Hubby's jolly doc went down with Covid and my GP rang instead to speak to hubby as they had found something bacterial in the sample I had to take in re the chronic diarrhea. ( seemingly that will have cleared by now anyway) I asked him if MTX had caused this and he said "well it certainly won't have helped!!" I told him that the rheumatology dept. had contacted me as they had been notified that hubby was in hospital etc and the rheumy nurse said that when he was better they would give him the MTX again but this time by injection as this would bypass his stomach and I think colon--or something--and he would not have these side effects. I asked her if it was worth taking MTX as he was only on 3mg pred a day now and had been much better after the vit B12 injections and could he not just continue to reduce steroid gradually. She said she knew he was on a low dose steroid but even low dose pred taken long term had really bad side effect---cataracts etc and so on . At the risk of alienating anyone on this website, and apologies before I type my next comment as I've just had 2 weeks of utter hell, my own view and also hubbys is that every doctor and every specialist on the planet wants to get you off steroids if at all possible and I cannot believe that they can all be wrong. They do spend years training and I do therefore feel that there must be something in this. Conversely, though I have just read somewhere on a health website that some expert has said that if you are on less than 5 mg a day its is probably not worth taking MTX.
Sorry for long rant but this has been 2 weeks of hell and Im doing my best to sort hubby out as he has just had enough and will do what the rheumy recommends.
Anyone had any experience /knowledge of MTX taken intravenously?
Thanks again folks.
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piggylovesgolf
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I should have added that the nurse said the decision was ours and we could think it over and when he was better and they had the results of the forthcoming synacthen (??) test--cant spell it we could decide
It isn't i.v. it is is subcutaneous jabs and can also have their own problems. The adverse effects do seem to be less though.
Prof Dasgupta told us about 18 months ago in a seminar that he often keeps patients on 2 to 3mg long term because it reduces the risk of relapses. Given HIS reputation - I'll take that as a reasonable approach even if I didn't agree wholeheartedly off my own bat. It is generally accepted that the adverse effects of such a low dose are minimal.
People develop cataracts any way - and what passibly happens is that the cataracts were already starting pre-pred but not yet visible, the pred makes them grow faster. I have been on pred for well over 12 years\, a lot of it at above 10mg - and only now have the first signs of cataracts forming.
I have close contact with 3 rheumies who are well up in the GCA/PMR world and none of them are paranoid about getting their patients off pred - they do like to get them to as low a dose as possible but admit that there is a sizable number who need to stick at low doses for some time, sometimes very long term. One previous Head of Medicine at the local hospital said to me once that once a patient was at 8mg he was happy to be patient - because that is a similar level of corticosteroid to the amount the body requires to function anyway in the form of cortisol. Less pred just means they body must make more cortisol - they are in a balance.
Obviously being off pred altogether is the ideal, but a low dose of pred has fewer long term adverse effects than adding in other immunosuppressant medications for which there is no guarantee that it will enable you to stop the pred altogether. Top immunologists express concern about the use of drugs like that as it has implications for the immune system long term.
Under normal circumstances I would accept the "the bacterial cause of the diarrhoea will have cleared by now" - but in your case, I would want to see a clear stool culture to conclude that is the case.
I do appreciate how you feel - but I will still say, at 3mg pred without the MTX that apparently resulted in this extended GI problem, I wouldn't be keen to restart. If he were at a highers dose, that might be a different matter, But he isn't.
Thank you very much indeed PMRpro for this detailed response. The rheumatologist we saw was Mr Bukhari who appears to be well regarded throughout the rheumy world. He is head of the team here but we saw a team member---must say he was very thorough and did loads of tests. Sorry for the incorrect grammar!!! I did know the correct word wasn't intravenously but I knew it was some sort of a jab!!! The nurse who mentioned this had said when I mentioned he was going in next monday for this synacthen test " oh that will be interesting and we can see then how his adrenal glands are working". She had said she would call us in 3 weeks to see how he was getting on as he was clearly quite poorly. I just wish I didn't have to make this decision. I'm frightened of saying don't take this stuff and it being the wrong decision. if only we could just go to an "expert" and be told the "right" thing to do. But I guess thats life!!!!Thanks again for such a speedy response
I don't think anyone would agree on the "right" thing to do, ask any 3 and get 5 answers! Big in the rheumatology world in general maybe, I assume it is the guy at Morecambe who is editor in chief at Rheumatology? But most of them seem to treat PMR as a poor relation and remain under the impression it is a simple and easy to manage, relatively short lived problem. Those who are closely involved in the PMR/GCA research sphere are only too aware now that that is a long way from the truth and are far more relaxed about tapering and when to change things.
