Referral to Rheumatology

[greencyclist62]

Having spoken to the doctor last week I am now being referred to Rheumatology to be tested for Rheumatoid Arthritis.

I know from reading posts on here that many of you have travelled this route, and my question really is, has anyone on here managed to taper their steroids to a low dose when PMR was not diagnosed for nearly 10 years?

I have tried over the last year to taper, using different plans, and cannot get anywhere. I am now back to 15mg for the 4th time and finding the side effects difficult to deal with. I know this is something I may have to accept, just wondered if the longer the condition goes undiagnosed, makes it harder to get it into remission?

I'd appreciate any comments. Thank you.

[SnazzyD]

Disappointing! So you have you had to go back up 4 times to 15mg in 6/7 months. So, every 6 weeks?? Each time, where did you get down to? Just wanting to check that you haven’t been caught in the trap of reducing too fast each time and then having a knee-jerk increase to 15mg. If this is the case, it can look like you are not responding to Pred, especially if you have a doctor who prefers rapid plans come hell or high water.

Have you moderated your activity?

Which side effects are troubling you particularly?

[greencyclist62 in reply to SnazzyD]

No I've been on steroids since Oct 23. First time I came off them within 6 months because I hadn't been diagnosed with PMR then. Back on the steroids June 24, firstly reducing as per doctors instructions, which didn't work. Then took advice from Dorset Lady and have been trying her 5 week taper plan. Got to between 11 & 12mg at Christmas and had a flare, so back to 15mg for 5 days and now on 14mg.The side effects are extreme hunger, dizziness, sight deterioration, balance issues,to name a few.

[PMRpro Ambassador]

What do you call a low dose? As Snazzy says, sounds to me as if your doctor has made a classic error: you don't give a starting dose of pred and then once the symptoms are under control taper relentlessly to zero and stop. The pred has cured nothing, it is a management strategy and having got things controlled, you taper the dose slowly and in SMALL steps to find the lowest effective dose which is a very different thing. In the early months that dose is going to be higher than later on. It is also called titration of the dose, you taper until you get to a dose where the symtoms just start to reappear and them immediately return to the previous dose at which you were good. It doesn't mean you won't get lower - just not yet.

When you identify that dose in that way you MAY need to add 5mg to that dose for a week or two, but then you can drop back to the last dose that was good. You do not repeatedly go back to the start. Unless of course you are flaring at 12.5mg after dropping from 15mg. But then you change your approach - instead of repeating the same mistake again and again, you change to 1mg changes of dose and stay a bit longer at each new dose. This is a game where softly softly catchee monkey is the order of the day. Just bashing on again and again while ignoring warning signs will just achieve nothing,

What is happening in detail? Have you changed your activity patterns? How long do you stay at each new dose before continuing?

[PMRpro Ambassador in reply to PMRpro]

Difficulty tapering like that is a cardinal sign that more investigation is required as that is typical of what may happen in an inflammatory arthritis or other underlying cause of the symptoms. PMR isn't the disease - it is the name given to a set of symptoms and there may be several possible underlying causes.

[greencyclist62 in reply to PMRpro]

Thank you for your reply.

I have tried the doctors advice previously which didn't work and I posted on here asking for some guidance. Dorset Lady was very kind and sent me her 5 week taper & her longer taper. I was trying her 5 week taper and got to between 11 & 12mg but had a flare just before Christmas. I do not have a stressful life, I live on my own, wasn't planning a busy Christmas, in fact I spent the whole 2 weeks mostly on my own. There didn't seem to be a reason for it other than my body obviously wasn't coping on 11/12mg. I read the advice on here and increased to 13mg, which didn't help, tried 14mg, that didn't help either, so ended up back on 15mg, which i took for 5 days and am now on day 3 of 14mg.

I find 15mg cause lots of issues for me, blurry eyes (more than usual), which make driving difficult (I need to drive to get to work and am not able to have sick time). Dizzyness, heart rate increase, sleep problems, constant hunger, to name but a few. I'm sure this is what other people are experiencing but I was just wondering if anyone has managed to decrease the steroids over time if they have had the condition long term. I have long ago dismissed my GP's prognosis of "oh, you'll be off them in 18 months to 2 years!"

[PMRpro Ambassador in reply to greencyclist62]

Have you seen my second add-on reply?

[greencyclist62 in reply to PMRpro]

I did thank you, and have just been referred.

[PMRpro Ambassador in reply to greencyclist62]

I'd seen that - but your doctor took his time registering he needed to!! Do let us know how you get on.

[greencyclist62 in reply to PMRpro]

Frankly, if it wasn't for me keeping on I wouldn't be having any contact with the GP. But i'm sure a lot of people are finding this now.

I will keep in touch regarding my appointment, but have been warned there is a very long waiting list.

Thank you again.

[PMRpro Ambassador in reply to greencyclist62]

If there is a likelihood that it could be inflammatory arthritis it should be at least an urgent referral if not emergency - because the sooner treatment is started the less damage will happen, So it might be worth asking if it was submitted as routine - which takes forever - or urgent/emergency.

[greencyclist62 in reply to PMRpro]

It's been referred as routine.

[PMRpro Ambassador in reply to greencyclist62]

If it were me, I'd be pushing to get it upgraded.

[Tappo in reply to greencyclist62]

If you cannot get to see a rheumatologist quickly, are you in a position to book a private appointment? I have just booked one and it was nowhere near as expensive as I thought it would be, and, I could’ve seen him the day I called to book an appointment as they had a cancellation. Any further testing etc. can be requested by them with your GP, or if necessary, in your local NHS Hospital.

Re: blurred vision and extreme hunger. Have you had your eyes tested recently? My blurred vision is down to dry eyes, exacerbated by the prednisolone. I was using dropsfor dry eye before - rather haphazardly, but, on the advice of my optician, using them more regularly has brought more relief.

The hunger is awful, isn’t it? However,I find I can control it if I keep to a low carb diet.

Good luck with your search for answers.

[greencyclist62 in reply to Tappo]

Hello and thank you for your reply.

Unfortunately I am not able to see the consultant privately, so will have to wait for the appointment.

I have been having my eyes tested regularly as my vision has changed in the last 6 months, and am now on a 12monthly recall. However, thanks to a reply on here to a previous post, I am now using TheaLipid eye drops which is helping my dry eye condition.

[DorsetLady PMRGCAuk volunteer]

Nothing to add to another’s replies - just saying, hope you can get things sorted soon..

[greencyclist62 in reply to DorsetLady]

Thank you.

[Freshairfiend]

I had enormous difficulty reducing steroids. I do have a pmR diagnosis. Aafter referral to rheumatology, I went on methotrexate and now I am reducing without any difficulty. It’s a steroid sparing drug and is often prescribed for RA.

It is worth trying to go privately for the initial appointment. I went to the Nuffield in Exeter. I went through Benenden health care, so unsure of cost. But I imagine between £100 and £200. If you can borrow the money, that would be great. As they will then see you on the nhs, as they have all the facilities for regular blood tests etc. my consultant fast tracked me as he’d done the assessment privately. I saw him once on the nhs and since then I’ve seen mostly nurses who have been fantastic.

Wishing you all the best

[PMRpro Ambassador in reply to Freshairfiend]

"As they will then see you on the nhs"

Not always they won't, it depends on whether you are in the same region.

If you are doing so well on MTX - and it does happen so I do always say you need to at least TRY MTX at least - then it may well have been a polymyalgic presentation ot LORA which can appear identical to PMR in the early years except that the patient struggles to taper the pred,