Augustas

[Augustus-6]

Ive been reading about problems reducing below 5 mg pred. I had pmr and refused pred but had a steroid jab in france which lasted three months at a time. Years later it morphed into rhumatoid arthritis altho i still think i have pmr as well. Again i was scared of all these dmard drugs for arthritis and used combination of ibuprofen/paracetamol and 6 monthly steroid shots. Two years ago my shoulders and wrists were so bad i couldnt drive so i went to fam doc for a shot back here in uk but he had run out so he gave me high dose pred pills reducing and im stuck on 5 mg ever since. I never go to rhumatologist only for original diagnoses for 15 years from diagnoses but the fam doc must have referred me and i was given an app 6 months on these pred tabs. Its very difficult in uk i get no help other than these dmards which i refuse. Ive now been on pred 5 mg for two years and i cant reduce if i go to 4.5 i cant move!! Im worse on pred with a flair than pre pred days and thers no help. I increase to 15 mg then back to 5mg in days then to 4.5 then flair the problem is ivsometimes flair on 5 mg Does anyone know if u can have a shot of steroids and drop low dose pred rather than try and taper as its so difficult. With all the terrifying side effects of pred i would like to get back to the pre pred days . Thank you.

[SheffieldJane]

The way your disease responds to Pred does not seem typical for what I am accustomed to reading on here. I have read that the symptoms of PMR and RA are often mistaken for each other in the initial phases. R A being regarded perhaps as the more serious and chronic disease. I think it would be that disease I would want to research.

I have scarcely any knowledge of RA but I know that with PMR, I would be quite ill with a yo yo type approach to dosing. I find that even 1 mg of Pred has a profound effect on my well being.

Your questions are too complex, I think, for PMR/GCA sufferers on here to answer because your condition sounds altogether more complex. You really need aRheumatologist whom you trust to get to the bottom of this. Where are you in the UK ? Perhaps someone here could recommend one.

I wonder if you would be a candidate for Actemra? This appears to be a drug that enables one to get off Pred more quickly and has been developed I think for RA sufferers but is given in the UK for GCA and in special circumstances in complex PMR cases. It is apparently very expensive. My knowledge is sketchy but I felt compelled to write as you are suffering so much. I wish you well in your endeavours to find ultimate relief for your symptoms.

[DorsetLady PMRGCAuk volunteer]

Hi,

Really think you need to see a Rheumatologist and get advice, your self medicating sounds a bit iffy to me.

Not sure I really get your problem with Pred, at 5mg which you seem to imply manages your symptoms there is very little in the side effect line, whereas a mixture of paracetamol and Ibruprofen that is not monitored by the GP there could be. In many circles 5mg is considered a low dose.

I think your comment ‘with all the terrifying side effects of Pred’ is a bit OTT (you seem to have a real or perceived aversion to it)- certainly some are not very nice (I know, been there, started at 80mgs) but they are not terrifying. Plus they do give you back a reasonable quality of life.

[Augustus-6 in reply to DorsetLady]

thank you for your comments.... I was happy to stay on 5 mg but the rhumy wants me on methotrexate and i dont want it. I have develpoed what feels like angina and i wondered if pred is bad for the heart thats why i worry about it.

[DorsetLady PMRGCAuk volunteer in reply to Augustus-6]

Hi again,

As you have RA have you looked at another HU site, link

healthunlocked.com/arthriti...

you might find more advice on that.

I have no personal knowledge of MTX so cannot help on that - sorry, but of Pred I have plenty. Never heard that it exacerbates angina, although it can raise your blood pressure, so get that checked if you don’t already. But as we’ve all said at 5mg you shouldn’t be getting any side effects - PMRpro has given you a link that will hopefully allay your fears.

We all know that Pred gives side effects, certainly at high doses, but then most drugs have some negatives, you just have to manage them, and they can all be managed.

I was undiagnosed with GCA for 18 months until I lost my sight in one eye, a quick trip to A&E and it was diagnosed and I was started on 80mg, fortunately my other eye was saved, so I’m all for Pred. But that’s not to say I sailed through the following years, but I know it saved me losing all sight, and gave me my mobility back. It’s not all bad.

Hope you find a resolution soon.

[PMRpro Ambassador in reply to Augustus-6]

If you aren't on RA drugs, the RA itself can cause damage to your cardiovascular system when it is untreated. It really isn't a case of pred/RA drugs bad, no drugs good. It is far more complicated than that.

