Rheumy wants to put me on Methotrexate- any advice?

[suzy1959]

I have just seen my rheumatologist after a flare last week and raised CRP and ESR levels (29 and 26).I was trying to get down from 10 to 9 mgs but have had to go back up to 11mgs. He thinks that I need to start on Methotrexate so that I can cut down the pred. as it seems that I will be needing it at too high a level for too long and that MTX will be a better alternative for me in the long-term, with less potential nasty side-effects.Although this drug sounds a bit scary, as long as my blood is tested regularly and is OK, there don't seem to be so many long-term problems with it. I would love to hear what others think about it.

[polkadotcom]

Methotrexate is like all the other steroid sparing agents, it works for some but not others. I was on methotrexate for 2 years and the first year it worked well, enabling me to reduce to 2.5mg a day, the lowest dose of Pred that I had been on in several years. It took a couple of months for me to feel any benefit and once my body got used to it I had only minor side-effects.

What it didn't do was keep GCA at bay. I was on that very low dose only for 7 weeks and then had a severe GCA flare and had to go back to 40mgs. I had problems all along trying to reduce from that and it became obvious that the Metho just wasn't working any more. At the same time I began to get side effects in the form of very painful mouth ulcers. I did try to carry on, but at the 2 year mark asked to come off it, the ulcers were making life a misery.

It's always a case of 'try it and see' with any drug - you might be the person who finds it a miracle!

[trish29]

Hello suzy 1959. Trish 29 hoping you get on OK with Methatrexate , you will probably get a mixture of yes and no about taking this very strong medication. I took it for a few years and it made me very sick and very bad headaches. I got down on the steroids but had to go back up again after I was taken off it. I was also put on Azathiaprine which does the same job and affected in just the same way. I don't think that I saw the rheumatologist frequently enough so hence I didn't get regular blood tests . As far as I can remember it affected my liver ,so make sure you get regular blood tests. I know quite a few people that have been on Methatrexate and because we are all different some can take it and some can't. All the best and hope things get better for you. trish29

[iforget]

Hi there...I was on MTX for several years (for another co-existing condition) and when the rheumy first suggested it I took one look at the details and said no way.!!!

Needing to take some kind of disease modifying drug I tried Sulphasalazine first and that stuff nearly killed me...(who knew I was allergic) so I gave in and took the MTX.

At first it made me feel really sick but I was switched to the injectable kind and things soon settled. I had regular blood tests and twice had to withhold treatment for a while when I developed an active infection requiring antibiotics. In the end I had to stop due to developing side effects at an increased dose.

That said at my last rheumy visit he suggested adding MTX back in now for the PMR. He tells me it would be a way lower dose than I took previously and so I am happy to consider it.

Take it weekly, get your blood tests done regularly and if you get them do not suffer side effects in silence...tell the doc or nurse and let them deal with it. I know plenty people who have taken this drug for years with no problems.

I hope it works for you.

[tomasina]

Hi, I have GCA and was put on Methotrexate last June, having reduced Prednisolone to 6mg. daily. I had previously tried Azathiaprine but had adverse affect on my liver so stopped. I commenced on 15mg. MTX weekly, at the same time reducing by 1mg, per month the Prednisolone. I have regular monthly blood tests and my results have returned to normal. I am now taking 10mgs. MTX weekly and have been off Prednisolone for two months. This was all undertaken as prescribed by my Rheumatologist. My head pains persist but the fatigue has lifted almost completely. I was very anxious to get off Prednisolone with all its long term side effects.

Good luck with the decision you make, Always get regular blood tests though.

Best wishes Tomasina.

[2watsons]

Hi been on MTX for six months due to CSR lost use of one eye from it nine months ago did not like idea of taking it ,i had side affects for a few weeks when dose increased ,so went back down to 12 .5 weekly and have odd day after taking it tried but now soon passes ,now on 7mg of predisolone will stay at 5mg is all goes ok blood now done twice a month all fine even had class of wine last week ,and test normal .so good luck .

[Patsy235]

Hi - three weeks ago I was put on methotrexate (cant take steroids) - took the three 2.5mg tablets and I was to weak, have other problems. Down I went and ended up in hospital with pneumonia. Still recovering. Heard some good and some poor results from this drug. Only advice I can give is if your general health is ok try it. good luck

[Dorene]

Hi Suzy1959. I was on methotrexate for 9 months but couldn't bring my preds down, I was worried about side effects as I had been told I needed to take it until I had come off the preds completely, I just stopped taking it. I have been hovering between 6mg and 7mg for 8 months then I read Sharonsspot's blog, posted 17 mar 2012 and realised i still had PMR/GCA and 7mg was what I needed to feel well. As I was originally diagnosed with Temporal arteitis my main worry was my eyesight. We have to make our own decisions at the end of the day. This site is a fantastic help. Good luck Suzy1959.

[pennyw Administrator PMRGCAuk team member]

Hi Suzy

really sorry to hear about the flare up. I know nothing about methotrexate so don't have an opinion.

