Help needed

[Janonline1234]

my husband was diagnosed in March 2022 and given 15 mg steroid. The initial result was remarkable but only lasted for a month at the most. Since then he has deteriorated and the doctor has just reduced his dose. He is now down to 10 mg but the doctor is trying to reduce him even more. His symptoms are now just as bad as they were when he was first diagnosed. I just don’t know where I go from here. Can any one help?

[DorsetLady PMRGCAuk volunteer]

Hi

Sorry to hear this, think he needs to find a doctor who understands PMR -or at least knows that you do not reduce a patients if his symptoms are getting worse. Is there another GP in the practice he could talk to if current one isn’t particularly helpful.

The fact that for the first month he was a lots better indicates he has correct diagnosis - but as link advises he is not cured, the steroids are only controlling his illness, so he needs to be aware if that as well.

Have a read through this so you both understand what should be happening -

healthunlocked.com/pmrgcauk...

[Janonline1234 in reply to DorsetLady]

thank you for responding. Having done some research and discussed this with a dear friend who also has this condition it seems that he should have been on a higher dose initially. I just feel that we have wasted 12 months and he is still no better. Our GP practice is probably as good as it gets - only because we had a very quick diagnosis. As for ongoing treatment I don’t think there is anyone there who can do better. Just don’t know where to go next,

[DorsetLady PMRGCAuk volunteer in reply to Janonline1234]

He may have need a higher dose, but that ship has sailed…and if you are happy with your GP practice and aren’t going to query their approach to his treatment, then as suggested by PMRpro ask for a referral to a NHS Rheumy. Or alternatively book a private appointment if that’s an option. If it is, then ask on here stating which area you live and how far you are prepared to travel.

[Janonline1234 in reply to DorsetLady]

Thank you for advice. Will definitely get to see rheumatologist , our doctor has referred him but still waiting. Will go private.

[PMRpro Ambassador in reply to Janonline1234]

Then do ask here for recommendations because as in the NHS, there are private rheumies who don't "believe" in PMR and will happily take your money while making you worse.

[Janonline1234 in reply to PMRpro]

we have been recommended to Alex Price Forbes at University Hospital Coventry. He has been very helpful for my daughter in laws grandmother. Does anyone have any experience of this consultant?

[PMRpro Ambassador in reply to Janonline1234]

Put the question up as a new thread so others will see it. What does Grandma have?

[Janonline1234 in reply to PMRpro]

she had pmr and actually lost the sight in 1 eye before she was referred to this consultant. I just know that her daughter is now more happy with her mothers care.

[PMRpro Ambassador in reply to Janonline1234]

Oh right - so he is in the r ight realm. Sometimes rheumies are brilliant at (say) RA but thienk PMR is beneath them. Sounds worth pursuing.

[Janonline1234 in reply to PMRpro]

thank you. I will let you know how things progress. We will be back in uk on Thursday and will see how long I have to wait for an appointment.

[Sharitone]

Why would the doctor reduce the dose when the symptoms are getting worse?🤔 It's common for people to need 20mg or even 25mg to start off with. When it's all under control, then you can start to reduce. Your poor husband!

[PMRpro Ambassador]

The first place to look is for a GP who knows what they are doing with PMR - spoiler alert: you don't reduce the dose 5mg at a time and you don't reduce when the patient has symptoms!

The starting dose is often 15mg and it is often plenty - it was for me, I had a miracle in 6 hours! And if it worked at first then it was enough. Starting higher unnecessarily just means further to come down.

But I do have to ask: did he go back to his normal levels of activity once he felt better? You can rarely do that, you have to make lifestyle adjustments too. Pred isn't a get out of jail free pass. And does he have any other symptoms that might suggest GCA?

Another GP in the practice may understand that you should reduce in much smaller steps - not more than 10% of the current dose. 5mg at a time is far too much, some people can only manage 1mg a month. But if they can't sort themselves out, you are entitled to be referred to a rheumatologist. It might not be "just" PMR and it will need a specialist to work it out.

[alangg]

I agree with all that DL and PMRPro have said above. I think you need to arm yourself with all the relevant information on this forum and then write to your GP with the salient points and then request a consultation with the aim of immediately relieving the effects of PMR for your husband and then jointly coming up with a continuing treatment plan which might need to be constantly reviewed depending on progress. It is your husband who is suffering, not the GP!

I always find that writing something down forces the other person to 'listen' and compels them to address the points that are in front of them rather than the 'in one ear and out of the other' approach that a 10 minute consultation sometimes has.

My journey with PMR was very straightforward - mainly because my GP was willing to let me manage the reduction of Prednisolone myself. 15mg was enough for me at the start but I know that a higher initial dose is often needed. Once the inflammation was under control, I used a taper plan based on those on this forum which the GP was very pleased to see and was happy to prescribe based on the regime. It took me nearly 3 years to be off the Prednisolone and free of PMR but it was a steady reduction throughout and I am very grateful to this forum and to my GP for helping me do it!