Hi,
If someone with PMR can’t tolerate Prednisilone due to Diabetes, Ventricular Tachycardia and Depression, would it be reasonable to be prescribed a biologic instead? Thanks.
Prednisilone or Biologic : Hi, If someone with PMR... - PMRGCAuk
Prednisilone or Biologic
Written by
Bramble2000
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19 Replies
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DorsetLadyPMRGCAuk volunteer
Unlikely in UK, at the moment Actemra not licensed for PMR (only GCA)…plus you need a rheumatologist to request on your behalf.
I’m under a rheumatologist
I know you are -but if he’s the one that doesn’t think you have PMR he’s not going to suggest Actemra even if he could!
once the results of the pet scan are in, we’ll see…
As Dorset Lady says, think you would be unlikely to be prescribed a biologic in the UK for just PMR. However I thought I read you had AS as well? Though your rheumatologist was querying that also? I’m pretty sure biologics can be used in AS treatment? Worth pursuing that line?
I’m so sorry you are having such a dreadful time without proper support. Hoping things improve swiftly.
I do have proven AS and have had many biologics over the years. At the moment I’m not on any treatment for the AS as the AS is quiet.
" as the AS is quiet" - is it? It can cause the PMR-style symptomatic and responds to pred too then.
It strikes me your rheumatologist is clueless ...
But you won't get any biologic for PMR in the UK.
I have had 2 MRI’s that show no active inflammation in the SI joints. What I have now is very different to the AS.
Had you had polymyalgic symptoms with the AS? They don't show on scans.
I don't dispute you have PMR - you DO have a clueless rheumy though who hasn't actually obeyed the rule of "First, do no harm." He's had the PET-CT scan done, he knows that pred manages your symptoms so he should have reinstated the pred in the meantime, not just left you to be bedbound. Your GP could actually act in the short term - after a matter of week it is easy enough to stop pred again, it is after long term use it is a problem.
So I repeat, first call 999, or at least 111, tell them you are bed-bound, you have a disabled son and no heating. I'm not suggesting you will get a quick response - my paramedic daughter was caring for a neighbour with a dense haemorrhagic stroke last night while they waited over 5 hours for an ambo. Had it been an ischaemic stroke he'd have missed the therapeutic window by a mile, as it is it probably didn't make a difference.
both AS and PMR show up on scans. This definitely isn’tAS
The bony part of AS shows on scans - the muscular aspects don't.
AS has nothing to do with muscle. For treatment, active inflammation needs to be seen on MRI. What I have at the moment isn’tAS
There are several people who have been on the forums whose initial dx was PMR. One had a dx of PMR and GCA from the UK GCA guru, Prof Dasgupta, but since neither her own rheumy nor Prof D would allow enough pred to manage the symptoms, claiming the GCA was burned out, she went to Prof Mackie in Leeds as a PMR expert. She also though PMR was likely - until the patient mentioned nocturnal back pain that was too early in the night to be typical of PMR. An MRI found AS and anti-TNFs did the rest.
PMR isn't the disease - it is the name for a set of symptoms with a wide range of underlying causes. And except for PET-CT PMR rarely shows up on scans - and once the patient is on pred, even PET-CT may miss it. Bur it is known that AS can present with polymyalgic symptoms alone.
After reading this post and your previous post I would say you need to put in a complaint to the Chief Executives Office about the care you have received explaining the query of PMR and your response to Pred but then you were taken off it , and explaining that you are now bedbound with the pain and have been housebound for 7 months but you case has not been treated with the urgency or diligence it requires.I would ask for an immediate second opinion and more thorough checks again for both reoccurrence of AS or PMR in a patient whom has AS.
If you are allowed Pred you should request that you can continue the trial of this treatment or be returned onto biologic Therapy if you are suffering such debilitating symptoms from the possible complications of recurring AS.
If you haven't been offered any form of home assistance or evaluation , physical therapy, or occupational assistance you should also complain that your Consultant has made no effort to refer you for the assistance you require to prevent the muscle deterioration that has been occurring during your lack of treatment.
