Being re-referred to hospital

Fiftiesgirl......sending you a big virtual hug :hug: and hope that you get seen as soon as possible at the hospital and get back on track with your pain management.

I burst into tears once at my rheumy's.....a man clearly not used to weeping women as he just sat back in his chair and waited for me to stop :roll: .

My Gp is much more atuned...its a big bear hug and a box of tissues from him, and he just seems to automatically know the right thing to say.....but then , he has known me for years.

I really hope that you feel better soon.

very best wishes, pauline

Surely if you have already been to see a rheumy last year the GP can call the secretary and ask for an urgent consultation - or at least advice? I know things have changed in recent years but that was always an option for a concerned GP. \"Re-referral\" suggests going through the process again which means you may not see the same person (though is that a positive or negative?) and there is a risk of it being deflected by the nonsensical screening system in place in some places.

However - the precipitous drop that has allowed the inflammation to resurface may merely have made that initial regaining of control a bit more difficult and the 20mg may do the trick and allow you to start again. Some experts say the starting dose should be 20mg, others say 15mg and raise it to 20mg if the response is only partial.

The tests she wants are probably the ESR (rate the red blood cells fall to the bottom of a tube) and CRP (a protein produced in inflammatory states) but if they weren't raised before it isn't that likely they'll be raised now, mine have never been raised and that is the case for about a fifth of patients with PMR. In fact, even patients with GCA can have normal levels of these two tests! They are just very general indications of something going on (ESR is even raised in pregnancy - not a problem for most of us I imagine!)

If you don't get a good result with the 20mg though I'd be keeping on the case with the GP - make sure she follows up the referral and it doesn't just disappear into the great referral limbo! There are rules about how quickly you must be seen and hospitals get their hand smacked if they don't achieve it. The trouble is, of course, that EVERYONE who demands to see a consultant joins the queue and that slows down the journey for the more serious demands. This was the reason for the \"committees\" which look at every referral and may divert a referral to a nurse specialist or a physiotherapist - who then say, this patient needs a consultant (just as the GP probably did to start with). Once you get an appointment it may help to call the consultant's secretary and say you will take a cancellation at short notice - find out the clinic day and keep that free-ish so if they call you at 4pm the day before you can go. (Suggesting you have a holiday booked before the expiry of the window for the hospital to see you usually also ensures a timely appointment as they will offer you an appointment then hoping you will then turn it down and they can then send you to the bottom of the pile! Cynical? What me? :roll: :lol: )

And well done for the tears - got the message through! Don't be ashamed!

keep us informed - I know you will - and good luck

EileenH

Hello fiftiesgirl and a big hug :hug: from me to.

As you had such a good response to the initial starting dose of 15mg, it does seem as though the fast and steep drop may have caused the inflammation to take hold so that even a return to 15 wasn't sufficient to get it under control again.

Your Dr sounds lovely, but I don't think she'll be advising any future PMR patients to do such a large drop in one go!

Hopefully your re-referral(?) will come through quickly. When I was first referred to the rheumatologist my appointment came through in 2 weeks (admittedly it was suspected GCA). When the appointment letter came through I was very cheeky and rang the consultant's secretary to ask if I could be seen by a rheumatologist who had been highly recommended to me - she was a gem and I had my wish. At my first appointment with the rheumatologist he gave me a contact number in case of emergency - I think I was very lucky and I remained under his care for 3 years until I got down to 2mgs and was discharged. Even then he gave me a 6-month referral avenue straight back to him in case of need.

Following my above experience, perhaps it would help if you, too, rang the rheumatologist's secretary when you get the appointment.

The 'referral' bit must be catching today - I have just seen my GP and he is referring me to the hospital's maxillofacial department as my salivary glands are still refusing to return to normal after my throat infection in December - there is some sort of tiny spot on a swollen gland under my tongue too - another 10 ton truck as Mrs K would say!

All the very best and I do hope that the 20mgs does the trick now and the hospital visit will just be a formality - fingers crossed.

