Pred, MTX, and reducing

[tiasbear]

I started prednisone (again) @ 15mg. and also MTX. After 1 month on pred I'm supposed to reduce to 10mg. Is that too big a jump to taper, or is it different since it will only be a month that I've been on 15mg??

[Pred60lady]

Hi sounds like a massive jump to me in a month but you need to take your Consultant's instructions or GP as normally you have to taper off very slowly. I am on pred and am reducing to 7mg and have been on methotrexate for 8 months which has helped me a lot. The only difference between us is that i'very been on pred for 7years.

[tiasbear in reply to Pred60lady]

Yes, I thought it a big jump too. I was on pred for 3 years, tapered down to 0, and back on it 5 months later.

[polkadotcom]

It sounds like a recipe for disaster to me. Could you contact him and say you aren't happy with it? Or perhaps go to 12.5mg at first and then down to 10mg?

[whisperit]

I had the same direction from my own rheumatologist at 20mg - his basic approach is to reduce by 5 mg every 2 weeks.

However, I had a bad time coming down from 20 to 15 and then 10 under this plan, with daily episodes of shaking, sweats and nausea. This might have been coincidental, but I do think it probably was linked to my body being unable to cope with such abrupt changes in pred levels.

I discussed it with my GP and we agreed that he would prescribe 1mg and 2.5 mg tablets, so that I could taper down more gradually at my own discretion.

As you probably know, once you get below 10mg daily, the taper needs to be slower anyway.

Hope it goes well anyway.

[DorsetLady PMRGCAuk volunteer in reply to whisperit]

Hi whisperit,

No coincidence, but definitely steroid withdrawal symptom aka cold turkey. Not recommended for anyone methinks!

Hopefully future reductions done at YOUR pace will be easier.

[whisperit in reply to DorsetLady]

Thanks for that confirmation, DorsetLady! The frustrating thing was that the symptoms were so severe that I was admitted to hospital twice - once at my GPs insistence, and the second time after calling the rheumatology helpline - and yet even when I suggested that my steroids might be the cause, *every* medic I saw dismissed this suggestion. I was discharged both times without any other cause being found.

It is only now, after many months of hard experience, that I realised that my intuition was correct!

[DorsetLady PMRGCAuk volunteer in reply to whisperit]

I would have thought it should be obvious to any medic. There's enough warning about stopping Pred, for a very good reason, a) it's a very powerful drug, and b) your adrenal glands have stopped working because of it. Plus reducing by 25% or more which is what you did its no wonder you were affected.

[PMRpro Ambassador in reply to DorsetLady]

When I was put onto pred originally it was for 2 weeks each of 15/10/5 and stop. The 5mg drops were no problem at all. Most use of pred is using short-term tapers and many doctors think you can do the same with patients who have been on long term pred. Some people manage it - so when there are some who don't they don't think it can possibly be the dose change!

My granddaughter had a return of her life-threatening asthma every time she reduced the dose. After I pointed out the problems some people have her mother made her reduce more slowly - and it worked better.

[PMRpro Ambassador]

It's fine in terms of adrenal function as 10mg is still above the amount the body makes of its own corticosteroid. It may be a different matter in terms of steroid withdrawal - and slo as to whether it is enough to manage your inflammation currently. There is no guarantee at all that MTX will allow you to manage with less pred - that is a case of suck it and see.

I'd certainly want to try 12.5mg first.

[Pred60lady in reply to PMRpro]

I am reducing from 8 to 7mg at mo and injecting 15mg once a week and did think the methotrexate had been helping when since I started it 8mg. But the last couple of days I am aching in my neck and shoulders, my legs are like putty, I am also very, very low in mood. Have had pmr for 7 and a half years and have just about had enough!!

[PMRpro Ambassador in reply to Pred60lady]

I was going to say snap - and realised I'm havering! I've been on pred for 7 and a half years, I've had PMR for 13. Which is why I won't compromise on dose - I take what I need. My doctors here are very good about that though.

[nonnabrighton in reply to Pred60lady]

Hi, I wondered if the methotrexate....has helped you or if you had side effects, I've been on Pred..for PMR for five years, my Doctor originally was sure it only lasted two years, this last flare (?) he thought was post viral fatigue as my main symptom with a flare is extreme fatigue, anyway my blood results came back with CRP 118 so was almost a relief as then I realised was def PMR Flare I increased to 15mg almost two months ago, I must admit I am scared to lower. I have rheumatologist Tuesday and am hoping not the same as last time, she put the fear of God into me that I should stop the pred.....I was on 7mg then. wasn't very pleasant at all. I also have Migraines which confuse things slightly with neck and shoulder pains. Anyway sending you lots of best wishes, so hope things improve. Oh just seen you have had for seven years.....massive ((HUGS))).

[PMRpro Ambassador in reply to nonnabrighton]

If she tries to put the fear of god in you then ask her whose pain it is. Does she tell her RA patients that their DMARDs have side effects so they should get off them? Off course she doesn't - and for us pred is our DMARD and without it we have levels of pain that leave us disabled and immobile. Stuck at home in constant pain we become isolated and depressed.

Maybe it is short-sighted but I'll take my decent quality of life now - I may be dead in 10 years so the long term side effects would be insignificant. And to be perfectly honest: I had PMR for 5 years before pred. Yes, I survived but I was a lot younger then. Then I had a major flare and the few months I had then before being given some pred to try are indelibly imprinted on my memory. If I was faced with that again - I'd be enquiring about an appointment in Switzerland.

[Pred60lady in reply to nonnabrighton]

Ah thank you so much that means a lot.

[nonnabrighton]

Many thanks..and lots of good wishes..I'll let you know how it goes Tuesday..I had three months of so tired I couldn't do anything..so agree about the quality of life...I must admit I am happy to "pop the pills' (for migraines) to live a normal live in my seventies..somehow she really got to me, she read the list of all the side effects and reasons I should stop asap. Family stress was definitely a cause of my last flare up.....Many thanks..

[PMRpro Ambassador in reply to nonnabrighton]

Point out to her that the list of side effects, all 85 of them at last count I think, are pretty much everything every patient mentioned during the clinical trials. No-one gets them all, many people get very few. Most of us are in between.

After heading for 8 years I have gained a lot of weight, and lost it all again, I have no diabetes, BP is managed well but it is due to something caused by the autoimmune part of the PMR (atrial fibrillation) not pred, my bone density has barely changed, no sign of raised eye pressures or cataracts (cataracts I'd welcome, I could dispose of at least one pair of specs) and I FEEL WELL. Without pred - I wouldn't.

Oh - and ask if she wants you to stress about it and cause another flare...

[nonnabrighton in reply to PMRpro]

Many thanks.