I Want to Stop Methotrexate

[Forest Walker]

My gastroenterologist would like to try increasing frequency of Humira to weekly, rather than every other week.  If the skin clears up, then we'll stay at weekly Humira.  If it gets worse, then we'll switch to Stelara (I think).  He had checked in with me via the online patient portal last week, and we had a brief exchange about this--nice since I don't have a co-pay for that communication.  Saved me $60 for an office visit co-pay.

I took the six oral tablets last Thursday; yet, my skin has increased itchiness and a few new patches have appeared since then.  I wonder how much is due to stress at coming to the decision to quit using MTX or if it's the MTX being less effective at this dosage (15mg).

I recall Fred's earlier advice on enjoying your life and try to keep stress low.  I tried the diet approach as diligently as the strictures in the small intestine would allow (I cannot tolerate much fiber), but going gluten free, eliminating added sugars didn't produce changes in my skin.  I think Fred's outlook on this is wise. 

It can be maddening.  But this forum is so very helpful.  The information, the support, the community--so good. 

So . . . my plan is to agree to weekly Humira, contact dermatologist who is covering for my doc while she's on maternity leave, and see how it goes.

I had an office visit with pulmonologist last week following an annual spirometry test.  He said that if/when I switch to Stelara (or away from Humira), he will order spirometry test every four months and see me in person afterward.  If I lose ground, we'll see it early and figure out what to do.  But he said continuing with Humira is best option for lungs since it's keeping a dangerous condition quiet, and he doesn't know how they will respond to changing away from it.

[jiml]

A good idea to go to weekly Humira if it currently isn't too effective. I have often wondered and I'm sorry if you have answered this before but why are you on humira and methotrexate as a combination, as my understanding is that either one of these should give you clearance. In my opinion using a combination you won't know which treatment is working

[Fred]

Good luck FW, I think your will be the first member to try it weekly so it will be interesting to follow.

Edit: Just seen Jim's post and I don't see the point in running both as like he says "you won't know which one is working"

[Caroline]

A good idea to go to weekly Humira if it currently isn't too effective. I have often wondered and I'm sorry if you have answered this before but why are you on humira and methotrexate as a combination, as my understanding is that either one of these should give you clearance. In my opinion using a combination you won't know which treatment is working

Jim … over here they do that also.
The reason they do it is that Humira very often leads to anti-bodies against it, so it will stop working, by giving mtx next to it, they want to suppress the forming of the anti-bodies.

Seen in that light it makes sense to give both….

[jiml]

A good idea to go to weekly Humira if it currently isn't too effective. I have often wondered and I'm sorry if you have answered this before but why are you on humira and methotrexate as a combination, as my understanding is that either one of these should give you clearance. In my opinion using a combination you won't know which treatment is working

Jim … over here they do that also.
The reason they do it is that Humira very often leads to anti-bodies against it, so it will stop working, by giving mtx next to it, they want to suppress the forming of the anti-bodies.

Seen in that light it makes sense to give both….

Thank you Caroline, so I didn't realise that

[KatT]

I have been on a combo since 2018, due to lupus. except for a change in March 2021 

2017 to August 2018 - biologics only = no improvements in psoriasis or arthritis
August 2018 - biologic and azathioprine = 100% clearance
March 2021- biologic and hydroxychloroquine = psoriasis came back with a vengeance
October 2021 - biologic and hydroxychloroquine and a very low dose of MTX (which I requested due to the psoriasis) = 95% clearance

I achieved 100% clearance very quickly the first time I was put on MTX at a higher dose than today (around 2014 I think - having a senior moment), no biologic.  Leflunomide also helped a lot.  The problem was that these treatments did not help with my arthritis.

Based on my experience (everyone is different), oral medication helped more with my psoriasis than the biologics.  And finally, I've found a biologic (Simponi) that helps with my arthritis although I have to take it every 3 weeks instead of 4.

