Struggling with Methotrexate side effects

[HappyDiamonds]

GCA diagnosed a year ago this month, started on 60 Pred, bad flare end January when on 10mg so back up to 40mg (now 17.5) started MTX 5 weeks ago 15mg by self injection. First week fine with just tiredness next day, second week nausea and dizziness and feeling generally awful so advised to stop until blood test results. Bloods ok so restarted the following week, again first week fine, second week extreme dizziness, watery diarrhoea and generally unwell for 2/3 days. Hospital specialist nurse said to stop methotrexate and stay on Pred but after she contacted Rheumy suggested I gave my body a 2 week rest and then resume injections 10mg for 2 weeks then 12.5mg for 2 weeks and then back to 15mg with a view to increasing to 20 in time. So the question is has anybody managed to overcome similar side effects by either persevering or lowering the dose and starting again please? Would welcome any input as quite honestly Im not at all keen on only being able to function 4 days of each week for the next year or two. Meanwhile I am tapering steroid 2.5mg every 2 weeks until I get to 10 again and then 1mg a month after so if all goes well I will still be within the much hyped 2 years 🙄. Keep changing my mind, would prefer to lower Pred very slowly majority of time and then think well maybe I should persevere with Methotrexate. Very difficult being so ill with it when I live alone. My GP couldn't offer any advice, just said the Rheumy is the expert and everything is done for my best interest which I am sure is true but they haven't got to live with it!

Many thanks

[DorsetLady PMRGCAuk volunteer]

Have a look at these 2 posts written by MrsNails on her own experiences with MTX -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

The rheumy may be the expert - but I bet he has never taken mtx and experienced the less pleasant side of it! I read a study some months ago that said something like 1 in 3 rheumatology patients stop mtx because of adverse effects and a similar number because it doesn't help them. BUT, when rheumatologists were asked how good mtx was, they thought the discontinuation rate was very low so continued to use it and sing its praises!

I couldn't face feeling as I did any longer to see if it did improve - but I was barely functioning 5 days a week after a month - the fatigue was overwhelming. I never had any gut effects, it was the only thing I didn't have!

[MrsNails]

Hi HD Sorry not been around today, Painting Pots in the Garden 🪴

Firstly, how much water are you drinking on your MTX Day & what dose of Folic Acid are you taking?

Flushing the MTX through your system is very important as is Folic acid taken on the Six Non MTX Days really helps with side effects. There are however people who cannot take MXT but many of the side effects can be overcome.

When l started it, believe me it was no walk in the park but l persevered & got used to it. Now on Injections like yourself, which l find easier than messing with ten tiny tablets! I can & do get tired the following day but not excessively but l don’t plan anything for that day so l can just go with the flow.....

Wishing You Luck 🍀

MrsN

PS - in the August following starting in April l took a sudden wave of Nausea as l read the Special Menu for Dinner on the Ship (an equivalent of Our Master Chef) & for a full month l had nausea & basically ate Chicken Sandwiches but l was determined to ‘get on with MTX’ as l had serious Medical Issues caused by the Prednisolone, l was on 18mg of Prednisolone when l started MTX & got to 7.5mg Pred by reducing 1mg per month to 9mg & then by 0.5mg to 7.5mg......

It made a huge difference to me but as l always say that’s My Story & No Two People are the Same.

[HappyDiamonds]

Thanks team. First of all I feel really good at the moment, possibly the best I have been for about 18 months so it makes the couple of rough days seem worse. But its quite frightening holding on to the bed or wall because the room is spinning and then there is the sprint to the loo, believe me Usain Bolt would be proud of me.

Mrs N the hospital put me on just 1 5mg Folic Acid to start but increased that to 6 days the first time I got nausea, also I am drinking loads. Can cope with the tiredness and accept I can't do what I used to be able to do but the other side effects are not very pleasant. You have given me hope though that perseverance will pay off and I think I might try the reduced dose and see what happens. If i still suffer the same on 10mls its not for me. Hope you enjoyed your painting.

[MrsNails]

Hi, definitely try the reduced dose & see how you go from there & then at least you can say you tried!It’s not much fun but l knew l really didn’t have much choice, l was constantly out of breath, grossly overweight, unable to walk very far & GP thought l was heading for heart failure! It was really a make or break situation for me & luckily it worked......

I always took my tablets after lunch but now tend to have my injection around 11am

Garden is looking lovely, himself is building me a Rockery & l’m still Painting Pots 🧑🏻‍🎨 they were all blue (from our other house) and now they are red and/or black, l’ve still got plenty to do ❤️⛩🖤

[Sparky20]

I was put on methotrexate to enable me to come off the prednisolone I am down to 3mg preds now. So I will have to wait and see what happens

[Carver63]

just about 13 months into Ta (GCA) start at 60 mg went down too fast twice and had severe flareups Last one being Sept 2020. this third slide has been much slower and supplemented with Actemra injections. Actemra injections weekly since December (6 months) I have had some issues but been very good for last two months. link actemra.com/gca/taking-acte... I am now at 6mg Pred and will decrease 1 mg/ month. The TA has affected my eyesight so that is my number one concern right now. Over all with healthy diet, rest and exercise i am sliding at a good rate. I understand that a slower reduction rate for Pred is likely to cause less flareups and so am preparing to drag this out give my body a chance to heal. Stay healthy and try to enjoy this crazy ride.

[PMRpro Ambassador in reply to Carver63]

It is a different case for reducing when you are on Actemra/tociclizumab - but below 5mg you still need to go slowly in order for adrenal function to return.