However, I changed the foods I eat (anti-inflammatory) two weeks ago yesterday and this has had a significant effect on how I feel - I had put on about 3 stone in the past 18 months. You are possibly already eating anti-inflammatory foods but if not it might be worth a try to see if you can improve things without any more drugs? A side-effect of the change for me has been a loss of 9lbs in two weeks - . I have had to stop eating lots of things I like but on the other hand I enjoy most foods so it hasn't been at all difficult.

Whatever you decide all the very best.

Penny

[mapco in reply to pennyw]

Hi Penny I'd like to know more about the foods you're working with. As a guy I'm inherently lazy about these things. But the extra weight is a concern having gained about 6 inches on the waistline its not good. Thank, Mike

[Celtic PMRGCAuk volunteer in reply to mapco]

Hi Mike

Like Penny, I followed a diet as high in anti-inflammatory foods as I could whilst on steroids for PMR and GCA and although not a cure I am positive that the right foods helped to reduce my pain and kept my weight steady throughout - I gained half a stone in all.

Our Surrey Support Group were lucky to receive a presentation by a hospital dietician on anti-inflammatory foods. Briefly the foods identified were oily fish, healthy fats and oils, low GI foods and fruit and vegetables. Fats include unsaturated fatty oils, particularly polyunsaturated oils, which have an ideal ratio of omega 6 to omega 3, found in mackerel, tuna (not canned), kippers, pilchards, salmon, sardines and herrings. Use less corn and sunflower oils or margarine as they contain greater amounts of omega 6 fatty acids which tend to be linked to inflammation. It's good to eat avocados, cashew nuts, almonds and walnut but in moderation remembering that all oils and nuts are highly calorific. Low GI foods are recommended since high blood sugars are pro-inflammatory. Sugar levels should be stabilised throughout the day, and low GI choices include oat based cereals, wholegrain/granary bread, noodles, pasta, basmati rice, pulses and legumes. Herbs such as turmeric (circumin), ginger, garlic, chili, basil, cinnamon, rosemary and thyme are known to be good at reducing inflammation.

This is just a précis, but personally I ate oily fish three times a week, avocados and asparagus (the latter a good diuretic food to counteract the steroid-induced weight gain) several times a week, garlic every day, plus turmeric added to suitable meals when cooking such as casseroles, risottos, etc. I avoided coffee and as much sugar as possible as these are known to put stress on the adrenal glands which are already being suppressed by the artificial steroids. I also avoided all processed meats.

Hope that helps.

[pennyw Administrator PMRGCAuk team member]

Hi Mike

I can send you a copy of the list of foods I found on the internet which is what I am following. Can you send me your email address.

Penny

[suzy1959]

Thank you all for your comments. I am a little worried about the possibility of nausea from taking the Mtx as that seems to be quite common. I too have been following a better diet with a lot of the elements that Celtic mentions, and have lost about 6lbs, but it is hard and slow and I was already overweight before I got ill. The sooner I get the Pred. down the better, I think. Does Mtx. have the same weight issues as steroids, I wonder?

[iforget]

I did not gain a single ounce on mtx and I don't think weight gain is an associated side effect at all. Nausea can be a side effect but for many it is mild and fleeting (for a few hours after the dose) but if it is a problem for you ( it usually settles within 48 hours at worst) speak to your doc and maybe try switching to the injections - it really helped me.

I was working at the time I was on MTX and to avoid disruption to daily life I opted to take my dose on a Monday evening. I could rest afterwards and sleep through the more obvious side effects. I also planned my Tuesday workload to be gentler (hence taking it on Monday which tended to be a bit more random workwise... after a weekend) . I know some people decide to take their mtx at weekends so as not to impact on work but I found work was a good distraction and I did not want my precious free time linked to meds.

On paper MTX looks scary... Having taken it for quite some time and now taking pred, I would take MTX over pred any day.

[suzy1959]

Thanks, iforget, for that really useful advice. I am currently having difficulty walking after spending the day in London with my daughter yesterday. It's getting me down that, even on 11mgs Pred., I feel almost as bad as I did a year ago before I was diagnosed and treated. I think the underlying PMR has got worse, and I wonder if it will continue to do so. I am due to join my husband sailing in Croatia on Wednesday and hoping that I will be feeling better by then!

[Pipistrelle]

On anti-inflammatory foods -- if you google 'Dr Weil inflammatory foods' he has tons of info and lists of foods that you can print out, and a food pyramid (handy for sticking on the fridge!).

On methotrexate -- my rheumatologist also suggested I take it a couple of times but I really did not want to due to side effects. At any rate I had no real problem doing the reductions on steroids over two years (one bad period with my knees but this was almost certainly not directly related to the PMR) -- still not sure why he wanted me to do both preds and methotrexate!

Some have really good success with it and get way down on the steroids, and some struggle with it. If there are good medical reasons to go on to it then that's a different matter, too... I just seemed to have a rheumatologist ready to put me on everything... :).