All this to say, if you can`t withstand the MTX, you could:

1- try a lower dose of MTX
2- try another oral medication, there are other options
3- remain on Humira only (although that doesn`t seem to help at the moment - maybe it will if you can take it on a weekly basis.....time will tell)
4- switch to another biologic which entails risks due to your other conditions.

[Caroline]

I have been on a combo since 2018, due to lupus. except for a change in March 2021 

2017 to August 2018 - biologics only = no improvements in psoriasis or arthritis
August 2018 - biologic and azathioprine = 100% clearance
March 2021- biologic and hydroxychloroquine = psoriasis came back with a vengeance
October 2021 - biologic and hydroxychloroquine and a very low dose of MTX (which I requested due to the psoriasis) = 95% clearance

I achieved 100% clearance very quickly the first time I was put on MTX at a higher dose than today (around 2014 I think - having a senior moment), no biologic.  Leflunomide also helped a lot.  The problem was that these treatments did not help with my arthritis.

Based on my experience (everyone is different), oral medication helped more with my psoriasis than the biologics.  And finally, I've found a biologic (Simponi) that helps with my arthritis although I have to take it every 3 weeks instead of 4.

All this to say, if you can`t withstand the MTX, you could:

1- try a lower dose of MTX
2- try another oral medication, there are other options
3- remain on Humira only (although that doesn`t seem to help at the moment - maybe it will if you can take it on a weekly basis.....time will tell)
4- switch to another biologic which entails risks due to your other conditions.

Another statement that MTX doesn’t help with Psoriatic Arthritis, which is known here on the forum, but is not known with the rheumy’s, oddly enough.

So sad that you don’t have DMF, at least you could have tried it then. For the rest a nice set of advice.  Except for 3… why stay on it if it doesn’t help (anymore because of e.g. anti-bodies). A switch, to a different bio, might be better.

[KatT]

Staying on it as per the recommendations of doctors due to her conditions (crohn's and pulmonary) but increase the frequency could help with the psoriasis.  

As for DMF, my second appointment with my new rheumatologist is next week and I definitely plan to discuss this with her 

I believe she's from Roumania therefore I think she will have more knowledge on treatments offered in Europe.....anyway I hope!

[Caroline]

Staying on it as per the recommendations of doctors due to her conditions (crohn's and pulmonary) but increase the frequency could help with the psoriasis.  

As for DMF, my second appointment with my new rheumatologist is next week and I definitely plan to discuss this with her 

I believe she's from Roumania therefore I think she will have more knowledge on treatments offered in Europe.....anyway I hope!

Very interesting KatT !

[Caroline]

I have a poor memory it’s true and I haven’t documented this on here as it all came before I joined - but my memory is I had an issue with nausea on methotrexate, however it was the folic acid rather than the mtx that was making me nauseous so they reduced the days I had to take it or the dose and it improved a lot.

If you look up nausea and folic acid, it’s a common side effect..

I also use folic acid, for rebuilding some vitamines, but I don’t experience any nausea. While when I was on MTX, I felt my whole body resisting in a kind of a stress reaction.

Caroline, I don't remember how long you were on MTX.  Did it feel as though the whole body stress reaction intensified the longer you were on it?

Hi Forest,
I missed this one.
I have been about 8 weeks on MTX. An the longer I was on it the more I realised that it was very bad for my body. I felt my body cracking and crunching while I was using it.
And then I decided that I could better have the PsA than this with possible other damage to my body. So I stopped, said goodbye to my rheumy and went on searching in other directions. Later on, it took some time where I tried a diversity of alternative treatments with results varying from zero to amazing, I was tipped to a doctor who was an internist and I went to him. He gave me DMF, which gradually started to work and solved a lot of the Psoriatic Arthritis. He knew an awful lot about psoriasis and psa, and I learnt a lot from him. As an internist he has a completely different view on the cause and possible solutions/treatments of psoriasis.
Only over here on psoriasisclub in a post of Fred, I found out that MTX really does nothing for PsA, which fitted with my personal experiences. So that closed the book definitely for me.