Inflammatory conditions PMR etc . Slightly higher dose of pred or MTX , benefits V Side-effects

[Gaz227]

Hi All , I posted on here a while back that I on my rheumatologists advice I was to give MTX a go , been on pred 7 yrs can’t get below 3mg . Thought I would let people know what is going on incase you try this path , Well I’m 5 months in 7.5mg injections, don’t feel any benefit from the MTX , what I am noticing is a very sore mouth (I am taking folic acid the day after injection) , headaches , crazy fatigue , the plan was to slowly reduce the pred hopefully getting off it . 3 weeks a go I got down to 3 Mg again (about the 50th time of trying ) and bang everything went pear shaped again . Stayed with it for 2 weeks of agony incase it was steroid withdrawal but last week I had enough and increased to 5mg , I did call rheumatology for advise but no reply as yet , I’m now on 4mg and the pain and other symptoms seem to have levelled out at a bearable level . I left a message on there help line saying I am not taking MTX anymore until I have seen the Rheumy . Last thing I wanted was to be stuck on 2 potentially toxic drugs and it was going that way so I pulled out , I guess in about 6 weeks I will know if the MTX was actually doing anything once it’s out of my system , I feel more and more like I have an adrenal issue when reducing down to 3mg, I haven’t had any joy telling this to my medical team both at the GP’s and the hospital . Thinking about contacting a private company as it seems that’s the only way I will know for sure , another point the MTX wasn’t just given as a sparing drug I do have other issues , with osteoarthritis and suspected SAPHO syndrome but to be honest I’m beginning to wonder about SAPHO as I have none of the skin conditions or bone swellings just sternum and clavicle pain . I was just wondering if I am doing the right thing by pulling out of the MTX injections , without advice from the medical people it’s such a dilemma . Any words of advice would be appreciated . 👍

[Gaz227]

Literally as posted this thread my house phone rang out , it was the help line , not much advise to be honest , but managed to arrange an appointment to see Rheumy late August , I told the nurse I’m not taking the MTX till I have seen him , I guess by late august I will know if the MTX was doing anything, plus I do have a supply of it if required 👍

[PMRpro Ambassador]

Of course the only way you can find out if it is doing anything is by stopping - but if after 5 months you haven't been able to reduce further you probably won't. However - if it is good enough for Prof Dasgupta to tell us he often keeps patients at 2-3mg long term, surely it should be good enough for anyone? My own rheumy here says that he has plenty of patients who need pred for a long time like me - the difference is that most of them are at less than 5mg and he finds that acceptable. I think it is crackers to give MTX to someone who is at such a low dose unless they are repeatedly flaring there - but that is usually because the doctor is forcing them to reduce.

Your sore mouth is almost certainly because you need more folic acid - some patients need up to 6x5mg a week.

MTX can enhance so-called pred adverse effects - pred can cause headache, not sure if MTX alone does but just looked and it is often complained about. It caused me overwhelming fatigue - by week 4 I could barely put one foot in front of the other and I felt worse with joint and muscle pain etc than I did with unmanaged PMR. That is hardly the idea ...

[Gaz227 in reply to PMRpro]

When I saw Dr Hughes a few years back he said you might find you will be on 5 Mg of pred for The rest of your life , I started pred when I was 55 , that was why Dr Kattack wanted me to get off pred , he said if I was close to 80 he would leave me on pred but not when I started it in mid 50’s.

[PMRpro Ambassador in reply to Gaz227]

I was only 57 when I started pred - and I would happily take 5mg forever but have needed 15 and more just to be able to function in the last 2 years. My rheumy is only expecting me to get to 5mg even with tocilizumab/Actemra. Seem to be functioning well at 14mg at present, already 5mg down on where I was.

[Gaz227 in reply to PMRpro]

I’m slowly coming to terms with it , but I’m very stubborn and keep searching for other alternative treatments to keep me doing my martial arts classes , which I have for over 40 years and have no intentions of stopping any time soon,

[PMRpro Ambassador in reply to Gaz227]

I see no reason why long term 5mg shouldn't do just that - but there aren't real alternatives to pred. Unless you are one of the small minority who respond to MTX and don't have any adverse effects.

[Nextoneplease in reply to PMRpro]

That’s excellent news pro, hope it continues well x

[piglette]

Going privately basically lets you jump the queue and you might be offered a coffee in the waiting room. The person you see will probably work for the NHS as well, unless they are pretty old and have had to retire. I don’t know if you are having adrenal problems. The symptoms are pretty different to having a flare I found.

[Gaz227 in reply to piglette]

I was told about a company called Transformnow.co.uk they are local to me also , they can do all the tests bloods , hormones , adrenal etc depending on findings can refer you to NHS , the chap that owns the company was a leading spinal consultant at the QE in Birmingham,

[piglette in reply to Gaz227]

There are quite a lot of companies that do that. A friend spends a fortune on getting tests. I feel that I will use the NHS if I can, having spent a fortune on blood tests when I went to see a private rheumy. There are quite a lot of entrepreneurial doctors around. One of our GPs has set up a private practice doing various tests etc.

[PMRpro Ambassador in reply to piglette]

No wonder he's never in the NHS practice ...

[piglette in reply to PMRpro]

Exactly, everyone is complaining

[SheffieldJane]

I appreciate your adding to the sum of our knowledge Gaz. It is hard to know what to do at this stage.

[Gaz227 in reply to SheffieldJane]

It really is , I would be happy with a definitive diagnosis , when I ask the Rheumy all I get is it’s possibly this or that . He still insists PMR was my base auto immune illness the others seem to be just along for the ride .