MrsO

Hello Fifties Girl

Im glad your DR is taking you seriously but she obviously feels a bit out of her depth with PMR as I suppose Drs only usually deal with the routine cases which respond normally to treatment

When I first had PMR because my bloods were so low the senior Dr in the practice wouldnt authorise steroids so I had to see a Rheumatolgist The NHS waiting time was 3 months and the so I went privately in 2002 it cost me aprox £140 and the best money I ever spent If I hadnt I would have spent 3 months in bed crying with pain

He wasnt a pleasant man !! but agreed PMR but said he wanted to do blood tests to rule out anything else I asked how much would they cost he said over £300 !! There were 17 I think !! So I asked if I could have them done on the NHS He said in a bit of a huff IF YOUR DR WILL AGREE THEM !! ( A friend had already done this before ) I said Im sure she will and off I went had the bloods done on the NHS and I started on steroids and never had to see him again Thank goodness

When my PMR came back I was able to have them without a referral but I must admit I would have a refferal again if I had problems

I really hope the 20mg does the trick and it will be onwards and upwards or downwards with the steroids from now on !!

Best wishes

Mrs G

Fiftiesgirl, I am ashamed ( sincerely I am ) because this morning at 4 am I woke up with pain in my hands and I burst out crying. I read this page, and thankgoodness for the lovely \"girls\" here that are far more sensible and can give the emotional support you need. Granny Moss :rose: xxx

Hallo again Fifties girl. Glad to hear you got a good response from your GP. and hope that 20 does the trick for you. 30 did it for me after weeks of no-one knowing what was wrong but that was 11 years ago and (except for GCA cases ) 20 seems to be the upper limit now. Have never discovered why.

If there isn't a noticeable improvement within a week or even less I think I'd be back at the surgery. Three weeks seem a log time to wait. My doc always says come back if you need me and I get an apppointment within a couple of days or same day if it's urgent.

Look forward to hearing some good news from you. BettyE

Betty - I think the reduction to the 15/20 mg dose is because there is a feeling that the old regimens were using a sledgehammer to crack a nut! The vast majority of cases respond to 15, a few need 20 - and if not, then the suspicion must be that there is something else going on which needs investigating further. And the desire is to keep the total dose of steroids as low as possible to avoid side-effects.

Was it you asked about the history of steroid use? Someone did. They were \"invented\" in the late 40s after cholesterol and stuff was discovered and they looked for artificial substitutes for cortisol. I don't know if it is true, but one story is the money ran out because of the war and the last remnants were handed out to various people who were told to see if there was a real use for it. A wheelchair-bound woman with rheumatism of some sort was given some and 4 days later walked out of the hospital! Funding was continued to develop this miracle drug - they thought they had the cure for so many diseases, especially rheumatoid arthritis. It was only a few years later that the long term effects of the massively high doses they were using surfaced and this resulted, to some extent, in the fear we see today. Used properly and carefully they are, literally, life-savers in some diseases and also return a quality of life to many people with less life-threatening ailments. But initially very high doses were being used and that led to trouble. They form the only treatment for a range of things - including PMR and GCA - but they still must be closely monitored and used judiciously. Those of us who don't develop horrid side-effects - and weight gain and a fat face are minor aspects - should be very grateful!

And Betty - you are so right! Just because the GP says see you in 3 weeks that is not to be regarded as written in stone: if you have a problem, go back sooner. My MIL used to say she always waited 3 days, and if it went away she ignored it. I pointed out that if you did that with a heart attack or a stroke it was possibly a bit late :roll: :cry: They are paid to look after you - if you need looking after, go!

EileenH

Hi all,

Granny Moss....never feel ashamed on here of having a good cry...we all know what the pain can be like and how frustrating it can be when you seem to be making no progress :cry: .

I for one, look forward to your posts and would love to think that I may have half your spirit when and if I ever achieve your age...I think you are an inspiration to us \"younger\" PMR sufferers.

Fiftiesgirl...Eileen is quite right, do not just wait if things are not improving for you...just badger the doctors until you get the treatment you deserve....after all, the doctors would be quick enough to get immediate help if they were the ones in pain :wink:

I had a lovely trip to an art gallery with my daughter this afternoon.....though I use the word \"ART\" advisedly for some of the exhibits......could have done better myself with a can of spraypaint and a canvas !!!!

Love to all, pauline.

\"fiftiesgirl\"

So sorry to hear about your troubles, i cried myself on my first visit to the doctor she was very nice and just let me cry it out.

I am now back up to 15 after being dropped from 15 to 10 in one drop. So I am back to sleepless nights again it is now 6.07am and i got no sleep at all yet. So I will give up.

That is good that you are going to the hospital soon, lets hope it gets all sorted real quick and that your pain will ease. hugs and cuddles for you

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I hope everyone else here is feeling as well as they can be

Thank you girls for everything.....

Granny Moss sending you some virtual hugs because I know only too well the pain you are in with your hands..... I do so hope you will have some relief soon.

