Is Methotrexate a route worth taking??

[Lesibz]

Does anyone actually have anything good to say about sparing agent Methotrexate. Is it it out of the frying pan and into the fire I wonder???

[PMRpro Ambassador]

There are people who find it helps them get to a lower dose of pred OR smoothes out the process of reduction. But there are no guarantees.

MrsNails finds it helps her a lot but even she has had bumps in the road. It is probably worth trying - if it doesn't make you feel ill it is worth the trial and it may get you to a lower dose of pred. How much lower and with what compromises is another question.

[Lesibz in reply to PMRpro]

Thank you for replying regarding MXT. I have been taking Pred for five and a half years now.

Ive been down to 1/0 mg of pred December/January of last year but ended up with multiple flare ups and oedema in my right hand so had to go back up to 3mg. Now tapered down to 2mg but really not sure I want to take MXT as could be stuck on that for a long time. They won't tell me how long I would need to take it for. Just worried I will never be able to stop taking Pred. Im 51 now so have this condition from an early age.

[PMRpro Ambassador in reply to Lesibz]

I'm darn sure I wouldn't be adding another drug like MTX if i was already at 3mg!!!! Prof Dasgupta told us last year that he often keeps people at a dose of 2-3mg for a long time as it reduces the risk of relapse and is a low, safe dose even for longterm use. It is well within the physiological dose - the dose equivalent to the amount of cortisol the body produces naturally in order to function properly - you'd be dead without it.

I don't care what anyone says - a low dose of pred is safer than adding in other stuff that doesn't come with a guarantee of success. I had a long discussion about it with a German immunologist at a science meeting a few years ago: they are very concerned about the indiscriminate doubling up - even tripling up - of immunosuppressants.

[Lesibz in reply to PMRpro]

I'm glad you've said that because that's what I think.I actually seeked out Prof Dasgupta myself as he seems to be one if not the only specialist, when it comes to PMR and all it entails. I know also that 2-3mg is what the adrenals naturally produce. However my adrenals are apparently borderline which a Synacthen stimulation test proved.

If I am to naturally taper from Pred without help from MXT or any similar drugs. It could take many months.

As my adrenals may take all that amount of time to wake up.

Thank you for being honest with me.

It's more than my rheumy team have been of late.

They're not the ones taking it and are pushed by the Pharma's to encourage people to take more medication.

🙏

[PMRpro Ambassador in reply to Lesibz]

Personally I think there are better PMR specialists but I wouldn't dispute his place in the field of GCA and the final stages are the same for both PMR and GCA.

I take his comment about a 2-3mg dose as a tacit admission that the duration of PMR is much longer than they are prepared to say out loud. That is something we patients and some rheumatologists and even GPs are well aware of - and we also know that for a lot of patients even a dose of 1mg may be plenty to keep the inflammation under control but they cannot stop pred altogether. Once you are well below 5mg the amount of pred is minimal and associated with no adverse effects for the majority of patients. Why on earth add in a heavy duty drug with its own set of adverse effects that isn't guaranteed to get you entirely off pred? It doesn't work for quite a few RA patients where it is the gold standard - if it worked that well for PMR it would be in use much earlier. It isn't and until they can explain to me why - I remain sceptical.

[Lesibz in reply to PMRpro]

Hi PMRpro.

The reason they are offering me MTX is because it would seem my adrenals are sleeping and they think the only way I can get off Pred is to take it.

Although when I asked them how long I would have to stay on MTX they couldn't give me a definitive answer.

I said is it 6 months, a year 2,3,4 and they said it depends on me. Put it this way.

They were reluctant to elaborate but i'm sure, you and most on here can associate with that.

I have been on an anti inflammatory diet for years now to enable me to get off Pred. [My Choice]

I went Vegan and gluten free.

However I have returned to pescatarian due to finding out I had cancer earlier this year, following up from a scan due to a bad flare up when I reduced to 1/0 on alternate days.

