Advice please....should I try Methotexate???

Hi Pauline!

Sorry to hear your problems getting the dose down. Rather than me go and trawl through the old posts and still not find the answers:

How long have you had PMR? When did you start taking steroids and at what level? Have you been down to a lower dose and had to go back up? How quickly (or slowly) have you been tapering?

There is an article on the pmr-gcauk northeast support site by someone who has been on MTX for at least a year and I think it was quite successful for her. I mentioned a week or so ago about a site called rawarrior which is actually for rheumatoid arthritis which is what MTX is usually used for (apart from being a chemo drug in cancer) and there is a very good article there about MTX, using it, side-effects and so on that you might find useful.

I suspect it is something you have to try to know what it's like and like all the other things - each of us will react differently. The papers I've read are really divided about how much it really \"spares\" steroids, some think it's worth it, others say you don't end up taking significantly less in the long run. You can't get off the steroids entirely but the supporters say you get to a lower dose.

MrsK put some useful links up if I remember rightly.

all the best,

EileenH

Hallo Pauline. Perhaps we could look for our old lives together. I do so sympathise. I am seventy-eight and still resent the limitations imposed by this rotten illness and, with a few very honourable exceptions, the apparent lack of interest in sorting it. Am reading a very informative but very discouraging book called Injustice. One chapter expounds on drug companies, private medicine and the interests of same. Patients come pretty far down. We are too profitable for them to sponsor a cure, along with all the other autioimmune diseases. Keep taking the tablets and watch the bottom line expands.

Don't know about methotextrate but if you put it into the search box there are lots of entries, several encouraging. In the end we have to decide do we trust those advising us. I hope we can but fear there are no certainties.

Sorry. Have spent too much time reading what the \"essential\" cuts are going to do to really needy people.Apparently, we are so innumerate that a large portion of the population think that 20% means a twentieth. No wonder they think that that cuts are ok

Hi Eileen,

I was diagnosed in April of this year and started on 40mgs (had already had NSIAD's in hospital so was started on that level just in case I had GCA aswell). I reduced by 5mgs every two weeks until I got to 20 mid-June which all went fairly smoothly, then went to 17.5, 17 back to 18 down to 17 down to 15 , back to 17, then 16, 15, 14 and have been back on 15 for last 2 weeks.

initially my rheumy was trying for a 2mg reduction per month...but my body didn't like that....even with trying the alternate day reduction mentioned by others on here I was still having to take more pain-killers on top of the steroids to achieve comfort.

I really do not like what I am reading about Methotrexate....I have lost so much weight on the steroids that I am now clinically underweight for my height (I'm 5'3 and weigh 7st6lbs now), I already have pernicious anaemia for which I get injections, and my body is covered in bruises, so as you can imagine, I'm scared to add something even more toxic to the mix

It just seem to me that it is a very risky drug to take without any major added benefits other than reducing the steroids as a faster rate.

I would really appreciate your thoughts as I find your posts extremely well informed and helpful.

Best wishes,

Pauline.

Hi Pauline

I'm sorry to hear what a rotten time you're having. To cut a long story short, I had a bad reaction to Prednisolone and was put on to Deflazacort which is another steroid but much more expensive! I've had no problems at all with it but my ESR and CRP have not reduced at all since Dec 2009. Recently I tried Methotrexate and for the first 3 weeks I was fine then on week 4 I had a bad reaction so was taken off it. You only take it once a week and take folic acid the following day. Anyway, I had to come off the Deflazacort before taking the Methotrexate so when I had the reaction I had to go back on them again. I am now on a drug called Leflunomide (Arava) which is supposed to reduce the inflamation and ultimately take the place of the steroids. Last Saturday I had to reduce the Deflazacort from 18mg which is equivalent to 15mg of Prednisolone) down to 12 mg. The following day I had bad pain in my shoulders and arms and I persevered until Wednesday when I had to phone my GP. I am now back up to 18mg of the steroids as well as the Leflunomide. What doesn't help is that I was also diagnosed with secondary Fibromyalgia which gives me pain all over.

