Well would you believe it,went to see my new rhumey today,and came away feeling absolutely gutted,my old rhumey has left all of a sudden after being headhunted by one of the big hospitals in London.And guess what i'm back to square one with this new guy,he knows best,i know nothing,according to him i do not have and have never had GCA OR PMR .stop taking the steroids will see me again in 3 months and wants me totally of pred in that time on 20mgs at the moment.Its no wonder we all have a pain in our head from all this bashing it on walls.My old rhumey had said I definitely had both conditions,but then again what would he know when this jumped up ******* thinks he's god and knows everything.I just want to cry and scream at the moment,i spent a couple of years with different rhumeys being told it was'nt this that or the other,then we get a good rhumey come to my local hospital he says yes you have got it.Now this one..........he twisted everything i said,he even blamed it all on GP's ,if they did'nt tell us about such conditions and the effects they can have on us then none of us would think we had them.Anyway thank you all for listening to the rantings of a stupid ,brainless,can't think for herself person who likes to think that she has an illness .Oh i did ask him as i was leaving his room for his full name so i'd know who to point my finger at if in the future i should loose my sight.Thanks again everyone i feel a bit better now.
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Limoqueen
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Go and see your GP tell him or her that you never want to see the consultant again you cannot come off 20mg of prednisone per day in 3 months you will suffer severe withdrawal problems
Yes - go to your GP, tell him you will not see that consultant again and want another referral if your GP is not happy to manage you - which he can do. It is appalling medical manners to say that the previous rheumatologist was totally wrong when this new one has never seen you before.
I have come across a few such consultants recently who are taking this "I know it all and my predecessor was wrong and the patient being informed is a BAD THING because we get above ourselves".
I do know one lady who has been through the same thing having been told she doesn't have PMR but fibromyalgia and must stop the pred that did at least allow her to be relatively pain-free. She has been referred to a different hospital and the new rheumatologist has done more tests and is confident it is a different inflammatory arthritis - but she is now dealing with it and monitoring the lady closely.
But GCA is a different matter - the sooner they come up with a decent test that can be rolled out across the NHS the better because not having a positive biopsy always leads to this sort of situation when you get an arrogant doctor at some later stage who thinks he knows better than the doctor who saw the patient at the time.
Did the pred deal with the symptoms fast at the time? Where are you based? Maybe there is a rheumy within reach who has a better record with accepting his patients reports on PMR/GCA and their symptoms or who does further investigations to at least get more information.
Was in my GP's office at 8.30 this morning.He saw me before surgery started.He's really annoyed with the attitude of this new rhumey,he has said that at the present time and with the flare i'm having there is no way on this earth that he is letting me reduce my present dose of pred.My GP is fantastic and really listens,when he first said i had GCA/PMR i responded really well with the start of pred,have reduced preds many times over the years,but once i get down to 7.5 mgs or there abouts i seem to have a flare of symptoms and end up having to go back up on the pred.I live in west wales,and i have told my GP that there is no way i'm going back to that hospital for anything ever again,seems to me that everyone in my area is complaining about the hospital and the attitude of the consultants.I was awake for hours last night with it all going through my head,i'm convinced that the rhumey i saw was a woman and gp hating person,another thing he kept asking me was,what was my husband like,what sort of person was he and the more i think of it the stranger it seems,was he trying to imply that my imaginary pain (as far as he's concerned and those are his words)is due to my husband.Anyway have to go,i'm babysitting my autistic grandson at the moment and he's getting bored,so we are now going to play with our furbys(yes i have one to) it makes it more fun for him,and easier for me,thank you all for your helpful replies,it makes you feel a bit better about things when you know that there is someone out there that understands what you are going through.
Have you seen the reports about the Welsh NHS in the Daily Mail. Given the treatment I know other people in Wales have had besides you I can imagine they aren't far off the truth though normally I'd take anything the DM said with a very large pinch of salt.
Stick to your GP - who sounds well worth having. I have no idea how to make complaints about a"$*%^)*£ in hospitals. I can only suggest better specialists - but being in Wales you'd have to move...
By the way - have you tried my reduction plan: "dead slow and nearly stop"? Someone else has a similar one that is also being used by a rheumy in the NE - and gosh, he finds it works! I always got stuck at 9mg. Now at 4mg without problems and I am not the only one.
The other thing your GP might like to consider is doing an adrenal function test - it CAN be done while still on pred but has to be interpreted differently. 7.5mg is a common sticking point, it is the point at which the adrenals will have to start to take up the slack and if they aren't playing ball you will have problems.
No i have'nt seen the daily mail,i never buy newspapers,have to get hold of it and have a read,i have'nt tried your reduction plan yet but i will be doing so once my GP says its ok for me to start reducing,was talking to him about it this morning funny enough,mentioned it to the rhumey yesterday after he had a go at me to reduce as quick as he wants me to,his face was a picture as he obviously knows about that reduction plan but insists on it being his way,he presumed that a doctor had told me about it,and I presumed not to tell him any different.Seeing my GP again next week unless i have problems before hand he says,will ask him about the adrenal blood test then.Got to say my GP is fantastic,nothing is to much trouble for him.Have already told him that when he gets to retirement age that he's not allowed to finish until i'm in my box.Only one problem there he is only 2 years younger than me.
I don't buy newspapers either - since I don't live in the UK - but read them online. Free! I use this site dailynewspaper.co.uk/
It usually takes me about 20 mins to read the Indy, Guardian and DM as I only read anything new and of interest. Times and Telegraph are snooty enough to want money to read them on line so I don't bother...
You have a good GP - but I know the problem. All my peers at Uni have retired, mostly due to stress, and some who were much younger have too. Sad state of affairs because their replacements are sometimes dire.
