Hi, been a while since I have posted. Diagnosed in March 2016 (for second time, first time was 9 years ago and I didn't take steroids), started on 30mg of Pred and not got lower than 14mg at any point since.
Saw my gp today who is wonderful but is now wanting me to see a rheumatologist. My inflammatory markers have been on the up even though I have been on 15mg Pred for the last three months. I have felt better than I do at the moment, not too much pain but I do have some (never been pain free) usually but fatigue, blurred vision, hot sweats and occassional diffuse headaches, nothing too major. I have been putting it down to the recent hot humid weather.
However gp wants to refer. So my question is to whom. We talked about Prof Dasgupta at Southend or the team at Addenbrookes. He was happy to refer to where I wanted but said there was someone more local to me who specialised in PMR/GCA. I am in Chelmsford in Essex so does anyone know of a good Rheumatologist nearer to me? I don't know who to see, to be honest, the idea of going to see anyone distresses me. Any advice from the "aunties and uncles" with better knowledge than me would be appreciated.
In the meantime I have agreed to gp back up to 30mg for a week then 25mg for the next week then another blood test. This regimen did work before bring my ESR down to 18 last time. Its at 50 at the moment which is high for me. CRP is 21 usually 7 not really been raised up much. These figures are low but as I have been monitored for some 10 years we do know my "normals". Also my white blood cell count has gone up which gp said might be an infection but I don't appear to have any symptoms of any infections. I do have osteo arthris in knees, spine and shoulders so did point out that the ESR levels could be that but he didn't think so.
Its like some bizarre game of snakes and ladders over the last 15 months. I am keeping a close watch on symptoms for GCA and optometrist has been monitoring too, n
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S4ndy
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PMR is just the name given to the symptoms - it can be caused by a range of things and your GP himself should know what to test as a basis for that. Has he done this lot for example?
Nah - though the husband would dispute it. His memory is appalling - occasionally to the point of being scary. But he always did live in his only little world
Thank you. My GP has done all the tests outlined. I am so lucky to have had another great gp replace my wonderful gp who retired. I think he is a bit stumped as for three months despite raising my dose I haven't had relief of symptoms and the markers bear that out. Quite cleverly he questions me on how my symptoms are before he reveals my test results to me.
I am thankful for this forum and read a lot of the posts which have been very valuable in helping me to cope. Especially yours as you really know your stuff. Much appreciated xxx
Hi S4ndy, I am in Battlesbridge, just up the road from you!
My GP referred me to Broomfield but after six weeks when I was still waiting for an appointment, was in so much agony and freaked by what was happening to me, i.e. significant and rapid speed of deterioration I returned to my GP asking if he could recommend private Rheumy to speed up process. I do not have health insurance so it was only ever my intention to have an initial private consultation to see if I could get to help quicker.
GP recommended Springfield hospital, Chelmsford, but couldn't name a specific consultant. When I rang them I told receptionist I was looking for a Rhuemy with links to Broomfield. She offered me an appointment for the same afternoon with Dr S Peddasomayajula ( known as Dr Mani for short) quoting £200 estimate.
I have only seen Dr Mani for initial consultation privately. The outcome......
1. A confident and immediate diagnosis following reading of recent and past history of all test results from 2004 (GP printed these for me to take to the appointment) my recount of events, symptoms and desperation that brought me to his doorstep and a thorough physical assessment. The physical included examination and ruling out of lumps and bumps, as well as mobility 'tests'. He really listened, through his questioning led me to provide info he needed, and had an 'excellent bedside manner!
2 Blood tests arranged on NHS at Broomfield for the next working day as most recent did not include any results at all against one prime PRM indicator. The other indicator often used to support PMR diagnosis was within norm range. When he told me this he said that this did not mean I didn't have PMR, indicating that he was looking at totally of symptoms., not basing his diagnosis on pure test result. This made me think he knew what he was talking about.
3. Amendment to 'standby prescription' for 30mgs daily of pred that GP had given me to initial dose of 15mgs ( as this is the level that Rhyeumy believes will substantiate diagnosis of PMR or not)
4. A request from Rheumy to phone his private secretary to report impact of meds on symptoms three days after starting on pred.
5. An appointment at the next PMR clinic ( at which he is leading consultant) at Broomfield on NHS. Specific PMR clinics held two days each month.
