To take or not to take .Methotrexate .

[patriciawhite]

I see a lot about Methotrexate ,I taking it ,I am becoming very concerned about the side effects .What will happen if I stop taking it ,what exactly does it control .I have asked my GP ,( we never get the same one twice ) who responded exactly as I knew would be the case .See your Rheumatologist . I am not really sure about taking it or not .

[SnazzyD]

It’s rarely straightforward is it? Are you on it for just RA now? Apart from what you have read, is there anything else that makes you concerned about it?

[patriciawhite in reply to SnazzyD]

No Its just there is a very strong opinion against and that concerns me .I was put on this and the steroids were ruduced to nothing ,No steroids now but what I was wondering is . Should I now get off the Methotrexate or will I go back wards again .

[SnazzyD in reply to patriciawhite]

That’s a shame, sounds like you need a frank conversion with them where someone has an actual think. You could perhaps mention to the nurse that you’re seriously thinking of giving up which might put the wind up them enough to get an interim appointment.

[GerriMc in reply to patriciawhite]

Good for you, getting the steroids down to nothing. I’m on MTX and I definitely feel it helped me. I’m down to five mgs of Pred and my Rheumy said that as soon as I’m down to zero, I’ll start tapering the MTX. Which shouldn’t take too long provided everything is under control. Best of luck!

[SheffieldJane]

At present there really does seem to be scant evidence for Methotrexate’s efficacy in our conditions. It is supposed to enable a faster reduction of steroids, presumably by controlling some of the withdrawal symptoms. I would be interested to hear what your Rheumatologist has to say. Mine said that the Rheumatologist community would all rather take Methotrexate than Prednisalone. Personally, I do not feel confident about it, even though the very scary sounding side effects probably only occur in very high doses administered for diseases like cancer.

[patriciawhite in reply to SheffieldJane]

Yes thats the thing scary sounding side effects .I am not due to see the Rheumatologist for months now .I see them every 6 months but I will speak to the nurses they are very good .I have a constant allergy itch feeling ,Mouth throat ,Gums , All over sometimes .My GPs gave me antihistamines but they have had no effect .I have had x rays for different reasons on my chest and that is clear .Just concerned that I am taking something I could do without ,or would I be sorry later .Not altogether sure why I am on them ,It's just here, take these with little explanation other than we will reduce the steroids and replace them with these . So do I still need these ?

[Daisychain12 in reply to patriciawhite]

Patricia I hope so much you get some help with this. It is such a dilemma. I am not in a position to help unfortunately but I send you my love and support. Just don't let any of the doctors bully you. It is their privelige to help you and they get a lot of money for what they do. So please be as assertive as you can and get your questions answered. love and hugs. xx

[PMRpro Ambassador]

Your GP is quite right - he isn't able to decide to use it so just provides the testing and scripts. It is the rheumy who has the expert knowledge.

The strong opinion against methotrexate is mostly from people who have tried it and had problems with it or for whom it didn't make any difference. If you have managed to get off pred altogether I would imagine that your rheumy will, at some point, decide to try reducing the dose - provided he thinks that you only had PMR. But it is extremely unusual for mtx to replace pred - unless the patient actually had some form of inflammatory arthritis that looked like PMR. And I think you have to discuss that with him. You are being monitored for any of the potential problems with mtx - and I can only emphasise that no doctor will use a medication for which the benefits for the patient are outweighed by the risks. Many of the warnings apply for chemotherapy doses which are much much higher and you are on a low rheumatology dose, a dose that has been used for the last 40 years with overwhelmingly beneficial results for patients with RA as it prevents the joint damage progressing as it used to do, producing extremely deformed joints and severe disability. And these are FDA black box warnings, something that is often related to the possibility of later legal action by unhappy patients. The black box warnings mean no-one can say "I didn't know".

Another aspect of the use of mtx in PMR is that the clinical trial evidence is, at best, disputed. But many rheumies have used it in PMR patients and it has an effect on the immune system which allows many patients to manage on a lower dose of pred although it may not be massively lower and the one study that found the dose was lowered also found 5 years later when they did a follow-up survey that the there was no difference in the rate of side effects between patients on only pred and those who had taken mtx. Which does beg the question - what is the point?

