Methotexate

[Nonemmett]

Since being diagnosed with polymyalgia last March I have been struggling with prednisolone as I have dreadful side effects. My consultant has finally admitted that pred is not for me as I have now developed diabetes & the only dose that allieviates the symptoms is too high for me to function on a daily basis.

Today I had an injection of somethibg which will last for 3 weeks & allow me to drop my steroids to 5mg a day. I also start methotrexate and folic acid this week.

I am very scared of all the side effects - what do people suggest to mitigate them. I also have fibromyalgia, a fatty liver caused by diabetes & I'm waiting for my gall bladder to be removed.

Please tell me there's hope. I didn't have much faith in my consultant but today he was really good & spent a ling time talkibg me through everything

[Hidden]

There is always hope but it seems out of reach at times. First I will tell you that I will stay on prednisone because as awful as all my side effects are it still outweighs the debilitating pain. At 16mgs now.

My side effects from Methotrexate was HORRIFIC. It made me so sick I gained 60 lbs on it and truly felt I was dying.

I would list all my side effects but it depresses me cuz I have them all... Just got the pre-diabetes diagnosis. That one threw me .....but with each other's help and support we can work thru it.

Please understand each person is different. I have GCA n PMR and I am super sensitive to drugs. So before taking methotrexate understand there has been no clinical studies at least in my search this is true and the one study I did find showed it did nothing. It is for RA.

The one side effect I know we can do is to eat better and get off the weight.

My large weight gain Is what I now see as causing me other issues.

I only knee jerked and had to write because of the methotrexate it really is nasty....

Lucky for you the well informed will be along soon.....

God bless

Linda

[Nonemmett in reply to Hidden]

Thanks Linda - my brother has been on methotrexate for about 4 years now for another condition so I have seen the side effects.

However, I am struggling with the steroids and am willing to give it a try...

[Hidden]

Hello Nonemmett

I'm so sorry to read of all your difficulties, it must be very frightening for you.

I'm now on Methotrexate for the second time, as a steroid sparer, l'd been on high doses of Pred due to flares which caused me high blood pressure, stress on my lung capacity & a huge increase in weight.

I was on 20mg of Pred when my new Rheumatologist started me on Methotrexate, l was fine for four weeks when I developed nausea, l was prescribed an anti emetic, which helped & tried taking it at night, l was offered the injectable form but declined & after about a month the nausea passed. For info this was only on the day I took it.

I reduced 1mg of Pred per month & as l got to 10mg the weight just melted away, the day my trousers fell down (at home, luckily) l cried with joy!

I did get to 7mg when sadly the excellent reduction got interrupted by a diagnosis of Breast Cancer & all that entails so the Methotrexate was stopped for Surgery & Chemo.

After the Chemo finished the PMR remained in check as I reduced to 5mg however in August last year it started showing all the hallmarks of a flare, my GP & I agreed on an increase to 7mg but after a month we decided l need to see the Rheumatologist again & as a result l'm back on Methotrexate again, with no issues but I cannot face any huge increase in the steroids again, so fingers crossed that it'll help get me through.

Sorry for all that but wanted you to understand where I was coming from

My Tips for Methotrexate

Choose a day that suits you when you haven't got to rush around

Have a light lunch & take them after that plus drink plenty of water

On that day don't cook anything for your evening meal that might cause you to feel nauseous, such as curry or fish, I used to get my husband to cook meat n fish on the BBQ but obviously not in January!

Make sure you take your Folic Acid on the other six days.

Truthfully, l was extremely apprehensive about taking it the first time but it did its job in my case, that's why I had no issues about taking it again.

Are they wanting you off Prednisolone completely? I hope the injection he's given you helps, PMRpro will probably know what it is & will offer you some advice I'm sure, do you go back to see him again in three weeks?

My Very Best Wishes

Mrs N 🍀

PS You must always go for your monthly blood tests too

[Nonemmett in reply to Hidden]

Hi Mrs N - I don't work on a Friday so am planning to start the pills tomorrow night (although I have a 4.5 hour drive to cornwall on Friday so that could be interesting!) I have been told to take folic acid only once a week - the day after the methotrexate? You recommend the rest of the week too?

I am hoping it will help me survive on a lower dose of pred as the pred manages the pain but only on a much higher dose which affects me mentally and has also caused the diabetes and subsequently the liver problem.

I am sorry to hear about your breast cancer - I hope you are in recovery and that the methotrexate works as well for you this time.

