tablets.: hi.just want some advice my rheum,wants... - PMRGCAuk

PMRGCAuk

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tablets.

Flosy profile image
12 Replies

hi.just want some advice my rheum,wants to put me me on two lots of different tablets,after I have got down til 1mg.they are methotrexate and Leflunomide.can you help me.thank you.

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Flosy profile image
Flosy
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12 Replies
PMRpro profile image
PMRproAmbassador

What - both? Or try one at a time? Are you already on 1mg pred?

Flosy profile image
Flosy in reply to PMRpro

No I am not,still at 4mg.at mo til mon then 3mg.

PMRpro profile image
PMRproAmbassador in reply to Flosy

If it were me I'd want a VERY good reason for wanting me to take either - never mind both - if 1 or 2mg pred was doing the job. One thing using them in an attempt to get a pred dose lower - but to transfer the patient to them instead of such a tiny dose that you might well get off anyway seems a bit OTT. THEY may think there are no side effects - but that can be far from the truth.

Wallysma profile image
Wallysma in reply to PMRpro

I agree with you to Flosy's question I took methotrexate several years ago.for RA and.immediately got two different infections so I had to stop. I also remember having some breathing issue. But I am in the same.position as Flosy. My rheum wants to do the same thing. I was diagnosed inay put on 20 mg told to decrease to 15 after several weeks. Then 2 weeks later to 10. Of course this didn't work. I have spent the past week seeking info from peeps like you all and the tapering is too fast. Drops of 5 mg is not the way to go....and there is a disconnect to symptoms. So I need to think through this and negotiate with my rheum (so to speak). I have other things wrong and that pain has been kicked up by the PMR I think.

.any opinions on that? Ok thanks for the info. We all need some good days in our life. Please everyone take good care.

PMRpro profile image
PMRproAmbassador in reply to Wallysma

Is another rheumy an option?

Wallysma profile image
Wallysma in reply to PMRpro

Not right now.....it also seems a lot of us have this problem. But the key is how this goes once I get with her and see if she will listen to me.

piglette profile image
piglette

It would be nice to know why your rheumatologist wants you to take both. Did they say the drugs were for the PMR only? Did they say they want you to take both drugs together? Did they explain what they hoped the drugs would do for you?

Wallysma profile image
Wallysma in reply to piglette

For PMR because I am having a hard time doing the reduction. But to reduce to reduce is not good you reduce when your body says do. I would prefer sticking with the pred and trying to start over almost. I am on 15 but I have symptoms. I never had back pain and now. I do. It's hard to do much of anything. I am thinking I should try 20 again or maybe 17....and then not reduce until symptoms have resolved. I.hope that's right! This disease sucks. I have lived with autoimmune issues for many years...but this is the worst. I feel like I have.wasted months already....but I have learned from many here that that is nothing. Someone needs to write a PMR for dummies book...LOL.

PMRpro profile image
PMRproAmbassador in reply to Wallysma

piglette's comment referred to Flosy who is already at a low dose.

It is a very different matter when you are stuck in double figures of pred - though I totally agree with you about their approach to reduction. Utterly crackers!

Jackoh profile image
Jackoh

Words fail me! Both at 1 mg!! X💐

Koalajane profile image
Koalajane

My first thought was WHY? second was the same so I think you must ask this question. If you are as low as you are then there is no need unless it is for something else.

Good luck with this

PMRnewbie2017 profile image
PMRnewbie2017

My locum Rheumy wanted to something similar to me last month. He then gave me his version of a slow taper which would have killed me! Needless to say I ignored it because I am a great supporter of the 10% rule, then I caught Covid so all's been blown apart anyway.What is wrong with these people? Oh yeh I know, they've never had PMR, never had long term steroids, they may have read all the books but they weren't written by patients either! I think you should ask why and ask for evidence too.

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