WHATS THE DIFFERENCE....???

[rachelbell]

Hi

I see on a few posts that doctors seem to like to get people off presdnisolone to mexthoxotrate why is this and whats the difference please🧐

[piglette]

Methotrexate supposedly can help you to reduce the pred more easily. Many doctors are paranoid about steroids and all the dreadful side effects, so they give us pred and then the next minute they want us to reduce to zero like bats out of hell.

[PMRpro Ambassador]

Many doctors are terrified of pred - some of the things they say would make your hair curl! For some reason best known to themselves they believe it is a better and safer drug. I won't get into that argument - but the critical point is whether it works for PMR surely?

Pred does - methotrexate might but there are no guarantees. It works very well for some patients, for the majority it might gain a couple of mg advantage, but at the expense of taking 2 heavy duty drugs. There are no reliable large scale studies and the original study that suggested at the time that it could result in a lower cumulative dose after a year seems to be what they know about - the follow-up isn't so popular. Five years later they revisited the study - and that benefit in cumulative dose hadn't also resulted in any improvement in steroid side effects. which really does beg the question: Why bother?

Many rheumies also believe that MTX is a very well tolerated and effective drug but even in RA that was found to not be true. Rheumies thought most patients liked it and did well. Patients reported quite different opinions. About a third were unable to tolerate the adverse effects and stopped taking it. About a third stopped because it didn't work for them after 6 months trial and the other third said it worked well and the side effects were tolerable.

PMR is not RA. There are probably some patients diagnosed as having PMR where in fact it is some form of inflammatory arthritis and for some of them the MTX works. The trouble is that you cannot forecast who is who so you have to try it to find out which you are. I think that is fair enough - but no patient should be forced to cary on using it if it makes them feel unwell.

[MrsNails]

A lot of Consultants like to use MTX as a Steroid Sparer - ie getting more benefit from the Pred at a Lower Dose & certainly it did the trick for me the first time - l went from 18mg to 7.5mg in monthly reductions only to be rudely interrupted by Breast Cancer.

I have been on MTX twice since then & when l stop it my condition deteriorates - l’m currently on 12.5mg Pred but having issues - l’m not the best l can be within the constrains of PMR

I fear the time has come for another serious review but l’m off on My Hols on Friday so it’s something for when l return……

Generally though - l think more & more Doctors are prescribing MTX for PMR

[autumnlass in reply to MrsNails]

Interesting post Mrs N … I’ve just had a 3rd flare after reducing Pred to 7.5 from 8 mgm, so back ups to 15 and on reduction to 10 mgm in 10 weeks my GP says - who is meanwhile going to get some advice from a Rheumy. I’m sure it’ll be MTX that will be suggested. Am a bit apprehensive but good to hear it did well for you.

Have a lovely Celebration Holiday!! 🎉🍾🎊🥳🥂👏 and lots of carefree fun! xx

[PMRpro Ambassador in reply to autumnlass]

Your GP is probably overreacting - all you have done is overshot the dose you need: the lowest effective dose. You aren't reducing relentlessly to zero, and repeatedly flaring at a similar dose tell you that it is there or thereabouts. Our usual suggestion is to add 5mg to the dose where you flared for 7-10 days (less will do if the symptoms go straightaway) and then drop straight back to just above where you flared, If you were good at 8mg, that is probably what you need. But straight to 10mg puts you way ahead of what the doc is suggesting.

Going back to the start won't help, you need a dose that works for that day's batch of inflammation. What you needed 3 months ago isn't the same as what you need today.

[autumnlass in reply to PMRpro]

Thank you for your reply PMRpro. This current 3rd flare occurred just literally within 3 days of completing a 7 week DL reduction, going from 8 mg to 7.5 mgm. Alas it wasn’t meant to be so I added another 5mgm which didn’t really work and then another 2mgm making it 15 mgm. Coincidentally there was a phone chat review with GP booked and he gave me the plan to stay on 15 for 2/52, 14 for 2/52, 13 for 2/52 .. and continue as thus until I reach 10 mgm during which time he would get a rheumys advice and another phone chat in December I think.

