Hi I am new to posting here but I have been on here reading posts for several months and thank goodness for the site very informative and empowering.
I was diagnosed with GCA in May2021 (never heard of it before) after a month of headaches and trying to get some medical person interested. Put on 40 mg Pred immediately and as a result the subsequent ultrasound and biopsy were inconclusive due to Pred masking the results?
I have since had a mixed relationship with the rheumatologist who appears a bit dismissive and reluctant to take much responsiblity. She however insisted that I took Alendronic acid immediately as a prophylatic measure. Refused a Dexa scan for the same reason. Like a lamb I did as I was told inspite of my dentist going wild later saying this was professional misconduct without first having a dental assessment? I have no real relationship with the GP practice who are impossible to contact.
I have had cataracts for some years and had one operated on nearly two years ago. The other one needs to be sorted out now but the rheumy says that no surgeon will operate on me while I am on Pred and in any event the operation would not likely be successful, something to do with pressure in the eye or lens?
I am now on 10 mg of Pred and supposed to be tapering as per the guidelines but having read about it all here am taking my time now. I wondered if anyone has had a cataract op while in a similar situation? Is it entirely out of the question? I think I read that someone on here was due to have one soon.
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Noraflorence
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Rheumy talking rubbish - it’s the surgeon who makes the decision. If not already, you need to be referred to ophthalmology initially for them to assess. I had mine replaced when I was on 8 or 9mg - can’t remember exactly. Also had GCA.,
Where to start?There is information in the Related Posts where you will find that cataract operations are performed successfully for people on Prednisolone. You do need to make the operating team aware of the fact that you are taking this and it should be recorded in your notes before the op'. X no.1 for rheumy.
You are within your rights to refuse any medication your doctor/rheumy. X no.2
Your rheumy should not prescribe medication on a 'just in case' premise. X no.3
You should have had a dexa scan before being prescribed alendronic acid in order to assess your bone health. X no.4
Your dentist was absolutely correct in saying that you should have had a dental examination before starting on alendronic acid. X no. 5 for rheumy.
Is there any chance of you seeing another rheumatologist? I would advise you put it at the top of your 'to do' list as this current one clearly appears to have scant knowledge of your condition and, in my opinion, is giving you the wrong advice on a number of issues.
It's so easy to believe that the doctor knows best: I'm sure we've all been in that position at some time, but fortunately you have those gut instincts that something isn't right and you're doing something about it by asking these questions.
Thank you. I do feel a bit feeble and the 'doctor knows best' stuff is hard to move away from.
Not sure how easy it would be to move consultants or even how to do this given the lack of input from the GP. From myrecent experience the doctors all stick together and deflect implied criticism!!
Having now been on AA for five months not sure if I can just stop. I have had dexa scans years ago which suggested that I was borderline but that did not come into the current thinking.
It's natural to be somewhat intimidated by professionals but you don't have to be, especially when you don't agree with them. The truth is that you can better serve yourself if you stand by your guns and put your case forward. You can do this by informing yourself and arming yourself with facts that you have researched -on here and internet sites- and writing down what you want to say and ask.Perhaps you could approach your GP first and say that you feel that the rheumatologist is misinforming you (state what he has told you) and also what your dentist said about professional misconduct; this may make the GP's ears prick up! Stand your ground and say that you are doing your best to manage your condition during these trying times and would appreciate her assistance in referring you to a rheumatologist in whom you will have more confidence. As I've often said, as long as your tone is measured and respectful (even though you may be seething inside) you should receive the same treatment in return...🤞🏼
Always remember that it's your body and your health. Gird up your loins 😏 and don't be fobbed off.
Take some time to think things over and keep in mind that what is suggested here doesn't replace professional opinion - they are just suggestions but put forward by experienced and knowledgeable contributors (I don't include myself in the high echelons). Nobody will force you into anything or any action and you won't be judged over whatever you decide.
I know exactly how you feel. I feel the doctor is the professional and should know what they are talking about. Having said that I have got through four rheumatologists, one was excellent the rest were rubbish and two of those were private. It is difficult to argue with them but over time I have got better!
If I were you I would be seeking a new rheumy!! She is talking utter rubbish after really not going about sticking you on AA the right way without the advisable dental assessment - and I would refuse to take AA without a dexascan being done. I didn't need AA according to the dexascan I had within 3 months of starting pred (after 5 years of unmanaged PMR) and 12 years later I STILL don't need it. It was handed out automatically to me too.
You are entitled to a second opinion and if you know a name of another consultant, your GP can't refuse that. I don't know where you live in the UK, but others may have suggestions of ones they respect that you could ask for.Your current one is extremely concerning in my book.
If you feel the GP overpowers you, can you get someone to talk on your behalf, or in the rare case of a face to face appt, go with you to step in?
Rheumy obviously knows little of PMRGCA. My understanding is that if having an op or intrusive treatment you may need to up your Steroid dose temporarily to enable your body to cope. I was told this by an Endocrinologist when having a synacthen test and given a Steroid Card to carry indicating I am on Steroids and what dose by Leeds Teaching Hospitals Endocrinology dept. And by PMRGCAuk, Helpline 0300 111 5090.Good Luck, Linnet Bird
I was prescribed AA on my first visit to Rheumy without Dexa scan either..within 24 hours I suffered indescribable pain and couldn’t move or sit for five hours.He changed me to another drug in the same family. Fortunately I was seeing a nutritionist who insisted I contact my GP surgery to book a scan..the results were good and showed that I didn’t need them at all.I took myself off them then told my GP.( it took a bit of courage)..Luckily she was very understanding.It’s a really concerning situation highlighting a cavalier attitude from some Rheumys.
I also have cataracts,but not quite bad enought( NHS) yet for surgery..
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