Well, I went for my long awaited 6 month review with the rheumatologist last week - but might just as well have saved on the petrol and the parking fees for all the help it gave me!!
I took the advice from this forum to record the appointment on my iPhone - I don't have anybody to come with me and sometimes find it difficult to remember all the consultant says - but the only benefit I gained from doing that was that it showed that the length of time I was actually with her was 7 minutes 41 seconds so there definitely wasn't much for me to remember! I had written a list of my side effects/symptoms but she just wasn't interested. However, I made very sure that she listened to my biggest problem, which as I said in. Y previous post are the problems with my head. The only investigation she did was to ask me to follow her finger without moving my head then promptly sat down again. Every time I asked her directly what it could be, she very cleverly managed not answer me. How do they do that so well?😡😡. I even asked her if it could possib,y be vertigo but she said the symptoms didn't indicate that but neither did she say what it could be. I ended up by actually apologising for worrying about this - how sad is that! I was so cross with myself for not being more assertive but I just didn't know what to say next. All the rheumatologist was interested in was getting me off "these terrible steroids" and kept telling me that all my inflammation markers had been well within normal limits ever since my Pred was increased to 40mg and that it definitely wasn't GCA. I'm now on 19mg and she wants me to continue reducing by 1mg per week until I get to 10mg and then by 1mg per month. I'm due to see her again in 6 months.
I've tried to think what else could be causing the problem but I just don't know what else to do. BTW, she actually suggested that taking paracetamol would help - I think not!
I'm sorry this has been such a long- winded post but the members here are my only hope of getting any answers.
Jan
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Janann25
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I don`t know where you live, but everything you have said in your post mimics exactly almost to the conversation what happened to me last summer, but my rheumy was male.....like me you actually leave the appointment feeling worse...and what a waste of time it was, and what the hell do I do next!........I saw a registrar instead of him this last time just before Christmas, with a totally different attitude, obviously not trained at the same medical school!...came to an arrangement about lowering, because I said that`s the only way I can do it without being in a great deal of pain, to which she replied, you have a life to live....do it your way.....well I felt so much more relaxed after that.....
Can you not ask to see someone else, or discuss further with a "good" GP, all I can say is lower slowly at a rate which suits you not her, I am sure others with more knowledge than me will give you some advice...Good Luck....
Time to get a second opinion I think. If only to find a doctor with manners. And I would go to PALS and file a complaint. I do expect my symptoms/problems to be taken more seriously than that.
Where are you?
Of course your markers are normal, you are taking enough pred. Reducing by 1mg a week is asking for trouble - 1mg per 2 weeks MIGHT be OK to start with but you still need to be careful.
Yes, you have just confirmed what I've been thinking - I need a second opinion. I live in North Wiltshire - not sure how I go about seeing a different consultant - but I presume I need to be referred somehow. I'm prepared to travel if it means I can see someone who actually listens to me. I'll phone my local surgery tomorrow and find out the correct procedure. Thank you for your advice,
Thank you for the link to Dr Hughes. Unfortunately I had decided to change my internet provider - part of my "watching my budget" tasks!! - and it actually took place today so I've not been able to start the job of getting referred to him. But it's number one on my "to do" list for tomorrow!! BTW, the previous link which you sent me - about the right to chose - doesn't seen to exist any more. It's not a problem because I'll just Google it but thought you would need to know in case you tried to use it yourself in future. I'll keep you up to date with my investigations tomorrow.........
Quick update on my referral process. I understand from my local doctor that it's possible for me to have an NHS referral to another hospital but not to a specific consultant. So, I've arranged with the doctor to do a private referral and I'm now waiting to hear from Dr Hughes' secretary. Just a thought, maybe a phone call to Dr Hughes' secretary to say that a referral is on it's way would be a good idea?
I believe you CAN specify a specific team - just you may end up seeing anyone in that team. I'd call or email - nothing lost.
How frustrating for you!!! I get so angry hearing about doctors, especially "specialist" doctors (like Rheumatologists) who are too either too busy, driven by ego, or (excuse me) "up their own arse" to be interested, honest and straightforward with their patients. Indeed 7 minutes and 41 seconds!!!! I agree with PMRpro, time to a second opinion and file a complaint! I don't pussy foot around anymore... if you are my doctor and don't at least try to meet me half way, or you treat me like second-class citizen; we're going to have a problem and I am going to confront you. After all, it's my body, my life and my health!
I know that's how I should react but, when I actually get to do it, I just chicken out. Anyway, I'll try to get to see someone else and hope that he/she is more helpful.
No, please don't think like that... we all react the way we react! We're all intimidated when we go to the doctors. We're sick, we're vulnerable, we want to believe they have some magic power or secret knowledge thats going to save us!!! what we forget is that they are just people... just human's just like us. Yes, please try to get to see someone else....
