Intractable flare

[Seraphina56]

I’ve written about this a few weeks ago and got advice to increase pred whic I’ve done with GP but it hasn’t helped. I was on 10 and reduced over a month to 9 and felt ill so upped it to 14 for a week, then 15 a few days then 18 for 4 days. Thought I was starting to feel better so went to 15 but just got worse and kind I plateaued. Another GP told me to take 20 for a week and this is day 7 and I can’t honestly say it has made a difference. Still very fatigued, can’t do much. Shuffling around. Currently sitting on yet another bench while hubby goes for the car as I can’t make it up a hill. Dopey and drunk. Stiff across hips. Painful on moving. Getting desperate now. Could it be the steroids causing this? Any ideas.

Should add that ESR was 2 and CP -2

[PMRpro Ambassador]

There is almost certainly something else going on and you need to be referred to a rheumatologist if the GP can't identify anything obvious. It is possible it could be GCA or LVV developing - and in that case 20mg might not be enough even though it should be for PMR. But it is very suspicious.

[Seraphina56 in reply to PMRpro]

Thank you. I was referred to a rheumatologist but the wait is four months and Dr says there’s no way to see anyone quicker. I’ll have another try on Monday.

[Seraphina56 in reply to Seraphina56]

I say Monday because we’re in our caravan in Pembrokeshire at the moment and going home tomorrow. Not been much of a holiday though. I thought I’d be running round like a spring chicken after a few days on 20mg. Maybe I’ll try the Dr tomorrow from here. Thanks again.

[PMRpro Ambassador in reply to Seraphina56]

Well there is - he requests an emergency appointment for ?GCA

Ask if he would say that to a patient who might be having a stroke ot heart attack?

[Seraphina56 in reply to PMRpro]

Hi. I rang GP this morning and they wanted yet another dr to ring me back. I objected and said I’d already had three drs involved and didn’t want a fourth. So could the one who prescribed the 20mg, dr Thorne, please ring me back. Eventually agreed and he rang at 5pm.

He doesn’t think it can be GCA because my blood tests are normal and no visual or headache probs. He thought if it was PMR it would have responded to 20 pred. I pointed out that 2 other doctors thought it was the PMR but that I hadn’t been seen by any GP. He said it wasn’t necessary. I asked him outright if I could come to the surgery and eventually he agreed to see me Monday afternoon.

He still insists there is absolutely no chance of getting an Appt with a rheumatologist. No appts. Not opening letters etc. I said I’d be willing to go anywhere. He said it wouldn’t make any difference.

He wanted to reduce the pred and I said I was worried that although it might not be getting rid of the symptoms, it might be just holding back the GCA. So we agreed I’d carry on this dose till Monday. Not sure if I was right in that. So that’s where I am now.

He’s wondering if it’s something completely different. How he would find out without actually assessing and examining me, God only knows.

[PMRpro Ambassador in reply to Seraphina56]

ncbi.nlm.nih.gov/pmc/articl....

ncbi.nlm.nih.gov/pmc/articl...

ard.bmj.com/content/77/Supp...

Normal range blood markers do NOT rule out GCA.

[Seraphina56 in reply to PMRpro]

If things carry on and I don’t get any better we’ll pay privately. So if anyone can recommend a Rheumatologist in the Midlands with a PMR reputation, please let me know.

[diana1998 in reply to Seraphina56]

If you go privately, you should get an appt quickly

[SheffieldJane]

Something about the way your condition was improving and then stalled with shingles, then really didn’t pick up, reminds me of my own patterns. On a hunch my Rheumatologist ordered a series of tests eg PET scan, Ultrasound Scan. Aorta Scan etc. She did actually find the tell tale halo sign in the peripheral arteries, in my armpit, that can be accessed by the ultrasound scan. This was the way I obtained my GCA diagnosis even though I had no jaw claudication, a headache that seemed less severe than others experienced, aching eyes,and a lot of fatigue. Not really typical but I felt quite ill. In my view, you would benefit from a good, interested, informed Rheumatologist. Just incase you have Large Cell Arteritis elsewhere. Forgive my sketchy knowledge but I think it is time to bring in an expert.

[Seraphina56 in reply to SheffieldJane]

Thanks. See my reply above. I’ll have a go in another Trust I think. Or maybe the GP think again about a quicker route.

[powerwalk in reply to Seraphina56]

Let us know how you get on! Good luck.

[Louisa1840]

Hi Seraphina,

I remember about 18 months in with PMR (now over 3 years) feeling that pred was no longer working. My rheumy suggested Meloxicam ( trade names could be Movalis/Mobic) either way a slow release anti-inflammatory. This was to treat my underlying inflammatory arthritis. This has made a huge difference to me. Just a thought?

[Jackoh]

Sorry you’re having all these problems and that it’s a real effort to get someone to see you. Where are all these GPs? What are they doing? Do let us know how you get on on Monday. I’m in the Midlands but I do travel to see Dr Hughes in Chertsey. I did originally go private but now I am seeing him under the NHS.

[Seraphina56 in reply to Jackoh]

Hi. I would go anywhere but have family in Liverpool, London and Worthing where I could stay. Why did you go to Chertsey? Can you recommend him? Thank you.

[Jackoh]

Dr Rob Hughes had been highly recommended on this site as a Consultant Rheumatologist who had a special interest in GCAPMR. I initially went to see him privately because I was having severe head pain after having PMR for about a year. My GP was not of the opinion that I was developing GCA as the new, extremely painful headaches ( like hot metal rods boring into the side of the head) were not in the temporal area. Also my bloods were normal, having already been on Pred for a year, and my bloods never being raised except for one occasion when I had had an infection. I therefore went to see him for a second opinion. He concluded I had cranial GCA, and wrote and informed my GP.

[PMRnewbie2017]

I have seen Dr Barami at Kettering. He has a special interest in GCA and PMR. I don't know if he sees private patients though. His NHS list is rammed and I haven't seen him since last Nov despite him saying he wants to see me every four months because of my ?GCA.