unbearable nausea, diarrhoea and stomach pain

[Firstviolin]

I was taken off Ro-Actemeravabout 2 months ago when I was tapering to 7.5mg pred and had some stiffness and pain. Six weeks ago I was switched to Methotrexate. I am now down to 5mg pred per day but since the first dose of MTX I have been suffering more and more from the above symptoms. Did anyone else find MTX intolerable?

[PMRpro Ambassador]

That is a not uncommon response to MTX. Sometimes taking it as the injection form relieves the gastrointestinal issues so do discuss it with your doctor. And now you are on MTX instead of Actemra, don't rush the tapering. Take it steadily, MTX may not be as efficient as the Actemra.

[Firstviolin in reply to PMRpro]

Oh thank you! I have emailed my rheumatologist to ask if he has any ideas. He might prescribe the injections instead. And if not I will ask him! When he took me off the Ro-Actmera he suggested that I might have "an inflammatory rheumatic condition" - the implication being that it might not be PMR, but to be honest I thin I have classic PMR!

[PMRpro Ambassador in reply to Firstviolin]

Er - PMR IS an inflammatory rheumatic condition. And did the Actemra work? It is also used in inflammatory arthritis - you use the medication that works, In PMR there is only a choice of one or two. In other arthritides there is a much wider choice.

[Firstviolin in reply to PMRpro]

I was only on the Actemera for 5 weeks. I had two interruptions because of having to have an antibiotic and having to go for a procedure - re the prolapse. Then after only five doses when the rheumy reduced the deltacortil to 7.5mg I got stiff and sore again, so he decided that the Actemera was not working. I would love to try it again and give it another chance. And I can get that free here for as long as I need it. After consulting on here, I am strongly thinking of ask the GP to refer me to someone at St James hospital where I might get more informed help.

[PMRpro Ambassador in reply to Firstviolin]

You hadn't been on it long enough - AND it had been interrupted. My rheumy told me it could take up to 2 months to start to have enough effect to allow reduction of pred and it could be longer. It beats me what makes them think any of the so-called steroid-sparers work instantly. Only pred works really quickly and in some patients it can still be a few weeks. I really suspect that most rheumies in private practice are simply out of touch - too busy seeing patients to earn a crust that they don't make time to keep up with developments in their field. Plus PMR is not a big part of their interest - most of their patients will have an inflammatory arthritis and they are different. And to drop to 7.5mg this soon is crazy.

[PurpleDanza in reply to PMRpro]

I am on Methotrexate and Actemra. It too the Actemra 12 weeks to work, but then I’ve just had a 6week break due to delivery problems so it’s taking time to kick in again, but it really worked for me up till the break.

[PurpleDanza in reply to PurpleDanza]

Also I was prescribed Folic acid for the nausea and it did help. MTX depletes your Folic Acid. I took 1 tab 6 days a week - not the same day as you take MTX - I’m on 1tab a week now the nausea has subsided.

[Firstviolin in reply to PurpleDanza]

I take 2 Folic Acid tablets the day after the MTX but it doesn't seem to help the symptoms.

[Rugger in reply to Firstviolin]

Like PurpleDanza I took Folic acid on 6 days a week, only missing the day I took the MTX. Maybe that might help?

[piglette]

Nausea is a known side effect from Methotrexate and some people are intolerant to it. I should talk to your doctor about it. This NHS document gives some idea of methotrexate side effects. nhs.uk/medicines/methotrexa...

[Firstviolin in reply to piglette]

I talked to my GP about it and she gave me a referral to a gastroenterologist - I got an appointment in October!! I don't think she is very familiar with PMR. You really have to be your own researcher on this journey! Thank goodness for this forum! Thank you for all the help. I read the posts every morning and I find lots of useful pieces of information in them.

[PMRpro Ambassador in reply to Firstviolin]

If you are on MTX and suffering nausea etc it isn't a gastroenterologist you need - it is the rheumy supervising the MTX. Doh ...

Have you got a rheumy Helpline number? You should have contact details for a specialist rheumy nurse if you are on MTX.

[Firstviolin in reply to PMRpro]

I will have to ask about that. It was not mentioned. I live in the south Ireland so maybe it is different here. I will certainly ask my consultant. Thank you! I am currently search for a new GP - VERY difficult in the present climate! But I will persist.

[PMRpro Ambassador in reply to Firstviolin]

Not surprised you are looking for a replacement - she sounds a few sandwiches short of a picnic when it comes to joined up thinking!!!!

[Firstviolin in reply to PMRpro]

I just discovered that they have a very comprehensive service at St James Hopspital in Dublin, where I live, but you have to be a patient to avail. My rheumatologist is one I consult privately adn he.has never mentioned any supports. I usually email him, or arrange a phone call - which cost €160 for 10 minutes . I will enquire more if I can access any support service through him.