Sorry I've rabbled on there! I would say give the Methotrexate a try and if it's not for you then ask for Leflunomide and try that.

Good luck and I hope you are pain free soon.

Dublin Pauline.,

It is a very personal decision to try another course of action.

Have you had your Vit D levels checked. If low it causes muscle pain.

Was the injection into your shoulder Kenelogue?

Morning Pauline,

As MrsK has said it is a very personal decision when it comes to trying another drug - especially one with the potential MTX has for side-effects.

However - my gut feeling reading your last post is that your doc was being a bit enthusiastic in his reduction once you got to 20mg. I've said a few times recently that several medical textbooks and papers underline a reduction of NOT MORE THAN 10% at any time so at 20mg that is 2mg max. And gradual.

I really feel 0.5mg at a time and be able to go down that amount every 2 weeks would be far better than 2.5mg in one fell swoop and juggling doses day to day. And it would avoid the problem of the inflammation starting up again as if there was any sign you could pop straight back up to the previous successful dose. One of the books/papers recommended that if the inflammation resurfaced, the dose should immediately be upped by 5mg, allowed to stabilise and then the reduction tried again more slowly.

I hadn't realised that you'd started on such a high dose - no wonder you had problems with the steroids. After 6 years with PMR I think I can fairly say - NSAIDs don't help much at all! And they have side-effects too, especially if you have to take high doses to achieve anything.

You've seen all my posts - I have searched for MTX studies and found only about 3 or 4 where it has been used in PMR plus a review paper from a couple of years ago which took them all together and reckoned that there was no real evidence from them to support its use except in very extreme cases for very elderly patients where steroids are contraindicated and there are already fractures. They felt the longterm overall reduction in the amount of steroid was negligible. It may be there are very recent studies that show something different - if it were me I would be asking the rheumatologist to see the work and would want a very good explanation and justification. As far as the papers I have found are concerned, MTX certainly hasn't been shown to have an effect on its own, nor has anything else. I haven't read a lot about Leflunomide so I'll have a gander for that as well later - trouble is I have some real work to do this week :roll: :lol: !!

But - as Klosblue points out, there are other steroids which are much more expensive but seem to have fewer side-effects and I think I'd rather have a go with them than MTX. Don't know how your insurance system works with that though.

I don't envy you making your decision, good luck,

EileenH

Hi Mrs K, Eileen & all.

It was a Dexamethasone injection that the Rheumy gave me into the shoulder joint. It is not toally pain free but considerably better than it was, and not nearly as difficult to manage dressing now

My husband and I have both googled MTX extensively over the last two days, and we are not at all convinced that the risk of severe side effects is worth taking, particularly as there seems to be no evidence to support its use for PMR except as a last resort, and its use does not appear to enable any significant reduction of the steroids .

So, on balance, I am going to respectfully decline my rheumy's suggestion and try a slower reduction of the steroids first (half a mg) and see how I get on for another while :wink: .

A friend of mine takes MTX for Rheumatoid arthitis, and other than thinning hair has not had any problems with it...but my track record of getting nasty side effects from drugs is not great (years ago I had a wonderful head to toe rash from Penecillin) so I'm very wary of taking anything new to me.

Hope everyone is having a good & pain free week-end.

Best wishes, Pauline

Hi Pauline

Oh I do feel for you having to make a tricky decision. I haven't replied to your latest posting earlier as I have no experience of MTX and thought that someone might come along who does.

I wonder why you were prescribed such a high dose of Pred at the outset just \"in case you had GCA\". If you had been started on the usual dose for PMR alone (either 15 or 20mgs) then possibly you may not have been in this situation now. What were your symptoms?

I have both PMR and GCA and there was little doubt about diagnosing GCA as I had very classic and severe symptoms, ie persistent bad headache, swelling around the eyes and glands, jaw pain on chewing, blurred vision and difficulty in focusing, nausea, sickness and rapid weight loss. Did you have very high ESR and CRP markers and did they return to normal through the first reductions in dose?