Fortunately the cancer has gone way after therapy so I am now focusing on reducing again but its a painful process.

Especially in the mornings of course. It doesn't help being a carpenter.

Have you or anyone else you know on hear had similar circumstances as I have.

How long have you been living with PMR or do you have GCA .

Sorry I am new to this forum as you can see, so I have a lot of catching up to do.

[PMRpro Ambassador in reply to Lesibz]

I've had PMR for nearly 16 years, it has been better and worse but never entirely gone away. But at 3mg your adrenal function should slowly wake up - many people get normal synacthen test results and normal basal cortisol levels at that dose. There really is no guarantee MTX will get you off pred nor how long it would take,

[Lesibz in reply to PMRpro]

oh wow.You really are a pro at this. Obviously i'm curious to know what level you are at the moment. And ask you if you've ever been down to 0 in those 16 years.

I also wanted to touch on whether, you, in your professional opinion, could or would recommend anyone other than Prof Dasgupta.

He was the only specialist that the helpline came up with.

I would really like to find out if there was anyone out there who has tried a more holistic approach. And that includes yourself of course.

I truly believe in what you say about the Meth not guaranteeing me a safe passage off Pred.

Hence why my Rheumy team are reluctant to say too much on the subject. They don't know either.

[PMRpro Ambassador in reply to Lesibz]

No, never reached zero - did get below 5mg just before a flare/relapse so maybe I just missed the opportunity then!I'm a patient - not a doctor. Don't get me wrong, Dasgupta is very knowledgable but maybe not always the easiest to get along with. I don't know what you mean by holistic - what is important to me is that the doctor is willing to include me as a partner in the decisions about management of my PMR and explain their thinking without being overbearing about it. There are a lot of doctors who do that very successfully but some others are often too patriarchal and want a "my way or not at all" pathway.

[Lesibz in reply to PMRpro]

Hi PMRpro. I'm sorry to hear you've never been below 4mg. Its a real ball and chain sometimes I find.

I hear what your saying with Prof Dasgupta. I would be keen to know of any other PMR specialists that you, or anyone else you know has used and would recommend please.

When I say holistic, I mean someone who addresses the whole person including their physical, mental and emotional health. Someone who takes in social factors into consideration. they might look at alternative medicines other than traditional/conventional medicines. When you've been taking medication for many years like I have for various ailments you tend to start searching for more natural remedies and potions that don't come with as many side effects.

If I had to take something for the rest of my days. I would much rather it was more of a natural remedy.

I also wanted to ask you if you've ever thought of taking CBD oil for PMR.

Whether it has THC or not?

I think I have got to the stage with my Rheumatologist whereby he is in the "My way or not at all" stage.

So I am at a cross roads with my treatment going forward.

[PMRpro Ambassador in reply to Lesibz]

I don't find being on pred particularly onerous - it gave me my life back and I manage to do most things. No - never been tempted to even try CBD oil

[Palme in reply to Lesibz]

Look at prednisonepharmacist.com. A doctor or pharmacy who had to take Pred and did extensive research. New.

[Nextoneplease]

Thank you Lesibz for raising this 😊

I’ve only been on prednisolone for eight months and already the rheumatologist at my recent (telephone) appointment has told me that I’m not reducing quickly enough (I’m currently at 12.5 from 40 in June). He says if I have another flare, or can’t reduce to schedule, he will strongly recommend that I go on methotrexate! I’m sorry, but unless there’s a major change in my situation, I’ll be strongly of the view that I don’t want it - or certainly not yet.

All discussion of the issue helps me get my head round it, so thanks again (and thanks also to PMRpro).

Nextoneplease x

[Linny3 in reply to Nextoneplease]

Hi NextonepleaseMy Rheumy wanted me to g on mtx early after diagnosing pmr. I chose not to. I have had pmr for 6 years and have been on 15mg pred most of that time. Looking back, I wish now I had tried mtx early in the process. Nothing has worked to reduce the pred. and I have tried it all. I am now on mtx.( 2 shots a week ) that dose seems to work ok for me. I have been on it for 3 mos. . Actually I have felt pretty good on the mtx. Some hair loss but not a big deal, some mouth sores but the folic acid helps a lot and lately some itching but that comes and goes. I have reduced from 16mg to now working on 14&1/2 mg pred. Under 15mg has always been a problem point for me. I have been at the 14&1/2 mg level for 2 weeks now.

