Polymyalgia

[Caravanlover]

My husband has had polymylgia for about 6 years and started on 15mg prednisone and has only ever got down to 8mg but then can't cope so is now on 13mg . Consultant wants him to get down to 5mg .He would have no quality of life and would be in pain too much . He has tried other drugs but they didn't work . He also suffers from dizziness but no one has the answers why . Any advice welcome

[PMRpro Ambassador]

Find a different doctor who is prepared to treat the patient in front of them and not the image he has in mind. Is a private appointment with someone we recommend an option? Then the GP can manage the rest.

It was over 4 years before I reliably got below 10mg and in the first 13 years of pred I was only down to 5mg for about 18 months before I had an increase in symptoms and was back to above 10mg. I am very lucky, my doctors here in northern Italy are all about quality of life and have never got iffy about the dose of pred I required to be able to function. When it got silly high (I couldn't get under 15mg without problems) my rheumy put me on tocilizumab/RoActemra because he could. That has meant I can get to 6mg - in terms of PMR-type symptoms I could get lower but the adrenal function is the limiter now.

They are often so terrified of pred and its side effects (most of which can be well managed or avoided when you know how) that they are willing to condemn their patients to a life not worth living. For me, the thought of a return to the UK and possibly not being able to still have tocilizumab if I still need it is quite scary!

However - is there any other symptom besides the dizziness that might suggest a source? Is it intermittent or there all the time? Does anything else happen at the same time or just before? GCA can affect the ears - and cause dizziness. An arrythmia where the heart beats too slow or too fast can cause dizziness and my atrial fibrillation was almost certainly caused by the autoimmune part of PMR having damaged the electrical cells in the heart but pred can also cause it and that is what doctors often blame, Mine had started long before pred so that ruled that out.

[SheffieldJane]

Does your husband have a Rheumatologist?

I was in a similar situation, unable to taper without feeling very unwell. My Rheumatologist is very thorough. She arranged for me to have a Vascular Ultrasound Scan, this test showed that I had Giant Cell Arteritis/ Large Vessel Vasculitis. I was immediately put on 40 mgs of Prednisalone and then Tocilizumab/ Actemra. I think a second opinion is required here. If you let us know your part of the country and we may be able to recommend a Rheumatologist who is knowledgeable about our conditions and sensible about Prednisalone. More investigations are called for. Best wishes.

[Caravanlover in reply to SheffieldJane]

Thank you for your reply. I'm not very impressed with his consultant although a very nice chap . We are in Wiltshire

[DorsetLady PMRGCAuk volunteer in reply to Caravanlover]

In another post  random901 has recommended Rheumy Dept at Salisbury -so hopefully they’ll see this and reply. Hope it’s not same one!

..and agree with others you need a doctor that treats your hubby as an individual.

Might be worth raising a new post asking for recommendation if you’re willing to go private and saying how far willing to travel - think Bath has a good reputation.

[Poshdog in reply to DorsetLady]

Can I ask which Bath hosp - Bath clinic, Sulis or good old RUH? xx

[DorsetLady PMRGCAuk volunteer in reply to Poshdog]

Got a feeling it’s RUH, but can’t recall who mentioned it…sorry..

[Poshdog in reply to DorsetLady]

Shall keep eyes and ears open....indicator useful... thank you 😊

[DorsetLady PMRGCAuk volunteer in reply to Poshdog]

Is Gloucester any good for you - this Rheumy was recommended -

gloshospitals.nhs.uk/our-se...

[Poshdog in reply to DorsetLady]

Thank you. Yes, can get to Gloucester. Good to have recommendation - many thanks x

[DorsetLady PMRGCAuk volunteer in reply to Poshdog]

Worth a try then… and let us know if you can and how it goes please…

[Poshdog in reply to DorsetLady]

Will do - if I go! At moment 3.5mgs after 7 years. Managing, so far so good. Aware too many cooks ......! But was interested to hear of local backup, thank you x

[Llewellington in reply to Caravanlover]

I live between Bath and Bristol. I see a rheumatologist at the Nuffield in Bristol who is also NHS @ Southmead. I opted for private as the waiting list was 18 months. He really understands PMR and a big thing for me, is he treats the symptoms not the test results. I’m now struggling with tapering (currently 7mg and symptoms have returned to original levels) and I’m seeing him again next week.

[suzy1959]

Yes, my sister in law is being seen in Bath and they sound quite knowledgeable and very thorough.