PMR Returns

[tonythecatx]

I had PMR 13 years ago, which was diagnosed by my Doctor as I walked towards him, (no blood tests or path involved at all). He started me on 60mg Prednisolone and the pain stopped within 24 hours, steroids were gradually reduced over the next year as well as bloods and bone marrow tests. Been free until 2 months ago when it returned, alas my new Doctor does not agree with my diagnosis and only reluctantly has started me on 20mg Prednisolone which is only providing minimal relief. I would have had to wait 30 weeks for an NHS rheumatology appointment so have a private consultation arranged for this Friday, fingers crossed.

[DorsetLady PMRGCAuk volunteer]

If you were started on 60mg for only PMR, no wonder all pains disappeared - that's a very hefty dose... usually GCA with sight disturbances.

20mg is much nearer the normal for PMR... but you may need longer than 24 hours for it to take effect.

Why doesn't GP think its PMR?

[tonythecatx in reply to DorsetLady]

Thanx for your speedy reply DL, my Doc says "In 2009 when previously treated for PMR his ESR was raised to 57, however this time his inflammatory markers are not raised at all" I have read however that 20% of PMR sufferers do not display any blood changes at all?

[DorsetLady PMRGCAuk volunteer in reply to tonythecatx]

between 7-20% of patients may not have raised markers (depends what study you read) -so symptoms are the key really -sometimes (but not always) confirmed by markers.

What symptoms do you have? And if he doesn’t think PMR, then what?

[tonythecatx in reply to DorsetLady]

Through the night pains on rising, sometimes have to crawl to the loo, morning pains and stiffness lasting at least 2 hours eases by after lunch but never all goes away. Doc does not know, hence consultation on Friday.

[DorsetLady PMRGCAuk volunteer in reply to tonythecatx]

Sounds very PMR-ish to me …..-as said earlier may need slightly higher starting dose and/or longer period to get inflammation under control.

[Janettechud in reply to DorsetLady]

Hi DL! Not sure if you or anyone else has tried this and I waaay too new at this unpleasant adventure to make a comment … but I have been trying dividing my dose (back up to 25 mg P after failing twice) and taking it 5 times a day rather than all at once. Today is the first day in quite a few that I have not had morning mobility and pain issues. Yesterday I tried pain killers to check steroid withdrawal to no effect. Is dividing the dose a workable strategy?

[DorsetLady PMRGCAuk volunteer in reply to Janettechud]

It can be for some , but rather than dose throughout the day -we usually recommend approx 2/3rd dose usual morning time and 1/3rd before bed (that helps with morning stiffness etc).. but what suits you best and controls your disease is the way for you.

[PMRpro Ambassador in reply to Janettechud]

You were maybe lucky - with so many small doses you could find it was never high enough to subdue the inflammation.

But it is fairly common to split it in two as DL has described - the second dose late enough to manage the morning symptoms because it has extended the antiinflammatory effect to the full 24 hours. And a lot easier to plan ...

[PMRpro Ambassador in reply to tonythecatx]

Those who have had PMR more than once all say the 2 (or more) episodes were different in almost every respect. PMR isn't the disease, it the name given to a set of symptoms and there are several reasons that can underlie it.

And the pains will only go away if you are on ENOUGH pred and remain away all day if the antiinflammatory effect lasts the full 24 hours - it can vary between 12 and 36 hours. You are quite a bit older than the first time - no-one could expect it to be identical.

[tonythecatx in reply to PMRpro]

Hi PMRpro, My symptoms are practically identical from what I remember, especially having to crawl to the loo and great difficulty standing at all early in the day.

[PMRpro Ambassador in reply to tonythecatx]

Sounds fair enough to me!!

[PMRpro Ambassador]

Same comments, same question as DL! Some people do need more than 20mg - but 60mg is a whole different world and OTT for PMR. If you need that much then it does beg the question is it PMR? 60mg will get a result for a lot of other things.

[tonythecatx in reply to PMRpro]

Latest Up-date, Had my appointment last Friday with consultant and provided him with 28 pages of results from my MD, he had bloods taken there and then. He told me he agreed with my MD and that it was unlikely I had PMR, he phoned me the next day and told me to stop my steroids, and made another appointment for me today (Friday 9th). I have had a very uncomfortable week without steroids, unable to stand up for most of the day, went back this morning to see Consultant. He told me my bloods were spot on, and I had more bloods taken this morning he said these tests would be compared i.e. with and without steroids and this should definitely confirm PMR or not. He is to phone me on Monday with the results, if not he has arranged an MRI scan to investigate possible spinal problems. Your observations would be appreciated.

[PMRpro Ambassador in reply to tonythecatx]

How long had you been on how much pred when you were told to stop it immediately?

[tonythecatx in reply to PMRpro]

Started on the 27th Oct 20 mg reduced to 15mg on the 12th Nov and then to 10mg on the 3rd Dec stopped the next day on the 4th.

[DorsetLady PMRGCAuk volunteer in reply to tonythecatx]

So about 5 weeks then? Irresponsible action from your consultant- he has left you in danger of steroid withdrawal symptoms at best, and of an adrenal crisis at worst.

Did he explain that or give you any advice on what to ?

