Is methotrexate better than continuing with tapering of steroids?

[Di1863]

Hello everyone - this is my first post so I am hoping someone will be able to give me some advice. I am currently on5mg of Prednisolone, having started on 15mg last November. I am experiencing some stiffness in my legs but nothing to stop me from carrying on with my normal activities. My rheumatology doctor has suggested I start taking methotrexate to enable me to come off the steroids quicker. However, I would be on the methotrexate for 2 years. My instinct is to carry on with the slow tapering of the Prednisolone. Has anyone had experience of this regime and would they advise it? Thank you for any thoughts you are willing to share with me.

[DorsetLady PMRGCAuk volunteer]

As you have got as low as 5mg, don’t see the point in adding it MTX with its own set of side effects …and you have got to that level very quickly..

Your rheumy seems to be in a great hurry to get you off Pred… sounds like another one who thinks PMR is a short term illness ….

..just keep your eye on the leg stiffness, it could indicate that you need to slow up on your tapering.….

[Di1863 in reply to DorsetLady]

Thank you DorsetLady - the suggested tapering is now a bit slower… 5 mg one day, 4 mg the next day for a month then 4mg each day for a month and so on. I will see how it goes!

[DorsetLady PMRGCAuk volunteer in reply to Di1863]

Many find that once below 5mg a reduction of 0.5mg per month is better… plain white tablets can be cut in half.

If doctor queries, it is in line In with guidelines -1mg taper every 4-8 weeks depending on disease activity and patient’s wishes … and remember the mantra -reduction shouldn’t be more than 10% of current dose (helps the adrenals as well).

As you get lower a 1mg reduction becomes more in percentage terms -and very often more difficult-not always -but why risk it.

..and as SnazzyD suggests -a slower tapering plan…

[SheffieldJane]

you have done perfectly well up to now. I would be reluctant to add another serious drug with significant side effects at this stage. A careful slow taper of half a mg, achieved over a 4 week period would be a better idea. You can’t rush this last bit, your adrenals must get up to speed again. Good luck. X

PS. Unless your Rheumatologist is thinking of arthritis if you suffer with it.

[Di1863 in reply to SheffieldJane]

Thank you SheffieldJane - I will stick with tapering the steroids!

[SnazzyD]

Another reason for not hurrying up the taper from here is that you may run into trouble if your adrenal function doesn’t return at the same speed which seems like a common complaint on here! Methotrexate has no role in this process that has nothing to do with PMR. 5mg is still enough to make the adrenal glands sluggish to work again. Have a read in the FAQ’s about adrenals so if you need to stand your corner you can stand informed.

[Di1863 in reply to SnazzyD]

Thank you SnazzyD - the suggested taper is 5mg one day followed by 4mg the next day for a month, then 4mg each day for a month then a similar reduction each following month. Does this sound too quick?

[SnazzyD in reply to Di1863]

Do you mean alternate day dosing before settling on the low one after a month? My body hated alternate day dosing. I did 0.5mg slowly introduced over 6-8 weeks and the lower I got the slower I got. Have a look at tapering plans from the FAQ’s here

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

Hi and welcome!

MTX does NOT guarantee you will get off pred quicker and frankly, any doctor suggesting adding it for a patient on such a low dose is in cloud cuckoo land. At this stage you will still have to taper the steroids because there is a second limiting factor at this stage - adrenal function. At doses above about 7mg the adrenal gland production of cortisol is shut down - the body knows there is plenty for the body to function so doesn't produce more. That must return before you can stop pred - you won't start MTX and stop pred, you have to taper the pred slowly enough for adrenal function to keep up.

Half of patients are able to get to 5mg pred in 18 months, the rest take longer, You are well ahead of the curve so why your doctor is so keen to introduce another drug with potentially very unpleasant side effects is beyond me and I know experienced and expert rheumies in the field agree, If MTX was so wonderful in PMR they would use it from the start - they don't. If you were stuck at well above 10mg it would be a different matter but you aren't and you aren't even stuck at 5mg as far as you know. There is no evidence that adding MTX for 2 years will get you off pred - we have plenty of people on the forum who have been on pred much longer than that and are still on a higher dose of pred that you are without it.

