Perplexing rheumie appointment!
Posted , 10 users are following.
Went to see rheumie yesterday after he gave me three months of starting at the beginning again to see how I respond..he put me back to 15 mg, which I started at nearly 6 years ago....he is my second opinion, and has said the two times I have seen him, this is not PMR, which he said again yesterday ("or you would have responded to the 15mg"
he asked how I was.....pain/stiffness/blurred vision/fatigue.....I could go on. This he said is mostly due to the Pred!....so naturally I said so what do I have then? well, we`ll see when you are much lower.....he advocates 1mg drop per month, to which I refused to do, feeling so ill already.....and know what pain I will be in....(dropped drastically for him before and could n`t move!) he said take 8 parecetamol a day for the pain.....I said I will be doing the very slow drop of the pred, to which he had no choice but to agree.....
?He said 50% of people are misdiagnosed with PMR at the beginning...and flares are not flares but natural pain!
He said my body had got too used to the pred, like he is with coffee!.....
?I am to see him in three months, but can ring his secretary if I`m struggling!
?I don`t think I have much of a choice, but will only take as many paracetamol as I need and not the 8 he said a day.....
?Well, I would love your thoughts on this, thank you.....especially Eileen...
0 likes, 28 replies
freda07782 linda17563
Posted
Hello lInda, I think it's time you had a second opinion. What 8 Paracetamol a day may do to another part of your body goodness knows! Check out what Paracetamol does to your liver and then you could have ammunition when you see the second opinion person. I feel for you. Good luck!
daniel08939 linda17563
Posted
and once again they are scratching their heads and saying they are not sure what I have. My experience is if you have pmr and the prednisone removes all or most of the pain it is a good dose. If it does not remove the pain you need a higher dose.
I believe that although prednisone can have some bad side effects, many people take it with little side affects. I have taken prednisone for four years and I do not seem to have problems with it.
linda17563 daniel08939
Posted
.I envy those that can takes meds to solve their problems......Thanks for your reply....I wish you well...
EileenH linda17563
Posted
I think he is in cloud cuckoo land - and I'm afraid I do NOT agree with his recommendation to take the maximum dose of paracetamol on a longer term basis. A lady on the forums was told to do that because her GP said her pain was OA not PMR and pred didn't work for PMR. Within 2 months her regular blood tests showed elevated liver function tests - high enough for him to panic and send her for an emergency ultrasound. Liver was fine - it was the paracetamol. There is a very fine line between the maximum dose and overdose - especially if you are on any other medications that the liver processes.
I've yet to find paracetamol of the slightest use! And there is increasing evidence it isn't much use in many things according to Australian researchers!
He is wrong - some people need more than 15mg to get a good result in PMR - and HE is the person who has been messing you about yoyoing the dose which is a common cause of these sort of problems.
I honestly don't know what to suggest Linda - I know what I would do in your situation but it probably isn't an option for you. I would see Rod Hughes at Chertsey, privately if I had to. You may NOT have PMR - but this guy is fixated on the fact you don't and won't agree you do whatever happens.
As for "flares are not flares but natural pain" - he'd b£**&^ soon find out from me what natural pain was! He is blatantly obviously one of the people who doesn't believe in PMR as a real illness. Hope he gets it one day.
Whatever - you need to get your GP on side to monitor your liver function monthly if you are going to use a lot of paracetamol, And do try to discuss this with someone in your practice - as you aren't going to get anywhere with this guy - you have reduced once and he's seen what state you are in.
linda17563 EileenH
Posted
He had the cheek to say to me....coming off pred is like me cutting down on all the coffee I drink, I don`t function so well........ to which I replied, but you aren`t in pain when reducing are you? ...no reply...
I will ponder over going to Chertsey, I am in Norfolk.......but will get my nice doctor on side, and do my own thing..and get regular liver checks.
I wouldn`t have minded if he had come up with what is wrong with me, but nothing, he said, if you were my mother, this is how I would treat her.....can`t print what I was thinking.....if I was your mother..........
......I never for one moment 5 years ago, thought I would have this battle on my hands....my husband is so naive he thinks the rheumie must know what he`s talking about, my friends are disgusted and frustrated for me....
Thank you Eileen for your advice......the sun is shining today so don`t feel so low, hope it is for you also!
constance.de linda17563
Posted
constance.de
Posted
Sorry! Meant to add - I have had PMR for 5 years and am down from 30mg to 4mg (had a hard time - never completely pain free, even on the high dose)! I take Cocodamol three times a day - one tablet. They have always helped, so I suppose there has always been something else running along beside the PMR.
Good luck, and let us know how you get on. Start saving for a trip to Chertsey!😏 💐🌹
linda17563 constance.de
Posted
EileenH linda17563
Posted
I probably WOULD have told him I was eternally grateful I WASN'T his mother... Cheeky little s........
freda07782 EileenH
Posted
Just wanted to say reading all the messages in this Forum makes me realise I shouldn't be in such a hurry to taper off my Pred. I'm new to PMR and at first my only goal was to taper down from Pred. However, after having a flare up around 7 mg now have come to the conclusion my Rheumy was probably correct in telling me I'll probably be on Pred for the rest of my life! I don't want to live with the pain but do want to keep active so thanks for making me realise it's not how little Pred I take but the quality of life with the correct number I need!!! I got a chuckle when I read on one of my dr. Reports that I have an atrophied thyroid, so maybe my adrenaline glands are going the same way! I'm in the U.K. now and have an appointment with my family doctor at the end of this month. I hope I don't get the run around that I read about in this forum. I've come back from the US armed with all my reports. I'm not sure if my doc is a male or female but hope it is a female as I prefer them. I've always requested a female as I believe they are more sympathetic to a females' needs! Sorry to the men reading this! No offense but I have found in my case this is true. Funny thing is the doctor I visited was one of four lady doctors in the Arthuritus Centre in the USA. How lucky I was to start with this over there!
EileenH freda07782
Posted
You've obviously never had a femal gynae! They can be utterly horrendous!!!!! The female rheumy I met in the UK wasn't much better!
I think you have come to the most important realisation there is in PMR: pred is your friend, not an enemy!
Michdonn linda17563
Posted
linda17563, up & down with pheds, but I am afraid that just normal. The rheumy don't have all the answers. Mine sent me for x-ray the last time, x-rays check out fine, told her the problem was in my muscles. See her Friday for next round. Hang in there!
ptolemy Michdonn
Posted
linda17563 Michdonn
Posted
Have had MRI on hips pelvis lower back, all "normal" for my age (65)....I will have to hang in there, pity rheumie dosn`t think there are ups and downs with pred......Thank you
erika59785 linda17563
Posted
My rheumie expects me to taper to below 5 mg which I have not been able to do. I am still on 6 1/2, and even considering going up to 7 because of recent stress in my life.
You are right.....they don't think there are ups and downs with PMR. We are the ones who feel the pain.....they like to give orders and lack empathy and understanding about the illness.