What DMARD after Methotrexate?: Hi everyone I have... - NRAS

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What DMARD after Methotrexate?

Frankiefocus profile image
18 Replies

Hi everyone I have posted before about my weekly 15mg MTX injection and the side effects I am having (very dry mouth). I contacted my rheumy nurse and she said in her 35 years at her post she has never heard of this and did not give any advice at all. Last night I was up twice again drinking a pint of water. Bloods test done last week and no diabetes so I also have tinnitus thats getting worse so I will ask my rheumatologist to take me of this drug. What DMARD is usualy considered after MTX as I am allready on sulfa nad hydroxy?

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Frankiefocus
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18 Replies
Mickymoo profile image
Mickymoo

If dmards aren't working for you they may go down the biologic route. I was on methotrexate and my hair started thinning at the sides. I was still in pain too so I was switched to humira. This is a biologic treatment in form of an injection once a fortnight. My rheumatologist told me methotrexate is quite a toxic drug and can lead to various nasty side effects. Whereas others seem to tolerate it well. Suppose everyone is different! Hope this helps xx

oldtimer profile image
oldtimer

You can look up all the available treatments on :nras.org.uk/treatment

You could be offered leflunomide which works in a similar way to methotrexate as a drug which reduces all antibody production, or possibly, if you are eligible on the present rationing system, a biological treatment.

JFlay profile image
JFlay

Could it be the hydroxy causing the tinnitus? as it's a possible side effect. I already had tinnitus before I started on it 😕 but it's no worse.

Frankiefocus profile image
Frankiefocus in reply toJFlay

Yes I have had tinnitus for years but its getting loader since MTX so I will stop the hydroxy just to see if the tinnitus lowers.

Shouldn’t ask that question, we’re not supposed to give you an answer 😂

nomoreheels profile image
nomoreheels

I've been on MTX 10 years (injecting for 9) but it's never given me a dry mouth. Can I just ask if you're still taking an antihistamine as they give me a very dry mouth, which I have already because I take amitriptyline but it obviously worsened. My GP prescribed Biotène gel which helps, though did prescribe Salivix pastilles first which didn’t. Just thinking if MTX works or if it's needed to take with biologics should you go on to them it might be an option for you too.

Of the most commonly used DMARDs there's Leflunomide, it was the last one I tried after HCQ & SSZ failed.

Frankiefocus profile image
Frankiefocus in reply tonomoreheels

Yes I only took the antihistamine for 2 days, but the sleeping hours dry mouth is madness.

Is it possible you have Sjogren's Syndrome.? sjogrens.org/home/about-sjo...

bssa.uk.net/

Frankiefocus profile image
Frankiefocus in reply to

Could be I will ask my rheumy to check for that next visit

I’m on mtx and suffer with a dry mouth especially at night like you wake up constantly to have a drink . I also have dry eyes. I’m awaiting tests for Sjögren’s syndrome. I have been given a saliva spray it helps a bit.

Deniseelk profile image
Deniseelk

Interesting as i took Methotrexate ( oral) for 6 months whilst already taking Hydroxychloroquine but stopped as couldn’t tolerate the side effects ( one being dry mouth, dry eyes and lots of mouth ulcers) as my Rheumatologist agreed it wasn’t holding the disease ( I already had a destroyed wrist) I was approved for a bio similar Benepali) injection). If u feel the side effects out way the benefits of being on Methotrexate then speak to your Rheumatologist. Out of interest are you also on Folic Acid?

HevJ profile image
HevJ

I have remained on methotrexate however at a high dose I was still having major flares. As I had tried it in combo with 3 other meds which caused me to react they then put me forward for biologics. Best move ever!!! However I still have to take methotrexate (7.5mg injections). I was just on the biologic for a while due to my liver struggling however to fit in with the protocol I had to go back on methotrexate.

The only time I get so thirsty at night is if I have not drunk enough during the day (I know I need to have 2l or more). I would again push the system as I don’t think you should be feeling so thirsty all the time.???

Frankiefocus profile image
Frankiefocus in reply toHevJ

it must be sjogrens so I will inform my rheumatologist at next appointment, thank you for your reply.

Brushwork profile image
Brushwork

Do you also get dry eyes?

Ask about Sjogrens.... the dry mouth might not be relating to Mtx

Frankiefocus profile image
Frankiefocus in reply toBrushwork

Yes I wake up every morning at 2am and 4am to drink a pint of water.

I am exactly the same Frankie. I have always had a dry mouth and dry eyes but not nearly as bad as I have in recent years. I wake up in the night and have to keep having a drink of water all the time. I have been told I have "Sicca Syndrome". I was checked for Sjogrens and it was negative but the optician said my eyes were extremely dry and I have to use eye drops on and off all day and sometimes have to use them when I get up in the night for a drink of water.

I was told that dry eyes and mouth are yet another symptom of an auto-immune disease.

Lyneal profile image
Lyneal

I was 8n MXT injections for 4 years but came off it 6 months ago because of repeated infections, currently not on anything but feel I will have to return to it soon. Feel so much better without it because it is so toxic. But never had a dry mouth. May ask fir something different.

Well, I was on Methotrexate for 34 years and my hair started coming out in clumps a month ago. So my Rheumy started me on Arava today (another DMARD) since I’m not having any major flare ups; CBD takes care of that now. But I have a few mechanical pains and we needed to stop the progression of the RA. The Celebrex helps too. Good luck with the journey...

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