[PMRpro Ambassador in reply to Firstviolin]

Why are you not under the St James hospital? Your current rheumy just sounds like a cash register!!!!

[Firstviolin in reply to PMRpro]

Our Health System here is complicated. If you want a public appointment it can take literally years. I attend a public hospital for a prolapse issue and I am waiting 9 months for an urgent return appointment !! However, once you get in to the public system there are lots more supports available. But I will follow that up with my consultant.

[PMRpro Ambassador in reply to Firstviolin]

No different in the UK. But always worth starting the process of referral in the state system.

[tangocharlie in reply to Firstviolin]

You shouldn't have to be dealing with all this privately! If i were you I'd go back to my GP and ask for a referral to the rheumatology service. You need some joined-up thinking not having to fathom it all out for yourself. I knw some people on the Sterling trail looking into whether methotrexate works and they have had the symptoms you describe and had to stop taking it.

But thank goodness for this forum eh when you are stuck and don't know what to do for the best, I was in that situation many years ago.

[piglette in reply to Firstviolin]

There is an amazing lack of knowledge amongst some medical professionals regarding PMR and GCA. Also on many drugs too. On the other hand there are the few jewels around.

[tangocharlie in reply to Firstviolin]

Few doctors, even rheumatologists, are familiar with PMR and therein lies our first battle. We assume they know what they're doing and they probably think they know what they're doing and have the best intentions, but as it's pretty rare disease they very rarely see it. If they hear hooves they assume it's a horse but it could be a zebra .... I've learned to question EVERYTHING

[tangocharlie]

I've tried it twice now. Once about 10 years ago hte tablet form and then about 2 years ago I think the injections. Both times I had horrendous gut problems as you describe. I also found I was wiped out for a few days after the injection, no energy, high fatigue etc. So I decided not to continue with it.

[Firstviolin in reply to tangocharlie]

Oh dear. Maybe the injections would not be an improvement. I have read on a Vasculitis site which includes some information on PMR that steroids can cause the same issues. That is the problem. Is it the steroids or the MTX? I would love to have a professional that I could discuss these things with.

[PMRpro Ambassador in reply to Firstviolin]

You were on pred before though? Alongside the Actemra? It is very unusual for pred to cause such issues - common for MTX though. And you can stop the MTX to see if that is the problem - steroids are not so easy to stop.

[Firstviolin in reply to PMRpro]

Agree totally! I have only been on pred since last April - before that it was treatment for Rotator Cuff damage and then Frozen Shoulder! The usual! And I went on the Actemera about a month after I started the pred. I have diverticulosis and a dodgy stomach for a long time. I mentioned that to the rheumy ut he dismissed it. So I am going to call St James's hospital and see how I could go about getting referred to there. Thank you all!!

[tangocharlie in reply to Firstviolin]

I doubt steroids are the problem as I've not come across others saying they had that problem, but you must remember to protect your stomach by taking them with food, or in gastro-resistant capsule or some kind of stomach protector medication. Warning though, doctors usual prescribe Omeprazole or something similar as a stomach-protector, but that in itself can cause gastro problems. Look at all options and make the best choice for you.

[tangocharlie]

Another useful tip, keep a food and symptoms diary to see if you can spot any patterns or clues for the gastro issues. Years ago I did. I started with a fast then just ate some simple foods I knew were safe and then experimented introducing diffeent things one at a time. That way I discovered all sorts of trigger foods. I'd keep the gastro appointment anyway and go with a list of questions!

[AgedCrone]

Yes Methotrexate doesn’t suit everybody……you should speak to your rheumatologist or your GP straight away…..& explain your position. In the meantime, do try to drink plenty of water so that you don’t get dehydrated.

Do get some advice as soon as possible.

[Magster54]

I was on MTX for 4 months. My inflammation levels did reduce but I found the side effects exactly as you describe, and intolerable, much worse than having PMR. I made the decision (along with my rheumy ) to stop taking it and continue my pred taper, even though it would take a lot longer.

[Firstviolin in reply to Magster54]

Thank you! I am actually thinking of asking my rheumy to put me back on Actemera. I had no side effects from it, but when I dropped 2.5 mg pred in one go, the pain and stiffness came back and the rheumy decided that the Actemera was not working, and took me off it after only 6 doses. So I would like to give it another go adn if he doesn't agree to that, I think I will suggest going with just pred. As I was down to 7.5mg - and have just gone back up to that today and I am doing fine - I think it would be reasonable to taper slowly from there. As well as pursuing the hospital route as suggested by tother experts here, which I will set in train on Monday .

[Magster54 in reply to Firstviolin]

I would do the same. I wish you luck, as it really is trial and error. You've struck gold finding this website.