I was lucky in that I managed to reduce successfully through the first drops from 40mgs, each drop only being made if my ESR and CRP markers (which had been very high at the outset) remained normal although I was never completely pain-free.When I reached 5mgs I then went incredibly slowly reducing sometimes by just half a mg on just one day of the first week, two days on the second etc. I have been on 1mg for a few months and will soon try reducing by half a mg on one day of the week and so on. It's painfully slow but if it works then it's so worth it. It seems to be a way of tricking the body into not realising that you are reducing the steroid dose.

Perhaps if you try this with the Prednisolone, just reducing on one day of the first week and then two days on the second week etc, you may have some success, too. I do hope so and send you lots of good luck wishes. :goodluck:

MrsO

Hi Pauline,

This is just an extra bit of information for you to chew on. I said before I would go and look up leflunomide and I thought you might be interested in this.

There isn't a lot to be found about its use in PMR. It has been tried in the past at highish doses and after a loading dose and was found to have a high rate of side-effects. However, one of the rheumatologists who is involved with the UK PMR/GCA charity exhibited a poster at a meeting last April, reporting a small scale prospective trial which I believe they have now put in for funding to extend.

They had 8 patients, 3 had had GCA (one also had PMR) and 5 who had only had PMR. All were having difficulty reducing steroids, some had failed MTX (i.e. didn't respond to it at all). They were treated with 10mg leflunomide initially and then the steroids were reduced. If necessary the leflunomide dose was increased. Most responded to 10mg, 2 needed 10/20 on alternate days and one need 20mg/day. 4 patients got off steroids altogether and another 3 were able to reduce their steroids. 1 patient developed a rash, nausea and vomiting and diarrhoea and discontinued the leflunomide.

This is a tiny trial and - needless to say - the authors say it needs large scale replication before any real conclusions can be drawn. However - it sounds interesting. But, like MTX, it's big boy drug with some pretty hefty potential side-effects and I think that the real experts are of the opinion that all these possible \"steroid sparers\" need to be reserved for when there are real problems with steroids - either very long treatment or intolerance or side-effects such as fractures. Leflunomide has had a flag up from the FDA about possible adverse effects - not liver-friendly - which were not to the fore in the company's blurb (no surprises there).

When all is said and done, you've been on steroids for just over 6 months - is that right? And you'll have seen in my other posts that the majority of patients (about 3/4) will be on steroids for two years or more, about a quarter will be on steroids at a low dose for a longer time.

Bet you've got internet-indigestion and steroid-brain after this week!

All the best,

EileenH

Hi Pauline,

I've been taking mtx for about 2 months now. I was diagnosed with PMR in Jan. 2010 and I am taking prednisone 9.5 mg per day (started at 12.5 mg and ended up at 9.5, couldn't go lower). My rheumy and I had discussed mtx, but I was scared to death of the side effects.

Then I ran into an old friend who has had RA for years and she has been taking mtx for at least 15 years (at first I was told 25 years but then she said 15, so I am not sure--anyway, it's a long time). She said \"It gave me my life back\" which is a pretty powerful recommendation. Then I heard of 2 other people who have RA and have successfully taken mtx for years.

Of course, RA is a completely different \"beast\" from PMR, but I figured, why not try mtx anyhow? At least I can be fairly much assured it won't kill me, literally, to try it.

I know my rheumy has been anxious for me to taper off prednisone, and I hadn't been getting anywhere with tapering. Every time I tried I ended up flaring up with pain, and my bloodwork got bad again. I know from reading this site and others, that it's a long, slow journey and the disease calls the shots, so to speak. You can't push it -- it decides when it will go away. Knowing that, I started taking mtx on Aug. 24 of this year.

It's been about 2 months now and I have to say, something is making me feel better. Since I was basically not improving, just plugging along, before, I have to believe it is the mtx which has caused the improvement. I'm a lot more mobile in the morning, whereas I used to be stiff and sore until after noon. Last Sunday my sister and I went to a big quilt festival and walked around for about 3 hours--something I wouldn't have tried to do a year ago, when I think I was starting to get PMR but hadn't been diagnosed yet. Of course, I was sore for several days from carrying a purse and shopping bag for 3 hours!