PS I'm American, its in my nature to be pushy and assertive! : )
The rheumy I went to first was about 15mins and apart from a locum at my surgery who examined my neck some months before was the only Dr to examine me physically. That is touch and get me to do mechanical movemts etc etc as part of dx process.
No one touches these days. I recd a letter saying I should get my feet checked (pulse) and when I asked Dr she said oh I don't do that. Get a nurse. Tried to get in for appt but couldn't. Strangely the "head dr" who has been there years did check them when I needed abx for chest.
I supposed the point is it seems such a struggle to get a dr to listen or examine you in any detail. The registrar I saw at rheumy regime was great. It will be stressing you out properly no doubt.
If you can bear to get a second opinion please try or at least another gp at the surgery who might be more open. Book double appt if you can and explain dropping 1mg every week is impossible for you. Perhaps Do it twice first and make a diary of all the issues it raises and let them read it or read it out. I am sure the drs surgery has people who will go with you as you might need an advocate.
Sorry for wittering (sleeping pill kicking in 💤💤) but you need to feel they are doing right by you.
Please, please don't apologise for "wittering" - without the concern and advice of the people here, I really would start "to lose the will to live" !!!
I've noticed that, too. Are the younger generations of doctors now taught not to touch their patients for fear of some sort of repercussions? For example, when I complained to my doctor last year that my shoulder really hurt she just suggested I take ibuprofen. She did not examine me, nor ask me to move the afflicted limb. Nothing. My physiotherapist checked and I had an injured rotator cuff, for which she gave me the appropriate exercises. Sigh.
I am not going to bother , my gp pushes his seat away from the computer looks at me and I feel he listens for my ten minutes. Then I go away and try very hard to reduce, stopping at the moment as arms are not to good .Learnt so much from here . I think we hope for a bit more from specialists . Carol
Unfortunately, the GPs at my local practice seem to know nothing about PMR or GCA, which was the reason they sent me to a rheumatologist - each doctor I've seen there has to Google the illness! Not exactly reassuring .........
OTOH - at least they were willing to use google to fill in the blanks! The numpty who didn't diagnose me was very proud about the fact that the doctor who did know about PMR had taught him to use google!!!!!
There is FAR too much inappropriate, inadequate and/or downright incorrect and BAD treatment (or lack of it at all) discussed on this and the patient forum. 'Specialists' are meant to be EXACTLY that - extremely well-informed in their areas - isn't that why GPs refer to them (in theory anyway) in the first place ? The fact is however if what is expressed here is true - and I most certainly believe you all - that it often seems to be the GPs who seem more reasonable or at least prepared to become more informed and therefore ultimately respond in better if not necessarily always 'perfect' ways.
Pmrpro put it well somewhere on another post - because PMR/GCA inordinately affects women of a 'certain age' (more than men) - they/it is not a well-researched and understood disease(s) and not likely for this reason to attract a lot of funding in the near future at least - who STILL thinks biological sex/age are not compounding variables for discrimination ? So in the meantime we must be strong and ourselves well-informed advocates for our own health and 'evangelise' where we can to INFORM as many people as possible - especially where the info is sadly lacking. We just can't afford to be shrinking violets - it is also important to pass papers/research and references to those who are meant to be treating us and at the very least ask for their comments only if to ensure they actually READ them !
The other thing that irritates me is that specialists generally charge or are paid a LOT for their services and we should therefore EXPECT 'quality' - the same way we would expect that from any other professional - shouldn't we !!??
No apologies for this little rant - just NOT good enough !!!
Oh dear Janann you need to find a doctor who is interested in you and your condition - 7 minutes 41 seconds! She nearly registered that you were there let alone clearly suffering symptoms. Have you told us where you are before?
I live in North Wiltshire, almost into Gloucestershire. I'm hoping that someone will know of a rheumatologist not too far away - but I'm prepared to travel if necessary. I just want to know whether the problems with my head are actually due to this illness or whether there's something else wrong.
I am so far down the path to recovery (GCA) - after a year, it's just a matter of coming off steroids left, visits to the clinic to see the Rheumatologist are months apart. Blood tests and visits are carried out as per schedule so GP and Rheumatologist are kept up-to-date. Visits are mainly physical tests, blood pressure, discussion. Both clearly told me to get in touch immediately if there are any changes. So far so good. It's nice to have confidence in those who are there to look after you. Wish the same for you.
Your post describes my trip to the rheumatologist 2 weeks ago exactly. I’ve been pushed down to 2 mg Prednisone in 10 months total since I began treatment. I have most of my hip and shoulder pain back and I’ve had a headache for a month straight.
Get off the Prednisone and take Paracetamol, really I just had to laugh when she told me that.