PMR pains and fatigue continue and I don’t do very much. 😔

[PMRpro Ambassador in reply to autumnlass]

Fair enough - but it does seem a long time to get back down again. And it really does show that 8mg is your limit.

[autumnlass in reply to PMRpro]

Thank you PMRpro - yes it is a long time to get down again. The same instructions for the 2nd flare too. I remember feeling tempted to reduce each stage to a week back then but didn’t.

It does seem that 8mgm is my limit … I guess GP wants rheumies advice as to whether he should put me on MTX to reduce the Pred more quickly and the 2 year umbrella for PMR?!

[PMRpro Ambassador in reply to autumnlass]

The answer to that is NO! Well - it would be my answer ...

You are struggling because they are overreacting and giving you far too much pred to deal with the problem. Most of this could be avoided if they thought a bit and accepted it isn't hell for leather to zero but titrating the dose to find the right one for you,

[autumnlass in reply to PMRpro]

I am totally with you on everything you say! I believe you know far and away more than they do!

I am tempted to see Prof Watts privately and get his opinion. When daughter was diagnosed with RA 7 years ago her GP sent her to see him on the NHS. He’s retired from there now, and only works privately.

I would have to get my GP to do a referral letter though!

[PMRpro Ambassador in reply to autumnlass]

You might not - some do private work without a referral.

[autumnlass in reply to PMRpro]

Thanks PRO. I did ring up private hospital and they told me that I would need a referral letter from GP. However that’s not going to daunt me! I will, and it will save GP a job anyway! 🙂

[DorsetLady PMRGCAuk volunteer in reply to autumnlass]

agree with PMRpro - PMR can, and does last a lot longer than 2years -snd why add in MTX which is not proven for all cases.

It would be so much easier if doctors just gave Pred a chance to work -and a thd correct dose required.

[autumnlass in reply to DorsetLady]

I totally agree with PRO as I’ve just posted her a reply to that effect.

GP wanted me to be on 7 mgm by August - I knew that was going to be impossible to do!

Thanks DL too. 🌺

[Pippah45 in reply to autumnlass]

I struggled to reduce from 7 and have been stuck there for over a year I think! Now I am reducing by .25 and it has been going better - when I am feeling brave the next step is 6. Its not to hard to cut the pills with a cutter and it might be worth a try. I didn't care for the up and down thing. Flares are definitely no fun! Good luck.

[autumnlass in reply to Pippah45]

Thanks Pippah45. Are you following one of the reduction plans, or do you reduce by .25 weekly or how? Well done and thanks too for the encouragement. 🌺

[Pippah45 in reply to autumnlass]

I have the reduction plans but.... I am doing about .25 a month flying by the seat of my pants as per usual Having stuck with 7 for around a year - I had a new hip and a few things in that year and when I went to 6.5 from 7 it was horrible. I was one of those who didn't think I would ever use steroids but to save my eyesight - anything! I am fortunate that my Rheumie handed me back to my GP before Covid and my GP doesn't appear to be at all interested! The Pharmacy regularly gives me the wrong prescription but I do feel I am in charge. My sister is on a similar journey except she keeps going too fast and having flares - I am just bumbling along in my own time. It's my body and I try to listen to it! About a year ago the chief pharmacist said he was reviewing my meds and would I come for a blood test. Well Pred is the only med they prescribe for me but I do self treat on NDT for Hashimotos. So I assumed the test would be for the Pred. Not a bit of it no CRP or the other one but they tested the thyroid - which was useless since the blood test wasn't first thing in the morning and I had taken my meds! So I made them redo it properly!

It's not entirely by the seat of my pants of course PMRPRO and the others are invaluable with their advice.

[PMRpro Ambassador in reply to Pippah45]

Which slightly illustrates why I have the opinion I do of pharmacists being given the role of monitoring meds. You have to know enough about the diseases you are testing for AND how the tests are done properly.