[Augustus-6 in reply to PMRpro]

I know an 80 year old lady whos had ra in its most extreme form for 60 years most of those years she lived on aspirin and pred. I guess it the nflamation that damages the arteries i take 5 mg pred and your likk(thankyou) seems to suggest and as you say the side effects are low on 5 mg. the modern dmards and biolics are scary with pred we have 50 years to look at but not so with modern unknown coctails.

Thank you for your help nathen

[PMRpro Ambassador]

What terrifying side effects of pred? At 5mg they are minor - many doctors seem to have a built-in terror of using them but while the high doses used for GCA are a different matter, recent research has found it to be unjustified for PMR-level doses:

practicalpainmanagement.com...

Five mg of pred has far fewer long term adverse effects than using NSAIDs or paracetamol ad nauseum. Two years at 5mg is really nothing to worry about. In 8 years on pred for PMR I have barely got below 5mg and I have no long term problems at all. Many of the so-called pred side effects can, as the article suggests, happen to us anyway and I certainly experienced several of them due to 5 years of PMR without ever being on pred.

Having a shot of steroids won't change anything if 5mg is what you need to manage your PMR symptoms. PMR is a chronic disease which lasts anything between 2 and 6 years for 75% of patients - and as long as the underlying autoimmune cause of the symptoms is active you will need pred to clear out the daily batch of inflammation. If you have a depot injection of steroid then you will get short-lived relief, up to a couple of months usually if the dose was high enough. But when it wears off the PMR symptoms will return. And it isn't a case of the steroid is there for a one-off few hours and achieves its magic for weeks. It releases steroid into the body all the time at ever decreasing amounts and replaces the oral dose. That is the only difference.

And by the way - the other 25% of patients have PMR or even longer, they don't get off pred in under 2 years. So you haven't had it very long so far.

[GOOD_GRIEF]

Hi Augustas:

Let me open this comment by saying that I am a Yank, and therefore am very direct in my comments. I'm not being mean - just straightforward.

Nothing you are taking is treating your condition, whatever it is. You are only treating the symptoms. Pred does not cure PMR. It controls the inflammation, and we balance the dose of pred against the amount of inflammation until (eventually, hopefully) PMR burns itself out. By itself, PMR does not cause permanent damage to bones, joints or other systems in the body.

RA is quite different. Pred will mask/relieve some of the symptoms, but untreated, RA destroys your joints, can get into your spine, lungs and other organs.

If you do have a type of RA, you need disease modifying drugs to slow the progression of the disease and perhaps achieve remission. Yes, the side effects listed for most of these drugs are terrifying.

But the side effects of untreated RA are far worse than the DMARDs. Think wheelchair. Permanently.

You need to find knowledge, and you need to find a good treatment team.

Here's a link to NRAS which should help you get started.

healthunlocked.com/nras

I understand how afraid you are. But you can't let that stop you from getting the best help available.

We'll be thinking of you.

[Augustus-6]

Firstly i love Americans ive lived in the usa. I did have pmr and it morphed into ra. Ive met people who have had pmr that has not burned out and they have had complications. I have a friend who has had it for 20 years also another who has lupus for 10 years both are on pred. I have only ever taken pred in the early years by shots and for 10 years nothing but nsaid then 2 years pred. I have had ra for 15 years i was diagnosed with two others for severe ra the other two were much younger than me ie 35 and 45 they both went down the dmards both didnt improve the younger went blind then wheelchair i now has died the older lady had to give up work and the last time i saw her she was in a terrible state. I was 56 at diagnoses my bone scan was good and when the inflammation eases down i can run and move like i could in my 20s. Pred has been around for over 50 years we know the dangers these newer drugs im not so sure about. With pred i manage it myself i dont have endless blood work. I would like to get off pred i take 5 mg higher if i flair to high. The lady with lupus also takes 5 mg abd when she told the doc she was pregnant he said thousands are on pred 5 mg is fine and she had a healthy baby even though shes been on pred for 10 years. Im 70 so im getting towards the end any way. Do u have pmr or ra? My grandfather had ra at 18 took no meds as there was nothing but aspirin died at 87 no worse than in his early years he was always in pain and died of heart attack. Illness and drugs is an industry it feels very unnatural to me u r ofcourse right tht pred wont cure but will aby drug cure?? Thank you for your help though.