I get blood tests once a month to see if my liver is doing alright, and to check the PMR values like CRP, sed rate, hemoglobin, etc. There has been some improvement with my CRP, although my hemoglobin is still low. Not sure about the sed rate.

As far as side effects, I take Folic Acid every day to prevent hair loss and mouth sores. I did get a mouth sore so I bumped the Folic Acid up to 2 mg a day;it went away almost immediately with the increase in Folic Acid. Then the sore recurred, in the same spot. So I take 3 mg Folic Acid daily now. The sore was on my gums in back of my upper front teeth and made my front teeth ache like heck! So now when my front teeth start aching I wonder if I am getting another sore. It bothers me because I feel that this must be some powerful stuff to make me get a mouth sore, but hopefully soon I can start tapering the prednisone. According to my rheumy, once the pred has been tapered off completely, there's a slow taper off the mtx, too. Although, if I did have some awful side effects from the mtx, I would immediately stop taking it. I was worried that it would be nauseating but so far, I've had no nausea at all. For awhile I thought it might be making my GERD worse--the pred already affected that-- but I'm still doing okay taking 75 mg Zantac in the morning and 150 mg at night.

I did have blood work done over a week ago and was hoping to get some good news from my rheumy, but she hasn't called so I am feeling a little worried that there hasn't been any change for the better.

I also am worried whether I am doing the right thing taking mtx if the PMR isn't ready to cease and desist! All I can say is that I am feeling much more mobile and more normal, but again, it's hard to say what is causing this. It can't be just a coincidence that it has been happening since I started taking mtx.

Anyway, that's my experience so far with mtx--I hope it helps you a little. I don't want to give anyone advice because every person's body is different. But so far, it's not bad and may even be helping.

Good

Hi ladies (& any gents reading)

Mrs O... my initial symptoms when I went into hospital were of a classic slipped disc. I had very severe lower back pain radiating into my right leg, but no major pain that I was aware of elsewhere.

The doctor's were very surprized when my MRI was clear (as was I) but then my blood results came back and my CRP was over 100 and ESR was in the high 60's & red blood count & vit B12 were well below normal, so they admitted me for further investigation. PMR was not mentioned initially as I don't think it was even considered until I was seen by the rheumatologist 3days later:roll:. it was not that I was being neglected...just he was down the list after the haematologist,nephrologist & oncologist and none of them picked up on the PMR.

All the while my back was much better thanks to hefty doses of both Difene & Tramadol with some Valium added in for good measure but every other part of me was starting to ache instead and although I had no headache as such, I felt as if someone was holding my head in a vice

The rheumy decided that PMR was the most likely cause of my symptoms and that doing a temporal artery biopsy after several days of the Difene and Tramadol would be inconclusive, so the high starting dose was purely as a precaution.

I am going to ask my GP to check my Vit D level with my next blood work, but have been taking some extra in addition to my calcichew tablets as having read all the posts I don't think it can do any harm :wink:

Eileen, like you I have read up on the Leflunamide...it really doesn't sound any more appealing than the MTX does it :?:

My right shoulder is much more mobile and pain free since the injection, so I am going to try coming down a 1/2 mg tomorrow and see how it goes.

MargaretAnn & Jim, if you are reading this I hope Jim's appointment went well last week and that you got some help. We are all rooting for you both and anxious that you get some relief from your pain.

Best wishes to all, Pauline.

Hi Pauline,

I seem to be noticing a theme of people complaining about low back pain radiating into the leg - I had that too all the time I had the back problems prior to diagnosis. I kept the back under reasonable control with lots of Bowen, physio and osteopathy but I had pain radiating down the outside of my leg, typical trace across the buttock etc for sciatic pain but never at a level that was going to be mistaken for a slipped disc. My Bowen practitioners both said they were of the opinion that it was the back muscles spasming that was doing it but we couldn't come up with a good reason for the spasms. I've had a few real \"oh my god I can't move\" episodes - the final one was 6 months before I offered PMR to my GP as a \"might it be????\". And if I'm going to have a problem now it's there. It resurfaces any time I try to walk too far or if I am having a flare. But on steroids there is a noticeable difference, there's the twinge but that's all, it doesn't go into what the Germans so succinctly describe as a \"witches shot\".

