slow reduction

What were the other "atypical" symptoms Dinah? Did pred work for you? Or have you been put onto something else?

My other symptoms which were always considered a bit iffy were - lack of shoulder involvement until about twelve months in when I got tendonitis/frozen shoulder; stiffness down back rather than front of thighs; swollen painful knees; painful vertebrae in mid back area; urinary frequency. But it is the swollen knees that seem to be the clinching factory for the rheumatologist.

Pred has worked pretty well for me - I am down to 3.5mg, but as I have got lower the night time back ache has returned and at 9 downwards I had really bad swollen knees. I was always conscious that I could never say the 5 day trial of 15mg was "miraculous" - but I could climb stairs again and over a period of few weeks I felt great on it

My new rheumatologist has suggested trying methotrexate after Christmas but is not trying to hurry me off Pred. In fact he suggested I go up to 4 as he said he didn't worry about being on it at 5mg and below. 

But I am not going to go on MTX until I have done more research and talked to the rheumatologist again about options. Because I really don't like the sound of it, and maybe low dose prednisolone would be less harmful in the long run.

 

Oh yes, and the post above reminded me - I did also get periods of collarbone pain.... But my pain/stiffness seem to move around to different areas every six weeks or so

Yes, I think that is supposed to be a signal that it is "non-differentiated" in some shape or form. I have a friend whose RA was like that for a long time and only after a long period of remission (years and years) did it return in a form that was recognisable to a rheumy as RA. But as you say - if below 5mg of pred is managing it fairly well now I'm not entirely sure I'd choose to try mtx yet. For the people for whom it doesn't cause side effects and when it works it probably may be better - but at 5mg pred I have no side effects and have lost loads of the weight I put on with a different sort of pred. 

Mind you - ask the forums about urinary problems - definitely accompanies PMR for many many patients! I'm a patient rep for a research group and we mentioned it during a meeting. The consultants were very surprised - but one of them told me a few months later she had started to ask about it and loads of PMR patients said "Oh yes". The collarbone pain used to set in just under the visible bones, not all the time but it didn't like me typing. And the back of my thighs were stiff/uncomfortable. The front thigh pain was definitely claudication. And the back pain that returned at lower pred doses was finally identified as myofascial pain syndrome - and that can be dealt with in other ways more effectively. I favour Bowen therapy myself.

Thanks Eileen - I have had two Bowen sessions so far. Difficult to say whether it is helping as I had steroid injections in my knees last week so am generally feeling pain free anyway.... But I will carry on for a few sessions as it is nice and relaxing!

Asking to be referred to London was a really good move. I'm sure Exeter are fine when they are dealing with a known quantity but they were hopeless in my case. Obviously doctors don't like to criticise others, but I sensed a  raised eyebrow when I had to keep saying "no I haven't had any scans...no they didn't do that either, etc." 

Funny that! I know a lady in the London area who was first dx'd with PMR by her GP but when she was eventually sent to a rheumy because the pain came back when she reduced he was rude and dismissive, didn't even examine here but told her it wasn't PMR, it was probably fibromyalgia and she was to stop the pred as quickly as possible. Yes, this would hurt a lot but pain wasn't his remit, she should ask for referral to a pain specialist! She asked for a referral to someone else. This lady rheumy has been delightful, done scans and loads of other tests that hadn't been done before and put her on another RA drug that does seem to be achieving something. 

I found a Bowen therapist here last week and had a first session on Friday - not out of desperate need but because it was there. Yes, I love the relaxation bit without the muscle pain massage can induce! Something is different, not quite sure I can put my finger on it, but definitely something.

Do you have to travel to London much to the rheumy or does your GP share the management? My daughter is hoping for her severely asthmatic daughter to be referred to the Bromptom since the local Sick Kids consultant is an absolute twerp - his management plan has had her in resus at least twice but he insists she is non-compliant with meds and has something else for which there is no evidence at all. Mum is a nurse - I don't think so! But the logistics of living in Scotland with your consultant in London could be interesting.

Well the hospital appointments are only 3 or 4 months apart - and I'm really lucky because we have a flat in London so it's very easy for me. They are doing a research project at Guys into immune regulation in rheumatic disease which I've signed up for. So at least I can feel my blood is going to a good cause!

My son has just started in Intensive Care at the Brompton as part of his London rotation - it's a great hospital. Perhaps your daughter could ask to be referred there just for a consultation - if only for reassurance that her child is getting the right treatment? 

It's because she isn't getting any real help she wants the referral. They are totally stumped in the local hospital, it's a case of reacting to keep her alive during an attack and she no longer responds to drugs rekiably. The hope was Edinburgh sick kids would come up with some ideas but their offering was this action plan that just ends up with her in resus. The local hospital consultant's plan is far better, at least an HDU bed is enough. She had 4 months not being admitted - on 60mg/day depo-medrol. She's 14 and put on about 3 st in as many months, stretch marks and the rest of the high dose pred joys so they stopped the trial.

It's like living on a knife edge - arthritis is far preferable.

For those who haven't already seen it, in posts 4 and 5 of this thread is a "dead slow and nearly stop" way to reduce pred dose which has worked for pretty much everyone who has tried it. If the underlying autoimmune disorder is still active you won't get to zero however slowly you try!

https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

And at these very low doses there are next to no side effects - even doctors don't worry too much. So don't rush to reduce every month - especially at this time of year with cold weather and xmas coming with all that entails. If you are hovering on the borderline of your "perfect dose" it may take a couple of months for inflammation to gather its forces and make itself known again. Quite a lot of people get to zero - and 3 months later have the flare that was hatching at those lower doses which usually means back to at least 5mg, often 10mg and starting over again.