Had to come off MTX. What next?

I have been off MTX since March due to chest infections one of which needed hospital admission and intravenous antibiotics. I have since had a CT scan on my lungs to see if my bronchiectasis which I have had since a child ( damage done through whooping cough ) has got any worse. Although there is a very small change in my lung condition the Chest consultant has recommended I do not resume taking MTX. I have an urgent appointment with my Rheumy next week as I am now beginning to flare in various joints to see what medication I can now take. I was thinking perhaps hydroxy but I have suspect glaucoma in one eye and at risk in the other so am worried that this medication will not suit me either. Does anyone have any suggestions of anything else that does not affect either lungs or eyes that I may be able to take as I am getting quite desperate with all the pain in my joints coming back.

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20 Replies

  • Don't know what drugs the doctor will suggest due to your physical health but I have had various DMARDS after MTX and was much better on all of them compared to the mtx. I hope you get your information soon regarding what treatment option your doctor and you decide x

    If you look on Nras website , there is lots of advice about DMARDs for you yo look at xxx

  • Just in case the website is nras.org.uk. Xx

  • I'm so sorry MTX had this affect & your current problems & do hope your Rheumy was aware of your pneumo history prior & requested thorough investigations prior to starting treatment. He is wise to discontinue it but it just goes to show we all react differently as MTX does it for me & has for nearly 5 years!

    I wouldn't have thought HCQ was the better option, again due to your existing condition as it's known to affect the eyes but as it's recommended testing is carried out before starting treatment your Rheumy will obviously be aware of this.

    You really need to have your Rheumy discuss the next option with you to make a fully I informed decision together as second guessing really isn't something we can do. He'll be able to determine & offer you the best course of action to help get you on the better side.

    I hope your next protocol works well with no issues of note.

    Let us know how you get on.

  • I stopped taking it in March, as well, after 9mos and no results. I was tired of feeling crappy, and decided to treat my Lupus with diet, instead, with the full support of my rheumy and PCP, both of whom are Indian women. I continued with my yoga practice , walking, and weight training, which has helped considerably. The diet I am on is an anti-inflammatory Paleo diet.

  • Recently gone back on HCQ. My rheumy said that the last recorded case it causing eye problems was in 1967! The doses used are smaller than they were in the past. Please ask the question but I am sure you will get reassurance.


  • hello scottishlad, what is HCQ? like to keep abreast of things. xx

  • It's Hydroxychloroquine. Clemmie

  • thank you Barrister. Rita

  • Thanks Cecil, that is very encouraging information as after researching the other alternative medications HCQ is the one that appeals to me. Of course I will have to be guided by my Rheumy but with reassurance and the appropriate eye tests I would feel happy to try it.


  • Hi Jean I was on hydroxy for years and saw an ophthalmologist annually to keep a check on my eyes. I never had a problem.

  • That's good to hear Kikideelili. Did you have any pre existing eye problems as it's the suspect glaucoma that is concerning me with hydroxy.


  • No I didn't Jean but hydroxy doesn't cause glaucoma to my knowledge although they always tested me for it. The main concern seemed to be colour blindness. I think I was on it for 7 years and never had any side effect in all that time.

  • That's great Kikideelili. It makes me more hopeful now that I can take it.


  • Granted, the figures are low but this rcophth.ac.uk/core/core_pic... differs.

  • Just read the link nomoreheels. Now I'm confused again as to whether HCQ will suit me. I think I will just have to try not to worry about it until next Tuesday when I see my Rheumy and see what he says. Unfortunately it's in my nature to research and take an active role in my treatment so I suppose I am my own worst enemy. God this RA is complicated!!


  • .... so are the medications unfortunately Jean & as with all medications, whatever they treat, there are good & bad reactions. Best to focus on the good & just be aware of the bad if any crop up. We need to do all we can to avoid the awful disfigurement & other risks & complications people didn't have the opportunity to before the meds our Specialist have access to nowadays were introduced.

    The link was actually a reply to Cecil relating to his Rheumy telling him that the last reported case of eye problems was in 1967, which as you read the link you see that isn't the case & I posted it more as a matter of accuracy really as it doesn't help to be ill informed. You will have seen though the incidences are low in comparison to the many people who have been treated with HCQ but have to be reported. It does prove the initial testing & yearly eye checks work & are necessary. It's unfortunate that the particular med refers to the one your considering but also worth being fully informed don't you think?

    If we all delved deep enough into any medication we're treated with any one of us would run a mile but the benefits always outweigh the bad for the majority otherwise they wouldn't be granted licences to treat our diseases & conditions. We all have to make informed choices & you're best speaking with you Rheumy on Tuesday about yours. Do let us know how it goes.

    Hope I didn't give you the wobbles & you understand my reason for posting the link.

  • It's okay nomoreheels you didn't give me the wobbles. I like to read everything I can about the treatments so I can, as you say, weigh up both the good and the bad and ask the right questions when I see my Rheumy. Will now just chill out about it and wait for Tuesday.

  • Oh good. I did reply directly under his post but it's not in line with it for some reason though I have been having some blips with the site since yesterday afternoon, actually since the bell appeared in the green box. I'd put it down to them working on updating the site.

    Have a good weekend. Have you given any thought to a diary? Hope you have at least a little less pain today & pleased you're going to chill, best thing you can do for yourself when in flare I believe. :)

  • You may do well on hydroxy, as I have been on it for at least six years or more. More importantly, I have glaucoma in both eyes. However, I use my eye drops each night and the glaucoma is well controlled. I also have eye exams every six months. Hopefully, this will help. Good luck.

  • Thanks for your reply juliette64. It's encouraging to hear you are doing well with hydroxy and gives me some reassurance that it can work even with existing eye conditions. I feel better about it now after reading your reply.


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