I have tried mtx, it really didn't suit me, but I still say that on balance it may well be worth trying it and if it doesn't cause any adverse effects it may also reduce the pred dose or reduce the number of flares. If you are on both pred and mtx and stop the mtx there is a possibility of needing more pred again to prevent a flare. That is less likely for you maybe - but stopping the mtx suddenly, which is medically possible unlike with pred, might let your immune system out of the bag and the symptoms may return. You really need to ask the rheumy what his plans are.

[katiemills in reply to PMRpro]

Your posts are always so very helpful and your knowledge about the pros and cons of Methotrexate is second to none. I am under pressure from my rheumy to start taking it too.......

[patriciawhite in reply to PMRpro]

I have Rheumatiod and Osteo Atheritis now ,my Rheumy says I still need to be aware of PM as she calls it Polymyalgia Rheumatiod atheritis .Thanks for the advice I am beginning to realise that after all th advice on this forum ,Side effects are as you sat attributed to the higher doses as well .When I read them and just sort of take a ball park figure I need to look at the context and doses don't I ?

[PMRpro Ambassador in reply to patriciawhite]

If your rheumy thinks that what you have is not PMR after all but "rheumatoid arthritis with polymyalgic presentation" (as opposed to joint problems being the first sign) then methotrexate is the first line treament - and has been for over 30 years. That is why she is suggesting it and she would say the same if she had a patient with symptoms that suggested RA and RA alone.

[patriciawhite in reply to PMRpro]

Ah it wasn't explained like that I have been treated for PMR for years and I have had all the pain , flare ups ect . The steroids were with drawn and the MTX was introduced until there were no more steroids . It is just written down now as Polymyalgic Rheumatiod Atheritis .I tend to accept things without questioning .May be I should have a talk and see exactly . I assumed the Polymyalgia had morphed into RA . l have OA too but that is not their remit . I need to ask more questions don't I .My RA dept is very good and they are very helpful I just need to be more questioning I think .

[Hidden]

Hi Patricia

Give the Rheumatology Nurses a call on Monday, write down your questions & the issues with the itching etc

Is your Rheumatologist aware you have reached Zero on Pred? As they may then consider reducing your dose of MXT rather than simply stopping it, which they can do also, but by reducing it would be less of a change to the body.

My MXT had to be stopped because of high ALT Levels & for the first month l didn’t notice anything but September was awful when l was very aware of the withdrawal of MXT & my Blood Levels confirmed how l felt.

My best advice speak to the Rheumatology Team, mine were always brilliant & often my Consultant would call me back herself.

Let us know how you get on.

MrsN

[patriciawhite in reply to Hidden]

Yes I reached zero pred 6 months ago That,s one of the reasons I was wondering if this is a drug I stay on or can I reduce this one now . I will make an appointment and see the nurse clinician.

[Hidden in reply to patriciawhite]

Unfortunately the data sheets do cover MXT as a whole & as it’s still used as Chemotherapy the data can be a bit frightening.

But as you have RA as well they may want to keep you on MXT as it could be holding the RA at bay.

Sometimes we are between a Rock & a Hard Place as if it’s keeping the RA at bay you don’t want to rock the boat so to speak. I’ve certainly noticed the difference since I’ve been off it, l have the RA Factor but to date no actual signs it’s there.

A chat with the Rheumy Nurse sounds like a plan & let us know how you get on.

MrsN 🍀

[patriciawhite in reply to Hidden]

Will do and sorry that should have read I reached zero pred 6 months go .Corrected it now .

[Hidden in reply to patriciawhite]

Thought that’s what you meant 😉

[PMRpro Ambassador in reply to patriciawhite]

As I explained somewhere else - if the doctor thinks it is RA and not PMR she will be intending that you continue with the mtx. It is the first line medication for RA all over the world and has been for many years. If it doesn't work well or you develop side effects that you can't tolerate she may try something else, everyone is different and they have to find the right drug for YOU. But there is a long list these days that they work their way through - and they tend not to jump to further down the list for various reasons.

[patriciawhite in reply to PMRpro]

I think Its working OK no major side effects. I have read the side effects but now I see they are all covering for all sorts of doses not just my small one . Thanks for the input

[Hidden]

I was on this med first tablet was very unwell tried injections,was still unwell.I would never take it again,but we are all different and react to medicines differently too.I was fine when i stopped it no adverse effects.But it has taken a long time to recover from side effects.Good Luck.xx

[patriciawhite]

Thanks everyone for the advice .