I will try to make it succinct but unlikely. Apologies.I saw my consultant 22/01 after 6 month and 6 weeks trying to get her to see me worried about my symptoms . Was fobbed off. I had horrendous diverticulitis on 22 nd and unable to stand/ walk so that impaired on my ability to take in what was said.
Consultant said she was worried about me
a) my inflammatory markers having been <1 for years were 14 early Dec, 46 in early Jan and 46 again mid Jan. ( blood test after appointment 41)started this journey at 58, 4 years ago
b) I have been on steroids for almost 4 years and should be off them. She proposed methotrexate. Said I didn’t want to take this. She stated this was a marvellous drug and has patients taking it for 25 years. No problem she stated
She believes I have LVV. I need a PET scan ASAP. I have had pressure in my head and jaw issues all since mid December. I increased my pred from 3 to 8 now 7 off my own bat. Informed her after doing this.For a PET scan I need to be under 5 but no suggestions as to how to reduce .
Contacted the rheumatology helpline who got back 48 hours later. They were trying to find out details of my appointment nothing written up so far. Would get back re reducing. Heard nothing so far for a couple of days.
Have called in BUPA membership for a second opinion. Only one rheumy locally, East Midlands, who does private work but need a GP referral. I now find ( understandably) that private referrals take up to 28 days for a letter.
I feel abandoned but wonder if I am bring impatient . Any suggestions, advice or reassurance welcome
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Noraflorence
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Does BUPA cover you for anyone or are there listed names? Would/could you travel further afield? Like Chertsey to Rod Hughes?
Diverticulitis will increase your ESR.
"I have been on steroids for almost 4 years and should be off them" - obviously of the "PMR spontaneously and magically disappears after 2 years" persuasion. Rubbish, it is a MYTH.
"She stated this was a marvellous drug and has patients taking it for 25 years" - for RA. Not PMR. And it isn't always marvellous - a LOT of patients don't tolerate it. However, to be fair, you have to try it to find out if you can and if it works for you - it DOES work brilliantly for some patients.
The only way to reduce - and it won't be that hard if you have been at 3mg for a while - is to stick at the 5mg they want and tolerate the pain in the meantime. And it will be worth it because you will get a good answer as to where on the spectrum of PMR/LVV/GCA you are from a PET-CT.
From my point of view, I think you probably are being a bit impatient. Yes, I do understand how rubbish you feel - I had PMR without anything to manage the pain for 5 years. It is rough, but we are strong women. A PET-CT is the best you will get in terms of diagnosis - it shows all the options unlike anything else. If you can grit your teeth and have it - that really is the best option. Even better than seeing a better rheumy privately unless BUPA will also pay for the PET-CT,
Thank you PMR pro. I will see if I can get to Chertsey I am not too sure how BUPA works out. But again I can investigate . It is good to have a calm voice of reason and knowledge from you. I am one of life’s anxious panikers and have little faith in the consultant rightly or wrongly .Apologies for being impatient. I just heard LVV and reason went out of the window as I know little about it. Saw aneurysm as one possiblity which took me back to my husband dying traumatically of this a few years ago. From what you said going from 7 to 5 should be ok and done in stages or one jump?. I was on 3 mg for only a few weeks but fine on 3.5 for a while.
I'm not surprised you panicked with that history - but I discussed aneurysms with Prof Quick the other week and she assured me that thesy are long term problems, not something that is likely to happen in a matter of a month or two. I'm not particularly impressed by your rheumy myself but since she IS sending you for a PET-CT, she is doing the right thing, The PET-CT will see that sort of thing too.
How long have you been at 7mg? Up to 2 weeks you can drop back from even more than that but 2mg shouldn't be a problem.
I have been at 7 mg for about 4 weeks having been at 8 for 2 weeks before that up from 3. I had hoped for some guidance from rheumys. What are your thoughts ?Yes positive about PET scan. Shall try to hang onto that
5mg dose before you can have a PET-CT scan because of steroids? i found this at acrabstracts.org just posting the results. again im just asking about the median dose used in this study?
Results: We evaluated 75 patients, 27 men and 48 women (mean age ± SD: 68.2 ± 10.7 years). PET/CT was performed in 14 steroid-naïve PMR patients (18.7%) and 61 steroid-resistant PMR patients (81.3%). Patients under steroid treatment had received a median dose of Prednisone of 10.0 [5.0-15.0] mg/day during 9.0 [2.0-22.0] months. Vascular 18F-FDG uptake was more frequently detected in steroid-naïve patients. In regard with musculoskeletal 18F-FDG uptake, no statistically significant differences were seen between both groups (TABLE).
Conclusion: Vascular 18F-FDG uptake detection was higher in PMR patients with LVV suspicion who had never received GC. However, PET/CT was also useful to detect vascular involvement in most of the patients under a long-term medium-dose steroid treatment
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Totally desperate and abandoned (sorry- this is a long rant)
advice please
Fast taper and struggling 
Now on the LVV journey too
