Is it worth taking Methotroxate when on a low dose of prednisilone?

[humlies]

Hallo wonderful people

I am trying to taper from 2 mg of pred. to 1.5, without much success; I have been on 2 mg for about 3 months. I had a call the other day from a Rheumatology nurse, who is very keen for me to start taking methotroxate , on the grounds that I have glaucoma, which might be made worse by long term use of steroids, which I have been taking for just over 2 years. I know there have been a lot of posts about Methotroxate, but reading about the possible side effects makes my hair stand on end, and I wonder whether I should just continue on the low pred. dose. Any suggestions would as usual be very welcome. Thank you all.

[DorsetLady PMRGCAuk volunteer]

Well as you've only had PMR for about 2 years, and are down to 2mg, I would definitely be saying - no thank you.

What is the point in adding in another drug...and I doubt 2mg is affecting your glaucoma that much anyway ... higher doses maybe.

I'm guessing you are monitored for your glaucoma...and has it worsened? If not, then leave as be, your Rheumy nurse should be pleased you are so low on Pred and praising you, not hassling you add in MTX.

[humlies in reply to DorsetLady]

Thank you DorsetLady ( I think we met on one of the local online meetings). Your opinions are mine - why take yet another drug when I already have so many that it's hard to remember to take them all. The glaucoma was slightly worse last time I was tested, but no-one seemed that worried that my eye pressures had increased.

[PMRpro Ambassador]

My personal opinion? At 2mg not a chance in hell! Or maybe when it freezes over! Not at 2mg and not at your age.

There is no guarantee it will get you off the 2mg any quicker and Prof Dasgupta told us a couple of years ago that he often leaves patients on 2 to 3 mg long term as it reduces the risk of relapses.

I would see my eye specialist and ask if the 2mg is likely to be making that much difference. There are various drops for managing glaucoma - maybe another would be better.

[humlies in reply to PMRpro]

Ha! Maybe I should quote your metaphor about hell.....Thank you for your direct and useful observations. It's a good idea to find out about changing eye drops; I was "outsourced " to the local optician 2 years ago, but there must be a specialist somewhere. Useful to be reminded about the theory of leaving patients long term on a low dose.

[SheffieldJane]

Why add in a new powerful drug with significant side effects when you are practically out of the woods. I doubt that 2 mgs of Pred is doing you any harm at all but it is preventing harm from the residual inflammation that remains. Do not allow yourself to be bullied unnecessarily, your instincts are correct, in my view as another patient.

[humlies in reply to SheffieldJane]

This are my sentiments exactly. It is so good to have this confirmation that I am doing the right thing by not having yet another drug to take.

[Koalajane]

I was told I had glaucoma by an opthamologist. I then saw a consultant who said he didn’t think I did have glaucoma, maybe some ocular hypertension. He did some tests and said no I didn’t but because I have thick cornea the “puff test” reads it incorrectly. I don’t have glaucoma! I thought you might be interested in this

[humlies in reply to Koalajane]

This is very interesting. I have had glaucoma for 20 years, and it has been confirmed by numerous scans of the back of the eyes, but this is useful information.

[Suffererc]

same here. My third attempt at 1.5. Presently on 2.5/2 hoping to go to 1.5 in 3 weeks. Thinking of doing 1.75 or lingering on 2 for longer 😊

4.5 years on Pred

[humlies in reply to Suffererc]

Yes, I am thinking of returning to 2, with a maximum of 2 days a week when I go down to 1.5. We are all in this together!

[KinnearD in reply to Suffererc]

I have got to 2mg pred after four years and now reducing very slightly by cutting a 2.5mg and 1mg to get an approx. 1.75mg. It tedious but a whole .5mg seems too much . Good luck. 😊

[Suffererc in reply to KinnearD]

yes. I am going to do the same. Need praise to keep going. Only get support on here tho. Would like to hear my GP say well done you are doing well but no chance . Just bangs on about how I have been so long on Pred.

Good luck to you too 😊

[humlies in reply to Suffererc]

And well done for your achievement! Congratulate yourself

[humlies in reply to KinnearD]

Well done you. My pill cutter now simply shatters the pills!

[DorsetLady PMRGCAuk volunteer in reply to humlies]

Maybe invest in a new one ….😊

[humlies in reply to DorsetLady]

Tried that - they still shatter! Must be the fault of the pred!

[BettyE]

"your Rheumy nurse should be pleased you are so low on Pred and praising you, not hassling you add in MTX."

Hear hear. Ill -informed professionals drain our confidence and are a nightmare for their colleagues.

[humlies in reply to BettyE]

Yes, a bit of praise never goes amiss, and can, I think help our physical well being as well as our mental state.

