Your Opinions Please

Bones, joints and muscles
1

Hi all,

Some very simple questions for all you 'wise owls'.

I am due to see my doctor tomorro. I am currently back on 15mg of Pred, after experiencing bad leg pain when he (quite wrongly, as I have sinced learned from this forum) dropped me from 15mg to 10mg.

I have been back on 15mg for about a month now, and although things have improved, its all seemed to have come to a halt.

To be honest I am expecting the doctor to drop my dose again when I see him, as getting me off the preds as soon as poss seems to be his goal.

I feel a lot better on 15mg, but I am not free of pain completely, as I still get a some niggly pain every morning on getting out of bed, and last thing at night before going to bed. I find it is better some days than others.

Question is: As I am still getting a degree of pain, is it better that I stay on 15mg and wait (and hope and pray) for the pain to go in its own time?

Or, as I am not seeming to continue to improve, should my dose be put up even higher to blast this leg pain away completely?

Maybe my dosage should not be dropped at all at this time? I am of course a bit wary of doing this as I don't want the pain to come back even worse as it did last time.

I know you are not doctors but your opinions would be appreciated.

gilly.

2

Hi gillybee......... cannot respond with any real degree of experience because I have just started my PMR journey and like you, was dropped from 15 to 10 :roll: :roll:

I did not respond at all well once back on 15 again and yesterday my doc put me up to 20mg and has requested that my rheumatologist sees me asap as she is concerned my 'symptoms' not under control.

I am sure that your doc will think seriously about upping your dose to get on top of things......

Good Luck and let us know how you get on :ok:

3

hello Gillybee

This is difficult as we all seem to be different in the way we respond to this I and quite a few others seem to respond very quickly to increased steroid doseage but some people seem to take weeks for an improvement

My Dr is definately a zap it quick type At the beginning of last year when I had a blip I was tring to increase my doesage slowly in the hope I wouldnt have to go too high I had crept up from 4 to 10 and my bloods were going up but when I saw her she said I think you will need to go up to 15 to control this and after a few more days of pain I had to give in and agree with her It took me about a week to feel better and I certainly felt quite listless for another month my initial dose had been 20 anyway so I wasnt quite back to square one but after 15 months it certainly felt like it !!

It is obviously better if you can work with your Dr on this but if they seem to have little knowledge of PMR its not going to work and it might be a case of saying I am in pain I cannot function normally with this pain so I dont think I can cope with a reduction and if they are very insistant you need a referral to a Rheumatologist It is easier if your bloods show all this ( as mine do )

As for doseage being higher as I said my initial doesage was 20mg with both bouts of PMR but with my 2nd bout my bloods were much higher than my first bout and my Dr said I dont want you to worry if we have to go up to 30mg to get this under control as the most important thing is you are pain free and we can reduce later Luckily I didnt need 30

Having PMR it is easy to put every pain down to it !! but sometimes if I have an ache somewhere I think well would I have it anyway ?? I will see friends and they will have a backache , knee will hurt etc but I always think is mine PMR pain

But definately you should not be praying for the pain to go away and you feel bad enough to be saying that personally I would sat the doseage cant be enough to do the job its supposed to

best wishes for a successful visit and make sure you go prepared !!

Mrs G

4

Hi gillybee,

If its any help I started on 15mgs in September 2009 and stayed on that dose for almost 4 months. My Consultant didn't want me to start reducing until the pain and stiffness had gone. Although I experienced fantastic relief within the first few hours of starting on the Prednisolone, I've looked back on my records (I kept a daily diary for the first few months) and I had some pain off and on for about three months although never as awful as when the PMR first started. She wanted to get me free of pain before starting to reduce the steroids. I feel that the longer time on the higher dose has enabled me to reduce very comfortably, but I have nothing to compare it with of course. I do hope you have a successful appointment with your Doctor :doctor: tomorrow. The pain will go and you will get better, it just takes time. I wasn't in a very good place this time last year, but I'm feeling very well now and am down to 3mgs. Take care and keep us posted.

Lizzie Ellen :D

5

Hi gillybee

As all our pain thresholds are so different, it's a little difficult to advise you.

You say that you are not \"completely pain-free\", are \"still getting a degree of pain\" and ask if the dose should be increased to \"blast the leg pain away completely\".

