So, having had a recent nasty flare (increased preds from 2mgs - 60mgs), I was looking forward to seeing my consultant, I had not actually seen her in over a year, a supply Rheumy who wasn't interested and a registrar so was looking forward to seeing what advice she could give.
But no, once again I saw someone else - a registrar (previously they have been ok), this one seemed to be unable to listen, have his rules for GCA/PMR written in his head.
So despite responding to Preds, elevated bloods, he wasn't convinced it was a flare. Didn't understand what feeling absolutely lousy, fatigued and sore was, probably my fibro .... he said.
On there advice I have got down to 20mgs, now I have to drop 2.5mgs every two weeks until 10mgs then 1mg a month until 0 - then you will be off them! I managed to hold myself together without either laughing or crying - and then he decided to smugly write a prescription, without any discussion and had me it for Amitriptyline - saying it was mostly lack of sleep causing my problems.
He had not read my records that I had been given these before and they didn't agree with me at all. No examination and totally ignored my comments about being ill for several months and I should not have continued to reduce steroids ..... my bloods are good he said, I pointed out I was on steroids he said if I was in pain it could not be the pmr or my bloods would reflect this, and he ignored my headache and jaw pain.
I know when I am beaten and smiled and gave up.
So I left with a prescription I was not going to get, my little list of questions I clearly wasn't going to get answered and the realisation once again, i was on my own with the exception of a little help from my GP and advice from this forum. Oh and the fact I had just spent 3 hours of my life I was not going to get back! Happy days !
Written by
lesley2015
To view profiles and participate in discussions please or .
Actually Amitriptylin one hour before bed did help my sleep and discomfort (10 mgs).
You really have been horribly neglected and wrongly advised. Using Fibromyalgia as a kind of catch all dismissal is also reprehensible.
I think people like that should be aware we could lose it and then... Watch out.
I have found that if you can't get help from someone to make sure you never see them again and call and make an appointment with the one you want to see. And let someone in authority know how you were brushed off. They need to know because bottom line it is a business. If we would all speak up instead of sitting like deer in headlights.. Well I still work on saying wait.
My new FNP Family Nurse Practitioner calls me in between appointments to see if I need anything or want any new labs n she coordinates all my specialists. She gets the whole picture n she tells me when she doesn't really know. Yahoo you can't know everything so she makes me feel safe.
As to amytrptline I have been taking it for sleep since my 40s when I had fibromyalgia so bad. 50 mgs a night. I have stopped it off n on for years but always go back due to enjoying my sleep. I normally get any n all side effects but it is one med that goes well with me..
Unfortunately , Amytriptyline doesn't work for everyone , and , in some cases can make the insomnia worse , especially if it increases side effects from other conditions .
For people with Pots or increased heart rate and palpitations with their Fibro or GCA/ PMR it can do more harm than good as it is a drug that increases heart rate as one of its main side effects.
It happened to me , instead of a knock out pill it became a jump up and bounce about pill instead!
I got af when taking it for 4 years. I used to sleep so well. Couldn't sleep when I stopped. I've started to take magnesium before I go to bed and it's really helping. Getting at least 6 hours now. Yay!!
You have the prescription , photocopy it before you fill it, this is great paper evidence that the Rheumy you have seen did not listen to you and had not bothered to properly read your notes before making a decision on your case. Tick against them.
Add a lack of a real physical examination , which they will believe as the prescription validates your version of events. Another cricket against the appointment.
Add the fact that you have never seen the same person twice in your case and get contradictory help. Tick against the whole department.
Now put in a complaint about your treatment and a request for another appointment with the original Rheumatologist you were happy to see and had expected to see again after so many temporary staff members.
Put this complaint in to the CoE of the Hospital , not just PACE , in a polite way , expressing your suprise at receiving this level of treatment at a hospital you had always appreciated and considered had a good standard of care ( buttering up the boss helps!).
Then add the sting in the argument, that although you would prefer for this situation to be dealt with speedily and internally , if you do not receive some form of positive action on your complaint you will unfortunately feel obliged to make an external complaint to the Trust.