[Suffererc in reply to BettyE]

a Rhuemie or GP pleased 😂🤣😂🤣😂

[Zareda]

I also am in the same boat. I am on 1mg and have been for 5 months. I made two unsuccessful attempts to go to 1/2mg. My rheumatologist also tried to push me to methotrexate. I finally was firm and told him I will not do it and stop asking. So he has finally conceded to letting me stay on 1 mg for now. I still will make another attempt to go to 1/2mg in Oct, I’m not pain free on 1mg, but it’s a functional dose for me. I don’t think I’ll ever be pain free. Good luck with your tapering attempts. I hope you find a dose that works well for you.

[humlies in reply to Zareda]

Yes, I find it difficult to judge whether I should stay as I am or press on with small reductions, which are inevitably challenging. All the best with your journey - it is wonderful that you are on only 1 mg of pred.

[Suffererc in reply to Zareda]

on 1mg and pushing MTX on you. Bit of a waste of time that , you are nearly there. Well done 😊

[Zareda in reply to Suffererc]

Thank you! He certainly made it a battle when it didn’t have to be.

[MrsNails]

Golly, that’s taking a sledge hammer to break a peanut….

It’s the Nurses Opinion only - Prof Dasgupta keeps a lot of his Patients on 2mg/2.5mg as a long term strategy to keep symptoms at bay…..

[humlies in reply to MrsNails]

I think the rheumatologist (whom I last heard from over 18 months ago) would be saying the same as the nurse, but I am quite happy to stand out against their suggestions, especially after the comments from this group!

[MrsNails in reply to humlies]

l can take it but l’m up at 12.5mg (higher atm - Sick Day Rules) & No MTX

[humlies in reply to MrsNails]

Thank you for the reminder of Sick Day Rules - which I heard of when I first joined this group, but have now forgotten....

[MrsNails in reply to humlies]

healthunlocked.com/pmrgcauk....

[Zareda in reply to MrsNails]

That is exactly what the 1mg is doing for me……keeping it at bay.

[Wallysma in reply to MrsNails]

i was on 3 mgs to supplement placquenil for sjogrens RA from 2015 until May when i had to up it by 20 for PMR. I had no bad side effects. I would love to get down to 3 again

Methotrexate ...pleeeeaaaaase. why? Oy vey my head hurts from these docs.

[SusanEleven]

I think that’s a very low dose. I’m “stuck” at 2mg and have been for some time. (Six years on prednisone in total.) My rheumatologist and endocrinologist both say it’s fine to sit at that dose as long as needed, even if it’s forever.

[humlies in reply to SusanEleven]

Thank you for your thoughts. I have never seen an endocrinologist, so lucky you.... I need to be reminded, as PMRPro often tells us, that it is not the dose that is important, it is how we feel.

[Zareda in reply to SusanEleven]

Very happy to hear that. They make me feel like I’m being uncooperative and I’m really not. I’m just doing what makes me feel the best under the circumstances.

[PMRCanada]

I’d pass on the MTX if you’re at such a low dose. I got stuck at 9mg for almost 2 years before I agreed to try MTX.

[Prof99]

Hi there, just to share my pill management & reduction technique ...... I am coming down by .25 at a time and am now on 1.75 – to make that dose, I too halve a 2.5 then halve a 1mg. Often when cutting in half, one half is bigger than the other – so I put all the ‘less than a half’ bits in one container so that I can have days when I take >1.75 (less than 1.75). By taking a ‘less than’ dose every other day, I am getting my body ready to start the slow taper to 1.5. I buy little pill pots on EBay and clearly mark each one with all the bits. I cut tablets with a sharp knife on a small wooden chopping board – I find the plastic ones ‘give’ too much and the pills do disintegrate more. I have a pair of tweezers in my ‘pill kit’ and feel like a pharmacist when I have a pill cutting session – but it works well for me, so I hope this is helpful. Best Wishes

[humlies in reply to Prof99]

Thank you! Nice to know that other people are having fun. I can't understand why it's not possible to buy pred. in 1/2 mg tablets. I will try the sharp knife - pill cutters son't seem to work, and my teeth don't always produce a net half!

[PMRpro Ambassador in reply to humlies]

" I can't understand why it's not possible to buy pred. in 1/2 mg tablets"

Because it simply doesn't make economic sense to do so. The cost of the pred is negligible - the rest of the tablet costs the same as a 5mg tablet to produce but there is very little demand because the vast majority of patients take does in multiples of 5mg and reduce in 5mg steps. 2.5 and 1mg tablets are available - cutting isn't essential until you get to below 2mg

[humlies in reply to PMRpro]

Ah! Thank you.

[kulina in reply to humlies]

I also reduce the Pred by .25 and here in the US the pills have a scored groove and that makes cutting in half easy but if I miss the groove it shatters a little.

[humlies in reply to kulina]

Yes I think some strengths of our pred in the UK have a groove, but not unfortunately the 1 mg. pills. Hope you are doing well in your part of the world.

[PMRpro Ambassador in reply to humlies]

Remember you can get down to 2mg in 1/2mg steps by cutting a 5mg to get 2.5mg and then adding 1mgs as required.

[humlies in reply to PMRpro]

yes, thank you. However I am edging my way down to 1 1/2mg. now - very very slowly!