I would say no - but I have tried MTX as I was stuck well above 10mg after many years, It was a very unhappy month! I had so-called pred-effects I had never had before and the fatigue was unbelievable.

[sdowney717 in reply to PMRpro]

What was your methotrexate dose per week?

[PMRpro Ambassador in reply to sdowney717]

Can't remember to be honest - it was 5 years ago. The standard dose, 15mg probably.

[Di1863 in reply to PMRpro]

Thank you PMRpro - I will definitely say no to MTX. The suggested taper is 5mg one day and 4mg the next day for a month, then 4mg each day for a month, then 4mg a day and 3mg the next day for a month, then 3mg each day and so on. Is this slow enough do you think for the adrenals to sort themselves out?

[PMRpro Ambassador in reply to Di1863]

It is better than most - but we of course think our tapered approaches are better than alternating doses which at this level are quite large % changes in dose from day to day. It may work fine for you - only one way to find out.

[HeronNS]

Haven't tried (or to my mind needed) MTX myself but as far as I can tell from several years of reading the forum there seem to be two ways it's introduced into PMR treatment. One, which we seldom hear about but I have heard it mentioned in passing, is right at the beginning, I suppose with the idea that it may mean a much lower dose of pred faster? And, more usually, when a patient has had a lot of trouble tapering to the 5 mg level (where side effects become minimal) and have been on pred for at least a couple of years by then. I was at 3 mg by the end of my first year with no difficulties. This speedy taper is in itself unusual but I think I must metabolise pred very effectively so the lower dose was easier for me to reach than it is for some. Tapering did become harder after that, but I've been at or about 2 mg, sometimes lower, since then, with no perceptible pred side effects and, thankfully, a doctor who is willing to let me manage my own dosage!

[Di1863 in reply to HeronNS]

Thanks HeronNS - I will turn down the offer of MTX.

[sdowney717]

ccjm.org/content/87/9/549

whatispolymyalgia.com/treat....

Methotrexate is used with PMR as it does help people with inflammation.

[PMRpro Ambassador in reply to sdowney717]

Sometimes ...

[sdowney717 in reply to PMRpro]

Yes, I just started 15mg yesterday, each pill is 2.5mg. So far no ill effects. Take 15mg once a week. I was wondering why weekly, i read it suppresses the growth of fast growing cells.

I was told to wait one week till starting hydroxychloroquine. Likely they want to see if any side effect from the meth first.

drugs.com/compare/methotrex...

Both are used for arthritis. I do have mild arthritis in my fingers, shown by Xrays

[PMRpro Ambassador in reply to sdowney717]

What SORT of arthritis? Osteoarthritis or inflammatory arthritis? They are worlds apart. The DMARDs are for inflammatory arthritis, won;t do anything for OA.

[sdowney717 in reply to PMRpro]

The rheumy has been thinking my hand arthritis could be seronegative RA. I had ZERO hand issues before PMR except for trigger finger of both middle fingers.

RA mut be aggressively looked after to prevent further joint damage. who knows what kind of arthralgia is in my hands . Trigger finger is due to tendon inflammation.

