pmrgca

[KathleenJohnson107]

Hi I am new to this site . I suffer with pmrgca I have been taking steroids for the past 12 months now . I have reduced my steroids but cant seem to get below 10mgrm without being in a lot of pain . I have been in touch with my consultant who has advised me to come off my steroids and start taking MTX . I have heard that these tablets come with a lot of side effects and just wanted to know if anyone else has had the same problem as me or if anyone is taking the tablets and if so how they feel and if it has helped at all with the condition . Thanks .

[PMRpro Ambassador]

If what you have is PMR then mtx won't replace pred - taking the two together may allow you to get to a lower dose of pred. If mtx replaced pred they would use it for PMR instead. Unless your consultant has decided maybe it isn't PMR but LORA (late onset RA). Then you would use mtx as a first line approach.

However, there are several considerations to your 10mg dose which, it would appear is the "lowest dose that manages the symptoms as well as the starting dose". Maybe you are one of the people who only absorbs 50% of the pred you take - some of us are able to absorb 90%. It is called the "bioavailability" and obviously someone who absorbs 90% will need less starting dose than someone at the 50% end.

The amount of pred you need is directly linked to the activity of the underlying autoimmune cause of the symptoms we call PMR - it often takes more than a year to calm down. In the meantime you need more pred.

It is also linked to the amount of activity you undertake - the patient who has to work almost always needs a relatively high dose. If you are able to adapt your lifestyle a lot - you can manage on less pred.

And finally - how are you reducing your dose? And so far, how many flares have you had? If you reduce too far or too fast you risk a flare - and that means both time-wise and the size of the steps you take. Many people have said they couldn't get below (say) 10mg - but when they tried a much slower approach they did manage to get significantly lower. And if you have flares and get into a yoyo pattern with the pred dose - it makes the next reduction even harder.

My own personal view is that there is no point trying mtx and adding in a potential extra layer of side effects unless you really have been struggling for a while or the doctor decides perhaps he was wrong (except it is unlikely he'd admit that). I would always advocate trying a really slow reduction of this sort first:

healthunlocked.com/pmrgcauk...

Many have succeeded with it - and other similar approaches are available.

On the other hand, there are some people who have found they are able to manage on a lower dose of pred when taking mtx. If you can take it, it doesn't lead to any side effects and you are able to reduce the pred dose, fair enough.

All I can say is that it took me well over 2 years before I got reliably below 10mg and I had had a major flare in the meantime. Since then I have been down to below 5mg, had a flare and back to 15mg and am now back to 6mg. But I'm lucky - my doctors don't panic about pred dose.

[DorsetLady PMRGCAuk volunteer]

Hi,

You don't say what dose you started on, that may give us an indication of how much and how quickly you've reduced.

As PMRpro says you've probably got to "your" optimum dose for the time being. If so, then 10mg is the dose you need.

I've never been on MTX, but like PMRpro wouldn't particularly want to add another drug into the mix when It may not be necessary, just a Rheumy trying to rush things.

Bit more info would probably get you some more pertinent advice.

[9lives]

Hi

Sorry to hear you are struggling to reduce, I know it's very frustrating.

I can't give any medical advice, only my own experience.

I too strugged at time to reduce, but over time have learned that you have to listen to your body. I now reduce very very slowly following the advice on this site.

It has taken me a few attempts to get down to my current dose of 7.50mgs.

I was kinda stuck here for a while.

So had to increase up 10 msg. and try again, it took me three attempts to get down to 7.50mgs.

But now I'm here my body is now ready. A few months ago I was in pain at 7.50 msg. Cos my body wasn't yet ready.

That's just my experience so hoping that helps

Good luck to you x

Carole

[KathleenJohnson107 in reply to 9lives]

Hi Carol . Thank you for your reply.I am feeling very stressed at the moment as I have been on preds for 12 months reducing from 40mgs down to 10mgs with no problems at all .Pain was minimal and to an extent I could get on with normal life .Just tried to drop very slowly by half grm a month. 3 weeks ago 1 week into that month i got really severe pains in my upper back . Went to my GP and had bloods taken and results were my ESR and CRP were elevated . Waiting at the moment to see my consultant at Blackburn . He is on holiday at the moment but the message I got back was he will see me in clinic . He has said he would like to change my meds to MTX. I'm not keen on this approach because of the side effects. Just interested to know if you varied your dose after discussions with your consultant or did you manage to do it on your own .Did you increase your dose gradually or just start taking the full dose at once . I would like to stay on preds like you have and just see what happens but don't know if I will get that choice .Thank you . Kath .

