Briefly, I was diagnosed with GCA in November 2018 and prescribed.40 mgms of Prednisolone by my GP and referred to the Rheumatology dept . All went steadily and I reduced to 6 mgms when in October 2019 I developed pain in my hips, the GP diagnosed PMR so we increased the steroids to 30 mgms which did help the pain . For the last 2 to 3 weeks the pain inthe hips has been getting so much worse so I asked the Rheumatology helpline whether I should increase the steroids. They rang back on the Monday asking why I was on 15.0 mgms which I’d gradually been reducing to. Obviously communication between G P and the dept is not too good. They said I should go to the Rheumatology dept and I asked the registrar whether it’s could be OA of the hip and /or PMR. I had an X-ray
To get the results has been difficult to say the least so I rang the dept telling them of my increasingly severe pain an this afternoon they rang back . I was told to come off the steroids altogether! I said I thought that wasn’t a good idea and what about the GCA? They didn’t know about that! . The consultant obvioully talked to the nurse and said Prednisolone wasn’t good for the OA they’d seen on the Xray. I should reduce them by 2,5mgms every 2 to 4 weeks,
Too vague I thought. Tried to speak to a GP . Cannot get an appt for 3 weeks or even a phone consultation until March 6 th
I’d be so grateful for any advice on how to taper down safely. Thank you so much for all your support and being there
Written by
Jane-s
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WHICH department told you to come off pred altogether?
You should turn up at the GP surgery tomorrow morning and inform them you require an emergency appointment . They must then see you the same day.
Pred probably isn't good for OA - but neither is telling a patient to stop pred that fast after being on pred for 15 months a recommended approach! It would have helped if the GP hadn't told you to go up to 30mg for PMR - far too high a starting dose - and he had sent you for an x-ray then.
However - you are where you are and you are probably safe to reduce to 10mg really quickly since you were fine at 6mg before.. But then you will have to slow down because you have been back at higher dose long enough for your adrenal function to be impaired. Getting to 10mg will be uncomfortable though.
Thank you. I’m feeling quite insecure about the conflicting ( and dangerous) advice I’ve been given , mainly by the rheumatology dept who seem to have forgotten or disregarded the GCA
Yes, you have been treated poorly and when things are properly sorted out and you feel up to it you should probably put in a complaint .
In the meantime you need some direct and instant help as you are getting conflicting information and it appears that this is happening because Rheumatology have either made a mix up with your information or just not read through your previous notes properly.
You can't just take your current advice based on a potential mix up , especially not advice to just stop Steroids after so long as this can cause a potentially harmful Medical condition in itself if not managed correctly.
You could phone Rheumatology Secretary , and tell them you are unhappy with the advice you have received so far because it doesn't seem to be taking into account that you were already being treated for GCA before getting an increase of Steroids in October for suspected PMR .
It isn't taking into account that your Steroids are being used to actively manage GCA and the advice to just stop Steroids goes against Medical Information and advice about coming off Steroids on the NHS website after being on them long term.
Tell them you are inconfident with making any changes in your treatment until you have received an urgent appointment to discuss this with a Senior Consultant , after they have properly examined your notes and recent Medical History and got all your more current information from the GP.
Tell them that you would be willing to have a phone appointment to discuss this as soon as possible with a Senior Rheumatologist although would still need a face to face in the future , or you will want to request a second opinion on all of your diagnosis so far and may feel it necessary to take steps to complain.
If you don't get some positive answers and arrangements made then you will need to complain.
You can also call the GP in the meantime and explain what you are choosing to do and tell them you wish to continue your current treatment at the present doses until you have received better information from Rheumatology , and ask them to send through any information on your PMR , GCA and any test results to Rheumatology to help clear up the problem.
It's hard , so if you aren't up to all the calls find a calm , polite family member or friend to advocate on your behalf , or at least sit with you to help your nerves while you talk to people. Write down all the questions you have on GCA, PMR and OA so that you don't forget anything you want to ask about then tick them off and write down some notes to look back on later.