If you get any of the following symptoms you need to seek medical advice -

Signs of crisis can include severe dizziness with serious vomiting and/or diarrhoea. People having an adrenal crisis may have sudden confusion, tiredness, headache, extreme weakness,chills or fever.

[PMRpro Ambassador in reply to tonythecatx]

As DL says - totally irresponsible to stop pred suddenly in a patient on 10mg after 5 weeks. You have been lucky - could have been nasty. And you aren't out of the woods yet. Are you restarting pred?

[tonythecatx in reply to PMRpro]

Thanx for your speedy replies PMR pro & DL, I have had none of the problems you have highlighted, nor did he offer any advice on possible crisis symptoms. As I said earlier I have had a very painful week, today visiting the Consultant I had to use a wheelchair, the first time in my life. I am not re-starting pred until a decision is made on Monday following the blood test results.

[DorsetLady PMRGCAuk volunteer in reply to tonythecatx]

okay - let’s hope you have as good a weekend as you can.

[tonythecatx in reply to DorsetLady]

Consultant phoned me yesterday ,Monday 12th, said he had the comparison blood results and that they were slightly different, told me to restart Pred. at 20mg did so and by late afternoon symptoms had practically disappeared. However woke this morning and they were all back, so took 25mg hopefully to help, not too bad a day today by lunchtime. Will see what tomorrow brings?. Do you think it would be helpful to split the dose during the day?

Consultant is to phone tomorrow.

Thanks again for your assistance DL & PMRpro

[DorsetLady PMRGCAuk volunteer in reply to tonythecatx]

I would stick with a single dose initially and give it chance to work -snd see what consultant has to say.

Do tell him to you increased though …and maybe ask about splitting dose.

Please let et us know what he says…

[PMRpro Ambassador in reply to tonythecatx]

First take it as a single dose - splitting comes later. Some rheumies don't approve of splitting - so play it by ear.

[tonythecatx in reply to PMRpro]

He did not phone as promised, but sent me an e-mail yesterday Friday, "Hi TonyI was going to give you a bell. I think the MRI of your back would be helpful… let’s give the 20 mgs another 3-4 days before we decide next step.Keep me posted." The MRI is booked for Thursday the 22nd. The pain has been the same for this week except during the last 2 nights when going to the bathroom, twice on both these nights, there has been no pain at all?, however it comes back with a vengeance when rising for the day!!!. still on 20 msg. Any thoughts?? Many Thanks once again Ladies.

[DorsetLady PMRGCAuk volunteer in reply to tonythecatx]

Sounds as if the 20mg is not lasting the full 24 hours -which does happen for some.

But if things have improved (partially) over the last couple of days maybe stick with it as recommended and see how it pans out.

I would be contacting again -Wednesday perhaps so he has time to get back to you before Christmas.

Not sure how long it takes MRI results -but a couple of weeks I guess, so you need guidance before then.

[PMRpro Ambassador in reply to tonythecatx]

Before pred, if I got up about 3-4am I wasn't stiff or in pain but by 5am or later I was. The inflammatory substances are shed about 4.30am ...

As DL says, if the antiinflammatory effects isn't lasting the full 24 hours that could account for the effect if not enough inflammation has been cleared out to give a low baseline. Splitting the dose MIGHT help.

[tonythecatx in reply to PMRpro]

I had the MRI yesterday at 16.00 hrs. and was woken this morning by a phone call from rheum at 08.30 with the results. He has diagnosed me as having spinal stenosis and told me I need fairly urgent neuro-surgery, a smashing Christmas prezzie!

[PMRpro Ambassador in reply to tonythecatx]

Well that's nice. NOT! But what does fairly urgent mean? And it doesn't stop you having PMR too ...

[DorsetLady PMRGCAuk volunteer in reply to tonythecatx]

Sorry to hear that…..but as PMRpro says doesn’t mean you don’t have PMR as well.

[tonythecatx]

Hi folks, an up-date, past 3 months have been a roller coaster, still awaiting date for spinal surgery on L3/4, but my surgeon says I have to reduce my use of pred before the procedure which I have been doing over the past months and now down to 6mg. But I am in absolute agony most of the day, only relief i get is when sitting or lying down, I have been prescibed Gabapentin 300mg and Paracetemol1000mg 3 times a day for pain but feel no relief at all, I had a CT scan on Friday and still awaiting results. Any thoughts. Many Thanks, Tony

[PMRpro Ambassador in reply to tonythecatx]

Since the pain is almost certainly due to the PMR - only pred will relieve it. If you are even slightly too low in dose, over time the inflammation will simply build up until you are back where you started. Nothing else will deal with the pain. Except possibly Actemra but I doubt the surgeon will be happy about that before surgery either and you are in the UK so not offered for PMR. They may think it isn't PMR - but there is nothing to say you can't have both.

[tonythecatx]

Thanks PMR, I am presently on 6mg of Pred, what would you suggest 20mg? and should I stop the Gabapentin?, Tony

[PMRpro Ambassador in reply to tonythecatx]

None of us can advise there - you will have to talk to your doctors since you are waiting for surgery that you need to reduce your pain. It is a complicated situation. I was just explaining WHY you probably have so much pain.

[DorsetLady PMRGCAuk volunteer in reply to tonythecatx]

As PMR says, a question for your medical team - you are trying to please two masters at the moment - your PMR pain and your surgeons wishes - - someone has to find a sensible balance.