Best wishes

Maggie

[Hidden in reply to Nonemmett]

Hi Maggie

I think different Consultants have differing views on the Folic Acid so I'd stick with what your Consultant recommends.

Good Luck 🍀 with your reduction & l hope everything goes well.

I'm doing well Post Chemo apart from some long term knee pain from one of the drugs.

Let us know how you get on

Angela x

[Polywotsit PMRGCAuk team member]

Hi - I am wondering whether the injection might have been tocilizumab. It acts directly on the source of the inflammation, rather than the inflammation itself. This means that it is more 'specific' than steroids, which act on the whole body. I don't have personal experience of taking methotrexate. However, doctors on the international working groups on GCA and PMR are of the view that, if methotrexate doesn't suit you, you will know about it straight away, and you can come off straight away. Whereas, with steroids, the side effects accumulate over time, and you can't come straight off it.

Hope this helps set your mind at rest a little!

[PMRpro Ambassador]

I imagine the injection is also a corticosteroid in depot form - it will release slowly over the next 3 weeks with steadily less each day.

I appreciate the problems with pred - but "finally admitted that pred is not for me" seems a strange thing to say. Pred is the only drug that manages PMR and methotrexate is not an answer to PMR. In some patients it may allow them to manage on a lower dose, it can potentiate the effect of the pred in the body so you get the same effect for a lower dose, However - it does NOT work for everyone. Personally, I think that the people for whom it works don't have PMR or don't have only PMR. PMR is a presenting clinical picture for several other illness where MTX would work - such as other forms of inflammatory arthritis. That may be at the back of his mind.

What dose can you not reduce below? It took me four years to get below 10mg! And when I was switched to methylprednisolone it gave me loads of side effects but didn't relieve the PMR symptoms even at 20mg - I had had no such problems while taking prednisolone and have even fewer now I am on prednisone in the form of Lodotra. Different people react differently to different forms of corticosteroid so that might also be an approach - the injection will be a different form and injections are now suggested as a way of managing PMR.

However, whatever, good luck and I do hope the MTX works for you.

[Nonemmett in reply to PMRpro]

That is the injection - has allowed me to halve my pred quickly whilst the MTX starts it's work.

The problem for me with pred is that the pain is controlled but at a high dose and that causes me issues with my mental wellbeing which is proving very difficult to manage - in fact at the dose that controls the symptoms (20mg) I cannot function on a daily basis - last time I & my husband thought I was going to be sectioned as I was so agitated. I have never suffered from mental health issues before and so it is very scary for me. As soon as we try to reduce, all the pain comes back. It doesn't help having fibro as well, although that is a different pain to the PMR.

My specialist is hoping to get me down to 5mg a day on the MTX and see whether this will help control the symptoms. I can cope with a lot of the side effects of the pred but not the mental health issues hence why we are trying a different route - if it doesn't work, I will come off it and its back to the drawing board.

Hopefully, this will also help with the diabetes - again - a year ago I was tested and I wasn't pre diabetes, but now my blood sugars are very high - I am going to manage this through diet as I don't want any more drugs in my body that aren't absolutely necessary!

[PMRpro Ambassador in reply to Nonemmett]

I have to say - if you are unable to get below 20mg many doctors would take that as a sign that maybe it isn't PMR or not "just" PMR. I fully get why you want off pred if you get the mental effects - they are probably about the only adverse effects that would persuade me to go back to PMR without pred though that was a pretty unpleasant 5 years (I didn't choose it). In the USA and Oz I know there are doctors who have changed the diagnosis to inflammatory arthritis, showed that a DMARD or two don't work and have given the patient tocilizumab for ?PMR - of course there can never be a 100% identification of PMR, there are no definitive tests. That works it seems!

[Sallyaches]

Hi, I totally understand about the mental side effects of Prednisilone . I was having nightmares so vivid I actually thought on waking the things actually happened . I was so easily startled by things, was anxious and moody and found driving frightening. None of these things had I experienced before being on high dose Prednisilone . I was also finding it very difficult to reduce dose.

I was started on methiotrexate injections and they did help me reduce. The injection apparently causes less side effects. My worst side effect was hair loss, that lessened when I increased the folic acid to daily.

I would advise you to try it and stop it if you find the side effects too much.

If that doesn't work there are other drugs. I am now on Azathiopine and Prednisilone and feeling pretty well on it.

Good luck

[PMRpro Ambassador in reply to Sallyaches]

Interestingly, I found some aspects of driving frightening just with PMR, no pred - the pred helped that and I feel very different when driving in the same sort of situations now.