. Due to ‘pressure’ from my Rheumy, I did get off Pred at the end of March and am now just on 20mg MTX once a week. I feel it is doing NOTHING for me – I wake in pain everyday and my GP is trying to help me manage my daily pain, without stepping on the Rheumy’s toes. Rhemy won’t do anything else for me until I have an MRI for which I am on a long waiting list for.  Also, for me, the side effects of MTX are catching every cold that is going around, constant mouth ulcers, verrucas and cold sores. I DO NOT recommend it.

[Graciejack4 in reply to Prof99]

I am in a similar position to you, I am on Methotrexate only but have lots of pain especially in my arms but the rheumatology team don’t think it’s related to my GCA and PMR 😞

[newsusy]

Thank you all for your responses. After hearing the newly devised plan of suddenly going off Prednisone at 3 mg with the added comment of the so called placebo effect I immediately said to myself "well there's no way in hell that's going to happen!" It helps a lot to be armed with the comments and educated reasoning from everyone here on the forum. Whats sad is that I now find it impossible to put any faith whatsoever in anything either of my doctors have to suggest going forward. They are merely gatekeepers when it comes to the drugs that I need in order to continue fighting the battle. My GP doesn't have a clue and should I question anything my Rheumatologist has to say she just replies with a shrug and a "she's the expert" - NOT! My stress levels go way up before every appointment with either of them and I find it really difficult to be diplomatic when advocating for myself. Even if I go in armed with sensible information I have literally been met with a "talk to the hand" gesture. So frustrating!