My experience was that I was never completely free of pain and/or stiffness, especially when first getting out of bed in the morning, until reaching the really low doses but I was able to rely on my blood tests - if they showed inflammation I didn't reduce; if they were normal then the rheumy gave me the go-ahead. If you are one of those people whose blood tests do not show increased markers, then you really only have your pain levels to guide you. You could just try a 1mg drop and see whether the pain increases and doesn't ease up after a week or so, but perhaps others will post their experiences which may then help to answer your question. But certainly your Dr shouldn't be aiming to \"get you off the Pred as soon as possible\" - his aim should be to get you to the lowest dose that is comfortable for you.

Do let us know how you get on tomorrow.

MrsO

6

Hallo Gillybee

Others have said it all and I cannot add anything useful. If you ever get the chance to discover why doctors ( some ) are so much in a hurry to reduce the Pred. I'd be very interested to hear. Almost no-one starts on anything higher than 20 and 15 is more usual but it wasn't so when I had PMR first time eleven years ago.I got from 30 to nil in three years and did much better much sooner thanthis time, starting on 15. Also GCA victims are started much higher and don't blow up or appear to have any extra problems. It's not an expensive drug so what IS the explanation?

Good luck with your appointment. BettyE

7

Thank you all for your thoughts. I will certainly let you all know what happens tomorrow.

I also agree that too many people, particularly in the medical word, say negative things about steroids.

Personally, I have never felt so well in myself since I have been taking them.

Lets face it, where would us PMR sufferers be without them??

I look at them as my friends! :wink:

8

gillybee

Hope you see this before you go, extract from BSR Guidelines issued June 2009 (full guidelines available on BSR website, NHS Website and yes www.pmr-gca-northeast.org.uk) which perhaps your GP has not seen at all.

5) We recommend the initiation of low-dose steroid therapy with a gradual tailored taper in patients with straightforward PMR.

[Level of evidence 2, Strength of recommendation B]

In the absence of GCA there is little indication for urgent steroid prescription before the clinical evaluation is completed.

The suggested regimen is:

· Daily prednisolone 15 mg for 3 weeks

· Then 12.5 mg for 3 weeks

· Then10 mg for 4-6 weeks

· Followed by reduction by 1mg every 4-8 weeks or alternate day reductions (e.g. 10/7.5 mg alternate days etc)

Usually 1 to 3 years of treatment is needed.

However, there is heterogeneity in PMR, in both response to treatment and disease course. Therefore the approach to treatment must be flexible and tailored to the individual patient, with some patients benefiting from a more gradual steroid taper. The dose may also need adjustment for disease severity, co-morbidity, side effects and patient wishes.

Somewhere in those lines it does say that if 15mg does not give relief up to 20mg but its too big for me to read it all at this time of night.

Do not put up with pain, steroids are there to control it, no know cause or cure and the GP is not experiencing your discomfort - it is your body and only you know how you feel.

Good Luck

9

Dear Mrs K, Thank you for the long informative posting. Notice you were up in the middle of the night. Hope it was not because of pain. I am going to read your comment again, so that I can retain it in my wooly brain. Hope you have a restful day, and no pains. Poor Gillybee, needs a lot of support from all of us at present. Hello Gillybee, hope all will be resolved in such a way that your pains will be kept under control. This is all we can pray and hope for. We are all in this together. :love: :rose: Granny Moss xxx

10

Agree re gillybee...... hope you will get sorted asap smile smile

11

Hi all.

Thanks again for your replies and support. And thanks mrs k for your little bit of info.

Well, I am just back from the doctors ,and guess what..He wants me back on 10mg. :roll:

To be fair though, he did take some time to listen to what I had to say, and he gave me (and my dodgy hip and leg) a thorough examination on the couch. To which I felt no pain at all, and felt fit enough to run a marathon!

I explained what was happening to me in the evening and first thing in the morning, and the type of pain that I am experiencing, and basically he thinks that maybe what I am getting is not the PMR.

He said he thought that my pain might be nerve related, or a bit of sciatica, as I do get a bit of pins and needles as well as the sharp pain.

He also told me that the results of my recent blood tests were very good and reading normal with no inflamation present at all (how odd). This is what makes him think that this pain something else.

So, he has told me to drop to 10mg again, which of course I am not going to do imediatly. For starters I will try the method that mrs k suggests and make a start on 12.5mg.

Will keep you informed of my progress.

Hope you all have a good, and dare I say it, painless weekend.

I am looking forward to seeing two of my little grandaughters on Sunday.

gilly.

12

gillybee....... my pain 'markers' have never been elevated and some people do not show elevated levels to prove high levels of pain :roll: :roll: My doc told me that this is normal in quite a few PMR people and proves nothing....... does your doc not understand this? What were your markers when you were diagnosed?

Of course I know nothing and to me the fact you are still not comfortable on 15 and now being dropped gives me the screaming habdabs!!!!!! I might be out of order here and other girls will tell me so...