Good luck with whatever you decide.

[Nextoneplease in reply to Linny3]

Thank you Linny3 😊Lots to think about…..

I will not rule methotrexate out but my strong feeling is “not yet”. Feel I want to see where I am a year on from diagnosis (which will be next March) and also hopefully get my cataracts done in the meantime…..

Very glad it’s now working well for you 😊

Thanks again.

Nextoneplease x

[MrsNails]

Hi Les

I’ve been on MTX with a couple of breaks for different reasons but l was on 20mg Pred when it was discussed & debated on. I was actually on 18mg when l started & IT WORKED - l got down to 7.5mg Pred & the difference was amazing…..

However, l can’t imagine why it would be suggested for someone on 2mg of Pred unless they had RA/LORA*

MTX is a heavy duty drug & takes some adapting to but in its rightful place it’s worthwhile.

But at 2mg Pred l wonder what the rational behind it is?

You can read about My MTX Journey in FAQ

Kind Regards

MrsN

*LORA - Late Onset Rheumatoid Arthritis

[Lesibz in reply to MrsNails]

Hi Mrs Nails.Thank you for your reply.

I have just replied to PMRpro explaining my situation. I am determined to get myself off Pred but I am putting myself through the pain barrier at the moment.

I want to see if my adrenals will wake up. Which is why I am on 2mg. This is slightly below the threshold that our adrenals would naturally produce.

If I am to free myself of Pred, i feel I need to see if I can stimulate them naturally.

I'd much rather do it that way than take MTX if I can.

I will certainly read about your journey which PMRpro kindly mentioned to me.

I'm not anti medication. Its just that I have been on meds for a good chunk of my life prior to this due to 3 spinal surgeries and years of back pain.

I feel that if I can wake up my adrenals, I can possibly rid myself of medication and control it with diet.

Thats my plan at least. Easier said than done.

[Palme in reply to MrsNails]

Look at prednisonepharmacist.com. New.

[Bignorhill]

I am on MTX for vasculitis (following on from PMR), after 13 weeks not had any side effects.I forgot to take my 9mg of Prednisolone last week and then against all medical advice did not take any for 4 days, did not notice any great changes but thought I had better restart the Pred to taper but have gone to 5mg. So maybe the MTX is helping.

[Sharitone]

I've been on MTX for 4 months because I couldn't ever get below 15 mg. I've just been brought swiftly down to 10mg pred.... and a nice flare-up! So I can't say it's done anything for me yet, though on the other hand, it hasn't done anything terrible. Nobody has said anything about having to be on it for a long time.

[MrsNails in reply to Sharitone]

I came down in 1mg steps monthly using a Slow Taper (from 9mg l went drown in 0.5mg drops) getting from 18mg to 7.5mg without problem!

[Sharitone]

Since writing the above, it has occurred to me that MTX is another agent of immunosuppression, which is not great at this time. You may want to take that into account!

[Nextoneplease in reply to Sharitone]

That’s one reason I’m personally resistant to it Sharitone 😊 Also because I feel I should have a lot longer to reduce the pred as best I can - really after only 8 months I don’t think it should be mentioned as the next thing to do…..

Okay it may be in the rheumatologist’s head as a possibility but he doesn’t need to worry the patient with it unless or until it becomes necessary.

Glad you’ve managed to reduce on it and hope flare settles soon 🤞

Nextoneplease x

[Palme]

Just my experience: methotrexate was horrible. Went on the pill for two months. Awful nausea and fatigue for four days. Then time to take again. Lost my appetite because of nausea and lost ten pounds. Bad for me.