Medication question: Hello everyone. Hope your... - NRAS

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Medication question

Gucita profile image
23 Replies

Hello everyone. Hope your treatments are going well. I was diagnosed with Polymyalgia Rheumatica last August and have been on Prednisone since then. I started with 15 milligrams and now I down to 9 or 8. I take some in the mornings and some in the evenings. I still have some body aches especially it I try to bring the dose down. My doctor was suggesting for me to take Methotrexate, any advice on its side effects? Have any of you had any other options?

Thanks a lot.

Peace,

Gucita

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23 Replies
Gottarelax profile image
Gottarelax

I was put on methotrexate in October. The days after the first dose I felt generally tired and lousy (but I was feeling that way with RA anyway). Since then I've not really had much in the way of side effects. I think that it affects people differently. Your rheumatologist will hopefully have asked you to have regular blood tests to ensure that your kidneys and liver are OK with it. I did have one week that my liver enzymes were elevated but they went back down again so I've been kept on it. Hopefully you're one of the lucky ones like me. I hope that the drug works for you. I have a sister with PMR that had to stop taking them as she got a rash.

Gucita profile image
Gucita in reply toGottarelax

Thank you so much for the information, so glad you are doing OK

Rachmaninov2 profile image
Rachmaninov2

Hello Gucita, I thought I’d mention that there is the PMRGCAuk forum in case you were not aware.

Wishing you well.

Gucita profile image
Gucita in reply toRachmaninov2

Which one is this for?

Rachmaninov2 profile image
Rachmaninov2 in reply toGucita

Rheumatoid Arthritis. 🙂

Gucita profile image
Gucita in reply toRachmaninov2

Thank you!

Rachmaninov2 profile image
Rachmaninov2 in reply toGucita

You’re very welcome. 👍

Gucita profile image
Gucita in reply toRachmaninov2

Thanks a lot

BeachsideVia profile image
BeachsideVia

hi! I started MTX 8 weeks ago and I was very very scared about taking it. I have had several rounds of chemo in 2014 for BC, and it brought back that dark time. However….. this is different, dose for RA is low, many people do just fine on it! I had bloodwork and everything is good! I still have pain in different places, but much milder, and my overall mood and attitude is improving. I have another month to go for it to work.

Gucita profile image
Gucita in reply toBeachsideVia

Hi, thank you so much for the information, so glad you are doing OK. I also had BC back in 2011 and 2014, only had to do radiation therapy though.

Runrig01 profile image
Runrig01

I was diagnosed in 2012 with polymyalgia and GCA. Like you I’ve needed the steroids initially at high doses of 60mg but then managed to taper to 10mg. Whenever I tried to lower I’d get symptoms of the pains intensifying again. It was decided to put me on Azathioprine which Is another dmard used as a steroid sparing drug. I was fine on this till 2016, when they had to increase the dose to 200mg and it affected my liver. I was switched to methotrexate then. Around the same time, I was diagnosed with ankylosing spondylitis, as the rheumatologist I was seeing suspected more was going on than just the polymyalgia. I continue on methotrexate to this day, taking 25mg orally. I’m very lucky I get no side effects from it. I do get a bit of hair thinning, and the one time I took in the morning I fell asleep for hours. I take mine with my evening meal, so sleep through the fatigue. These days it’s used to help my peripheral symptoms and reduce the chance of developing antibodies to the biologic.

Unfortunately because of the long term steroids I developed severe adrenal insufficiency, which was only diagnosed when I had a severe stroke at 52, due to an adrenal crisis. I did manage to taper to 5mg quite easily with the help of the AZA and MTX.

Gucita profile image
Gucita in reply toRunrig01

Thank you so much for your message, I hope you continue to be stable.

Mostmoses profile image
Mostmoses

I also started out with polymyalgia rheumatica (disease has since evolved) and tried MTX, first tablets and then by injection. I know that it works well and safely for many people, but I experienced growing headaches and nausea and ultimately ended up in an emergency ward with a reaction to the drug. I am now doing pretty well on s biologic. The message, I think, is that we are all different and it’s important to pay careful attention to your symptoms snd reactions. Trust your own feelings!

Gucita profile image
Gucita in reply toMostmoses

Thanks a lot for your message. So glad you are doing better.

Sheila_G profile image
Sheila_G

Only slight hair thinning at the start. No-one else noticed. Nearly 21 years on mxt and never had another problem with it. Good luck.

Gucita profile image
Gucita

Those are pretty good news, it gives me hope! Thank you so much for writing me back

Scottishlad profile image
Scottishlad

I've been on Methotrexate for quite a few years now. The only side effect I had was I started to get some mouth ulcers. This only occurred when I was on the maximum dose of 25mg.

These days I'm on a biologic and 10mg with no side effects at all.

It is normal to be prescribed folic acid along with the methotrexate as this can reduce side effects.

Kings1 profile image
Kings1 in reply toScottishlad

Yes folic acid is given along side methotrexate. I inject on Thursday. Then take folic acid just for 3 days....Sat sun, and monday

Gucita profile image
Gucita in reply toKings1

How and why do you take the Folic Acid? Thank you!

Kings1 profile image
Kings1

Hi, I currently take methotrexate in injection once a week. I have been on this for approximately 2 years now.. I am happy to say I have had no side effects at all. I have blood tests every 3 months to check all ok. Blood tests are done regular before next prescription is due. I wish you well bless you.

Gucita profile image
Gucita in reply toKings1

Hi! Thank you so much for your message. Which dose are you at? Did it take you a while to reduce Prednisone while being on Methotrexate? Also, why did you chose injections versus the pills? Is it painful to inject?

Gucita profile image
Gucita in reply toKings1

Thank you!

Gucita profile image
Gucita in reply toKings1

So glad you are doing great!

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