Bizarre disease - but I think it's time the docs really listened to the symptoms that we have and how PMR may be presenting. And oh for the days of the \"general medical\" consultant who directed the orchestra of other specialists. BTW - there is plenty of evidence that a few days of steroids won't invalidate the TA biopsy, signs persist for a few weeks I saw this weekend. They use ultrasound in the US but the brits don't seem to think it is good enough. Wrong accent I assume :roll:

EileenH

Hi everyone, I know I don't post much here now, but I am a little diffident as - of this moment - I'm unsure exactly what I [i:a520e616a6]have[/i:a520e616a6] got.

However, whatever the current opinion turns out to be, there is no doubt that I [i:a520e616a6]had[/i:a520e616a6] PMR to start with (I'm hoping that I will find out what my new Rheumy's opinion is next week when I see him, he wouldn't commit himself a couple of months ago). Mine, like Eileen's, was different from the beginning as I had no inflammatory markers and in all these years still don't have.

After some 8 years of upping and downing the steroid dose with all the attempts to come off it - made worse by having several other problems which were nothing to do with PMR but which necessitated high steroid doses, by this time last year I was down to 5mg daily but couldn't get below that, I had tried three times but had to put it back up to 5mg again each time. At that time a DEXA scan revealed I had osteoporosis of the spine and I had already developed type 2 diabetes and high blood pressure, all thought to be steroid induced.

With that in mind my then Rheumy decided to put me on Metho but for some months I saw no improvement (November 2009). This Spring what I can only describe as a steroid crisis happened to me, following yet another huge increase in the Pred to help out with a chest infection during Jan/Feb this year. By April this year I was sufferering severe side effects from the Pred, but without it I was pretty much unable to live any kind of 'normal' life. As those of you who know me are aware, all this was combined with moving house, too.

Finally I was hospitalised for a few days while the Pred dose was lowered and stabilised and by the time we moved house five weeks later I was on 12.5 daily but could see no way of ever getting it any down any further.

Then the Metho kicked in! My improvement in the months from June this year to now can only be put down to the Metho. The improvements seemed to coincide with the time I reached the top dose of Meth. Now, a year later I am down to 3.5mg Pred daily and hoping - no, not hoping, i]expecting[/i] to go lower still. This is something I would not have even hoped for a year ago.

I have had absolutely no problem with any of the Pred reductions (I hope I don't regret saying that, so will add - so far!) The only side effect from the Meth has been a number of mouth ulcers which have cleared up quickly with additional folic acid and in one case, antibiotics.

I hope relating this saga helps someone else decide what they should do; I do read the posts on here on a regular basis and I can see that metho is becoming more widely used (or suggested) as a 'steroid sparing' agent. If anyone has any questions which I can answer from my experience, I'm happy to.

Hi to you all, Mrs.O, Mrs.K and all the other regulars! Just like to add we are very happy in our new home and I have had just the best summer going! The previous 4 summers were spoilt by flare-ups, chest infections and even 'flu - this summer has been fantastic! I have had a couple of non-arthritis blips, but even so, it's been wonderful.

Nefret

Nefret

So lovely to hear from you, I kept on wondering how things were going with you. You deserved that summer after all that has happened to you.

If you visit the website, read Margaret's story on Metho - she has benefited as well. Also check the Vit D thread on here - just in case.

Do pop in now and then and keep us informed.

LOL

Hi again Pauline

A lot of your initial symptoms mimic mine 4+ years ago especially the back pain radiating down the right leg (still does!) but I do have a slipped vertebrae near the base of the spine. Also high CRP (mine was 157). I was also anaemic but that righted itself. However, unlike you, I refused the hospital admission (bad experience a few years earlier when I spent 16 days in there!)

It must be very reassuring for you that a couple of people have posted of their positive experience with MTX should you have to go down that road but, hopefully, with the smaller reduction in Pred dose tomorrow you will have more success - lots of good luck wishes.

MrsO