Try and keep as calm as you can and don't feel worried about ringing back or having another appointment if you still have questions , it's their mistakes that have caused this issue , it's up to them to make the extra effort to sort it out.
Thank you so much for the very helpful message, I’ve talked to my extremely supportive children who will help me write an email to the consultant rheumatologist tomorrow. Meanwhile try to get phone consultation tomorrow with the GP . I think I should reduce Pred to 12.5 mgms tomorrow
Jane, I'm no expert and can only relate to my own experiences. Firstly, there is no way you should abruptly stop taking steroids. You don't state the area you live in but feel expertise does vary accordingly.
Whilst PMR is fairly well known amongst GP's, GCA isn't. I found out by researching PMR online, the site showed associated illnesses and realised I might have GCA. Despite my natural reluctance to pester my GP again I booked an emergency appointment only to be dismayed to see the locum google it. I requested an appointment with both Rheumatology and Eye Clinic> I rang the surgery the next day to check she'd arranged these appointments for me only to find she hadn't bothered.
My daughter raced me to the surgery insisting I see a GP immediately and it was only on watching him fax directly to the departments as I was talking that I knew there was indeed something wrong. The next morning the Rheumatologist rang me and said I must get to the hospital the following morning. She put me on 60mg pred a day and arranged for a biopsy which confirmed what I'd feared.
I cannot praise Southend hospital enough for the prompt attention and treatment I received. The symptoms disappeared almost overnight, it was miraculous - and the energy ha ha. I would clean the house 2 floors in a day.
It is possible your pains could come from drug withdrawal so might be an avenue to pursue.
Of course there's a downside to these powerful drugs. I put on 3 stone in a matter of months, hamster face, my stomach looked like I was pregnant. And my god the ravenous hunger, I couldn't stop eating. My daughter was brilliant and took me round charity shops buying maternity type dresses. I'd always been roughly size 10 so that was a bit of a shock but figured it was worth it to save my eyesight.
That was in 2014, spent 2 years reducing and finally free of it for a year, then the pains came back. After much discussion Rheumatologist put me on Leflunomide, I still have steroid injections 6 weekly but we're aiming for completely coming off the steroids within the next year. Have to be honest and say I was wary of trying the new drug because of side effects but the consultant made it quite clear I didn't have a choice.
It's worked well for me, but we're all different, what works for one might not work for another so I'd be loathe to make any recommendations. Typing this now quite shocked how long it's been.
Good luck with your Rheumatologist and insist on a second opinion if you're not happy.
Thank you so much, Patchwork, yes.,I’m very aware we mustn’t come off Steroids abruptly and wonder if another person might have said “Oh wonderful, no more Steroids!” A sobering thought.
My GP rang today after I’d told the receptionist I absolutely
had to speak to a doctor. I was lucky . She listened and my GP who was actually on holiday rang and told me to taper down over the next 3 months, also told me the result of my xray which is OA of the spine and hips. So I don’t really know if I have or had PMR or not.
So grateful for the forum without which I can feel a bit abandoned!
Sorry to hear you have had conflicting advice from your medics.
Has anyone take ESR and CRP blood tests before any drastic steroid reduction?
For my suspected PMR my GP put me on a starting does of 30mgs as my blood results suggested a likelyhood of me developing GCA as well. I had stiff hips and felt slow, but no typical pain in joints which other folk have mentioned. After a few days I felt like Supergran!
Then I reduced gradually until I was down to 1mg for quite a long time.
While I was on the Preds I was told not to reduce too fast or the condition would return and I would have to go back to the previous dosage until it settled. I have been off them since last August and a recent blood test was an acceptable level. Can you get a second opinion?
Can only tell you what has happened to me not advice. I have had PMR for 18 mths now. Started on low dose of Prednisolone but was increased to 40mg quite rapidly. I have been on Methotrexate injections also to help get off the steroid. I am down to 5mg reducing by 1/2 mg every 2 weeks. I then have to taper the Methotrexate so a reasonably long journey. Others have a more difficult time. Side effects of both are not pleasent at all either but better than the untreated PMR. Good luck with your travels through the treatment. Blomps
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Update on 'where do I go next'
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