I DO SO HOPE your doc has gotten this right :roll: sad

13

Gillybee - the blood markers are a guide and no more. The ONLY indicator of how you are is your pain and stiffness. And that is a quote from a top-notch rheumatology textbook written in the USA. Not something I made up for fun.

I have never had a raised ESR or CRP even when I was almost crippled with the pain and stiffness. And I am not alone. It was the reason I was not diagnosed for about 5 years - \"the blood values are all normal\".

I will also repeat the advice that a fast reduction of the steroids can, in the long term, lead to a yoyo-ing of the dose which seems to have an adverse effect on the anti-inflammatory effect of the steroids and also leads, in the end, to a higher total dose of steroids. Rushing at reducing the steroid dose is associated with relapses. The steroids have not cured the PMR - and I do not understand what the doctors are trying to achieve by reducing the dose so fast. It is bound to result in a return of the pain and stiffness if the disease process has not gone into remission on its own.

Sorry - I can't remember now if this is your GP or your rheumatologist, but either way, I would be demanding another opinion. If they don't think it's PMR they need to come up with another option.

EileenH

14

Hello Gillybee

Im afraid its all very well him saying its something else but if it is what is it and what pain relief is he going to give you for that ??

I would have thought all GPs should know that PMR doesent always show in your bloods Mine werent elevated much the first time around not enough to give me steroids without a trip to a Rheumatologist but my Dr was convinced I had it even though I was only 54 but my symptoms were classic

If you are in worse pain next week I would go back and plead your case again for a referral surely if he thinks you have sciatica they give you some treatment for it

Hope you dont have too much pain

Best wishes

Mrs G

15

Hi GillyBee,

I am one of the lucky ones, in so much as anyone can be with this illness :cry: , as any increase in my pain has a corresponding increase in my ESR and CRP, so it is blatantly obvious to my rheumy if things are not going well.

However, there are so many people on this site whose blood work shows NO change, that it alone can not be taken as a sign that all is well :roll: .

The whole purpose of taking the steroids (and none of us take them for fun) is that you are able to function normally and without pain....and if that means a higher dose, then so be it.

My rheumy is VERY keen to see me on alower dose than my current 14mgs, but my body has slightly different ideas :oops: .....but personally I would prefer to be in this journey for a longer haul and get out the other end with no more relapses than try to rush things and end up back at square one :cry:

Going from 15 to 10 is a huge drop as I am only going down Img every 2-3 weeks as tolerated from 15....dropped to 14 on monday & so far OK.

I will have more blood checks when I get to 12 to make sure everything is on track and the plan is for me to be down to 10 by the start of April...so not going anywhere in a major hurry :roll: as that will be a year after I started on this roller-coaster.

My advice would be....listen to your body, and if you are not comfortable then keep going back to your doctor until they REALLY listen to what you are experiencing & treat you appropriately.

Best wishes, Pauline.

16

Good Morning all.

A quick update before I spend the day entertaining my daughter and my grandaughters smile .

Well, 2 days on 12.5mg, and all is well so far. The morning pain seems to be very gradually easing. So I am at the moment feeling quite optimistic and keeping my fingers firmly crossed. I will carry on with the gradual drop of the Pred for the time being.

Will continue to keep you posted.

gilly.

17

That is so good to hear :D :D

18

Brilliant news. Just don't go too mad :run: and keep the drop gradual. Hope you had a great day with the Grandchildren, mine are all grown up and grumpy :lol: (but I still love them dearly :winkeye: )

Lizzie Ellen

19

My grandkids aren't grown-up and grumpy - just pre-teen and grumpy! :roll: However, I have just discovered that only my daughter and grandson are coming skiing on Tuesday as the granddaughter has a severe recurrence of asthma/a lung infection and wouldn't be able to do any exercise even if she were to be allowed to fly so she and dad are staying at home :cry: It would have been the first time for years that all our family would have had a holiday together so it is such a shame - not to mention she is absolutely gutted at missing her skiing! She wasn't bothered at possibly ending up in our local hospital (she's tried it out for the same reason before) but her parents were less enthusiastic, needless to say.

EileenH

20

Good new Gillybee

A lot of people on here had been struggling recently ( partly to do with their Drs ) I am thinking of recommending my horses Vet soon if I read much more about Drs not listenning or caring !!

So sorry Eileen you wont have all your family with you and very disappointing for your granddaughter Easter is probably a bit late for skiing this year

I was reading in the papers all about the first signs of spring here so living in hope

Best wishes

Mrs G