Pondering what to do

[Body_bonkers]

Been on steroids for PMR now for 8 weeks now - started on 40mg and felt fantastic very quickly.  Dose was lowered following week to 35 and week after to 30 with return of some symptoms. Been increasing every 2-3 weeks and on 50 for a week now and at times I have felt very slightly worse.  Although about 80% of the stiffness/pain has still gone, I can still feel it across my shoulders, in my jaw, bit in the upper thighs and the mattress feels hard again when I go to bed. Felt better on that initial starting dose but will never know if that would have been enough before staring to taper and suspect GCA diagnosis was also missed.

I have to see the GP next week but she looked like a rabbit in the headlights last time and I cannot get a rheumatology appointment soon enough.  The inflammation is still not under control and aside the long term/ unknown impacts, I am tolerating the steroids well so tempted to increase to 60mg (but no higher) with or without her consent.  

I know a lot of you have taken control over your own dosing and noticed when flares occur you some of you to back several doses but not at such a high dose as mine.  What would you do ?

[DorsetLady PMRGCAuk volunteer]

You are correct in that some on here do self medicate - but the difference being [in most cases, but I’m sure not all] -

that they have a lot more experience than you do,

are a lot further along their journey with GCA and/or PMR and

most importantly have their doctor’s permission.

You may be tempted to increase to 60mg [and fully understandable] but please don’t without medical advice….. even if that means ringing NHS out of hours line helpline or presenting yourself at A&E/ER [in fact that may be one way to actually see a rheumatologist].

A dose of 60mg Pred is not like popping a couple of extra paracetamol….

[Body_bonkers in reply to DorsetLady]

Thanks Dorset Lady - the A&E route had crossed my mind too but feels so wrong

[DorsetLady PMRGCAuk volunteer in reply to Body_bonkers]

Why is A&E wrong?

Suspected GCA should be treated as seriously as a suspected heart attack or a stroke - certainly early days.

[Body_bonkers in reply to DorsetLady]

It does not help that the medical establishment gives mixed messaging - not a single doctor (or the one consultation I had with private rheumatologist) warned about GCA yet alone the urgency. I specifically asked the GP what should I do whilst on waiting list and she said the 50mg dose would control the inflammation - I kid you not

[PMRpro Ambassador in reply to Body_bonkers]

If she put you on 50mg for PMR symptoms it IS enough to deal with potential GCA but if there are symptoms of GCA you need IMMEDIATE specialist care, it is a medical emergency. However, putting someone on 50mg for PMR and "just in case" is not the way to be going about anything!

[PMRpro Ambassador]

The problem is almost certainly you simply weren't left on the starting dose long enough but if you responded that well to 40mg originally and are struggling at 50mg no you need medical advice as soon as possible.

Yes, some of us do manage our doses to some extent but only after getting to know OUR PMR/GCA and OUR response to pred and discussing it with our doctors. And rarely at that sort of dose. This is heavy duty stuff we are talking about at any dose and at above 40mg it is really serious stuff.

I assume you are in the UK - please complete your profile to say where you are - so I would call 111 at least and ask to speak to a doctor for emergency advice. Or go to the ED though at night isn't the best time for them to get advice from a rheumatologist.

[Body_bonkers in reply to PMRpro]

I’m UK but did not know you can actually speak to a doctor on 111 although they’d probably send me to A&E anyway with GCA concerns - thanks

[PMRpro Ambassador in reply to Body_bonkers]

If you ring 111 you may get a callback from an OOH doctor and sometimes they will see you at their base or they will recommend you go to A&E, 111 only tells you to go to A&E if their algorithm tells them to. I don;t know that just saying you think it might be GCA would trigger that, it tends to go on symptoms.

[Jbobby]

Totally sympathise. I had similar experience back in Jan. Diagnosed with PMR and suspected GCA ( now confirmed 99%) . started on 30mg Pred. Felt great. Was lowered by 5mg weekly . At 20mg symptoms returned and got worse. Reduction was prob too fast. Was raised up gradually to 70mg😩! Slowly come down. Now on 25mg for two weeks and then testing. So far so good.

I don’t know whether to advise you to go to 60mg. Personally I think my symptoms Wd have alleviated at 60mg and 70 mg was overkill but I was following rheumatologist advice at the time. I’ve now more or less taken control of my own dosage and monitor carefully but check in with blood tests and occasional questions to docs.

[PMRpro Ambassador in reply to Jbobby]

Having started you are what is agreed to be a very low dose for suspected GCA - 40mg is the usualy baseline dose - to reduce 5mg at a time was definitely too fast in that sense. But the problem is trying to get the patient to a silly low dose in weeks not months. And then they went the other way - creeping up almost never works, you are always playing catch-up.

