V. Disappointed. Rumi. Appointment cancelled.

[Rocketronzy]

Should be going on Monday. Now 3weeks later. 😖 some one slipped up

As they said I should see a consultant and I was booked in to see nurse. 😱

Bit of a mess really as my doc was tapering me down from 25 ml to 5 in less than a week so it would show in my blood

I'll have to go back to see her.

I get bad symptoms waking me up v early

Sore head neck across my eyes I've had panes and stiffness all over the place.

But still not showing in blood.

About three weeks ago I called A&E i woke up we prolonged chest pains.

The first Doctor thought as I did unstable angina.

Much later on in hospital a more experienced consultant said he thought

It was a flare up of my PMRA.

I THINK HE WRITE Still no showing in blood. He said it doesn't always.

So as you see I'm a bit up in the air. 😖😱

[Hidden]

I found rheum nurse to be more helpful. Last twice I have bloods then see nurse after 3 weeks and consultant 3 month from last time I saw him. The nurse at least listened and talked and rang me same day as test. I do hope they get it sorted to your satifsfaction. I am sure other who also have "normal" bloods but pmr for defo will join in.

[Rocketronzy in reply to Hidden]

Hi poopadoop. Great name. 😂

Thx.

[piglette]

Hi Ronzy, around twenty per cent of people do not have raised blood results. This seems to confuse doctors some of whom seem totally unaware of this, although they should know. Sounds like the consultant you saw had a bit more of a clue.

[SheffieldJane]

Poor you Ronzy. How maddening that your appointment was messed up especially as you are suffering all the effects of a rapid drop in Pred. At least the last doctor seemed to know a bit eg that it does not show up in blood tests always.I would slow my reduction down now that you aren't seeing him for 3 weeks. Good luck!

[Rocketronzy in reply to SheffieldJane]

I'm afraid not that was the hospital doctor. 😳

O deer I wonder how do we know

How to tapered off without markers 😱?

Thanks for your concern. ❤️

[PMRpro Ambassador in reply to Rocketronzy]

By symptoms. You reduce slowly until symptoms appear and return IMMEDIATELY to the previous dose where you were good. Markers are only a guide and can be affected by many other things. And you reduce SLOWLY with SMALL STEPS so you eliminate the likelihood of steroid withdrawal pain.

Quite a few of us on the forums have the same challenge - and to be honest - I think it is better as you are never misled which can happen a lot with blood results.

[Rocketronzy in reply to PMRpro]

I have a problem now. 😖

As I said my rumi appointment cancelled. 😬

Now. Doc dropping me down to 5 mg from 15 tomorrow. 😱

Hoping it will give a marker in blood test tomorrow afternoon.

On top of that I am going on holiday to whitby in this country. For 14days. Got 16 5ml tabs next proscition not do till 31 July says on one per day. 😲

Had all symptoms of GCA. But by the timeI got to see this doctor were almost gone as I put myself on 25ml.

I am a little perturbed to say the least. I may be lucky

But just don know.

I think doc thinks I am a drarmer queen. 😱😬😇

I kneed advice on tapering down 🤔

I don't want it to spoil our holiday.

[piglette in reply to Rocketronzy]

Hi Ronzy, are you saying that you are going to drop from 15mg to 5mg all in one go and you only have 5mg worth of tablets per day while you are on holiday? Does your doctor know anything about tapering steroids for people with PMR? Personally I would be a bit worried taking that sort of drop and going on holiday with such a small amount of tablets. Is there any way you can get some extra in case it is too large a drop, which in my opinion it is? I would allow 15mg a day just in case. I really would talk to your doctor before you go away about it.

[Rocketronzy in reply to piglette]

Going to see Doc

Tue.

If there no visibl symptoms it's going to be a battle.

Can pains in head neck & eyes be withdrawnal symtums.

Thanks for your sincere concern.

Hugs.

Ron.

[PMRpro Ambassador in reply to Rocketronzy]

Do make sure you have enough medication with you - and explain in words of one syllable to your GP that they are risking your holiday for you making you reduce like that! Reduce by all means - but NOT 10mg at a time and not when you are going to be away on holiday with no access to your surgery and GPs. It is a long way to a hospital from Whitby!

However - although I KNOW this isn't what you want while on holiday, IF you do have any signs or symptoms of GCA while you are in Whitby don't hesitate to call 999 because YAS (Yorkshire Ambo Service) are taught about GCA and know it should be treated as a medical emergency.

When it comes to medical things Whitby really isn't the hub of the universe - but their paramedics are OK. Though I suppose I'm biased since my daughter is one there I was supposed to be there at the end of the month - but we've had to cancel our UK trip So no fish and chips for me this year...

[SheffieldJane]

I think we just have to pay close attention to how we feel from day to day. There is no mistaking PMR pains. Steroid withdrawal pains are similar but they wear off as opposed to getting worse.

[Jackoh]

Hi Ronzy. I have GCA ( cranial) and PMR and very low blood results- ESR - now about 3 ( never higher than 16) and CRP usually 1 to -1 . None of this indicates inflammation as do quite a few of us so that's one less thing to worry about because you cannot rely on the results at all! You can only go by your symptoms and symptoms are king anyway as often blood results lag behind what is actually happening in body. I think it is 20% of folk that do not have raised blood markers so you are not alone.

It does just mean that you have to listen closely to your body re flares or withdrawals but then most folk have to do that anyway.

Sorry that you have had such a mix up with Consultant appointment. Do let us know how you get on. Good though that you have contact with Rheumy nurse. Best wishes Jackie

[Rocketronzy in reply to Jackoh]

Thanks Jackie.

Hugs

[Nitrobunny]

Take good care Ronzy. Listening to your body as everyone said, really is the very best advice. Have a good holiday and do let us know what happens.

[Rocketronzy in reply to Nitrobunny]

Thx

Hugs.