In Nov 2016 I was diagnosed with PMR with a CRP of 45 and prescribed 20mg Prednisolone reducing over a year and was discharged in Nov 2017. The symptoms returned after a few months and I started taking a low dose of Pred then just before last Christmas I went to see my GP with pain in both temples, a low fever, neck pain and the vision in my right eye was affected I was referred to eye casualty and I was put on 60 mg Pred with suspected GCA. My symptoms improved dramatically after a few days and an appointment was made for a biopsy on 27th Dec but the surgeon advised as I had been on 60mg for a month it would be unlikely to show anything so the biopsy was cancelled.
I was then referred to Rheumatology at my local hospital and after explaining my symptoms they said it was unlikely to be GCA as I had no raised inflammatory markers so I should reduce my Pred from 60mg to 30mg but 3 days later I was shaking and all my symptoms returned including both temples swollen and blurred vision in my right eye, as I couldn’t get an answer from Rheumatology I took 50mg Pred and went to eye casualty who confirmed no damage had been done to my eyes thank goodness. I went to see my GP who was most concerned with the events and rang Rheumatology they then said I should reduce my Pred by 10mg every 2 weeks incase it is GCA, all went well until I got down to 20mg I rang the Rheumatology emergency number but no one rang me back so on the third day I rang 111 and was told to take 60mg and go to eye casualty who now know me quite well, I have given blood samples each time but no signs of inflammation. I have managed over the last three weeks to lower my Pred to 35mg but my Rheumatologist says I should have reduced to 20mg I told him I was afraid of losing my sight but he said I have more chance of going blind because of the high dose of steroids.
The Rheumatologist says I should have raised inflammatory markers with GCA as I did when I had PMR even though I am on a high dose of Prednisolone, may I ask if this is correct please?
Any other advice would be most welcome.
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Cherubim
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How awful for you! I'm no expert with GCA but it sounds like you may be in the hands of an incompetent Rheumatologist which is so worrying in the case of the dangers of GCA.
By the way, how do steroids make you blind???? I know we may get cataracts or Glaucoma but I've never heard of them making you blind. He seems to be trying to scare you- nasty.
Hi cherubim, if I read your message correctly, the blood tests in reference to the period since GCA symptoms, you have only had blood tests since you have been on up to 60mg of pred? If that's the case I wouldn't expect to see raised markers. If the Rheumy' says it's not GCA has s/he suggested what else it may be and explained what the next step is in relation to investigating what may be wrong? I realise that 60mg doses of pred can help a numbers of other conditions, but you need to have a clear idea what the Rheumy' is thinking in order to get on board. No info equals no submission to me.
In any case as we always say symptoms trump blood test. You should discuss your concerns with your gp and ensure they give you enough pred for any potential flares just in case. Hang in there and perhaps ask for a second opinion.
Is it the Rheumy that dealt with PMR or was it your gp? I ask because 12months is a very short period on pred and too fast of a taper is the main indicator for relapse. If it is the same Rheumy I would definitely be asking for a second opinion!🌻
I dont have GCA but I do know that you are unlikely to have raised markers after being on such high doses of pred for so long. I am sure dorsetlady and pmrpro will be along in a bit to give you advice. YBB
Hello and welcome. This made for upsetting reading. In my humble opinion there is now more than enough evidence that you have something very like GCA that needs steroids; a trial by fire ironically risking your eyesight. Yo yoing is doing you no favours.
If you have enough Pred to cover the inflammation of course you won’t have raised markers, that’s basic stuff. They should be pleased 60mg is doing its job. It was probably a good call not bothering with the biopsy due to the length of time on high dose.
Have a read of these that show some recognised Pred guidelines (so open to changing if a patient needs to go slower)
Given the risks of GCA, if you need a high dose, you need it. To exaggerate the effect on eyes in order to scare you into reducing rapidly, again, a drug you must take is unprofessional. I think you need another Rheumy, one who is less cruel.
It is so comforting to read the replies above it brings tears to my eyes my husband and I have tried questioning him but we can’t get any where with him he has told me the steroids will make me have a stroke and my hip will drop out. I feel very demoralised when I come away. I have not experienced anything like this before.
Oh my goodness. What a total numpty he is. That's disgusting. I don't understand why he is doing this. You are doing nothing wrong at all and at the moment it's the immediate issues related to your symptoms that needs addressing. I hate it when they use scare tactics. Hold strong. Keeping my fingers crossed and sending positive thoughts. 🌻🌻🌻
The words.to describe the man are not for putting on this forum unfortunately. I would upset the more sensitive members. You need to get a new rheumy.xx
What a ##**% . Untreated GCA is high risk for a stroke and he should jolly well know that. Yes, Pred affects the bones but steps can be taken to minimise the problems as part of your routine management.
As others have said - what a nightmare for you. It sounds to me as if your Rheumy knows very little about GCA or how to treat it.
Good start at 60mg, and I can understand why biopsy was cancelled - a) very often if you have taken Pred for a few weeks it shows as negative, and b) for that reason the symptoms should be the overriding marker for the treatment given.
