No rheumatologist appointment

[Waves2]

Cornwall apparently doesn't offer appointments with a rheumatologist so after 14 months of pred tapering and then GCA after tapering too low I still haven't seen or spoken to a specialist. Is this right?

[PMRpro Ambassador]

If you have GCA you NEED a rheumatologist somewhere - most GPs aren't capable of managing that.

[Waves2 in reply to PMRpro]

I will follow up with gp on next appointment but 4 different gps here have given me the same answer now. I was fairly happy managing my tapering until it went so wrong.

[PMRpro Ambassador in reply to Waves2]

It probably wasn't your tapering that went wrong - it was possibly the diagnosis. How long after them saying it was PMR and at what dose did GCA appear? Who diagnosed that and how?

[Waves2 in reply to PMRpro]

14 months. I was down to 3.5 mg. GP diagnosed based on symptoms and blood tests and she spoke to rheumatologist. Temporal arteritis was the term used initially then GCA.

[PMRpro Ambassador in reply to Waves2]

You must be one of the small number of patients who are unlucky enough to have PMR which later progresses to GCA but much later. I am appalled that your local system considers GPs capable of managing GCA. But I suppose if there are not enough rheumies to go round there isn't a lot of choice and we are in a rather strange situation at the moment with Covid.

[DorsetLady PMRGCAuk volunteer]

Hi, and welcome,

no, not right

If you have GCA you should be seen by a specialist - at least once.

I only saw mine twice, and he was quite happy for my GP and I to manage things - but many GPs don't have the knowledge.. although a good GP is better than a bad (or no!) Rheumy!

..and from being on here for so long I realise my treatment was slightly out of the normal.

Can you give us a bit more information about your illnesses/doses etc on your profile so we have a better idea, and may be able to help.

[Waves2 in reply to DorsetLady]

Firstly I will say I now have a very supportive gp..it is clear tho that gps are not specialists nor would we expect them to be. I was tapering slowly...0.5 mg per month once I got down to 5mg and with no muscle pain reaction thought i was ok I didn't connect new symptoms with pred withdrawal but thought I had a virus or allergic reaction with swollen eyes, sinus headache. Given covid test..negative..sinus meds and antibiotics. Then the sinus headaches went to reveal underlying temporal headaches, along with severe shaking, sickness, depression etc and the penny dropped. Bloods showed v high inflammatory markers and temperature. Put onto 40mg and now on the road back. Had slight speech issue for a couple of weeks so my jaw was a bit stiff too. I have learned so much from this site. I feed back to GP...

[DorsetLady PMRGCAuk volunteer in reply to Waves2]

So what dose are you on now?

I wasn’t being disparaging about GPs per se - just saying they really shouldn’t be left alone to manage GCA without some input from Rheumy - if only early days like mine - well not so early, 9 months in.

Ophthalmologist diagnosed mine - so set taper up initially... but Rheumy was in no hurry to see me - case of another consultant being the lead I think! Bruised ego.

[Waves2 in reply to DorsetLady]

Oh I didn't take it that way don't worry. Now on 30mg. GP expected I would have to see rheumatologist but on ringing was told there was no need.

[DorsetLady PMRGCAuk volunteer in reply to Waves2]

Okay!

But I’m sure both you and GP will be on the look out for any anomalies...not that it’s a given there will be.

My journey with GCA (once past the pre diagnosis horrors ) was very straightforward - no flares, no hiccups - just slowly tapering when I felt it was okay and regular blood tests/GP appointments (oh, those were the days) just to confirm on right track.

Hope yours goes as smoothly.

[123-go in reply to Waves2]

As you say, GPS aren't specialists but there is updated guidance for GPS that direct them to be watchful for GCA in patients. Wouldn't it be something if all GPs, as professionals, set aside some time for reading?

I'm pleased for you that the increased dose has helped you.

[Waves2 in reply to 123-go]

Thank you.

[Theziggy in reply to 123-go]

GPs have never been busier, I doubt they have extra reading time factored in.

[123-go in reply to Theziggy]

The Ziggy, I absolutely agree that the past months will have precluded things like extra reading but we haven't always been in this situation. I'm sure that some GPs wouldn't be so dismissive if they kept up to date with guidance and recommmendations. We've heard from people on here how they've suffered as a result of their GP having little or no knowledge of PMR/GCA and they have my sympathy. 😩

Going off tangent and talking about a different caring profession, I, as a teacher now long retired, would have been hauled over the coals if I hadn't followed new initiatives. Parents wouldn't have been happy either!

Let's hope that a vaccination will ease the burden on the NHS.

[SheffieldJane in reply to Waves2]

Can I ask if any connection was drawn between your swollen eyes and sinus symptoms and GCA? I have those symptoms that I haven’t thought to mention to my Rheumatologist (Yorkshire) and I have Large Vessel Vasculitis and Giant Cell Arteritis diagnosis ( treated with a tapering Prednisalone dose (8) and Tocilizumab injections.