Ha ha ha !!!!! - what else can you do THAN laugh sometimes !? - but TRULY !!
Have you see that programme on channel 5 around 1130am mon/Fri called gps:behind closed doors. One day i was flicking through and watch sbout 10mins. They showed drs talking to and examining patients!! I was watching open mouthed and thought it must be a drama/doc but no straightforward documentary. Couldn't believe it.
I met someone in outpatients who had been on one of the programmes. It turned out he was not actually a patient at that surgery but his wife was, but he was a good talker so they asked him to be on. I think some of it needs to be taken with a pinch of salt as they had to choose people who wanted to be on television and then they had to make it interesting.
I would certainly look for another Consultant Rheumy. One she didn't really listen, two she didn't answer your questions, three she hardly gave you any specialist time. Four, she had her own agenda re tapering regardless of how you felt and lastly she didn't want to see you again until 6 months time ( a lot can happen in 6 months! ) Says it all really. You are not being a nuisance, over sensitive, or trying to make a mountain out of a molehill- you just want to be listened to!! Best wishes searching for someone else. I would use recommendations from this site. Consultants seem to vary considerably with their interest and expertise.
You are right on every count! I’ve now been given advice on here re a consultant and will start the process to see him later today. As they say, watch this space!!
I agree w/ these guys 2nd opinion a must. The only thing about cutting back your way instead of her way, not sure how you get your prednisone, I live in the US & I’m not sure how your rheumatologist prescribed your preds. But my Rheumy only prescribes me enough to last until my next visit w/ of course no refills, so if you have no refills or only have so many refills set up for just 6 months be careful cutting back less cause you will run out b4 your next visit & if that happens you will have to go without until then. So in the event you are in the same situation do the math to see how long they will last, cutting bk. less than ordered. If I should do that & I ran out b4 my next visit there’s no way I could get more, even if he wrote me another script the pharmacy won’t refill until the time the other prescription was supposed to last is up.
I actually get my prescription renewed by my local doctor's surgery and they are happy to renew this monthly. I have a repeat prescription each month for both 5mg and 1 mg tablets so I can choose how I reduce. My only problem will be when I need half mg doses because my tablets are enteric coated and they can't be cut in half. But I'll deal with that when I need to!!
Thank you - I didn't know that. I'll have a word with my local doctor.
What a nightmare for you. Are you in the uk? NHS? Think you deserve to be heard properly, I would investigate other rheumatologists and find one who has more experience of both PMR and GCA, hope you find someone useful.
I just received copy of letter that the private Rheumy I paid for sent to my GP. He' basically detailed all of the medical documentation I gave him on the day, to help! I had shown him a lump on my top joint of middle finger and have others developing on others and he has diagnosed osteoarthritis of the hands! Agrees my neck tight and restricted, but blames arthritis and whiplash in 2000. Says some features in history are consistent with PMR, others aren't, my hips are ok, I have normal ESR and CRP. I told him it was my pelvic girdle that hurt, and lower spine. I don't have arthritis in hips, just neck and spine and stenosis. He says he thinks I may benefit from one week of steroids, just to see what happens, and he would only diagnose PMR if there was a dramatic difference with the steroids.
Has given me letter so I can take it to local Consultant if I want to, which I will.
Well, the 15 mg Prednisolone has given me dramatic results, I have made a point of noting everything from day one, when I had bad pain in my lower back, from day 3 to day 6, now, I have no pain in back or pelvis, less stiff in morning and when I have been sitting for a while. Just hope the Rheumy NHS, I am seeing on Wednesday will make the diagnosis and keep me on meds. I have been feeling quite manic, but it has been great not to feel fatigue all the time. Just hope he believes me.
What I don't understand, is when I have no inflammatory signs in blood tests, why does GP prescribe Naproxen as anti inflammatory for arthritis pain!
I do have osteoarthritis in places, but feel the stiffness and pain in pelvis and fatigue is due to PMR, you can have both, and yes the steroids do probably help with the pain, but I am grateful, after two and a half years of pain, I am enjoying the lack of it and am hopeful I will be able to go back to swimming, see if I can get a decent NHS physio for tight muscles and read about the Bowen Therapy, to sort out my pulled muscles in my side, only available private I believe. I will let you know what happens after Wed. Hope I get a better deal than you did. So annoying for you and worrying. Hope you find an empathetic person, who knows there stuff. look after yourself. D
Well, you're certainly having more than your share of problems but it looks as if your private consultant is covering all options. I really hope things continue to improve for you - and that I can get more support soon for myself!!
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In the words of the legendary Evita, so where do we go from here?
Rheumy telephone call appointment
Confused carer!
Worried about a hastened taper ...
Slop tapering - doing it my way
