DMARDs -biologics v non-biologics as a 'sparer' in PMR steroid reduction - advice needed

[Fatsiajaponica]

The above looks a bit technical but I am in a bit of a fix following a review at Moorfields Eye Hospital. I recently had an emergency with my eye in July, diagnosed as Uveitis and prescribed 60mgs pred. That was reduced after inflammation reduced and eye ok. Now Moorfields diagnosed secondary glaucoma caused by steroids following increased pressures in the eye. My blood sugar was 11.5, it was 4 hours after pred and I had eaten half a sandwich 30 minutes previously. I am working on low carbs and due a HB1C ? test in a week to see if that has helped.

I have PMR, diagnosed in May this year and was already on pred, managed largely by me(with help from the forum) with the odd call from GP after blood tests. I had a flare (affecting eye and PMR)a few weeks ago having tried to reduce too quickly and am now on 18mgs,staying for a further 2 weeks to be sure before reducing to 16 mgs.

The consultant at Moorfields is concerned that I have so many side effects from the pred he wanted to start me on methatrexate and reduce the steroids. I declined the offer, advised that I was actually seeing the GP in 2 days and will formulate a plan. They also wanted me to be referred to a rheumatologist (that would be the one I discharged myself from initially,) not because she was poor but because she was taking months to decide if I had PMR with endless tests etc.. and I couldn't wait , becoming increasingly debilitated and with a husband with Parkinsons. Went private for the diagnosis, I was classic in presentation and 20 mgs pred afforded a miraculous improvement. He is giving me 6 weeks to see how I go on reducing but this isn't long and he isn't now prescribing the steroids anyway.

So, after all that I am caught between two disciplines, the GP may agree with them, maybe not but I feel sure that the rheumy would?? They wanted me to refer to her, I declined again.I need a plan and information. I have seen on here that Methotrexate may not be helpful and adding another drug with it's own side effects doesn't fill me with joy. Also, people on the biologics appear to fare better so if that is the case should I ask for those if I am unable to avoid this path?

Personally I would prefer to very slowly reduce the steroids despite all the issues.

Thank you in advance. x

[Happybubbles]

it is very tough being caught in the middle. I’m sure someone more experienced will answer, but I will share that I suffered a lot of complications with prednisone (much worsened glaucoma, increased blood pressure and UTIs). I was optimistic I could just taper prednisone on my own, but everything worsened and blepharitis joined the party. I reluctantly went on oral methotrexate with daily folic acid back in January and have done very well on it. My prednisone is now at 2mg a day and I’m only suffering from the ongoing glaucoma issues, which the dr is hoping disappears when I’m fully off prednisone. Biologics often aren’t prescribed until you’ve given methotrexate a chance because of the cost.

[DorsetLady PMRGCAuk volunteer]

Increased pressure in eyes are not unusual on Pred, but they do usually reduce as you lower the dose…and you don’t say what the figures were - did he say? Or prescribe any medication? If not, then they aren’t that bad… and not glaucoma as such, just increased pressures.

Mine did increase initially, and were monitored for few months, but went back to normal levels after a while, and never caused any problems.

Agree, better to try. and reduce without MTX, and as you have PMR not GCA I doubt you will be prescribed a biologic in UK… and if you are lucky enough to be so, you do need a Rheumy to do that.

[Fatsiajaponica in reply to DorsetLady]

Thanks DL. The pressures at worst were 28 in right and 21 in left. I am on drops for the dodgy eye and pressure down to 13. Having read the other replies I get that biologics are off the table.

[DorsetLady PMRGCAuk volunteer in reply to Fatsiajaponica]

Good about the pressures reducing… and yes agree biological are highly unlikely.

[Koalajane]

Just after my PMR diagnosis I was told I had glaucoma and put on drops. At my next appointment I saw a consultant who said he didn’t think I did have glaucoma but perhaps ocular hypertension. He checked the thickness of my cornea and they are in fact very thick. They have to use a different piece of equipment to do the. Test or knock 6 off my right eye and 4 off my left eye on the usual puff test.

I have macular oedema and I was given a steroid implant in my right eye which I was told can raise ocular pressure so whilst that is in and dissolving I take eye drops for the pressure and have regular checks.

[Fatsiajaponica in reply to Koalajane]

Thank you , hope it all settles soon.

[PMRpro Ambassador]

There is no guarantee that MTX will get the pred lower and even if it does it can take up to a year to see the difference. But you do have to try to find out. I suppose it is possible the opthalmologist can prescribe it - but a GP can't, you need a rheumy. You need liver tests first and will need to be monitored closely. It works brilliantly for some - but only a small proportion of PMR patients. Happybubbles is one who shows it DOES sometimes work and so it is worth trying to see 1) do you tolerate it, 2) does it work for YOUR PMR.

Most people with raised pressures due to pred manage them well with drops - raised pressures alone is not glaucoma so has the eye chap found other problems? They also usually fall as the pred dose falls and most people allowed to taper sensibly will get lower reasonably quickly.

It is possible that the eye specialist can swing the use of and prescribe the tocilizumab but I wouldn't hold out too much hope. It is what really does work but even it doesn't necessarily get you off pred altogether and anyway it isn't approved for PMR anywhere. and though other countries use it, it isn't an option in the UK for a rheumatologist to use in PMR. Even in GCA you only get a year.

[Fatsiajaponica in reply to PMRpro]

Thank you PMRpro, very helpful. I am really hoping that the GP will support me in slowly reducing. I think I will know if I need to give MTX a try as I am very fed up with all the side effects of pred but PMR was much worse and that is a risk I am not willing to take at the moment. At least I can function now if very tired and needing to cut back on most things.

[Smithie49]

Hi. I've had PMR since June 2021 and had reduced prednisolone successfully to 7.5 mg when my rheumy added methotrexate which I started in Jan this year. After a few weeks, and folic acid 6 days a week, I've had no unpleasant side effects. However after reducing to 6.5 mg pred I was becoming increasingly stiff and the last reduction to 6 this has become unbearable. I'm on holiday with my daughter in the USA at the mo and, as I do not want to spoil my time here, have upped by an extra 5mg following the flare protocol recommended by this forum. Yesterday I was able to do a brisk walk without problems. I see the rheumy again when I return so it will be interesting to see whether she thinks the methotrexate is doing anything. I hope things work out well for you.

[Fatsiajaponica in reply to Smithie49]

Thank you Smithie, sorry to hear that you have stalled somewhat in your reduction and hope you get it sorted when back home. Best Wishes for the rest of your holiday.

[PMRpro Ambassador in reply to Smithie49]

It may be doing something - but quite obviously not enough to allow you to taper further than 7mg!!! Just say no - it is allowed though some rheumies do get a bit iffy ...

[Smithie49 in reply to PMRpro]

😊😊😊