[Waves2 in reply to SheffieldJane]

I would definitely raise it even if just to rule it out but for me it was the warning signal that I missed that my body was struggling at lower dose. Good luck

[SheffieldJane in reply to Waves2]

Good luck to you too. You need to get your sharp elbows out. GCA is a serious disease, that warrants priority attention. I travel to a different town to see a Rheumatologist who has a particular expertise and interest in these conditions.

[SnazzyD]

So what DO they see? GCA is supposed to be treated as an acute medical situation.

[Waves2]

Being Cornwall maybe there is only one for the county?

[DorsetLady PMRGCAuk volunteer in reply to Waves2]

...and if he’s out surfing, no chance 🏄🏾‍♂️ 😳

[Longtimer in reply to Waves2]

Couldn't you ask the Secretary to at least ring you....how can they refuse that........

[Marijo1951]

I find this quite shocking. Fortunately your GP sounds supportive and knowledgeable and prepared to do his best for you, but my GP was hopeless. He eventually referred me to a rheumatologist because there was something amiss with my blood tests that he didn't understand, but I learned later that he wasn't aware of GCA (or Temporal Arteritis as my rheumy tends to call it too). I wonder if he was aware of PMR, given that it's normal for GPs to manage it and he saw me at my stiffest and most painful as I had a couple of very early morning appointments with him. I had 4 months of suffering both complaints before I was diagnosed. If he had been practising in Cornwall, goodness knows what the outcome would have been. As it was, he checked four north London hospitals online and got me the earliest appointment which was at the Royal Free, where I've been treated quite satisfactorily since. I'm very disturbed to learn that there might be some kind of postcode lottery in a matter like this.

[Maisiek]

My GP attempted to refer me to a Rheumy , but “computer said No” : that GPs could deal with PMR. It wasn’t GCA though . I’m in Essex . Good luck

[Waves2 in reply to Maisiek]

Not just here then..thanks

[Retallack]

This seems nonsense. I used to live in Cornwall and belonged to the Truro PMRGCA to group. A lot of the group were under the rheumatology department at Treliske. Suggest you contact the group, details of which are on the pmrgca.uk website.

[Waves2 in reply to Retallack]

Thank you. Will follow up.

[Daisymay]

I live in Mid Cornwall and do have a rheumatologist. They are there so insist. I've had one since the start of PMR about 5 or 6 years ago and seen them quite a few times with gaps when I felt that I was stable. I had an appointment letter arrive a couple of weeks ago but this is a phone check up due to the current situation whereas it is normally face to face. Seen one or two different ones but this one is Dr Jenkinson. Not sure why they won't refer you. Speak to your GP again I think.

[Waves2 in reply to Daisymay]

I will thank you. I know there is a team here in Cornwall as the department details are listed online. The mystery remains what the criteria is to see one. A couple of gps who I have seen were obviously surprised themselves that they couldn't refer me.

[Pollyanna16 in reply to Waves2]

I am sorry I missed your 1st post. I find this appalling! I have no idea why you wouldn’t be referred to a rheumatologist here in Cornwall. But I am no expert on the current guidelines. I am also a member of the Truro Meet Up group (& have PMR) & as far as I recall we have all had access to a specialist at some point. I see Dr Endean about twice a year & due to see her this month however no letter so far, unsurprisingly. However I did have a Dexa Scan, as planned, last month so some things are happening. We are planning a Zoom meeting in early December it might be useful to “meet” us.

[Waves2]

Thank you.

[Fran_Benson Partner]

Hi Waves2, you should see a specialist - it's part of the new guidelines.

Are you a member of the charity? If so, we provided a lot of information about this in the spring edition. If you're not a member or don't have your copy, message me with your details and I can send you a copy.

Fran

[Waves2]

I am a member and will use this info to talk to my gp. I had skimmed through before so now studying in greater detail. I doubt if she has had time to absorb it all. It is so helpful to have this. Thanks.

[Pollyanna16]

Hi, I think you may have received this information already but others might be interested. I gather our Cornish GPs are experiencing long delays in getting referrals. As much as 23 weeks for routine referrals. However, we were advised that you can ring the rheumatologist's secretary to ascertain the situation & you may be able to speak to a consultant remotely. It is NOT policy to not refer patients to rheumatology in Cornwall, apparently the delay is all down to Covid. I agree with former remarks that if you have GCA surely you must be monitored by a Consultant.

[Waves2]

Thanks. I am seeing my gp next week so will be raising this with her. I can quite understand there is pressure on appointments generally here and especially in the current circumstances. I am still intrigued by why some Cornish patients are seen regularly and others are unable to.