Seeking a Recommended Rheumatologist

[AncientAunt]

Please may I ask if anyone can recommend a good Rheumatologist in Cheshire or further afield that has actually helped them? I'm really struggling with Polymyalgia. Thank you in advance.

[piglette]

Perhaps you could mention what your struggles are, as people who actually suffer with PMR can have good understanding of the problems and you can hear how they cope.

[AncientAunt in reply to piglette]

Thank you for your kind reply. Gosh, I have so many issues that writing it all will be a long essay. It’s all the usual symptoms.

So briefly, lots of pain in my upper arms like someone has punched them really hard and weak muscles, difficulty getting out of bed in the morning, lifting my arms, lifting a kettle.

Walking is slow, like trying to walk through treacle; not painful, just mildly achy, it’s just my muscles seem to be stiff and won’t work properly. Also, I get very exhausted after just twenty minutes and have to sit down to rest.

Kneeling down; it’s so difficult to get up again.

Fatigue; I can wake up after a good night’s sleep feeling tired and this lasts all day. I have periods of extreme exhaustion.

Brain Fog; I just can’t think anymore.

Groundhog Day! My symptoms ease throughout the day and are not nearly so bad in the evening. This is when I do any chores around the house. Then I go to bed and wake up in pain and barely able to move again in the morning.

I’d like to find a suitable treatment plan. I’m hoping a good Rheumatologist can help me with this, hence my original question.

[PMRpro Ambassador in reply to AncientAunt]

Has your GP diagnosed PMR? Have they prescribed prednisolone? That is the first step - long before you get as far as a rheumatologist. There is an international shortage of rheumies and PMR is generally diagnosed and managed by GPs and referrals are only once there are problems or other reasons to do so.

[AncientAunt in reply to PMRpro]

Hello,

Yes my GP has diagnosed PMR. Yes, I am on 15mg Prednisolone and have been since mid November but my GP wants to reduce this now. Thank you for the information about Rheumatologists.

[piglette in reply to AncientAunt]

Remember you have got an illness. Just because you are taking some tablets does not mean you are cured. PMR is life changing and you need to rest, rest, rest. As long as the dreaded PMR is control you have to ensure that it does not get too cocky!

[AncientAunt in reply to piglette]

Yeah, good point about the rest. It’s funny because as you sit quietly you begin to contemplate about all the jobs that need doing!

[PMRpro Ambassador in reply to AncientAunt]

Yes - realised earlier I hadn't said this, piglette has reminded me: YOU have to do your bit, you can't depend on the pred entirely. Some people try to carry on as normal and that just makes the pain worse. You have a serious systemic illness and rest and pacing are essential. The pred has cured nothing, it is a management strategy to relieve the symptoms by combatting the inflammation. You need enough pred and I don't think you are on a high enough dose - but you have to avoid making things worse too.

[AncientAunt in reply to PMRpro]

Thank you, I’ve now taken on board the need for rest and pacing. I’d not considered pacing before now.

I also agree with you that I’m not on a high enough dose of Prednisolone but my GP won’t issue above the NHS guideline of 15mg.

[PMRpro Ambassador in reply to AncientAunt]

Funny how Guidelines are played to suit them - "It's the GUIDELINES....". or "Guidelines are only guidelines ..."

It is rubbish and plenty of experienced GPs will ignore them - in fact, the NHS info page only says a "moderate" dose of pred with no number quoted. 20mg is also a moderate dose. When you go to the horse's mouth and the 15+ year old BSR Guidelines, which are under revision at present, it actually says very clearly

"However, there is no consistent evidence for an ideal steroid regimen suitable for all patients. Therefore, the approach to treatment must be flexible and tailored to the individual as there is heterogeneity in disease course. Some benefit from a more gradual steroid taper. Dose adjustment may be required for disease severity, comorbidity, side effects and patient wishes."

and

"... patients with a typical clinical picture and complete sustained response to treatment, and no adverse events can be managed in primary care.

However referral may be required

Incomplete, poorly sustained or non-response to corticosteroids

Inability to reduce corticosteroids

Contraindications to corticosteroid therapy

The need for prolonged corticosteroid therapy (>2 years)"

Both those cover you and if it were me I'd insist on a different GP first and if not - I hope you will find a rheumy to back you. Pretty sure Rod Hughes would!!

[DorsetLady PMRGCAuk volunteer in reply to AncientAunt]

As PMRpro has said -guidelines are just that.

Have a look at these from 2019 (which say same as earlier ones) -and screen shot recommendation #3 to show GP -

hcplive.com/view/eularacr-t...

[PMRpro Ambassador]

Hi and welcome!

I hate to disillusion you but rheumatologists who will help you with the struggles with PMR are very few and far between! However, that is the purpose of this forum. I see on your bio you describe PMR as "a somewhat debilitating condition" - that doesn't come as news to us as everyone here has either PMR or GCA.

If you tell us about your struggles, maybe we can provide founded and tried and tested assistance. Some of us actually work with rheumatologists to improve patient information - we aren't just here for a chat.