As , even if AS inflammation is in remission, health providers are meant to give you ongoing physical therapy , support and medication to prevent flares from happening and further fusion beyond the SI joint and lower spine.
AS is complicated. I have been researching it recently as a friend whom was originally treated for PMR was finally diagnosed with it . They had , had both upper and lower body symptoms of it , and injuries in those areas over decades well before it properly showed up on any scan or x-ray but the previous issues could all have been due to the effect of AS before it showed up in those tests.
New deterioration of the spine , ribs, neck , hips and shoulders in AS does not always show up on scans , in fact the fusion , or notable inflammation , classic to AS progression can take months or years to present as the AS progresses to new areas , even though it is active, evident in your inflammatory markers , and severe pain and other symptoms. It is often mistaken for PMR if the inflammation is active in the shoulders and hips more than in the spine at the time of testing. I'm not saying you don't have PMR by this , it is possible to have both , but it is rare , and the only recorded cases I have come across is in Men.
However , if you are suffering from PMR the added physical stress is more likely to trigger AS activity at the same time as well , so the option of a biologic therapy could be considered for you in way that it would not be considered for someone suffering with PMR alone.
AS is often mistaken for Fibromyalgia as well .
Your Pred treatment may also mean that scans could be inconclusive for either AS or PMR , but the severity of your symptoms alone should be getting you immediate treatment. Have they done other tests as well to check your bone density and calcium levels ?
AS and OA can present together too , each making the symptoms of the other worse in a horrid vicious circle .
AS can be active without conclusive evidence of change on scans , in the spine , but also in the ligaments and tendons of the joints and the cartilage, notably in the ribcage and heels , but cartilage in any area . It can also trigger acute Asthma . It can cause symptoms in muscle because of reactive inflammation , the change in activity, and tension in movement. It causes radiating inflammation through muscle and Neuropathy more often in women than men and can trigger Reactive Arthritis. It can also effect soft tissue , in the eyes, including Dry Eye Syndrome and Uvietis , the digestive system, including diverticulitis , diarrhea, and IBS, to the skin , causing Psoriasis including in the nails , the chest including Pleurisy, Costochondritis , and varied skin rashes and reactions.
This is likely to be because the AS activity acts as a trigger for other conditions that have the same genetic pathway as AS via positive HLA-B27.
As you also suffer from other chronic health issues the presentation of the AS may be more unusual and you are likely to be more susceptible to immunity issues and infections
As the muscles become weaker from lack of movement and activity there can be atrophy, wasting and more complications with breathing and bowel function , the worst being the obvious disabling effect on your quality of life.
You appear to be at that crisis point and waiting for an appointment in January is unacceptable. Make that complaint now and when you get to be seen don't try and struggle to walk and do your best , take a witness with you, ask for a wheelchair to take your to your appointment, and let them see exactly what damage their delays are causing you.
If you aren't in contact with your local AS support group I would suggest you contact them now , for more advice , they may recommend a trusted local Rheumy, but they can also guide in the direction to get the right complimentary support or benefits and a more knowledgeable member of the group could come to your appointment to act as your witness and advocate on your behalf , correcting any errors that the Consultant may state and querying comments that you may not have the energy to question in your severe health state.
I wish you luck and hope you will post to let us know the outcome.
Take care , Bee
I’ve had AS for decades. This isn’t AS.
I have PMR and GCA I can't tolerate steriods and have been put on methotrexate and just a week ago actemra. The tcz took a while to be applied for. I can only have for a year however but my rheumatologist thinks that is all I will need anyway since I am improving quickly. Apply and see if you can get it. Good luck
I don't know what AS is tho or whether that makes a difference
Ankylosing spondylitis - google it - but it needs a different type of biologic, they are very specific, and you got Actemra because you have a GCA diagnosis. You wouldn't have got it for PMR alone as it isn't approved for that so is not funded.
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