methotrexate and steroid reduction: Dear all I am... - PMRGCAuk

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methotrexate and steroid reduction

Freshairfiend profile image
15 Replies

Dear all

I am anxious about an appointment with the rheumatology nurse on Tuesday. I have been taking methotrexate , without any side effects for ten weeks now. I was expected to reduce to 12.5 mg preds from 14.5. I really want to reduce my preds, as I’ve had and continue to have, side effects. However, I’ve been under a lot of stress, my partner had a brain haemorrhage just over four weeks ago, it's not serious, but he’s very poorly at home and I’m struggling. I also have an issue with my throat, since May 21 , which feels dry, raw, strained, not sore. It made me feel very tired from onset. I can’t sing or raise my voice (hard calling the dog). An x ray was delayed during my partners health issue. My gp has now fast tracked me for a cancer test, but thinks it’s highly unlikely it’s cancer.

I have reduced my preds gradually and am now week 1 of tapering to 13mg. My arms have been achey at times, but not badly so and once I had to go back up to the previous dose. I’m conflicted. Part of me wants to trust the methotrexate and do the standard reducing to 12.5 and then 10. And I might feel a whole heap better without all the steroids..Part of me says wait till I’m less stressed.

I’d be grateful for your advice. Many thanks

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Freshairfiend profile image
Freshairfiend
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15 Replies
PMRpro profile image
PMRproAmbassador

PMR stopped me singing with similar symptoms to what you describe - plus loss of breath control. Still can't guarantee what note will come out! It was hard after 50 years of singing,

Methotrexate MAY allow you to reduce your pred dose - it isn't a case of trust, it is a case of finding out by trial, It works brilliantly for a small number of patients - for others it does nothing, And it can take up to a year to see a significant effect on dose.

All you can do is try really. And I would strongly advise 1mg steps - 1mg that works is better than 2,5mg that doesn't. With or without MTX.

Freshairfiend profile image
Freshairfiend in reply toPMRpro

thanks, will do. Do you think it was inflammation that caused the throat problem? Rather than a side effect of steroids?

PMRpro profile image
PMRproAmbassador in reply toFreshairfiend

Definitely wasn't steroids for me - it was long before I got put on pred,

Freshairfiend profile image
Freshairfiend in reply toPMRpro

Thanks, very helpful it’s so clear

piglette profile image
piglette

I am so sorry for how rotten things are at the moment. I always feel don’t reduce until you feel OK to do so and then in small amounts. It sounds like you are not well with your throat and you are having a lot of stress. As PMRPro says Methotrexate does not work for everyone with PMR. In fact it was really for rheumatoid arthritis and it was found that it did just happen to help some people with PMR too.

Freshairfiend profile image
Freshairfiend in reply topiglette

That’s very interesting about RA, many thanks.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Agree with PMRpro - reduction of 1mg only re Pred - you still have a lot going on... and are you/can you get help with hubby?

Freshairfiend profile image
Freshairfiend in reply toDorsetLady

good idea, it’s more emotional with me than practical stuff, but the practical can help, so I’ll give that some thought,

Rynn33 profile image
Rynn33

Hi I’ve been on MTX since late November 2023 and while it’s helped me taper down (I think )I’ve still had to go back up a Pred dose when I started to flare( as advised by Rheumy) I think the MTX effect has been subtle at best and I would focus on getting your Pred dose right for your current circumstances. Take care.

Freshairfiend profile image
Freshairfiend in reply toRynn33

Thank you, yes I intend to go back up a pred dose if I flare. And herring it ok for my current circontasnces is lovely sensible advice. Much appreciated

krillemy profile image
krillemy

The throat issue could be MTX side effect if it fits the time you started? But as for singing - I can sing when PMR is well under control. If not no tone will come out right if at all!! It is really a tell. I find that PMR affect all my muscles. Stay on your current dose or you will not know what is up and down with all the emotional stress going on. I am oh 20 mg MTX and 12,5 mg pred. Cannot come down either due to the same reasons OR MTX sensor help a lot. I do fell a lot better the days after taking it though.

Freshairfiend profile image
Freshairfiend in reply tokrillemy

The throat issue came on nine days before I started on MTX. What is an OR MTX sensor?

krillemy profile image
krillemy

It should have said: “doesn’t”

not sensor 😀

Kritterkid profile image
Kritterkid

This is interesting as I am having issues singing notes that I used to be able to reach. I have transcribed some songs into other keys, and now I think I know why it happened. Never read that in the side-effects...

krillemy profile image
krillemy in reply toKritterkid

yes, I have come to the conclusion that all my muscles are affected by PMR

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