[AncientAunt in reply to PMRpro]

Hello,

Thank you for your kind reply. I’ve now listed my symptoms as per your suggestion. It’s good to know some of this group works with Rheumatologists. I’m hoping that a good Rheumatologist can help me with a treatment plan, hence my original question but it would be great to hear tips from others in a similar situation.

[PMRpro Ambassador in reply to AncientAunt]

In that case - I think you probably DO need a rheumy!! Your GP doesn't appear to have you on the right dose - it isn't rocket science: you start at 15-20mg and with that you should get at least a 70% improvement within at most a couple of weeks and if that doesn't get you to an acceptably low level of pain and symptoms. you need to try more up to a maximum of 25mg/day and from what you say - you aren't well managed after 2 months and yet he wants to REDUCE the dose.

You say Cheshire or further afield - how far further afield? One particularly good PMR rheumy is in Chertsey but often works with an initial F2F appointment and then follows up by phone or video call. But that may not be acceptable to you.

The northwest has been something of a desert for rheumies - NHS or private. There was a good one at Oswestry who did private but not sure if he is still there, Hopefully someone will reply - maybe add Cheshire to the title of your post, that may attract more notice.

[EFCB in reply to PMRpro]

Dr Ricky Abernathy Cons Rheum Countess of Chester…

[PMRpro Ambassador in reply to EFCB]

What's he like?

[AncientAunt in reply to EFCB]

Thank you, much appreciated.

[AncientAunt in reply to PMRpro]

That’s interesting about the 70% improvement. It gives me hope that I don’t have to suffer in silence. I now have a benchmark to aim for.

I’m getting some good recommendations for Rheumatologists now.

[DorsetLady PMRGCAuk volunteer]

Hi,

others have replied about Rheumy, but maybe have a look at this introductory post- bit long, but do hang on to it and dip in and out - might give you better understanding of PMR- and look at the link within for about pacing. That’s one of the most difficult things for people to get a handle on early days.

healthunlocked.com/pmrgcauk...

A bit more info on tapering in general-

healthunlocked.com/pmrgcauk...

If you have specific problems - best to raise a post on each one… otherwise you get too much information in one go and it can be a bit overwhelming.

[AncientAunt in reply to DorsetLady]

Thank you for your reply. I’m beginning to get round this forum / website and am now picking up some great reading material including a lot of your articles. I was up ‘til late last night reading them all and will read them all again today. Your Adrenal Gland article was brill.

I understand what you mean now about tackling one problem at a time! Pacing is a new concept for me but makes perfect sense.

Much appreciated, thank you!

[DorsetLady PMRGCAuk volunteer in reply to AncientAunt]

You’re welcome…

[Naim1]

Prof Hughes, Chertsy.

I travelled 2 hours to go & see him & 2 hours back.

The best time & money ever invested.

After a year of symptoms just like yours & battles with GP ( who tried his best & I thank him for everything)...Prof Hughes got me back 'living' again & having had 10 out of 12 months off work...I was back in work 2 weeks after seeing him.

He understands, he gets it, he knows how to play PMR!

[AncientAunt in reply to Naim1]

Thank you so much for your recommendation.

[Tappo in reply to Naim1]

Is this professor Rod Hughes?

[Naim1 in reply to Tappo]

The very same. 👍

[Brikel]

Dr Clare Dubois

NHS Broad Green

Or private Spire Cheshire

I have been with her for over 10 years

She is very empathetic and Knowledgeable

[AncientAunt in reply to Brikel]

Thank you so much for your recommendation.

[SufferingPMR]

Hi AncientAunt

I'm sorry to read of your troubles and can sympathise, as I had a similar journey at the beginning. I live in Cheshire and was finally referred to Dr Bacha at Stepping Hill Hospital, but I see her, or one of her team, at Macclesfield Hospital as it is more convenient to me. However, I get most of my knowledge from this forum , PMRpro, Dorsetlady and many others are amazing with all their help and advice.

I am also a member of PMRGCA Cheshire Group. The group has only recently been set up - there wasn't a group back in March 2022 when I got this disease and I have only met the ladies once, they were very friendly and helpful when I did. There is usually a meeting every month, I think, either via Zoom or in person and they usually meet somewhere around Knutsford.

If you would like to come along to our next meeting it is a face to face one on Friday 21st February? I don't know the location yet, but it would be lovely to meet you.

[AncientAunt in reply to SufferingPMR]

Thank you so much. I’m just learning how to get around the forum and extract the wonderful information there. I have found some great articles by Dorsetlady already. Just understanding this condition makes it easier to deal with.

The Cheshire group sounds great and I would love to meet you, too. Knutsford is quite some distance from me so I’ll have to see how I’m feeling nearer the time methinks.

I’m getting quite a few recommendations for Rheumatologists that understand Polymyalgia now which is really helpful, so thank you for your suggestion. Much appreciated.

Hopefully, with the help of a good Rheumatologist, I can now find a treatment plan that can make my life a little bit easier.