Stuck in Morocco

[PMRHortons]

Hi I’m stuck in Morocco, I was due to see my Rheumy at the end of March. I’m down to 5 mgs of pred. He was talking about swapping this out for Methotrexate. I’m thinking about trying to further reduce the pred worried about Covid-19. I only have 5mg tabs, do people think I could go down by 1/4 tabs 1.25mgs and how quickly can I reduce? I am symptom free at the moment and have been for a about 18 months

[Constance13]

I don't quite understand! If you have been symptom free for about 18 months why are you taking pred at all?

[PMRHortons in reply to Constance13]

I’m symptom free because of the pred and I’ve been reducing from 60mgs

[Hidden]

Hi, I wouldn't bother with mxt at 5mg and I would be in no hurry to reduce further at the moment. 5mg is a negligible (see link) dose and while this current issue in on full alert I would want to just hang. My rheumy is clear that 5mg downwards should be slow and steady. I had a flare after 6mg for a year and am at 7.5mg with a dmard. So please be steady until you can get 1mg to split in two or cut the 5mg into 4. I would only do 0.5mg after 5mg.

medpagetoday.org/rheumatolo...

[PMRHortons in reply to Hidden]

That’s helpful I’ll see if I can find 1 Mgs here,

[jinasc]

I would change absolutely nothing at all and definitely not drop the pred. You need a Synacthen test to see how your adrenals are.

You are out of the country and why make a change when you might run into a problem.

Just stick with it and stay safe.

I see that, although you use PMRHorton, you were diagnosed with GCA, which is even more reason not to rock the boat.

Why your Rheumy wants to put you on methotextrate to replace pred, is beyond me.

Hopefully some one else might just know.

Methotextrate is the standard treatment for RA and also for Late Onset Rheumatoid Arthritis. Do you have either?

[PMRHortons in reply to jinasc]

Yes

[PMRpro Ambassador]

Nothing would convince me to switch to mtx if I was down to 5mg on my own. mtx does NOT replace pred in PMR/GCA, whatever your rheumy tries to tell you. It may be worth risking its adverse effects if you are stuck above 10mg as I am but I couldn't cope with it - no nausea but my hair was falling out in clumps and after a month the fatigue was so overwhelming I couldn't function.

At this stage the reduction will be governed by the return of adrenal function as you slowly reduce the pred dose. The history of your pred management has as much to do with the Covid-19 aspect as your current dose. Above 5mg for more than a few months will suppress adrenal function, you were at a starting dose that would suppress it in weeks, not months. That is the risk factor if you were to contract it and become seriously ill requiring hospital treatment. It will just be starting to wake up now and the next stage is to allow that to happen.

mtx would be used to help reduction at higher doses, supposedly smoothing the likelihood of flares during reduction - which often aren't flares but steroid withdrawal symptoms and there are other ways to deal with that. mtx won't stimulate adrenal function - only removing pred will do that. If you have managed that OK so far - you may well manage all the way to zero if you go slowly enough and this is without risking adverse effects which are far more than any associated with such a low dose of pred which is less than your body produces naturally in the form of cortisol and it needs to function.

You can only reduce as fast as your body can keep up with and nothing will alter that. If you can cut the 5mg tablets into four that would be better - but it is fiddly. One of the slowed tapers would probably help with such relatively large steps down - the links are summarised here

healthunlocked.com/pmrgcauk...

And if you really are symptom-free it might possibly be worth a small experiment and trying alternate day dosing. It isn't generally recommended for PMR because you take a double dose on alternate days with zero on the other days and for many people the antiinflammatory effect doesn't last 24 hours never mind 48 and their symptoms are back on the alternate zero day. It is used in a lot of other conditions where long term pred is used and seems to avoid the loss of adrenal function because the day without is enough to provide the stimulus to produce cortisol. I used it for a few years with PMR and it was fine for me. I stopped because I was having ?GCA symptoms.

[PMRHortons in reply to PMRpro]

Thank you this is useful, I have been reluctant to accept mtx as I have read the side effects can be terrible and I am managing on a low dose of pred. I have completely changed my diet over the last couple of months which seems to me to help. If the body produces this amount of cortisol anyway does the 5mgs increase my risk if I catch covid-19 or would I have to be on higher doses? Sorry that may be impossible to answer.

[PMRpro Ambassador in reply to PMRHortons]

As I understand it it is more the history and the stunted adrenal response that is the major problem - you are probably no more at risk of catching it than anyone else at 5mg (or, to be honest, at any other dose) but it can take up to a year even after stopping pred entirely for that to return reliably in the case of experiencing a severe stress event of any sort including illness. It can be compensated for to some extent by drugs but they are far from perfect in severe infection and it appears are required even for otherwise healthy patients in ICU with Covid-19. There is no treatment for Covid-19 - they are reliant on supportive measures to keep you alive until your own immune system can respond to overcome the virus.

Do I gather from your response to jinasc that you have LORA (late onset RA)? If so, that may be a rationale for your rheumy to want you to switch to mtx - maybe he thinks that doing it now makes sense since it takes up to 6 months to take effect and on the meantime pred is doing a good job of managing any symptoms you may have. Pred is used for longterm management of RA in some cases - it doesn't, however, act as a DMARD (disease modifying antirheumatic drug) which reduces the impact of the disease on the joints and avoids the disability so long associated with RA. The reason it is seen so little nowadays is due to mtx which has been the first line approach to RA for over 30 years.

[PMRHortons in reply to PMRpro]

My diagnosis is Hortons disease and PMR but my symptoms have never been clear cut at the moment I’m seen by a Medicin Interne can’t remember the English word for this professional. He says I have atypical PMRGCA

[PMRpro Ambassador in reply to PMRHortons]

Horton's is just the ancient name for GCA and still used in France. He's a physician, specialist in internal medicine. According to some rheumies most of us have atypical PMR - but we aren't sure what is atypical as it is a common enough clinical picture!

[PMRHortons in reply to PMRpro]

That’s good to know

[SnazzyD]

5mg and below can be frustratingly protracted because of adrenal function sputtering into life, with the risk of adrenal crisis if you go too fast and that can be life threatening. So if your PMR is under control, this is the over-riding issue and it can’t be rushed. I felt really rubbish at this stage so reduced 0.5mg per 6-8 weeks then 12-14 weeks depending how I felt.

As for Methotrexate, I never understand why docs want to add in a drug with clear risks when the PMR or GCA appears quiet and the dose is as low as 5mg. I’m not a doc but I don’t see what difference being under 5mg would make if you got COVID given that they worry about higher doses that truly immunosuppress you. Not worth risking the adrenal insufficiency, especially if you are away from home.