I won't add anything as you have been advised well so go see your GP.
It's all absolutely bonkers Limoqueen, same experience as you diognosed with GCA following months of headaches culminating in excruciating temple pain.
My lovely GP recognised this straight away and following a rapid blood test (results same day) which revealed high inflammatory activity I was started on 60mg pred straight away.
The pain vanished in hours, this was followed by a visit to see a senior Rheumatologist at the hospital and I was given a definitive diagnosis of GCA.
Three months later another Rhumatologist who I have never met wrote a letter to my Gp and it was just by chance that I learned its contents as a copy was never sent to me.
It made for interesting reading I Quote, Since this patients inflammatory markers are within the normal range it is my opinion that he does not have GCA and that his temple pain was due to referred neck pain what an idiot she was to make such assumptions without even meeting or examining me, and how pompous not to send me a copy of the letter.
Months later having developed PMR I went back to the same hospital in Suffolk this time I was seen by this women's underling registra who I assumed was fresh out of medical school and after explaining that I was suffering from awful sweats, fever, dreadful pains in my back, hips and legs, he came up with his own crackpot theory of what was wrong with me.
Can you lift your arms above your head he asked, Yes I replied. WELL YOU DONT HAVE PMR.
I have since seen Professor Dasguptor at Southend Hospital who has diognosed me with both conditions.
I am so alarmed by these misinformed and deluded people who are a menace and disgrace to their profession and I can only assume that because of the rarity of these conditions they can't be bothered with us and fob us off with inexcusable nonsense.
I do hope that this gives you a small amount of comfort Limoqueen, as for me I have just cancelled an appointment with my local Rheumatology dept telling them that I have made other arrangements and won't be requiring their services.
I have got raised inflammatory markers to.rhumey asked me yesterday when had i last had blood test,told him that was a week ago,done at my GP's request ESR 72 CRP 58 oh well he says can't take any notice of them don't know why gp's request them he said they relate to nowt and mean nothing.I for one do agree that they are a disgrace to there profession.If they don't want to do there job properly then jog on and let someone else do it( hopefully someone much better than they are) they are only in the medical profession for the over inflated monthly pay packet,and as far as we are concerned we are only worth 50 pence.Wonder what his diagnosis would have been if i'd gone private to see him.Anyway thank you for your support and kind words.I feel quite bitter towards that rhumey today,and thats not like me.
I wouldn't mind so much if PMR were really rare. But it isn't - it is the most common rheumatic disorder in over 65s. But there are a range of total misconceptions about it - like pred leaves you pain-free and back to normal (if only), that all patients have exactly the same symptoms, that it burns out in 2 years (if only). Oh yes - and only old people get it.
And then Limoqueen's "the ESR and CRP mean nothing" - well they may not be 100% but hers show there is definitely something not right. And if I remember rightly they are not usually raised in fibromyalgia since it isn't inflammation, it is a problem with signalling, nor would they be raised in somaticism (the posh word for his "imagining", cheeky sod) and it would be raised in other inflammatory arthritises.
It is appalling how little GP's and Rheumies know about PMR/GCA. The Rheumy I am "seeing" also did the arms above the head test. She in her wisdom has concluded that I do not have GCA. Biopsy was inconclusive and therefore we can start tapering the Pred from 60. Pain returned after a few days of tapering to 55 (she wanted 50), so nursing station advised, " we're not allowed to say this, but you know where your pain was controlled". This is in Nova Scotia and our healthcare system is grossly lacking.
I feel your pain and frustration completely. Had to go into my GP yesterday to get results of blood work done in ER the night before (had been there 12 hours). Cannot reach my Rheumy - ever. She's one of the "unreachable stars". Anyway, he actually got a report from the Rheumy after beefing about not being kept in the loop. The Rheumy told him I do not have GCA (actually biopsy was inconclusive, as I've been on Pred since Jan 2022). Where my vision is concerned, I would rather err on the side of caution.
I've been becoming increasingly fatigued, weak and shaky over the last 3 weeks, to the point where I have to hold on to furniture to get around. This is the reason for ER trip. I wanted to convey this to the Rhemy. My CRP was at 3 which is great, but also on 60 mg of Pred at this time. Rheumy wanted me to reduce to 50. Tried 55 mg, but pain returned after a few days. Back up to 60 mg. Going through what ER says is a UTI (or at least white cell count is up and urine a bit merky) and also now on Ceflex 500, which is very hard on the gut.
GP sent an email to the Rheumy in hopes of finding some answer regarding a slower taper on the Pred and as I explained to him "inconclusive" is not "you don't have GCA". My eyes have been so sore and I don't want to risk my vision. I do have a follow up with Ophtamology on Monday next.
Then he proceeds to tell me he no longer wishes to be my GP and I will have to find another doctor (not easy in NS), but better off without HIM and actually I had expressed the need to find someone else weeks ago and put myself back on the list. His issue: He does not believe in the anxiety med I've been on for 20 years and will not prescribe it. This is the mildest dose (.5 mg, 1 per day. On my last trip to Rheumy on Jan. 8, after much explaining about how this is not a really great time to taper the anxiety meds, she relented to filling a script for it, if I conceded to talking with a psychiatrist, which I should have done back when I was a 14, not at 72. Why not. Never did get a call for the Psych. Obviously, being quite mysoginistic, GP took great issue with her "overstepping" his decision on the anxiety meds, because that became his issue of the day.
So now, I'm between a different rock and a hard place. The only reason I even went back to this GP is to get the lab results because the Rheumatology Nursing Station said I must and that they cannot get a message to to my Rhemy, "it has to be the GP who reaches out to her".
I'm so very sorry you're going through this. Stick with this forum, you will get more answers here than from any GP or Rheumy.
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