Briefly , started on 40mgs preds for PMR/GCA june 15, three or so flares. Got down to 10mgs last month but head pain necessitated me going back up to 15mgs. Now comfortable on 12.
However, this was around the time I was having stress from arranging my return to work, and difficulites arising with this.
I gave my notice in last week so will not be going back to work, therefore I am less stressed.
Saw my Rheumy this morning, who was disappointed on my slow reduction - and therefore has prescribed Methotrexate. He described all the possible side effects but really wants be to reduce preds and therefore feels this will help. I have (like most!) suffered so many effects from preds the thought of starting another strong med is so demoralising.
He wants me to continue with the Arcoxia which has helped my other non PMR feeling, joint pain.
Could I ask opinions and perhaps experience on the medication from the helpful people on this forum. He wants me to be on 11mgs pred by the time I start MX and them stay on 11mgs for 2 months until I get used to the MX then reduce again. I am not seeing him for 4 months now so will see my GP for regular blood tests and the folic acid etc.
I am wodering if I now have less stress whether this will help me reduce preds etc. or I should take the MX.
This PMR and TA was really established before diagnosis, I am not sure whether that has anything to do with what he calls my symptons being stubborn to the preds
Thank you all as always.
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lesley2015
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I have been on prednisone 40 mg and it started July 2015. I reduced too quickly and had a relapse so my opinion is to do it slowly I am now on 12.5 ready to go to 10 But at 10 I will just do 1 mg a month because the way to reduce is only 10% at a time. My rheumatologist wanted me to go from 10 to 7.5 and I told him right up front no way. If you read these blogs OK Gilberts book you know you can't reduce quickly. I also will not go on methotrexate the side effects of that can be devastating and there is no proof that it helps to take you down any faster. These doctors just don't know but if you stick with this forum you will learn everything you need to know from some very knowledgeable people. Good luck
I think it would be sensible, and possibly even acceptable to the doctor, if you stayed with just the pred for a few months after you are no longer stressed by work. It could well be that your taper will be much more successful without the work factor. It would be good if you could avoid mtx at least for a while longer, as the chances of more side effects are fairly high and its usefulness in "steroid sparing" not guaranteed. What specifically do you need the Arcoxia for? Would modifications to your diet and some appropriate exercise help, or maybe you've already been trying those?
Are you using the dead slow nearly stop tapering plan? That makes it much easier to distinguish between pred withdrawal and return of PMR, and also easier to stop reducing before a flare becomes established.
I'm sorry you've been having such a difficult time. Hopefully things will take a turn for the better very soon.
Yes I think I will delay things a bit and try a slow reduction, which I had been successful with, (doing the dead slow method - more or less!) until 10mgs, then either that was too low or stress kicked in (and it was extremely stressful).
My knees swell and ache and my ankles and hips weere sore, this was stopping me sleeping, and doing anything the arcocia has almost taken this pain away completely. I did not have these pains in those joints when I was dignosed with PMR - it was more muscular - it feels different.
I average about 1.5-2 miles a day - I ride my horse once or twice a week depending how I am feeling - but if i walk too much or overdo it, I suffer the following day and feel even more fatigued than usual. I still nap each day and find some days the effort of doing anything a challenge.
Not sure how much exercise I should be aiming for but I get breathlesss and fatgued - so do as much as I can manage whichwill not wipe me out the next day.
I have cut out most carbs and cut down on fruit, eating lots of veg, fish,eggs, meat and some cheese.
I never quite know how much exercise to do either, but I always know when I've done too much! But I do try to make sure to have lots of rest times as well (this is one reason I'm on my computer far too much!) as a sort of antidote to maybe having overdone things. It's hard making new habits, isn't it? But the reward is feeling better and that's a great incentive.
Hi Lesley, I was just looking up Arcoxia on drugs.com and read that it hasn't got a licence in America because of increased risks of stroke etc. It also said that if you are on Methotrexate it is contra- indicated, so I am a bit concerned for you. I looked it up because I wondered if I was missing out on something that could help my OA pain, but now I don't think I would want it.
As for Meth. I was put on it quite easy on in my journey as I was struggling to reduce. I didn't have any bad side effects except that a lot of my hair fell out and grew back curly which I really liked! Unfortunately, I have had another episode of falling hair and it is much less curly now, just unruly! Anyway, the Meth. didn't do anything for me - it takes a few months to get into your system and then I tried reducing and just had another flare, so no change there! Later on I was put on Leflunamide, which had the same impact- none! Except it did give me really high blood pressure which meant more drugs, luckily, as soon as I stopped it the bp came down again.
