Two weeks ago I was put on 20mg Methatrexate for Sjorgens syndrome/PMR but really had a bad reaction. Spoke to the pharmacist and she sent me off to the GP as she said I was suffering Methatrexate toxicity, so i did not take the next weekly dose, got an appointnent to see rheumatologist in April.
I have been told about another drug hydroxychloroquine, would this one be better according to anyones experience? Or any other advice....I am new to this all ...since July 2023.
I have only been taking prednesolone and busy decreasing dosage, was on 60mg because of GCA, I am down to 30mg
Thank you in advance of the experience of this group.
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Den73
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hi, the doctor said I will be on this as well so I would be interested to find out too. Hopefully we get to find out. Good luck in your quest to get better.
There are one or two people in this forum on hydroxychloroquine - it is rarely used for PMR or GCA, Sjoegrens can't be cured - it is all down to symptom management so it is a case of trying and seeing what works for you.
The main point about hydroxy is that you need to have a baseline eye assessment and annual checks thereafter. The main, though rare, adverse effect with hydroxy affects the eyes and can happen at any time so longterm monitoring is essential - and don't let any doctor persuade you otherwise. Someone in the lupus forum had it suddenly manifest after some years on it.
Thank you PMRpro for your very helpful advice.I already have have sore dry eyes so was wondering about that, something I will really have to discuss with the rheumatologist dont know what else they can use instead of hydroxychloroquine?
I wonder if you started straight on 20 mg MTX? That sounds strange and might be the reason for your reaction. Here in Denmark, we start on 7.5 mg and then increase every 2 weeks until 20 mg - to avoid side effects. I am fine on 20 mg, but at 25 mg, I get a blurred head and have a lot of nausea. I hope you find a way
Thank you krillemy, that is what I thought the dose was way too high..hoing to discuss all thst with him when I see him. Thank you for your vety useful comments. Xx
It wasn't really that it was far too high a dose but some people do much better by titrating the dose upwards from a low starting dose as it seems to reduce the reaction the body has to the drug being introduced. Most doctors in the UK do seem to dive in with 15 and even 20mg right from the start.
Thank you PMRpro ...everyone us so fifferent when it comes to different drugs, I do tend to be a bit more sensitive thats why I queried the dose, it seemed to maje more sense to start lower and increase, I think he will take that on board now.Thank you xx
I tried it after I refused mtx. They should do a chest xray before starting it and do regular liver tests. It takes 3 months to kick in. I was on it two month with my liver numbers drastically and steadily rising at which point I opted to stop taking it. It did seem to help a little and enabled me to get from 9 to 7.5 on the prednisone. But I had to come off it so no way to know if it would have fully replaced the prednisone for me.
The hudroxy… I think they want to ensure you don’t have any infection before you start on it. But I am in the US and sometimes things are different here.
Hi Den, I have been on Hydroxy for 8 months and have no side effects at all. I am also on predisilone for PMR and also have Sjorns syndrome which I manage with eye drops and a dry mouth spray.
Hi Wonderfullifeandmore for your reply. I am going to suggest I am given Hydroxy, what dose are you on?I am also on Predisilone at the moment 35mg reducing 2.5mg each week, which is working well, so by the time i see the rheumatologist on 10 April I will be down to a more reasonable dose.
Which eye drops are you using, my eyes are my biggest issue now, I am using ClinOptic HA,initially it helped but doesnt seem to be helping now and of course fatigue, do you fi d thst Hydroxy gas helped the fatigue issue?
Been quite an uphill battle as has for all I am sure.
hi Den73, so sorry for the delay in replying, I have been having issues with my internet. In answer to your questions. I am taking 400mg daily of hydroxy which suits me fine. I am also currently down to 4.5mg of Predisolone. The eye drops prescribed for me are Xailin plus.0.2% HA
As for the fatigue I find it hits me most in the evenings. I hope you are feeling a bit better.
Hi Wonderfullifeandmore thank you for your reply.Did you start uour dose on 400mg hydroxychloroquine, I am, as I said in the reduction process with Pred down to 27.5mg when I see rheuamy.
The eye drops I am using is Cli HAnoptic,I shall request Xailin thank you very much.
The fatigue sadly is affecting me all day, probably to do with the reducing, I am reducing by 2.5mg per week till down to 15mg then 2.5 fot 28 days and see how low I can get it to.....other than the fatigue and sore eyes and some nausea on certain days it seems to be working better than previous tries.
Thank you your info has helped me for when I see him. Xxx
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