Many patients don’t have raised markers at all, but after you have been on 60mg then inflammation should be reduced to “normal” levels - that's what the Pred does. Any Rheumy should know that!
A drop from 60mg to 30mg is ridiculous - no wonder you felt so bad, good move to go back to 50mg.
Not good advice to reduce by 10mg every 2 weeks - 5mg every 4 weeks is better. If you use the former you are likely to go below the level you actually need - which is precisely what happened.
If your Rheumy thinks you should have raised markers whilst on Pred he obviously doesn’t understand how the Pred actually works - and if he thinks Pred will make you blind then sorry but he’s an absolute pillock!
Sounds like you’d be better off just letting your GP treat you.
Have a read through this, and please once you’ve got your head around it come back and ask anything.
Thank you for your help I will report all this to my GP tomorrow. I am cross with myself for not standing up against him. I really don’t know what his problem is.
This man is seeing suspected GCA patients at a large city hospital.
It sounds that I would have been better going to the Vets!
Vets basic training is longer, so you might be right. This guy needs reporting. Dont knock yourself up for not standing up to him, you will see lots of posts on the forum where a lot of us have done the same. Trouble is we are brought up to think doctors can do no wrong!!
Your Rheumatologist is an incompetent , unprofessional , ill informed moron!!!
A test case example of the worst type of Medical Profession.
The type of arrogant baffoon whom doesn't actually bother to read the facts over of a disease and then uses passively aggressive arrogant one liners and scare tactics to try and force you into taking their poor advice , which is usually all that their tiny minds can give.
Even your GP seems to acknowledge this, but, as is often the case , a combination of the system they work in , or misplaced " professional integrity " means they don't voice that they believe another Doctors position or opinion is wrong , but rather , tactfully try and skate around the damage in the hope things will be dealt with properly in time.
Unfortunately , the arrogant , puffed up versions of the sore bones profession often don't get the message and the poor patient , like you , ends up confused and zig zagging between one bad decision after another.
You could make an official complaint , and probably still should , but only after your immediate needs are sorted out , and that is getting to see a new Rheumatologist for a second opinion , preferably with a specialism in GCA/ PMR.
You have the right to request this via your GP or the Hospital Department , if they have no GCA specialist in their Rheumatology Unit you can request to see one at another hospital , based on the fact that you have concerns about the ongoing confusion in both your diagnosis and treatment so far.
If they try to persuade you otherwise you can inform them that it is your right to have this second opinion and you would prefer not to make an official complaint.
Try and keep as calm and positive as you can when dealing with this , or get someone close who has the skills not to get angry while dealing with problems to do it for you.
You can write down any questions or things you want to say , or ask , on a piece of paper to have by the phone then you can keep track of what you want during the conversation and don't get side tracked.
If you find it easier make any calls on speaker phone so you have a witness to your conversation and you can always take someone with you to all appointments.
If you do not get a response within a week to ten days and a new appointment within a month you have the right to kick up stink , they won't want that.
When you go to the appointment have written down your medical history , medicines , the symptoms you had before diagnosis , what has happened with your diagnosis and treatment so far , and what symptoms returned when you were tapered too quickly ( which you were) .
Also take notes on the advice and knowledge you have gained about GCA/ PMR so far from this forum and the charity , showing that inflammatory markers will be reduced because you are already on Pred , and that the taper was probably the cause of returned symptoms because it was too fast.
Go in determined to get results but also open and with a positive attitude to the new Rheumatologist as if they are not a fool like your current physician you will be working together for some time and want to start with a friendly partnership.
If they suggest it isn't GCA , or that it could be something else , find out what and what tests they will do to confirm this , then let us know .
If they have some suggestion as to why the other consultant thinks you will have side effects like blindness ,lunacy , or limbs dropping off , by following the same sort of steroid treatment as other GCA sufferers ask them to explain it.
( We might not know about other conditions that you are being treated for or in your past medical history that make a difference)
At the end of the Consultation , if you are happy , request that you are put on their books and you are not returned to the previous Rheumatologist for future treatment.
Base it on the diplomatic suggestion that you are comfortable with them and find it easier to understand them which will make your treatment less stressful.
You don't have to take their opinion as red either .
If they offer you a new treatment you are not sure of then you can always ask to go home to discuss it and contact their secretary the next day , then you can put up a post here and ask for more advice.
Hopefully , that second opinion will be enough.
But if you have difficulty getting it , or with the help you get afterwards , let us know , I will get my Mallet out!!!
In the meantime , before this appointment , also ask your GP that you return to a higher dose that you were comfortable with and did not suffer the return of symptoms with , and tell them you want to stick with that until you have had the second opinion.
So sorry you have suffered the worst of the worst .
Good luck with it , and give us ongoing posts so we can support you , good or bad , and give you more help along the way.
Your writing style is just sooo smooth and easy to read. It's really excellent. Glad to have you describe some of the weirdnesses of pmr/gca. I can actually visualise your thoughts. Keep tough...