6. As I smoke he is also arranging a chest X-ray for me on NHS
I went to him on a Saturday, on the Monday at 9.30am I had a telephone call from him personally, checking I would be at Broomfield at 3.00pm for blood test and also checking I had fully understood his instructions re the rest of the week.
I call that outstanding service. Obviously early stages but my gut reaction is that he knows his stuff and will listen. His talk indicated he fully understood how personalised the PMR journey is and that it is me that will guide process from here on in rather than a text book!
Given your symptoms of blurred vision and headaches, I definitely think a 'fast track' appointment with Dr Mani would be advisable. Alternatively if you can afford the wait, a referral to him at Broomfield.
Obviously I am only making a judgement based on one, albeit quite extensive, appointment but I am not usually far wrong in my gut reaction. So far very good.
Hi Marilyn, Just read your post above and had to add my voice to say that not long after I was diagnosed in 2014 I was referred by my GP to Dr. Mani (didn't know he was called that for short, much easier!) at Broomfield hospital. I agree, he has a charming manner and is very sympathetic and understanding each time my appointment comes round. I just wish it was more often than six monthly, but that's NHS so can't expect it to be more frequent. I am sure if you, S4NDY, get a referral to Dr. Mani you will be well looked after.
Thanks Lin-Lou for endorsing recommendation as I am very new to this 'game' and just working on my gut reaction . You are far better placed to recommend Dr Mani on a longer term basis. 🙂
Thank you so much. I was reading about Dr Mani earlier. I will be asking for a referral to him as he is both at Springfield and Bromfield both of which are less than 10 mins drive from me.
This forum is wonderful, even my gp couldn't remember his name but then the unshortened version is quite a mouthful.
Forgot to say.....when I received invoice it was £170 not £200. So Looking at the positive I saved myself 30 quid!!!!! I do love a bargain!!!!! Shame he doesn't offer 'Buy one, get one free! 🙂🙂🙂🙂
Glad to see you've got info from Marilyn. Hopefully you can get referral and quick appointment.
Just for info. -18 months after first pains started I was finally diagnosed with GCA. Reading at that time - ESR 58, CRP 26.5 - so not that much different from yours.
Now completely off Pred, 10 months, last ESR reading (about a month ago) - 19. I also have OA in shoulder, knee - so agree with your GP that it's probably not that raising your readings.
Thank you. Having read what your markers were I can see why my GP is worried. I am to call him tomorrow with the name of the consultant I wish to see. In the meantime raising the Pred back to 30mg. He is keeping a close watch on me and told me again all the signs of GCA with a "get yourself to A &E" warning if you get worse headaches or jaw pain or sight disturbances. Thank you for your advice, again so grateful that you take the time to help us all xxx
Your GP has probably had the training from the Southend "Fast Track" initiative which Dasgupta started. It is proven that when GCA is recognised by GPs and the patient is seen within a short time the outcomes are improved (DUH - they needed a study to work that out?). PMRGCAUK has been pushing for a few years for this to be rolled out across the NHS - but it isn't always financially viable. It was tried up north - and didn't work because there simply weren't enough patients to justify it and biopsy slots were being wasted. But it is gaining momentum.
Which is why GPs need to learn to identify potential patients and to send them to the hospital WITH A PHONE CALL FIRST. That has worked for years in Scotland without an official fast-track.
Hey S4andy, just received PMR clinic appointment at Broomfield on 18th July. So recommended Rheumy is following through talk with action. Thought I'd let you know.👍👍👍👍👍👍👍
Hi Marilyn, no appointment yet. I have been on 24mg this week and get my bloods done again on weds. My gp is on his hols so won't see him until the week after. For the first time in ages I am having pmr pain free days so am hoping the higher dose is lowering the inflammation. Its having terrible effects on my tum again though its swings and roundabouts. Hope you are doing ok.
Hi S4ndy. Pleased current dosage giving some relief. Hopefully tummy will adjust over time.
I have first Rheumy appt at Broomfield tomorrow. I chased my appt by ringing Rheumy's secretary Chris. Will keep you posted as to my 'experience' tomorrow. I feel fine so am hoping no changes in meds as going on first cruise in two weeks and better the devil you know applies. Will need to go to appt early to find where I need to be. Broomfield reminds me of duty free airport lounge - seems just as busy as one too!
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Having a memory like an elephant helps...
its swings and roundabouts. Hope you are doing ok. 
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