Sparklin..... we have both had the same difficulties with the drop from 15 to 10..... as you can now see the 15 just did not help this time around which is why now on 20...... still in pain and have had a bad night with hips and hands but hey ho, fingers crossed the 20 will kick in soon otherwise will be on phone to the surgery.

Hoping hospital contact me quickly although did express to my doc my unwillingness to see the rheumy again because of his bedside manner and the fact he completely overlooked the PMR telling me I had osteoarthritis and a spinal problem :shock: :D Do I trust this man? NO.

A friend (who is ex NHS) came for a coffee yesterday and spoke to me of my need to find an excellent rheumy and I can see this person anywhere on the NHS.... so she is now researching for me as she wants me to be in good hands.

Problem is, my hospital Addenbrookes, has an excellent repuation as a centre of excellence and is also a teaching hospital... so to find a rheumy like this is somewhat of a shock.... I looked him up and on paper he sounds fantastic but the reality is somewhat different :roll:

Maybe it is just me?

Doc was very sympathetic about my feelings and said due to the fact she wanted me to be seen asap I would probably see someone else in the department.... fine by me!

Mrs O....... it was the rheumy who dropped me from 15 to 10, not my lovely doc who has since been trying to manage me!

Hope all you lovely ladies are feeling comfortable this morning.... sun trying to shine here and although am in pain in my hips and legs I AM going to have a potter out in a little while and walk the five minutes to the local shops and buy myself some lovely daffodils if the florist has some

Hi Sparklin

The lack of sleep can be horrible I always feel if i had a decent nights sleep I can cope with most things !!

I have mentioned these on here before but they work for me Nytol one a night not herbal (blue box but have to get from the phamacist not of the shelf ) You cant take them every night but I did find that even one night in three was a help !! It came out well in the Daily Mail sleep aids this week there were others but I cant remember them Possibly Tuesdays if you want to look on line

I hope the 15mg does the trick it seems you and fiftiesgirl are following the same pattern with your rapid drop from 15mg to 10mg and then struggling

Am going to start my 8 week programme to get from 3.5 to 3 today but it has taken me over 2 years to get there so fingers crossed I dont have a problem I am hoping its such a small drop that my body wont notice !!

Best wishes

Mrs G

Good Luck with the next stage Mrs G....... I can now understand the long and sometimes painful journey to get to this place so have everything crossed for you :D

FIFTIESGIRL

That's even more surprising :o that it was the rheumy not the GP who advised the steep drop from 15 straight to 10......the rheumy has specialised and one would expect him to be the expert! :roll: If your friend comes up with a recommended alternative, then maybe you should ring his secretary if the appointment comes through with the one you really don't want to see - as I said in my previous post, this worked for me and my referral was urgent too. Hope the little walk in the sun - and the daffs - will help to make it a better day for you (the exercise is supposed to release those feel-good endorphins). :rose:

SPARKLIN

I think the sleepless nights are one of the worst side effects from both the pain of PMR and the steroids - so difficult to feel well when you can't sleep. I used to find that a late afternoon walk helped me and there are certain foods that are soporific whilst others such as coffee and chocolate wont help. I also read the article in the Mail this week recommending Nytol and as it worked for Mrs G perhaps it could for you too. Meanwhile, perhaps you can curl up and cat-nap :cat: during the day. Hope your better days, and nights, come soon.

MrsO [/b]

Hello fifties girl

You live a long way from me so it wasnt the same Rheumatolgist he couldnt even be pleasant even though I went privately !!

I male friend who has very severe Rheumatoid arthritis was so fed up with his attitude that he told him so !! He had a personal apology by phone and much pleasanter treatment since !! I just feel so grateful for my Dr is so thorough and pleasnt with it !!

Have a nice walk lovely and sunny here and off to see friends for lunch so will have a nice drive in the sunshine through the forest Bought some daffodils the other day as I love them and they had such a horrible smell I had to put them in another room !! So the next ones I will sniff first !!

Best wishes

Mrs G

Mrs G

Good luck with the next drop from me too :ok:

I think you may soon be catching up with me - I've been on 1mg for many months now because of virus etc and Dr told me yesterday I should not reduce any further pending my hospital appointment for investigation into my swollen glands!!

Hope that Nordic walking is helping you continue down the road to recovery - I read that you felt very tired after the last one and I remember falling asleep for the whole evening after each one of my classes but I'm sure the benefits made up for the tiredness.

Keep well.

MrsO