It has to be your decision, but it is not a simple one.
Acoxia has definitely helped me. My good friend who has RA is on it and it has helped her enormously, so like most drugs has its place and varies with it usefulness according to the individual.
Rheumhy said the pharmacy will tell you not to take acoxia and Meth together but just thank them and ignor them.
It really is a mine field and scares me the side effects that these drugs potentially have if they are not actually doing any good.
I am going to wait a couple of months then decide.
"the panel felt that there is no clinical prototype unconditionally
warranting treatment with MTX, rather the use of this drug should be discussed on an individual basis. In clinical practice, MTX may be considered for example in female patients (36,39,47) with high initial erythrocyte sedimentation rate (ESR) (.40 mm/hour) (48–53), peripheral inflammatory arthritis (54) and/or comorbidities that may be exacerbated by GC therapy.
...
The reasons why the panel did not support a stronger recommendation for the use of MTX in PMR are the following: 1) the total number of patients investigated in randomized trials was small (n5194) (24–27), hence further confirmation of the present data is necessary; 2) results were contradictory in part, although trials with a negative result had a very low QoE; 3) a reduction in GC-related adverse events with the use of MTX has not been demonstrated. The power of the prospective studies to address this outcome, however, was insufficient. The panel nevertheless felt that earlier discontinuation of GC (24) and a lower cumulative GC dose in MTX users (26,27) decreases the likelihood of GCrelated side effects; and 4) the cost-effectiveness of MTX use in PMR is not clear. More frequent prescriptions of MTX may lead to higher utilization of healthcare resources in the short term (eg, because of specialist referral, monitoring visits, blood tests, etc.) but may in the long term save costs by reducing GC-related side effects."
I've always felt it wasn't worth the risk of the extra side-effects and the local specialist here where I live don't consider it has a role in PMR and definitely not in GCA anyway. However, I do know a couple of people for whom it seems to work and they are on lowish doses of pred. Would they have got there with a slow reduction approach? Who knows. Now I've come to the conclusion that it may be worth trying PROVIDED there are no adverse effects on the patient. It is felt to take a year to show any advantage - but if you are fine on it, fair enough. On the other hand, if it makes you ill, that's another question.
My own personal opinion in your case is that just over a year is early days to complain you aren't at a lower dose! Relapses are common in the first 18 months or so, particularly if you try to reduce too far or too fast or you are in a stressful situation. As piglette says, I think a period without the stress is called for before saying you can't reduce alone.
The methotrexate/Acrcoxia thing is that at higher doses Arcoxia has been seen to make blood levels of methotrexate higher (it does the same to mtx as mtx is supposed to do for pred, more effect for the same oral dose) so the potential for side effects also increased. I have to say - the thought of pred plus Arcoxia plus mtx doesn't appeal to me.
Thanks PMRPro for the information and your opinion which are always so useful.
I agree - it just seems too much medicaiton. I thought I was doing quite well having got down to 12mgs, so was so surprised he wanted me to go on this powerful medicaiton and then to stay on the same level of preds for 2 months when in theory, If I am reducing to 11mg as he has asked, in two months I may, just may be at10mgs - which looking at this forum is not bad in 18months.
He seems to say one thing then contradict himself. So frustrating!!
Do you know if I can take acoxia every other day rather than daily?
I would like to reduce it but dont want to rock the boat too much as I am trying to reduce preds?
Sorry, I really don't know about the Arcoxia - most such painkillers work best when you take them regularly but since I wouldn't take any NSAID on a regular basis alongside pred I've never tried it. Anyway, most of us have PMR pain as the problem and it very rarely responds to anything other than pred.
A lot of rheumies have unreasonable expectations. Someone who has had a really simple straightforward reduction would be on about 10mg now, especially if they were using the Quick and Kirwan reduction
where they keep you on 10mg for a year. You've had a flare - so you're bound to be a bit behind. There are plenty of people on the forums still on your sort of dose after 3 or 4 years and their rheumy is perfectly happy. They are so terrified of pred they will try anything, whether there is a reasonable expectation of it making a difference or not.