[Body_bonkers in reply to Jbobby]

Thanks Jbobby - it’s reassuring to know someone else has been in similar situation (although I’m sorry to hear it) and hope your progress continues

[HeronNS]

Whatever you end up doing, please keep us up to date! There are many people on here who've been through similar to what you're experiencing (although we are all different in many ways - drives the doctors crazy because hardly any of us fit their template) and they've been there, done that, got the t-shirt, and can be great supportive companions.

[Body_bonkers in reply to HeronNS]

I certainly don’t fit their template but the medical guidance doesn’t seem to have changed for the last 70 years !

[Body_bonkers]

UPDATE: Had all clear from dentist and optician - both confirmed symptoms are more likely to be rheumatological in origin. Been on 50mg of steroids just over three weeks now and can feel inflammation creeping back albeit very gradually - mostly in shoulders and upper legs but jaw too. I'd say c.60% of the stiffness and 85% of the pain is still being relieved by the steroids however (almost all stiffness and 90% of the pain went first week on steroids).

Finally had appointment with NHS rheumatologist yesterday after expressing concern over GCA symptoms to GP. It is also the first consultation since starting steroids mid- March. She has left me shell shocked to be honest with future of increasing pain and debilitation looming again.

She advised that the fact that I have not 'responded' to high dose of steroids precludes both PMR and GCA diagnosis. Here's me thinking it was the dosing regime - miraculous response unsustainable with dose dropped too quickly and that the inflammation has gotten ahead now with two 5mg increases over 5 weeks and 10mg jump to 50mg perhaps just not enough.

She wants to look again at mixed connective tissue and ovarian pathology despite those conditions being ruled by private rheumatologist in order to start steroid treatment. She rather coldly told me PMR/GCA fizzles out on it's own eventually anyway so long term prognosis good and wants me off the steroids. With increasing inflammation I now have to reduce 10mg every fortnight with review in a month.

Any tips on coping with this ? Ibuprofen did nothing for me but paracetamol helped somewhat with pain. Tried various gels/heat/herbal remedies/supplements/increased Levothyroxine and HRT for the stiffness but nothing worked.

[PMRpro Ambassador in reply to Body_bonkers]

Well I fear she is wrong. If you got 90% relief, that is acceptable in a diagnosis of PMR/GCA (they look for 70% improvement). If you reduce the dose too soon, too far, they will return and in a taper step you should never feel worse at the end than you did at the start of it.

"She rather coldly told me PMR/GCA fizzles out on it's own eventually anyway so long term prognosis good and wants me off the steroids"

However - if you happen to have GCA and she reduces the pred dose BEFORE it has fizzled out, which when all is said and done doesn't happen in weeks, is always years and may be 4 or 5 years at least, your sight remains at risk. And in a small percentage of us, PMR lasts well into double figures years and maybe for life, especially if you are messed about with the diagnosis.

I'm a bit surprised that paracetamol helped though it might if it is UCTD, not sure about that, Really don't know what to suggest you do unless your GP will make sure you have enough high dose pred to take should you develop any highly suspicious of GCA symptoms - visual symptoms and jaw pain in particular and severe headache,

How confident was the private rheumy that it was GCA?

[Body_bonkers]

When I mentioned jaw pain to the private rheumatologist mid January he just asked about headaches but GCA was not mentioned and then various blood tests came back normal. It is only afterwards that I learned about other symptoms, some of which have emerged later that increased my concern. Most of these came together mid-December however so if it is GCA, then maybe not had it long. When I told the optician his reply was "that definitely sounds like GCA" and he has patients with the condition but then was happy to leave it for two years until next appointment which surprised me but then he knew I was under the care (if you can call it that) of a rheumatologist.

Thanks PMRPro - I think she is wrong too and some comments made me question her judgement e.g. my CRP was only 9 which I believe is enough for PMR. Trouble is steroids could also be making an alternative diagnosis more difficult now but I'm not prepared to take that risk. Will therefore try and get second opinion off the private rheumatologist

[PMRpro Ambassador in reply to Body_bonkers]

You can have PMR and GCA with absolutely normal blood markers - mine were never even near the top of the normal range.

Can the private guy not put you on their NHS list?

[Body_bonkers in reply to PMRpro]

Would be different health board but can also only ask - thanks

[PMRpro Ambassador in reply to Body_bonkers]

That doesn't matter - in England at least. Rod Hughes has had private from a long distance from CHertsey but if they are happy to travel, he has put them on his NHS list.

[Bluey-1]

Do not mess with taking 60mg of steroids without medical guidance. You will really understand what Body Bonkers means!