[9lives in reply to KathleenJohnson107]

Hi Kath

It's so soul destroying some times when you start to feel better and then a slight decrease can make the all the difference between getting on with life and awful pain.

Then we get anxious and stressed about it, which in turn fuels the fire of pain and stiffness urgh!!

I could be that you have got to a level that the steroids are controlling the inflammation and you may have to be here for a while until your body is ready.,

I started on 20 mg may 2016 for three weeks then was told by Dr to decrease to 15 mg for 1 month, then to gradually decrease at 1 mg per month.

This I did but when I started to decrease 1 mg per month this was when I would get a flare up. I saw Dr again and was told to go back up to last dose and then start decrease again. Still I was getting flare ups and very bad muscle cramps by now which were quite excruciating. In the end I paid privately to see a rhummy as my Dr had not even suggested this!!!

This was in November 2016.

The rhummy was brilliant he did loads of test scans etc, and luckily all was clear, to be honest the pain was so bad I was beginning to think the worst.

Anyway he suggested a much slower reduction and he was very reassuring as he is top in his field so I felt in good his hands.

Since then and finding this site things are not going to bad, I would say I have been through the worst of it, I hope, and feel I have turned a corner now.

Mr Dr is very supportive and I have showed her all about the DSNS regime and this site, so she just lets me get on with it. I see her around every 4 moths for blood test and just an up date.

I only saw the rhummy twice as felt it was not necessary for more visits.

Sorry for long post but wanted to try to explain a bit about my journey.

So reducing I decide first of all that I have been pain free / stiffness for at least a couple of weeks or so,

then I start the next day as follows , but I reduce.5mg at a time over two days, if you see what I mean,

Day one New dose ( 7mg) say for instance

Day two old dose (8mg ) which is my current dose

And rotate like this for about 2-3 weeks and if I have no side effects I will continue on new dose only for about 2-3 weeks, then if still no side effects I start again with new dose old dose..

I learned from this site and just adapted to suit me. Don't know where I would be without this amazing site and all the lovely people on it.

As for increasing, I would go up about 2.5 mg. but depends what your current dose is.

my last flare was in April 2017, but only slight pain in hip and Not too unbearable just had a slight limp with it.

I was down to 7.5 mg. so I upped to 10 mg.straight away and after a few days the pian and Stiffness started to ease, so now today I am back to 7.5 mg and no side effects xx

But remember we are all different and our bodies heal at different rates and symptoms vary from one person to another.

I don't know any thing about MTX I'm afraid but I'm sure others on this site will help.

Someone said why do you go up so high a dose when you have a flare, and I explained that if you were trying to put out a raging fire you wouldn't poor a cup of water on it would you? ,you would get all the buckets and hose pipes on it, then once the fire is under control you can manage it again.

Best wishes to you, unfortunately it takes as long as it takes.

That is the ONE thing that I have learned here , so try to be the tortoise not the hare xxxx

Best wishes

Carole x

[KathleenJohnson107 in reply to 9lives]

Hi Carole , Thank you so much for your reply , you have given me a glimmer of hope that one day I will be able to say its gone . I am in the process of increasing my preds . Not pain free yet but I will keep trying till I am . I am like you at the moment , cant believe that it is still PMR . The pain feels like I have pulled all the muscles in my back and find it wasn't this painful when I first started with it 1 year ago . I will let you know how I get on . Thank you once again . Kath x x

[Nap1]

I am not finding a way to reply or see replies on the website. Has something changed? This is the only way I can reply Is by responding to a post from HealthUnlocked.

[PMRpro Ambassador in reply to Nap1]

Have you got logged out by some chance? It sometimes happens spontaneously and then you can read but not reply.

[Nap1]

It's ok now. Thanks.