[Pippah45 in reply to PMRpro]

That is soo true PMRpro. I have devoured many books on Hypothyroidism and am pretty confident at self treating. I sm a mere beginner with pmr and gca and and 😀 Very Grateful to this forum.

[PMRpro Ambassador in reply to autumnlass]

However you go about it - .25mg a WEEK is pretty speedy once you get to lower doses if you are having difficulty,

[autumnlass in reply to PMRpro]

In a dilemma as to whether I should ask GP to reduce from the 15 mgm he suggested and 2/52 down to 10 mgm which seems a long haul more rapidly? Any thoughts?

[PMRpro Ambassador in reply to autumnlass]

I think if it were me I would try it - if you feel it too much you can go back to halfway. 15/12.5/10 is a normal sort of approach and if you can't manage at 2,5 step then you can go back and try something a bit less but if it works - great.

[autumnlass in reply to PMRpro]

Thanks very much PRO for your reply and reduction advice. I’ll give it a go & let you know. I have an appt to see rheumy on 14 September.

[Jane424 in reply to autumnlass]

I am trying to reduce pred from 7 to 6.5 and tice ha to go back up again. Frustrating. Is it OK to stay t 7 as I do well there?

[autumnlass in reply to Jane424]

Hi Jane424 - I think it’s wise for the experienced volunteers to come along and advise you - I know they will give you the right advice. Although I’ve had PMR for 2 years I’m still finding my way through this painful and complicated maze. All the best to you. 🌺

[Jane424 in reply to autumnlass]

thanks so much!

[Pippah45 in reply to autumnlass]

One of the things that helped me was Kate Gilberts book where she explains the Average Lifespan of pmr is 4 years or maybe that is with gca as well not certain she said 4 years i think it was 4. something but it means there is no rush! It seems Rheumies and GPs havent read about this time span.

[PMRpro Ambassador in reply to Pippah45]

The median duration of PMR is said in a study from some top PMR experts at the Mayo to be just under 6 years - that means half of patients are off pred by 6 years, the rest need pred for longer. Even Prof Dasgupta from Southend UK says he keeps patients st 2-3mg long term as it stops relapses - which I think is a tacit admission that PMR is not a short-lived problem. And Prof Mackie from Leeds UK speaks of "the 2 year myth of PMR". I think that pure or cranial GCA is often shorter than a version mixed with PMR symptoms and LVV or extra-cranial GCA.

[DorsetLady PMRGCAuk volunteer in reply to Jane424]

Yes, it is frustrating, but also telling you that you need 7mg at the moment, won’t be forever, but is right now..

Just stay at 7mg for a bit longer, no harm, and then give it another go in a few weeks,and if you aren’t already maybe use a slower tapering regime - couple here - take your pick

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

Once you get to the level you are at, adrenals need to start thinking about working again, that sometimes makes things a bit more difficult, so slow and tiny steps are the answer….for both adrenals and illness.

[arvine in reply to DorsetLady]

my endocrinoligist has advised, no point in doing a test for adrenal glands until I am off prednisone?

[DorsetLady PMRGCAuk volunteer in reply to arvine]

As we know - different countries, different doctors, different opinions...many in UK do get tested at lower levels, usually has to be around 3mg..

[PMRpro Ambassador in reply to arvine]

Ti get a reliable reading yes - but should you let a patient continue to reduce who has absolutely no residual adrenal function without educating them and providing an emergency kit?

[PMRpro Ambassador in reply to Jane424]

Stay there for a few months (2 or 3) and then try again. At the moment you need 7mg, by them and with the stress of feeling you HAVE to reduce taken away things may change,

[Pippah45 in reply to Jane424]

I stuck at 7 for about a year and kept failing at 6.5. Someone on this great forum suggested 6.75 and that worked my next reduction will make it 6 going down slowly in .25s. I am on holiday at the moment touring in a caravan so may leave the reduction till i get home. I think the thread is turning into "Whats the rush"!

[Jane424]

Thanks - Have a great holiday. Jane