reducing Prednisolone

[Bobbikins]

I have had PMR for eight years and for the last five, I have been on 3 mg of prednisolone. My GP was concerned that I had been on Pred for so long. My blood sugar is normal as is my DEXA scan, although it does show slight deterioration in my spine. However, it’s within the normal range.

First rheumatologist I saw at Kingston hospital Wanted to put me on methotrexate. I asked for a second opinion and having waited quite awhile. I saw a Rheumatologist at St George’s. He said I couldn’t have PMR for eight years! Told me to come off prednisolone and I responded saying that I felt I still had polymyalgia rheumatica. He suggested I go on leflunomide for two months and then start reducing the Prednisolone. I was concerned by the possible side-effects of leflunomide as it can cause liver damage.

My Blood sugars are normal as is my DEXA scan. The DEXA scan did show a slight decrease in bone density In my spine, although was within the normal range.

I’m worried about taking leflunomide and feel confused as to what I should do? My GP suggested I wait until the spring as it would not be a great idea to be on two immuno suppressants dluring the flu season. ( I should add that My PMR was triggered by a flu vaccine). and when I had a second one two years ago, it caused a big flare, so I no longer have the flu jab. Any advice as to a Rheumatologist, I could see privately in London Who has a good understanding of PMR, and actually listens to his patients.

[piglette]

Why do you need to see a rheumatologist? Your GP seems quite sensible and supportive.

[Bobbikins in reply to piglette]

Thank you for your response. He’s not happy about me being on prednisolone long-term which is why he referred me to a rheumatologist.

[piglette in reply to Bobbikins]

Is he still worrying when you are only on 3mg? Have you had regular Dexascans?

[Bobbikins in reply to piglette]

thank you for replying. Yes, I have regular dexa scans Which are within the normal range

[piglette in reply to Bobbikins]

As DorsetLady suggests you could always visit Dr Rod Hughes in Chertsey privately.

[DorsetLady PMRGCAuk volunteer]

Chertsey any good for you? If so - Prof Rod Hughes

topdoctors.co.uk/doctor/rod...

Best way is to contact his secretary Jody on 020 7031 3403

[PMRpro Ambassador]

You are on 3mg - far safer than adding in heavy duty drugs that have their own adverse effects and aren't guaranteed to get you off pred. And Prof Dasgupta told us he often kept patients on 2-3mg longterm as it reduces the risk of relapses. If it is good enough for him - it should be good enough for them.

And like DL - I'd splash out on a trip to Rod Hughes who will approve long term low dose pred because it is what you use for PMR and PMR can last a long time - a lot longer than many rheumies think.

[Bobbikins in reply to PMRpro]

Thank you for your response.

I would add that neither Rheumatologist listened, and I actually felt gaslighted by the second one who seemed to suggest that my PMR symptoms are all in my head as PMR only lasts for a couple of years

[Bobbikins in reply to PMRpro]

In parenthesis, I am a very experienced psychoanalyst with 10 years of training behind me. I rather objected to a diagnosis of hysteria based on him talking for 10 minutes and me for perhaps two minutes.

[PMRpro Ambassador in reply to Bobbikins]

With you all the way. PMR lasts for a lot longer than 2 years and they are showing ignorance by being unaware of that. They need reporting and taught not to gaslight women.

[Bobbikins in reply to PMRpro]

Interestingly, I saw him privately for bursitis, and he couldn’t have been nicer!

[PMRpro Ambassador in reply to Bobbikins]

Money talks obviously ...

[Bobbikins in reply to PMRpro]

I worked in the NHS for many years and treated everybody as a human being who deserves respect And to be listened to. Massive gap in behaviour between being an NHS patient and a private patient.

[PMRpro Ambassador in reply to Bobbikins]

Not with Rod Hughes - why we like him so much.

[SusyTe]

I would also recommend Professor Rod Hughes - either on the NHS at St Peter’s or privately at the Runnymede - he is wonderful!

[Zebedee44]

Both Professor Hughes and my own GP approved my continuing at 6mg pred after seven years. The local Rheumatologist said he would not prescribe leflunomide for patients lower than10mg, even though his own colleague had prescribed it and I had never used it after reading other reports here.

[Bobbikins in reply to Zebedee44]

Did he prescribe it to you?

[Zebedee44 in reply to Bobbikins]

One of his colleagues in the same department prescribed it to assist my taper from 8mg where I had been stuck for four years but various posts on this forum concerned me so I never started it. The senior Rheumatologist queried the original diagnosis of PMR which was unhelpful so I saw Prof Hughes privately and was reassured.

[Viveka]

Yes, definitely Rod. Fie on gaslighting doctors. Luckily you are in a position to spot this. Out of interest, have you tried any extra slow and extra tiny tapers?

[Bobbikins in reply to Viveka]

My NHS Rheumatologist who discharged me during Covid lockdown said just stay on 3 mg. Never managed to get below 2.5 but maybe worth another go when I’m feeling well. Any suggestions for reduction? I have the dead slow and nearly stop. Had a syncathen test And my cortisol levels were borderline (just within the normal range), so that might be part of the problem

[DorsetLady PMRGCAuk volunteer in reply to Bobbikins]

As you already have DSNS - just use that… you can elongate it by repeating each step… but don’t try until spring… Winter is never an ideal time to try and taper.

If you and your doctor are happy at 3mg so be it, but always worth a try at getting lower - when the time is right.

[Bobbikins in reply to DorsetLady]

Thanks. Good advice.

My GP was concerned about my long-term (8years) Pred, although I’ve been on 3 mg or below For most of it, so he referred me to an NHS Rheumatologist. I asked for a second opinion and the other Rheumatologist said he didn’t think I had PMR because my inflammation markers were normal. I had to point out that that was an anomaly in about 10% of people with PMR. The first one prescribed methotrexate And the second one prescribed leflunomide to be taken with Pred for two months, and then for the Pred to be reduced. I wasn’t at all keen on being on to immunosuppressant drugs during winter flu season, so I haven’t followed his advice. I will go and see Rod Hughes. I’ve seen him before when he’s given me a depot jab during a flare.

[DBE46]

Please give us an update after you see Rod Hughes.

[Bobbikins in reply to DBE46]

thank you, will do.

[marionofnorwich]

I am just coming up for four years PMR and am on 3.5/4mg of pred. That is, my rheumalogist, Max Yates, said to stay on 4mg permanently since my Synthacen test was slightly under par (I think I can still get lower) so I am in the opposite situation where I believe I can get lower but the rheumie is happy for me to stay on a relatively low dose of pred. I think that you are experiencing a change in the knowledge and treatment of PMR and lack of knowledge generally which seems to make medics brusque as they hide an insecurity. Confident people own up to a lack of knowledge but many consultants can't do that it seems

[Bobbikins in reply to marionofnorwich]

Thank you, that probably sums it up really well.