A study a couple of years ago found that the majority of rheumies held the opinion that there were no problems with adverse effects or poor efficacy of MTX and that it was well tolerated by patients. Interviews with patients and checking their medical records actually found that more than a third of patients stopped MTX because of adverse effects that they couldn't tolerate. About a third stopped because it simply didn't work for them (mostly RA it must be said) which leaves a third of patients being happy campers. Which isn't a particularly good testimonial is it?
Given how unwell he is currently - I would counsel waiting until he is well again before even thinking of adding the MTX into the mix. Otherwise you can't work out what's what.
Many thanks again P. More studying for me then!!! Must add that the rheumy nurse did say wait till he is completely well before starting or thinking about starting and she will ring in 3 weeks just to see how he is which seemed very nice of her. And yes. It is Mr Bukhari at morecambe although we see him at Lancaster.
I have Metoject MTX 25mg it’s not Intravenous but an Auto Injector which you inject into your leg or stomach. It bypasses the Gastric track thereby not causing any issues such as nausea.
Thanks Mrs Nails. I did realise I was using the wrong word and it was some sort of a jab with a pen or something but was too lazy to find the correct word. What you have said is just what the rheumy nurse said---will see how things go as we have a few weeks before any decision has to be made.
It’s complicated sometimes especially when you’ve had so much in your mind. It’s essential that your husband keeps having a stool sample until it’s clear, did they say what it was? I’ve been on MTX a long time & Pred even longer but if l was down to 3mg of Pred l wouldn’t particularly want to start it - but if l ever get to 3mg l would be disinclined to stop the MTX
I’m not the expert here but just want to say you sound like you have had it up to there and no offence will be taken I’m sure. Sounds like piggylovesgolf really needs just that and no hassle for a bit! The difficult thing about Pred is the diffuse collective fear of it and as yet I have not been able to get any doc to give me a scientific basis for low doses being damaging other than cataracts. More experienced or perhaps more realistic Rheumys have no problem with low doses, it appears. Also, there seems to be a blind spot with diagnosing other drugs with severe side effects for enough people to be a little cautious and perhaps not blast Pred without any context in which to frame it.
Thanks Snazzy. This little piggy did manage to get in 2- 9 hole rounds this week as hubby insisted I went off and met up with my mates and took a break. Did me a power of good and I came home refreshed!!! Following the advice of a friends daughter who is something in the pharmacy world I asked my local pharmacist for his opinion. He gave me quite a detailed explanation etc and his advice was to try the MTX in injection form which he said was becoming more prevalent now and see how that went. He also confirmed that it would bypass the gastric system and not cause this nausea/diarrhea. He said that steroids do lower immune system etc and if you can get off them to do so. When I pointed out that I'd read if you were on less than 5mg a day there was no real benefit his response was---and this is my wording as I cant remember the exact words but basically he was saying as a last resort to stay on the pred if all else fails. I think I am happy in my own mind now for him to go ahead when he is well enough and he has just said he just does not want to go on like this, feeling ill and missing out on chunks of his life and would prefer to try this other MTX method and see how that goes.I am however, very grateful to you all for your responses which has settled my mind somewhat.
No doubt I will be posting again a a month or so when all hell breaks loose again!!! But hope springs eternal!!
Information and Tips for people with PMR and/or GCA from Professor Bhaskar Dasgupta’s talks in Cardiff and Bristol on 24 May 2019
Bhaskhar Dasgupta.
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10. In my experience Methotrexate is not as effective in treating PMR or GCA as it is for rheumatoid arthritis although some trials have shown a small beneficial effect. Leflunomide, based on open case experience, is often more effective as a steroid sparing medication for treating both GCA and PMR. We are searching for resources to conduct high quality trials with leflunomide. Such a trial in PMR is running in Netherlands.
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