A neurologist in Greater London

[Motida]

I see that Dr Sarah Mackie is the main lead for PMR. Are there any people of her calibre and experience in the greater London area.

My GP refused to refer me. They fobbed me off for a diagnosis from March to October 2022 because I was 80. I asked for an "infection marker" to be included in my annual blood test and this was reluctantly agreed. Within two days of the results coming back they prescribe pred 15mg and a scrappy list of when I should start to taper. I asked how long it they would have taken to reach the diagnosis if I had not persisted and they said a few months. This means that PMR has had a good time to get a grip on my immune system and not helped by Pfizer vaccines apparently.

I live alone and manage total neuropathy in both feet and bad cramping in the feet, shins and thighs at night and sometimes in the day time along with cramping in the hands during the day. I am under the CMT clinic in UCLH.

After reading all the advice here I realise that I could manage the condition much better. They put me on AA over the phone after the bone density scan too. Never heard of it before or how long I would have to take it and what it does. All things you cannot ask over an unexpected phone call really from some doctor you have never heard of before.

In short I would like to pay for a consultation with someone experienced/interested in PMR to work out a tapering programme and how much exercise one should take and perhaps any other tips and advice. I am currently taking 8.5 mg but nervous to reduce further while some of the symptoms and fatigue have returned suddenly. Started on 28/10/22 on 15mg. If one increases the dose how long should one stay on that before trying to reduce again?

If there is no one of Dr Mackie's calibre I would of course go to Leeds for the day if she sees private patients?

Many thanks for all the interesting discussions - they really raised my hopes for a way forward.

[PMRpro Ambassador]

Why are you asking for a neurologist? PMR is managed by rheumatologists - and in the London area I would recommend Prof Rod Hughes in Chertsey who I would rank alongside Prof Mackie and he does private work, adding patients to his NHS list if he feels it is appropriate. Sarah Mackie is part time NHS, part time research and does no private work at all.

PMR itself is not the disease - it is the name given to the set of symptoms and all that can be done is manage the symptoms with pred. I don't think you can look at it as "PMR has got a hold of the immune system" because of the relatively short delay you had.

In terms of what exercise you can do you will get more discussion here than the average rheumatologist will be able to offer, even privately, They have never had PMR! We are also pretty good at tapering programmes - look in the FAQs - and Prof Mackie approves of them too.

I would suggest you return to the last dose where you had no symptoms. To have got from 15 to 8.5,g since October is not slow but also not terribly fast. You are not reducing relentlessly to zero, you are looking for the lowest effective dose and it sounds as if you have got there quite well. If 9mg was good, go back to that, You don't sound as if you have developed a good going flare so that might be enough, try it first.

[Motida in reply to PMRpro]

Thank you so much. I looked at the list of rheumatologist in London and about three put PMR in their interest box. Also I had read here that people had shabby treatment from some consultants.

I had to send the tapering programme to the surgery so they knew what they should prescribe. 15 mg for six weeks then 12.5 for four weeks then 10 and now reduce one mg per four weeks and everything should be burnt out by December! I now realise that this is far too general and tapering does not work like that.

What is not clear is how do you know when it is safe to reduce 0.5 or even 1 mg or is it just trial and error. My GP quoted exactly what NICE had put on their advice they had no idea really. Is there any advice on how much physical work or exercise one should do. I have an allotment and dig and lift stuff - should that be measured or is it good to work till you drop as they say?

Thanks again.

[PMRpro Ambassador in reply to Motida]

"and everything should be burnt out by December"

Yeah, well, thereby hangs a tale! It is very unlikely, honestly! Only about 1 in 5 get off pred in a year. It happens, but not very often. You taper in small steps until you get to a dose where the symptoms return - and then return to the previous good dose. Wait a couple of months and try 1/2mg again. Eventually it will work but there is no point at all trying to force a reduction because all that will happen is the PMR will win and you run the risk of ending up back at the start.

No, NEVER work 'til you drop, you can cause a really severe flare and at the very least develop DOMS (delayed onset muscle soreness) which will be out of proportion to what you are used and be really difficult to get over, Difficult to say how much you will manage - how have you been getting on so far?

[DorsetLady PMRGCAuk volunteer in reply to Motida]

Agree with PMRpro on tapering etc…and gardening - although very rewarding for you personally does cause a lot of issues for those with PMR/Pred affected muscles….

Posted today - but one of many on the subject -healthunlocked.com/pmrgcauk...

and maybe have a look at this for more info whilst you are waiting to find a Rheumy - healthunlocked.com/pmrgcauk...

