Flare up!

[Zellamze]

Well after talking to my GP today, I'm now back up to 15mg back to where I started. Although she told me to do it over the weekend the start reducing again by two until I get back to ten. I'm also having a blood test on Monday. Hopefully I'll be in less pain very soon. Frustrated though as I can't seem to get Under 10mg. 🐝

[DorsetLady PMRGCAuk volunteer]

Good, glad you got some advice before weekend. Just make sure you feel okay before you think about reducing again. No matter what GP wants you to do, you have to reduce in line with what your body says.

Good luck.

[PMRpro Ambassador]

Patience - and be grateful you have a sensible GP!

It took me a long time to get significantly under 10mg, 9mg was as far as I got for over 3 years. Then I had a massive flare and some other problems which involved a couple of days of high dose i.v. pred. When those back problems were then sorted out by the local pain clinic I was able to reduce steadily to 4mg. In the meantime have been back to 15 and now fairly happily at 10mg after 8 months. Further isn't working again - but my back problems are niggling. Need to do something about them I think.

Have a happier weekend though xxx

[Zellamze in reply to PMRpro]

Nine months.

[Annodomini]

How long is it since you started? If I were you and got stuck on 10mg, I'd stay there for several months. Just be patient and don't rush into over-fast reduction.

[Zellamze in reply to Annodomini]

Not rushing it's been nine months.

[Zellamze in reply to Zellamze]

Yes, may stay on 15 longer. 🙈

[HeronNS in reply to Zellamze]

I also think the reducing by 2 mg at a time is much too fast. PMRpro says "It isn't slow if it works" and you will almost certainly have a lower lifetime dose of pred if your taper is very slow and careful. Maybe after you are stable at 15 again you could try 1 mg at a time. And stay at each level long enough to know you're still okay. Some would recommend the dead slow taper even at that level. In my experience I was fine to 10 (decreasing by 1 mg weekly from 15) but quite suddenly needed to slow down the taper drastically, and have used dead slow, very successfully, ever since.

[Zellamze in reply to HeronNS]

That sounds like a good idea. 😸

[pollybee70]

Frustrating.I'm going to have a rant, if you don't mind.

My doctor seems to like doing things in blocks of 1 month. 15mg for a month, cut down to 10mg for a month then apparently we are going to try 7 1/2mg this time (last time it was 5mg and I could cope, but suffered) but she didn't say for how long and also failed to convey this on my prescription, so the pharmacist only issued me tablets for 1 month. I ended up in a long phone call with the receptionist who said she would inform my doctor, apparently the pharmacist attached to the practice couldn't ring through and ask her to clarify himself. No information, so I rang the pharmacist as this would be quicker, she said yes there were 28 more tablets - still not the right amount, but an improvement. It is concerning when professionals are so cavalier about prescription accuracy. The "We'll see" approach at the end of the present course is worrying. Last time it took me 2 weeks to get an appointment to see her, which meant my medication stopped abruptly. I had to resume it as I was in a bad way - I'm sure this is not good for me.

Sorry for the rant, but I feel better.

[PMRpro Ambassador in reply to pollybee70]

As I always say - rant away. If you can't rant here, where can you rant.

She hasn't got a clue how to manage PMR - you do NOT do it with short courses of pred, it is a chronic disease and you need long term management, at the very least you are likely to be on pred for about 2 years and for half of patients PMR takes between 4 and 6 years to burn out. You aren't looking at weeks or months of pred at some dose - you are looking at years.

Take this

rcpe.ac.uk/sites/default/fi...

to her and get her to read it and then do something more like the plan they suggest whereby you would take 15mg for 6 weeks, 12.5mg for 6 weeks and then 10mg for a year before reducing further.

Personally I think smaller steps are better and the 10mg for a year isn't necessary if you reduce in small enough steps - but I doubt your GP will listen to a mere patient and her opinions, Quick and Kirwan are both rheumatologists and Kirwan has been to the fore in PMR research and is still involved.

On the other hand, this is the way many people on the forums have reduced very successfully, quite a few getting to zero with minimal or zero flares and no steroid withdrawal problems:

healthunlocked.com/pmrgcauk...

It is currently being used in a clinical study in the north of England - and I know of several rheumatologists who use either it or something similar and several have approved patients using it who have found it here.

If your GP won't listen and discuss it with you to your satisfaction, ask to see a different one for a second opinion. I am surprised a GP would have a patient on 10mg and above for 2 months and then allow them to run out of tablets abruptly - you could have ended up in an adrenal crisis and seriously ill. As it is, she has allowed you to flare up and that has got you into a yoyo situation with the dose - about the worst way of going about managing PMR and something to be avoided. For some reason it seems to result in the next reduction being more difficult, as if it weren't bad enough anyway. Difficult to know why, it just is.

If that all gets you nowhere, first you need the referral to a rheumy in the hope they'll be better you are entitled to, and then you might try for a new listening practice - though I do appreciate how difficult that is likely to be in the current climate.

I started off with pred in a similar way - because the rheumy didn't think it was PMR (still didn't later despite a textbook response to pred) but I was about to go to the US and could barely move. I got a taper of 15/10/5 for 2 weeks each and stop. Within 6 hours I could move normally and within 6 hours of missing the first 5mg I was worse than before. I had been OK even at 5mg, maybe it was not long enough for the inflammation to build up, but it then took years to get below much below 10mg again, 9mg was OK, 8.5mg wasn't.

[pollybee70 in reply to PMRpro]

Thank you for the article.

Your start off is certainly my experience and furthermore my immediate relief at being back on 15mg was limited. My knees, back of thighs and hips improved but not my arms and shoulder area. After several days it's getting better. I have developed very swollen ankles and lower leg which is annoying, as I didn't have this problem when I was on Pred - my doctor gave me water tablets.

There has been no suggestion of a Rheumy. I think I will take someone with me next time I visit her.

[PMRpro Ambassador in reply to pollybee70]

I think that is a very good idea - and do it sooner rather than later.

Keep your feet up - it is both legs isn't it? If it is just one I might be a bit concerned about that. Any other signs in the leg?

[pollybee70 in reply to PMRpro]

Just flutterings when I take my tablets. I used to swell up before PMR. Pred actually seemed to keep it down, so swelling up after the 'break' is disappointing. I think it's more to do with the borderline diabetes.

[Stroppymoo]

I'm lucky my doc has put me on a 6 weekly plan e.g. 9/8 alternate days then 8 for whole month. Also last saw me in August about pmr says it's up to me about doseage and will see me in November unless I get a flare. I will, however, see him about my broken finger b4 then, and he will no doubt ask about the pmr.

[TooSore]

Pollybee - I find it helpful to make my next appointment before leaving the doctors office so that I don't get caught needing one and not having something avail able. Can you call now for the appointment? Time it so you don't go without- earlier is better than too late!