[Gaz227]

I have been on pred for 8 years , when I get below 4 Mg everything goes pear shaped . So 12 months ago on started on 10mg MTX injections , exactly the same result, anything below 4 Mg pred and everything flares up , I got over the side effects of MTX within about 4 months but didn’t feel it was doing anything to get me off pred . 6 weeks ago I had dental surgery so I had to stop MTX for that, then 2 weeks later prostate surgery which meant up to now a 6 week break from MTX , staying on 4 Mg pred I haven’t noticed with the exception of a bit of ankle pain and lower back pain a great deal of difference . I do have other arthritic issues thou potentially RA , but I am hoping I can deal with them with diet and maintaining a good yoga regime . I was told 5 years ago by Dr Rod Hughes in Surrey I will possibly be on low dose pred for the rest of my life I hope not but it’s all about quality of life , I’m a bit reluctant to try and taper at the moment as I am still rehabbing from the prostate surgery , only Holep laser surgery so not to invasive and a pretty fast recovery time expected. I feel different since I stopped taking MTX less fatigued and less anxiety , also another major factor for me is hydration , when I had the prostate issues I couldn’t hydrate myself, now I am drinking 3 litres of water a day , I don’t drink alcohol , drinking that much water a day I am hoping is going to have a massive affect on the function of my body in general . Fingers crossed , I hope they insight into 12 months MTX as a tapering drug helps you make a decision for you personally . 👍😀

[Mamamia21]

I am one of the few that Methotrexate has helped. I was struggling to get below 10mg of steroids. I think by the time they introduced MTX I also had some kind of arthritis in my hands and wrists. I am currently moving slowly to 5.5mg steroids and on 12.5mg of MTX and currently feeling well. I have been lucky that I had no side effects with MTX and apart from the occasional bout of extreme tiredness but these are few and far between. If my symptoms had not changed I would not have wanted to add another drug into the mix. As it happens they had and I have been doing ok so far. However, if I had managed to get to 5mg I am not sure I would be adding MTX at this point.

[KASHMIRI1]

I am just going back on methotrexate and an at 5.5 mg steroids. It worked like a dream for me and made reductions easier. I have had a break from it for a while due to a weird blood test results. I felt so much better taking it than not.

[Ozziedays]

It seems to be a very individual thing. It worked for me. I’d had two flares at around 5mg from a starting dose of 25mg and tapering at 0.5mg per 4 weeks. I started MTX 20mg once per week and 12 months later I was off the pred. I had no noticeable side effects from MTX. I’m now 9 months pred and symptom free, bloods all good. My rheumatologist recommended I continue with the MTX for 18 months after reaching zero pred but am no longer under her care in Australia having returned to UK. Currently waiting for NHS rheumatology appointment and under care of GP practice that has a shared care protocol for PMR with local rheumatology department. Dosage has reduced to 15mg per week.

[PMRpro Ambassador in reply to Ozziedays]

You are one of the lucky ones - it works brilliantly for some. Bit little girl with a curl - when its good it is very very good but when it is bad, it is horrid!!!

[Ozziedays in reply to PMRpro]

I can see that from other replies. I expect some of it is to do with our individual biology, genetics, predispositions and not least other health conditions / treatments / medications that we may have had in the past or may be concurrent with the PMR. I feel very fortunate indeed that I have got to where I am today.

[PMRpro Ambassador in reply to Ozziedays]

Sarah Mackie and I think it is one particular form of PMR - or it is LORA that has presented entirely polymyalgic in appearance.

[GML19]

Each time I tapered to 10mg steroid, my GCA returned. I had repeated infections with admissions to hospital for sepsis. It was important to taper my steroid dose to zero and I was put on Methotrexate. I found the side effects horrendous and as I have previously reported surprising even myself fasting one day per week made Methotrexate bearable. It enabled or allowed me to taper my steroid dose to zero. I have now been off steroids for nearly 7 months. In October, I will have completed two years of Methotrexate and I hope then the medication will be discontinued, particularly as the drug has played havoc with my stomach. Although Methotrexate possibly enabled me to be steroid free, as everyone has said, it is a powerful and potentially dangerous drug and it strikes me strange that a medic would recommend it to you when you have managed to reduce your steroid dose to such a low level, so no, I wouldn’t recommend the course recommended by your physician. Good luck.

[Di1863 in reply to GML19]

Thank you GML19 -I will stick to tapering the steroids. I hope all goes well for you- sounds as though you have had a horrid time! All the best for the future.