Slop tapering - doing it my way

[Oboes22]

Rheumatologist increased my does from 5mg to 7mg at the beginning of December due to pain. Now I've had a telephone conversation with her and she says I need to reduce from 7mg to 6mg then 5mg every 4 weeks and so on. I suggested tapering to 6.5 mg and staying on that dose for 6-8 weeks, then down to 6mg but she said not to do that. Her comment was that I've been on steroids for almost 2 years and that's too long.... She would see me in 3 months and then decide whether I need to take methotrexate as I've had two flare ups - I tried to have a discussion with her about how I feel about it all and what I have learnt here but she really wasn't interested. What does everyone else think.....

[SheffieldJane]

I think she’s wrong and that your plan has a lot of merit. If only PMR was so predictable. A Rheumatologist who understands these conditions and her patients is a great gift. Changing Rheumatologists was the best thing I ever did. My PMR morphed into GCA/LVV after 5 years of sensible tapering. It was caught early thankfully.

[123-go]

Oh dear! That's all you need! I would write a letter respectfully explaining that many people on the trusted Healthunlocked forum have been on Prednisolone for far more than two years and have suffered flares due to too rapid tapering thus having to increase doses and that slower tapers with smaller doses are proved to work and minimise the risks of flares. Tell her your own preferred tapering plan and ask if she will work with you on this.I did this when I wasn't happy with a suggested plan and it worked.

Good luck!

[Charlie1boy]

Hi, what I think, after six and a half years of pmr, is that your rheumie doesn’t feel the pain, or experience the illness, but you do. You know your own body better than anyone, Seems to me your plan is a very sound one to go down at a half mg at a time, and taking your time at each level. Make sure you feel ok before going down to the next level.As has been said ever so many times, pmr does not go away in two years for the majority of us. The average is reported as being between five and six years, when treated with prednisolone.

Good luck and try to keep strong.

Paddy

[DorsetLady PMRGCAuk volunteer]

Oh dear, another Rheumy who doesn’t get it! Certainly not the fact that in many patients. PMR lasts a lot longer than 2 years.

Any chance of ditching her and going back to GP?

[Oboes22 in reply to DorsetLady]

Not sure about that. I’m going to do it my way half a mg at a time and then when I see her in 3 months (if I see her, it’s only been phone consultations so far, although I did chose not to go today because of the high numbers) will tell her how I’ve tapered and see what response I get. Thank you for your support.

[DorsetLady PMRGCAuk volunteer in reply to Oboes22]

Well it will be a fait accompli by then- hope it works, and I would stall on the MTX as well if you can! Good luck

[diana1998 in reply to Oboes22]

I only could only reduce by half mg and my rheumie allowed me to do it at my own slow pace according to my symptoms. It's no good being put under pressure to reduce too fast.

[PMRpro Ambassador]

Not sure how to educate them that PMR doesn't only last 2 years and being down to 7mg means they should stop panicking. Glad she isn't mine after nearly 17 years of PMR and 12+ of pred ...

You are having flare-ups because she is pushing you to reduce when your body isnt ready. There are a few studies showing that a number of patients still need pred after 10 years, albeit at a reasonably low dose. I did try MTX - but my rheumy also accepted it wasn't for me as it made me feel so ill I couldn't function. It was fatigue and not the nausea so the injections wouldn't have helped.

[Longtimer]

I can't print on here what I think!...goodness me....

[jinasc]

This might just help you when next you see your Rheumatologist.

Dr Sarah Mackie a leading Researcher into GCA & PMR has kindly allowed us to

inform you of progress being made. Dr Mackie emphasizes that you should always

talk to your own Doctor. We have also stressed this whenever the plans have been

sent to patients.

“We have been trying out the Dead Slow and Nearly Stop (DSNS) steroid reduction plan as

part of the FACT study protocol.

The FACT study is a very small pilot study, funded by Vasculitis UK and approved by a

research ethics committee; this study isn’t actually designed to test different steroid

reducing regimes, but is an exploration into causes of fatigue in people taking long-term

steroids.

We incorporated DSNS as an option on the basis that we know that DSNS, or something

like it, is already used by many patients in the community and because we didn’t

necessarily want to taper steroids over-fast in people who were experiencing fatigue. The

study is still ongoing.

So far it seems that some patients find that DSNS suits them well, especially those whose

symptoms tend to flare up when they step down their steroid dose.

However, DSNS will not suit everyone. DSNS is just one of various different approaches to

tapering the steroid dose, and it has to be stressed that there’s no one-size-fits-all to this –

you should always talk to your own doctor about what might be best for you.”

Dr Sarah Mackie, rheumatologist, Leeds

I published this in a Newsletter issued by PMR&GCAuk North East Support title 'You are NOT Alone' so it is in the public domain.

[Oboes22 in reply to jinasc]

Thank you so much for this information. I know of Dr Sarah Mackie and I will certainly speak to my GP again as he has always been very supportive. My feeling about Rheumatologists is that really don’t know enough about PMR and it’s not really their speciality so I will continue to with my slow tapering schedule. Thank you again.

[New2pmr]

Certainly agree with this. DSNS has worked for me.

[piglette]

Do you have to see a rheumatologist? I have got through four rheumies and now just bumble along with a GP who leaves me to it.

[Oboes22 in reply to piglette]

Thank you. My GP referred me to the Rheumatologist because I had a couple of flare ups which I now think happened because of tapering too fast. I’ll do it my way for now and see where I am by the three months. I will taper after 8 weeks to 6.5 and then down to 6 after another 8 weeks and so on. Thank you again.

[piglette in reply to Oboes22]

My GP referred me too, but in the end I just phoned up and cancelled the appointment.

[agingfeminist]

a good GP is the answer. I also encountered an arrogant rheumatologist who didn't listen. My GP respected the advice from this forum. Brilliant. good luck!

[Suffererc]

Same here with GP. Bangs in about how long I have been on steroids for 4 years. Nobody on them as long as me!!! Doesn’t matter how I feel just must get off steroids

[PMRpro Ambassador in reply to Suffererc]

Send them over here to do a survey - plenty of us on pred over 4 years ...

[PMRCanada]

Unfortunately your story is very common. We must advocate for our health, and in the process educate others along the way.

As Frank Sinatra sang….”The record shows, I took all the blows, and did it my way.”

[Jane424]

I printed off the guidelines and it worked: rheumatologynetwork.com/vie... luck.

[PMRpro Ambassador in reply to Jane424]

Can you edit the link - it needs to finish with a space but you have it running on to the Good luck. There is a bug in HU that sometimes "loses" returns when we try to start a new paragraph, Blasted nuisance!

[Oboes22]

Thank you Jane, but I couldn’t access it either. It just brings up an error message.

[PMRpro Ambassador in reply to Oboes22]

rheumatologynetwork.com/vie...

Try this - copy and paste can work miracles