Methotrexate concern

[gemmalaura]

Hi I am seeing the Rheumatologist tomorrow who will ask me how I am feeling and what dose I am down to following yet another flare. I am down to 4 mg but beginning to feel pain in hamstrings again, I think I have reached my level but this is concerning as rheumy will as she mentioned previously prescribe methotrexate to help me get off pred. I am concerned about this as I have read posts on here where it has affected peoples breathing, something I don't want as I also have asthma.

[DorsetLady PMRGCAuk volunteer]

4mg may be your level - at least for now.. and tbh don't see the point in adding in MTX at such a slow dose.

Maybe go back to 5mg - and see if that helps.. and when you taper how are you doing that?

Are you only trying 0.5mg at a time and one of the slow tapers we often talk about on here, or something different?

[gemmalaura in reply to DorsetLady]

I am using your 7 week taper and have got down to 3.5 or 4 mg before and flared each time. Rheumy is adamant she wants to get me off pred so with several flares and 5 years on pred she will be pushing for me to try MTX even though I have raised my reservations at my last appointment. Thanks for your reply.

[DorsetLady PMRGCAuk volunteer in reply to gemmalaura]

Well as you say that sounds like your limit - not sure why some Rheumies can’t accept that…

Anything below 5mg of Pred is almost side effect free - whereas adding in MTX will bring more.. bonkers approach.

Sorry you are having to deal with it.. 🌸

[gemmalaura in reply to DorsetLady]

Thank you.

[piglette]

I would have thought it is not worth your rheumie’s time suggesting methotrexate at this late stage, particularly as it doesn’t work for everyone anyway. Having said that, I am not sure I really understand the minds of some rheumies!!

[gemmalaura in reply to piglette]

Yes me too thanks

[bonmaine in reply to gemmalaura]

Me too. Rheumy admitted that uncertainty is the name of the game in treating PMR. I appreciated his honesty and it explains some of his decisions. I am down to 3mgs again and will use the 1/2 mg taper. Remember, they don't know what causes it and have to experiment with the tx options. That's one reason I appreciate this forum so much. So nice to hear what works for others and the support is very welcome. TY all.

[Sharitone]

It does seem odd to add MTX now, but if she insists, you may find it this reassuring :

Although unproven, it has been suggested that effective treatment of allergic inflammation may prevent long term consequences of asthma and avert deterioration in pulmonary function. Methotrexate has potent anti-inflammatory actions, even at low doses, and was judged to be a suitable candidate drug for asthma treatment if it could demonstrate an acceptable tolerability profile.

pubmed.ncbi.nlm.nih.gov/824...

[gemmalaura in reply to Sharitone]

Interesting thank you Sharitone

[PMRpro Ambassador]

At 4mg the rheumy should NOT be pushing MTX "to get you off pred" - there is no proof that MTX can achieve that and being at 4mg probably has fewer longterm implications than adding in a new drug.

[gemmalaura in reply to PMRpro]

Thank you PMR pro

[Rynn33]

Hi I’ve been on prednisone for over 2 years now and have spent the last year trying unsuccessfully to taper below 5mg. My rheumy has prescribed MTX with a slower taper to get me to zero potentially ( disease level permitting) by Sept 2024. I’m only a week on it but so far the main side effect is some nausea especially if I eat hummus for some weird reason(!). I will be staying on 5 mg for 6 weeks before going to 5.5mg and below. It sounded like it was something they do try to help the taper if you get stuck - once your chest xray is clear and bloods ok. I’ve mild asthma ( family full of it) so will be watching my lungs but so far no impact on my breathing but I know it’s early days.

[DorsetLady PMRGCAuk volunteer in reply to Rynn33]

As you have had PMR for less than 2 years - it’s no great shakes you aren’t below 5mg… about par for the course for many. Your Rheumy is obviously one of the ‘it only lasts two years’ brigade. For some it does, but for many it lasts a lot longer.

I would say a slow taper on its own would be sufficient- no need to add in the MTX - with another set of side effects to cope with, especially when you have got as low as you are without it.

[Rynn33 in reply to DorsetLady]

The rheumy clinic is not forcing me down on the 2 year deadline thankfully, just looking for ways to spare my steroids. I’m going to try it anyway as I definitely can’t get below 4mg (I’ve tried various slow tapers in 2023 )at the moment without really seizing up. It’ll be an experiment for me as I have some milder shoulder pain on 5 mg so going lower shouldn’t work so if MTX helps in 3-12 weeks and only gives me a bit of nausea I’ll persevere. I’m lucky to have no other medical concerns and only 55.

[DorsetLady PMRGCAuk volunteer in reply to Rynn33]

Try it by all means… and good to hear that Rheumy department is not pushing you, but what I am trying to get across is that your PMR may still be very active, and no matter what tapering method you use to reduce, if it is, you will still need the right amount of Pred to control the symptoms.

It’s not just a matter of starting the course of treatment and reduce…. After the initial dose of getting the built up inflammation under control, it’s reducing steadily to find the lowest dose that gives you the same relief on any given day as that initial dose did. Your PMR is self limiting - so it may last 2 years , it may last 6 years or longer, or anywhere in between. Until it goes into remission, you need the dose, you need…and even 0.5mg can make a difference. That’s all I’m saying…

[PMRpro Ambassador in reply to Rynn33]

MTX is not a guaranteed cure-all - it works very well for a small cohort of patients but by no means all. Any doctor who claims it WILL get you off pred is pushing the truth, It MAY, but it comes with a pretty unpleasant range of adverse effects and there is no real justification for adding in another immunosuppressant at such a low dose. At that level. there is also the aspect of return of adrenal function.

[gemmalaura in reply to PMRpro]

Yes that's my point too Thank you PMR pro.

[redruth123]

I have asthma too, well controlled by puffing Symbicort (budesonide etc) every day. I also take MTX 10mg weekly and have been on it for well over a year now. I have not noticed any worsening of the asthma. All the best.

[gemmalaura in reply to redruth123]

Oh that is good news thank you.

[krillemy]

I have not read or heard anything on asthma and MTX? Please if you have some information on this?

I am MTX for now 3½ month and 12,5 mg pred. I have no real side effects from MTX except loss f appetite the 2 days after doing (that´s just fine!). I also have mild asthma, that normally do not need further treatment (than the pred) but it has become very severe now that I have also had a URTI(virus or Whooping cough) for the past 6 weeks. So up to 25 mg pred. for 3 days now to control the asthma -+ all the inhalation stuff!!

[gemmalaura in reply to krillemy]

Oh dear hope you get better soon. I don't have any further info on MTX and asthma Sharitone has posted an interesting article on this earlier. Good luck.

[cranberryt]

I have continually had to refuse steroid sparers. Even now, at 1.5mg, they are pushy to get me off and have a hard time believing that amount helps. And yet it does. It is your body and you don’t have to take something even if they want to prescribe it. I remind them that under 7mg is considered safe and that I don’t want worse side effects from additional medications.

[gemmalaura in reply to cranberryt]

I did not know that below 7mg is considered safe. Thank you.

[PMRpro Ambassador in reply to gemmalaura]

By some doctors. But more recent thought is that there is no safe dose. It is all relative - unmanaged inflammation is also not safe in the long term.