ADVICE PLEASE

[Wallydb]

I am due to see my Rheumatologist soon and I just know that she will want me to try another tablet to enable me to reduce my prednisolone. I am currently on 12mg daily. When I tried Methotrexate it made me so ill that I stopped it but now I think they will say to try a different one. What do you all advise? I will definitely never try Methotrexate again. Is it worth trying a different one or should I stay keep trying to reduce myself. Are these other drugs just as bad as steroids - i.e. substitute one bad drug for another bad drug. Your advice will be very much appreciated.

[SnazzyD]

Sorry, I might be being silly, but I can’t see how long you’ve been on Pred, what’s been happening to put you on Methotraxate in the first place and how you are now.

[PMRpro Ambassador]

To talk about it sensibly we need more info - as Snazzy says, how long have you been on pred? What was your starting dose? How have you been reducing? Why did they want to try MTX originally?

It really is helpful for us to help you if you fill in the bio with more than your name. A brief medical history is so useful.

[Wallydb in reply to PMRpro]

I am sorry - I have tried to update my profile but am not very good with computers. I was diagnosed with PMR in November 2017 and put on a starting dose of 17.5mg. Rheumatologist put me on Methotrexate in approx. October 2018 and I stayed on it until about February 2019 and then stopped as it made me feel so bad. I have managed to get down to 9mg but have then had flares and I just can't seem to get below 10mg now. I am currently on 12mg after having a flare about five weeks ago. I was on 11mg, went up the 5mg for 6 days and then came down to 12mg. It will be four weeks on Friday that I have been on the 12mg. I was going to try and reduce down to 11mg in another two weeks time. I hopes this helps.

[SnazzyD in reply to Wallydb]

when you get to 10mg, what dose drops did you do and for how long each time? Also, what do you mean by a flare? What happened for you? When you do flare, is it the doctor that determines which dose you go back up to and for how long?

[Wallydb in reply to SnazzyD]

The doctor has always said to go down by 1mg when tapering. For instance it is stated on my repeat prescription to reduce by 1mg every 4 weeks. When I have a flare I think it is probably because I was doing too much at the time. I drive a 7.5ton lorry - although not all day I am still kept busy. I don't want to retire as I think I would just fall asleep in the chair all day and disappear. I go up by 5mg for a few days and then back down to 1mg above the original dose as advised on here. And I find this works.

[DorsetLady PMRGCAuk volunteer in reply to Wallydb]

Then discuss with GP - and adjust to a smaller taper as guidelines suggest.. if you reduce 0.5mg per month you may find you no longer flare.

PMR guidelines - tapering 

This is tapering regime from guidelines -The suggested regimen is:.

Daily prednisolone 15 mg for 3 weeks. Then 12.5mg for 3 weeks.

Then 10mg for 4–6 weeks.

Then reduction by 1 mg every 4–8 weeks or alternate day reductions (e.g. 10/7.5mg alternate days, etc.)

##However, there is no consistent evidence for an ideal steroid regimen suitable for all patients.

Therefore, the approach to treatment must be flexible and tailored to the individual as there is heterogeneity in disease course.

Some benefit from a more gradual steroid taper.

Dose adjustment may be required for disease severity, comorbidity, side effects and patient wishes

.* note the comments - these are just guidelines, not everybody is able to conform.

[SnazzyD in reply to Wallydb]

Under 10mg going down by 1mg was too much for me in one go, just form the withdrawal symptoms alone. Another reason why you need to slow right down under 10mg is because your adrenal glands need to switch back on. If you go too fast, even if your PMR is fine, it can make you ill and unable to function. Not everybody gets it, but lots do. Please read the information in these links from FAQ’s as it is important you are aware, as many docs don’t warn you.

healthunlocked.com/pmrgcauk...

What I would say is that we see countless people grimly hanging on to their jobs, lifestyle etc, which is completely understandable! However, there comes a point where a hard look needs to be taken as to whether one is heading to the same nightmare by trying to punch through because the thought of stopping for now is too awful. We’ve had a couple of drivers here in the past and one seemed to stay on steroids higher than they might have needed to with all the risks that causes. Time to reevaluate is if you are constantly hitting the skids with flares or feeling horribly tired all the time. Popping up the dose to keep going is ok as a very occasional but not as a long term arrangement. It’s worth keeping an honest note of how many times you are doing it because the overall dose of Pred can really add up. It can seem like another drug to reduce the steroid dose is the answer but side effects of that can cause another set of problems, though for some it is the solution. But they don’t save you from the adrenal issue. The chickens will come home to roost in one way or another if you ignore your body so it could be worth making a conscious decision as to either go hell for leather and deal with the consequences maybe sooner rather than later. Or, step off the gas to get better and have more choices later. We’ve all been there.

[DorsetLady PMRGCAuk volunteer in reply to Wallydb]

it’s really not that difficult to update profile - see this -healthunlocked.com/pmrgcauk...

Just select and copy what you’ve written above in your reply to PMRpro’ -and then go to your profile -select update and then paste in the bio section.. where it says “hi I’m Wallydb” at the moment.

[PMRpro Ambassador]

Snazzy has said most of what I'd say - but I suspect your main "problem" is the fact you are still working in a pretty full-on job. People who work tend to need more pred, whatever they do, and the sort of things you do in the day are very physical and that makes it even harder. I worked, as did/do others, but it involved getting from the bed to my computer - not even a commute! I couldn't have commuted and kept to employer's hours - I was freelance, I was the boss! I worked sitting down and I could go and lie down any time I needed.

When doctors offer a so-called steroid sparer, they believe that the second drug is preferable to the long term effects of pred. Many people take MTX and are fine, Some people with PMR take MTX and it works very well and some even get off pred altogether. If you are in the small group where it works AND you have no side effects - it is great! The same applies for leflunomide - for some it works extremely well but it too can have nasty side effects. There are a couple of others where there is no real evidence that they work in PMR but there are patients on the forum who have been put on the and have done very well. It all points to the fact that PMR isn't a single disease, possibly not even a single cause. Unfortunately, the only way to find out is to try them. As long as your doctor is happy to accept your decision you can't cope after a few months it is always worth the try. I know someone who felt leflunomide "kick in", she had problems with the first attempt but after stopping, having a full-blown flare and restarting at a lower dose and building up slowly she is doing well. I suspect that is a key point for many: starting with a low dose and increasing slowly. Some doctors do, some don't.

[Wallydb in reply to PMRpro]

Thank you all for your input. I think that I will go with the Leflunomide when I see the rheumy and see how I am on that one. Fingers crossed that I won't feel too bad on it like I did on the Methotrexate. A huge thanks to everybody for your help it is really very much appreciated. This site is amazing.

[MiloCollie]

just make sure you tell them how you feel. Don’t leave an appointment with regrets.

[Wallydb in reply to MiloCollie]

I will do. Thank you.