In Methotrexate my hair thinned came back curly n thicker. I felt so sick to my stomach that only eased if I ate. I gained 40lbs. I felt poisioned and it did nothing to help reduce prednisone.
Once off it I felt and acted like a new person which was noticed by family n friends .
Thanks PMRPro for the info. My rheumy persuaded me to try MTX and I had what I think was a very bad reaction but s/he says can't have been connected and puts it down to a virus. I don't think so. Strange virus that started when I started mtx and went away when I stopped taking it? S/he also thinks I haven't got PMR or if I had it it's now gone and instead have some seronegative arthritis, yet my body is so responsive to steroids and even small changes in dose I'm puzzled. I desperately want to get off steroids after 4 years on them, but what I still don't understand is why taking another drug will help me come off steroids. I'm really struggling to get below 7.5 a day. I'm now on 7 after reducing vry slowly but a lot stiffer, particularly painful balls of feet, lead legs and stiff hips and shoulders again, all of which I don't get at 7.5 or higher. I use the dead slow method but even going very slowly trying to get down to 6.5 feels a difference. On the day after I take 6.5 I have no energy and really struggle to walk very far. At 7 it's slightly easier but not as good as it was on 7.5. They want me to try another DMARD but I'mnot convinced. It seems to me my choice is suffer the side effects of pred longer or reduce the pred and somehow live with the stiffness. The devil an dthe deep blue sea.
Is there any evidence that taking another steroid sparer or DMARD will help reduce inflmmation so I can reduce steroids? From what you say above the answer seems no unless there are comorbities.
Not really - the so-called "steroid sparers" change the way the body processes the pred so you MAY get more bash for your buck - i.e. you will get a better effect from the same dose. It isn't the inflammation they would damp down anyway - it is the activity of the autoimmune system and that may happen. Or it may not - it will depend on which malfunction of the immune system is causing your particular version of PMR. The studies are mixed - which is why the recommendation is not to force your patient to take one but suggest they may like to try.
It is becoming clearer that PMR isn't just one disease, there are different versions, and it is possible that for some patients adding a DMARD may work on their version of PMR. It is fair to say that without trying you can't know, there is no way of predicting it at the outset. So if you can take one without problems then it may be worth trying - but if it just makes you more ill there is no justification for continuing. I do know one lady with GCA who benefits from azathioprine - she didn't THINK it helped until she stopped taking it. Then she found the difference. Another friend takes methotrexate, it doesn't make her ill and seems to allow a lower dose of pred.
Whatever form of reduction you use, you won't necessarily get to zero - you will stand a better chance of getting to the real goal: the lowest dose that manages your symptoms as well as the starting dose did. There is no virtue taking too little pred. Yes, it has side effects. So does PMR: I put on weight, and was inactive (high risk factor for osteoporosis). I was depressed and in constant pain. I was bad tempered as a result. At least with pred I have next to no pain, am not depressed and can walk reasonably well and enjoy life.
In my book, if something starts soon after starting a medication and stops when you stop taking it - it was the medication until proven otherwise. Not coincidence...
Hi Lesley, curious to know if you took the Methotrexate and did it help? My rheumatologist has me on it also for PMR with the hope that it will help reduce prednisone from 20 to 10 a bit faster than I am currently doing, to try and help weight gain, moon face, and osteopaenia ( proven on decade scan). How are you keeping?
Weight gain/moon face: cut carbs lots... Osteopenia is less of a concern - my readings are osteopenia, but have barely changed since being on pred, even after over 7 years.
Moonface only reduced as the dose came down and I also lost weight. It didnt fall off I actually joined Slimming World, but tweeked it slightly, no white carbs at all or Pasta or Rice. For me having the format of actually being weighed and paying made me more determined. It was slow, but I am back to my original weight, I gained and now have also lost, 2 stone.
Currently on 7mgs steroids, Sulfa, low dose of amitriptyline - although fatiqued often and sometimes very sore much better than this time last year so I am thankful for that, still no where near my oldself though. but live in hope!
Yes I did but unfortuantley it made me feel really ill, so I came of it. I have since tried Leflunimide, Azathioprine and I am now on Salazaprine, which I am tolerating. I did come off it suffering from hedaches, but have now started again with a slower increase and so far ok. This is more now for inflammatory arthritis which I have been additionaly diagnosed with, rather than a steroid sparer.
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