Hopefully this will work and you will get the care you have not been getting but deserve.
If you do not feel well enough to deal with this yourself , and you have a calm friend or family member you feel happy to advocate for you, it is worth getting their help to sort this out now for you.
Take care and I hope you get some proper assistance soon. x
How awful. I had 3 appointments with a rheumy that were horrendous. She threatened methotrexate at all 3 visits, even though I had just been diagnosed and on pred for less than 2 months. She didn’t listen or look up details about my history. Her textbook taper I was instructed to follow (like yours) caused me to flare, and after bloodwork confirmed it, she put up my pred dose and then denied she did so. I could go on and on.
In the end she phoned and apologized but it was too little, too late. I never went back. Being overseen by her caused me so much stress and distress I informed my GP I could not be treated like that anymore, so he took over my care thus far.
You were smart enough to know that there was no “winning” with him, but it doesn’t stop you from refusing to see him again. Our medical professionals should collaborate with us, contributing their skills while listening to you recount your symptoms and how that makes you feel. Sounds like you’ve been on your own for some time managing your condition, and I can appreciate you wanting some guidance, direction, and support. But if seeing these folks makes thing worse, it’s time to look at other options. Wishing you all the best moving forward.
Oh I know that "give up and just nod" feeling. Though I my case it was the actual Consultant I was attending and paying dearly!! I hope you get sorted and feel ok.
Oh poor you Lesley. This condition is isolating enough as it is without having rheumies who don’t have a clue.
Unfortunately, it’s my experience too and seems to be common but I must say, haven’t heard one as bad as this for a while.
Hang on in there and as some have said, if you’ve got the energy, which of course is difficult when you’ve got PRM, do put in a complaint. But most of all, don’t lose heart, keep going and be kind to yourself.
On the only occasion I saw my GP to say the pain was getting me down I was given 10 mg amitriptyline. It was the most horrible drug I have ever taken. I took it in the evening and even at 3 pm next day I felt drugged and confused. I third it for three days and didn't dare drive. I could not even work from home I felt so sleepy. I can't remember if it help the pain I was so out of it. Doctors need to be very careful giving this drug out
Totally agree, as I said I had been given it before, but he clearly didn't know this and gave me no indication of any side effects. Really dangerous in my opinion!
Obviously with help of your Dr you will be ignoring that stupid taper? Cattle prod time. There should be a certain amount of anger you are allowed to show before they put something in your notes...usually about mental health, especially if you have a history. I think it's why I end up with no words. Choosing battles is a good strategy for staying sane.
Amitriptyline can help if you can tolerate it. It aids sleep as it relaxes the body, for me my back. I really miss it since a meds change but hopefully the new one which is in a similar class of drugs seems finally to be helping beyond neuropathy.
Oh, read that and really felt for you. It’s not good enough. Thank goodness for your GP as access to Pred is all important. Thank goodness for this Forum where you are listened to and where you get sensible advice. And thank goodness for your own strength of character so that you can make up your own mind about what to do for the best. We have a familynphrase ‘Heavens to Murgatroyd!’ Don’t ask! Definitely one of those moments x
Complaint time - this has got to be sorted out generally but the lord only knows how. I can't believe the number of appalling rheumies we meet - some of them shouldn't be in medicine at all, never mind rheumatology.
No pride in their professional approach equals arrogance, ignorance and NO people skills whatsoever. Do you think they go home and think they did a good job today or as heather says.."what have you done today to make you feel proud".
Are doctors out of reach to the ordinary people,so full of their own importance that we are so afraid of speaking up. They are paid by us to look after us and without us they would be unemployed
What a terrible experience. I had a similar one with the Spanish Consultant for internal medicine. Wanted me off prednisone immediately as he didn’t believe in it. Had me in tears. I now pay privately to see an excellent rheumatologist. To be treated like this when you are in severe pain is horrible.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Disappointed with Actemra
A little disappointed...
Disappointing letter from Rheumatology.
First Rheumy appointment (since PMR diagnosis by GP) totally disappointing! Sorry no question just bringing myself back to reality!
another disappointing rheumatologist visit 