[Bedwell]

so interested that you have neuropathy in knees and feet at night!!!! Throbbing and burning! I take 2 Zapain tabs and a gabapentin for nerve in lower back.. supposedly cause of neuropathy! ! Still have to wrap feet in wet towels or turn a fan on!!! To help get back to sleep!onlymy cranial osteopath thinks it’s related to the predisolone! Now on 5 after nearly 2 years. Very debilitating??? Interrupted sleep. Do take half a tamazapam sometimes too! And I’m basically alternative with my medicines !!!! Really? Am almost 85. Not many over 80 on this forum. So helpful !

[Motida in reply to Bedwell]

That sounds very challenging - poor you . The nerves in my feet are shot as they say which may be an inherited condition called CMT. Was wrongly diagnosed with Mortons Neuroma and by the time they found it was not, the nerves were damaged and will never repair themselves. Just hope my feet see me out.

The cramps I get at night are not related to the neuropathy. I manage the cramp pain by spraying the area with a deep heat spray and after about 5 minutes the circulation is improved to the area and the pain goes. I also get hot flushes left over from the menopause or that's what they say, but I try and ignore them. It's the sleep deprivation which these things cause which is so bad at our age, but what to do?

By the way I made a typing error in the heading of my first entry - good that it was flagged up. I feel so bucked up from the advice today. Thank you again.

[Nextoneplease]

Hi Motida

Hope you’ve found the responses helpful - it’s all so complex isn’t it?

Re your last post, just wondered if you’d noticed that you can edit posts by clicking on ‘more’ at end of post and selecting ‘edit’….

All the best and hope you feel better soon 😊

[Motida in reply to Nextoneplease]

Thank you for flagging that up, Nextoneplease. Thank you too to Dorsetlady and the PM Pro. I wish I had known about you all when I was first diagnosed in Oct '22. (What prompted action by the GP were the CRP readings of 46, ESR of 102 and Ferritin of 290). Had I not insisted for them to be included in my annual thyroid blood test, I wonder what would have happened.

I got to 8 m.g for 28 days ending on 26 April 23 and now have nearly all the symptoms of pre-diagnosis. I can get out of bed and stand up from a chair though, but can't stand for long or move my neck easily. Vision is not clear and have coughing fits suddenly. Crops of skin tags come and go in the groins and in the arm pits - one day they are there and gone the next day.

I went back up to 9 m.g on 27 April but dont feel any better. Wondering if I should go back to 12.5 or 10 and start again? I was going to private message Dorsetlady but could not see how to do that. I read her long article on tapering but was not sure how to use it in my case. I am 80 and have gained 7 kg since taking the steroids. After your advice on work I will certainly keep gardening down to an hour only, but at the moment I can't even do that. I drop off to sleep at the computer or on zooms without realising which is very depressing.

I was prescribed Lansoprazole 30 on 21/3/23 along with AAcid over the phone but not sure what purpose it has. I was not asked if I wanted either of them even.

Anway thank you all again for sharing so much vital information. I am so grateful.

[PMRpro Ambassador in reply to Motida]

Try adding 5mg to the dose you flared at and take the 13mg for 10 days or so, If that has worked to combat the symptoms you can then drop back to the dose above where you flared without a slow taper. But then stay there for a month or two before trying to reduce again though it does sound as if 9mg is your limit for now.

You can help the weight gain by cutting carbs drastically - especially processed carbs and added sugar and limit fruit. Not NO carb, LOW carb. This website gives a good introduction and easy to understand info:

dietdoctor.com/low-carb

To send a private message click on the avatar (the picture and/or name) of the person you want to message and their profile page appears - there is a box with Message at the top right. Click on that and it is like writing a post but only they can see it.

[Motida in reply to PMRpro]

Thank you both so much for your advice on the higher dosage, and for how long, then about a much slower tapering. I have filed the advice and started on 13 mg today and hoping all the symptoms will subside soon. Today they are worse but fingers crossed things will improve.

Also the information on how to Private Message if that is absolutely necessary. However, sharing information with the group is preferable and is where I have been learning so much. So thanks everyone.

[PMRpro Ambassador in reply to Motida]

Absolutely - we will answer PMs but it takes us the same time as on open forum and isn't any faster, possibly slower as I leave PMs to the end unless it is a conversation I'm already part of. And as you say, on forum everyone gets to share.

[DorsetLady PMRGCAuk volunteer in reply to Motida]

To private message anyone just tap on their avatar (picture) will take you to their profile page -then select Start Chat (blue box) take you to new page. Then just write and send.

Usual advice for dealing with a flare is contained in this link -

healthunlocked.com/pmrgcauk...