My 1st Rheumatologist consultation

[Leepeelee]

Well, I saw the Rheumatologist this morning.

He asked me all of the questions that I was expecting and then he did a physical examination on me.

He sent me off for X-rays, ultrasound, several different blood tests and a urine sample all of which were done today

He said that he wants me to reduce from 15mg pred down to 12.5 immediately, then a further 2.5 down to 10mg in 2 weeks time. He has booked me for a follow up appointment in 4 weeks time so that he can reassess me.

In his opinion, It is unlikely to be PMR, he said that the diagnosis will be more accurate next time I see him????

I realise that I have to go along with his plan but I am really not happy with reducing so quickly based on how bad I felt the last time I tried reducing by 2.5mg!!

[Maisiek]

I’ve had a very similar experience: first Rheumy appt. score down from 62 to 44 but not low enough after a month on 15mg. So he wants chest X-rays etc after I had new pains across my middle back . He suspects either severe PMR or something else ?? Dreading a reduction to 12.5 after horrible relapse when I tried after first 2 weeks.

[PMRpro Ambassador]

You have to do it really - because unitl he sees your whateveritis in all its glory he isn't going to believe what it is. But if you really are so bad after the first stage - I'd be back to the office.

[Blearyeyed]

I know it's a horrible situation to be put in when they decide to test the diagnosis because they didn't see the first presentation of your symptoms themselves like this.

You can make the month easier by planning ahead now , resting more during the day , reducing work time or taking sick leave if you are still in employment and keeping unnecessary activities and social plans to a minimum. Get as much help at Home as possible.

Try relaxation and breathing exercises especially when you are having withdrawal symptoms or growing pain.

Use gentle rotation of your joints and short walks on level surfaces to help reduce stiffness.

Use Paracetamol at the standard dose when required , some of your pain maybe from nerves or muscle tension , this can help these reduce your total Pain level .

Drink more fluids and Vitamin and mineral supplement and light low carb , low sugar meals to help reduce pro inflammatory effects of food.

Keep a detailed Diary of your symptoms , both old and new , and your Pain levels each day where it is and when it is worse. This will help establish your diagnosis along with your blood tests at the next appointment.

You could benefit from having your inflammatory markers done the week before your Rheumatology appointment via your GP. Then you will have the results to be able to take to them on the day.

[Hidden]

Would it be better to do 1mg for first 2 weeks and 1.5mg for second 2 weeks or vice versa. Same result surely? But not quite so scary sounding.... Along with bees advice too.

[Leepeelee]

I think I’m going to reduce by 1.25mg per week for the 4 weeks, hopefully this will be more manageable than dropping 2.5 each 2 weeks.

Thanks for your advise 🙂

[PMRpro Ambassador in reply to Leepeelee]

I'm not sure it is - your body takes time to get used to the new dose and changing it every week may be hard - even if it is a smaller change.

[Leepeelee in reply to PMRpro]

I have a feeling that it is going to be difficult which ever way I go. I’ll toss a coin on this one I think! 😬

[Nap1]

You answered your own question Sheila. Be smart we have been there before more than once.

[Leepeelee]

Well, the tapering isn’t going very well at all! I went from 16.25mg - 15mg last weekend and since then it has been like a rollercoaster, flaring up and down! The last 3 days have been the worst especially when I wake up in the morning. The aches and pains in my shoulders and upper arms stay with me until the Preds kick in.

I take the Preds at midday each day, the past 3 days I have been bad from waking in the morning, up until about 3pm.

It seems like as I am tapering, the lower dose of Preds is not lasting a full 24hrs.

I’m really worried about my next taper, as instructed by my rhumy I’ve got to reduce by a further 2.5mg next week end! I’ve got a horrible feeling that this is going to get worse?

Could this be a sign that what I have is more likely to be RA than PMR ?

[PMRpro Ambassador in reply to Leepeelee]

WHY are you not taking pred until midday? We know we sound boring, we know we bang on - but it is the fruit of years of experience, experimentation and thought.

The inflammatory substances are shed at about 4am, after that they are beavering away creating mayhem until the pred kicks in. The optimum time to take the pred is at 2am - the inflammation just never gets a hold so the pred has far less to do and you get a good result much sooner. Alternatively, if you don't want to wake up in the middle of the night then you can wake a bit early, take the pred as soon as you can after 4am and then settle down for a couple of hours until it works. But if you let them get on with it until midday - of course it will take until 3pm to get a result.

For some people it works better splitting the dose to extend the antiinflammatory effect a bit further. But that is another investigation. Start by using the single dose optimally - that may be enough.

[Leepeelee in reply to PMRpro]

Oh, yet again, lack of advise fro the Dr and Rhumy!

So, how should I change the medication time? Should I gradually move the time over several days until it reaches 2am, or just take an additional dose at 2am, or skip till 2 am ?

[PMRpro Ambassador in reply to Leepeelee]

Start with a morning dose and see how that goes - as soon as possible after 4am - many people do fine taking at about 6am. And that is easy - you will take a tiny bit more in the 24 hours but just bring the dose forward and it will be fine. Having done that - see how you get on and then reassess. After a week or so at that, you could bring it forward to the 2am time if you want in exactly the same way. Take the next dose earier rathe than later - wait more than 24 hours and it will be uncomfortable.

[Leepeelee in reply to PMRpro]

Ok, I’ll do that but I can’t go against my Rhumys advise, he wants me to reduce a further 2.5mg next week end followed by a further 2.5mg two weeks after that.

Maybe if I start the dose at the time you have advised, the tapering will get easier ?

[PMRpro Ambassador in reply to Leepeelee]

If what the doctor is suggesting isn't going to work for you then yes, you can stand up for yourself and tell him it isn't working. He is not a god and this is your illness and your pain, not his. It is advice, that is all - and ALL the guidelines expressly mention that the tapering MUST be adjusted to the individual patient. Reducing 2.5mg every 2 weeks is unlikely to be successful, studies have shown that reducing the dose quickly is predictive of flares. He is asking you to reduce 5mg per month and that is crazy. I could accept his instructing you to reduce 2,5mg per month - but even so, if it leads to problems he must accept it is too fast for you,

We don't just pluck numbers out of the ether - we suggest where things are probably going wrong from personal experience - often bitter experience!