Thank you for your great advice and some of your comments made me laugh which is something I don’t do very often these days. I will act on your advice and post how I get on. Thank goodness I found this site. X
We are pleased you found us as well. Laughing rather than crying is definitely to be recommended and judging by the amount of asterisks there are on some of these posts I can only imagine your rheumys burning ears.
Trying to find anything to raise a smile on your worst days with a chronic condition can be hard but it can be the best medicine you can get to get through it.
Glad I was able to help raise that smile for you today.
The only thing I would add to the brilliant course of action you have been given is that initially I would get your GP on side with your reasonable attitude, no blame game but that you need a change of rheumatologist and who would he advise? You don’t have to get into detail at this stage unless your GP pressures you, then you can explain your concerns. In the meantime you would like to maintain the high dose while locating the new rheumatologist, with the understanding that as and when symptoms subside you will look at a slow tapering timetable. It doesn’t mean that you will do this unless you want to but it will reassure your GP that you are in control and not over-reacting.
Ps I’d be tempted to send the list of side effects enclosed in Pred packs to your current rheumatologist and suggest he reads them - but perhaps not just yet 😀
Yes , that was my point with the sounding calm , reasonable and open , especially when requesting the referral through the GP. Always best if you can keep at least one medical professional working with you to address ongoing problems.
It is always to better to keep a step back from anger or the blame game while trying to address bad medical service to be able to make them more willing and swift to act .
If Doctors feel they can act on your behalf without getting into the middle of a complaint or forced to make comments on the " professional integrity " and diagnosis they are far more willing to act and not dismiss your concerns because they don't feel they are having to take sides.
Like Politicians , if forced to choose between the people or the party line , Doctors will always choose the party line because they know which side their bread is buttered on.
Bee stop encouraging violence with a mallet to poor misunderstood doctors!! Yours live in fear of you turning up with enough energy or even the ability to remain upright to seriously maim them!! Seriously though you can complain and I personally would but I am biased because of my profession. When you have your treatment sorted out, you can then think about how far you want to take this. Baby steps till you are happy with your treatment.x
I wish they did live in fear then perhaps I would have the energy to use my mallet by now , or at least stand up right without a boot that weighs as much as me !
Seriously , if I was on the moon it would stop me floating away .
Just think about the fun you can have when you are on the right meds. The doctors are.all going to be legging it out of the door.closely followed by you and your mallett!!
What! Dear God! Thank goodness you know what you are doing! That Rheumatologist sounds like an idiot. I have never heard of Prednisalone threatening your sight - of course your inflammation levels will be down on such a powerful anti- inflammatory drug. You need a better Rheumatologist and you need to carry on relying on your own sound, common sense. Please reduce really gradually when you feel well enough. Keep in touch.
Just to say I was diagnosed with GCA 3 years ago, went to A&E as GP seemed to have no idea what was wrong with me, bloods showed inflammatory markers sky high plus headaches etc, put on 60mg pred, kept in hospital for a week, did have a biopsy which was positive. When the steroids were reduced to 40mg two weeks later I felt so ill was readmitted to hospital - so your drop was massive I am not surprised it made you feel terrible,
I had my bloods taken again and already my inflammatory markers were nearly back to normal - and since then my Rheumi has always used my symptoms as to managing my tapering rather than bloods.
As for steroids damaging your sight (apart from possibly causing cataracts ) what a load of nonsense.
If I were you, I would ask your GP if he could refer you to another Rheumi because from all you have told us he sounds absolutely incompetent. Also Dorset Lady's advice is excellent as she has such experience and knowledge of GCA plus all the advice over steroid tapering plans.
Do hope you are able to get the help you obviously need.
I was in bed when you posted last night - and there is nothing left to say after this thread!!
Except to ask, where are you? Which hospital is this? I don't particularly want to know his name at present but it would be nice to know which Trust has such a prat on their staff.
I've heard some scare tactics over pred but these beat all. GCA without pred equals risk of irreversible loss of vision. GCA plus pred MIGHT lead to cataracts and loss of vision - but it is reversible with a commonly performed and very simple operation. No contest.
You've had lots of good advice and I would only add DO NOT take the Rheumatologist's advice already given. It is absolutely ludicrous and when you're well enough make a complaint.
Speak to your GP and ask for another referral for Rheumatology. In the meantime follow his or her advice regarding your reduction. Steroids are a dangerous drug if not managed properly as you've experienced when dropping too quickly. Take a steady taper and ask for further advice on here if you wish. Remember we give out our own experiences and what works for one doesn't necessarily work for another but they all have a common theme - no giant leaps when tapering down.
I cannot reduce as quickly as my Rheumie initially asked me to and we discuss it - I don't think I should make myself ill just because they are the doctor - doctors learn from us just as much as we learn from them.
Thanks for your advice and everyone who has been so supportive.
My GP rang today and he said he was concerned I had been on a high dose of steroids for too long and I explained I had followed the Rheumatologist advice who reduced my meds to quickly causing a flare up each time I told him I need to find another Rheumatologist and I will stay 35mg until I get further advice. If anyone can recommend someone in the East Midlands area that would be great.
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