Diagnosis About Turn?

[Hopeful66]

Evening all, I joined this group 3 weeks ago - quite relieved to have been diagnosed - finally! The 'symptoms' literature that the GP had given me was absolutely spot on, as was everything I read in Kate Gilberts book - even my husband was gob smacked that everything seemed to fit.

But, as of yesterday and copious blood tests within the last three weeks, I have been told to completely withdraw from the 30mg of Pred' that I am currently taking, dropping 10mg straight away, then 5mg every two days - making an 8 day complete withdrawal. She has referred me to Rheumatology - Carmarthen.

The reason - the GP is not wholly confident that the diagnosis was correct now - despite taking the medication I am still suffering lower back pain, pain in the larger joints, (shoulders/hips), which is relieved by mid day, leaving me with residual all over stiffness and aches for the remainder of the time. One evening last week I was unable to stand at the hob and cook a stir fry - my back, thighs, upper torso, arms were screaming to give up with the spatula! This, continued to three days of neck pain/ache and a stiff jaw, like the ache you get from laughing too much, I felt that I was aware of every tooth in my mouth :/

My blood tests have thrown up a range of results;

The inflammation markers initially were extremely high, within 5 days of taking Pred' they had dropped to normal limits.

White blood cells have increased significantly in the last two weeks and kidney/liver function have been slightly affected - she thinks by the steroids

I am a type 2 Diabetic following an extremely strict diet, in the hope of nullifying some of the 'weight gain/sugar spike' effects of the steroids - I've lost 11lb in the three weeks, so not all bad - I cannot exercise due to not having complete range of movement and pain, so walking, pottering around the home is as good as it gets just now.

I was wondering whether any of this sounded familiar to anyone?

For further information, my Mother has Ankylosing Spondylitis, but I was tested for the gene some 30 years ago - negative result.

[PMRpro Ambassador]

What you describe could apply to me - and the reason for my "not entirely gone away with pred or Actemra" is myofascial pain syndrome which can exist in its own right but is very often a part of PMR. One top PMR group in Australia consider it an integral part of PMR

jrheum.org/content/46/12/1552

It is hardly surprising the inflammatory markers have dropped with a relatively high dose for PMR - 15-25 is the usual range for starting dose, 30 is used exceptionally when the lower doses don't achieve a good result.

Being negative for the HLA-B27 gene doesn't mean it isn't AS - it isn't particularly reliable.

I fear though it is a wait and see prescription!!!!

[Hopeful66 in reply to PMRpro]

Thank you for that, very informative.

I feel that this is going to be a bit of a roller coaster ride for the next few weeks - I'm not sure what the current waiting times are for Rheumatology here in Carmarthenshire, Wales, but suspect that with no current treatment I'll be experiencing some flare ups that will necessitate going private in the hope of a speedy firm diagnosis of something! (and that will wave goodbye to the 'if something happens to the boiler' fund :/)

I'm sure that I'm not alone in this, a journey experienced by many on here. Whether I actually have PMR or not, the steroids did take away the bulk of the pain I had been experiencing and that was better than nothing.

Still more blood tests today - maybe something will enlighten the experts, but as you said it's a wait and see for me just now, thank you again for the literature and your own experience, it is something that I'll be able to bring up with the Dr

[PMRpro Ambassador in reply to Hopeful66]

My last info about rheumatology in your neck of the woods was a few years ago but it amounted to "doesn't exist"!! You could try contacting Wendy on the Lupus forum who has done a lot of work on it with MPs and the health services to try to improve services and she may well have some advice for you - she is in Pembrokeshire

healthunlocked.com/user/Wen...

Tell her I suggested you contact her.

[Hopeful66 in reply to PMRpro]

Thank you!

[Hopeful66 in reply to PMRpro]

Prince Phillip in Carmarthenshire - but there is a Private Consultant Rheumatologist, Dr Martin Bevan at Werndale Hospital - he seems to cover PMR/GCA

[PMRpro Ambassador in reply to Hopeful66]

I bet Wendy knows if they are worth it ...

[Hopeful66 in reply to PMRpro]

I've messaged, thank you for the advice

[Hollybee21 in reply to Hopeful66]

Hi Hopeful, I live in Swansea and Dr Bevan is my Consultant, he works out of Singleton Hospital and I believe Neath/Port Talbot. He has been very helpful when I have seen him. He has a great Rheumatology Nurse called Laura Eales who has been working with me through reducing my Pred with the help of Methotrexate injections. Neither of them has rushed me through reducing Pred and I have had PMR for 14 years. Finally seeing the light at the end of a long tunnel. Down to 4 mg for the first time (very excited). Good luck,

[Hopeful66 in reply to Hollybee21]

Thank you for that, after finding out that the NHS list is 7 Months+ I have secured an appointment in March '24! So in the meantime I'm looking for another Consultant?

Many thanks again

[Zebedee44 in reply to Hopeful66]

I can’t remember which practice referred me to Rheumatologist when I lived in that part of Wales in 2016 but I was eventually seen at Withybush Hospital in Haverfordwest by a locum rheumatologist on a Sunday, probably trying to get through a backlog of patients. He prescribed gabapentin and referred me for an MRI which took place in Carmarthen, revealing a dermoid cyst on my ovary which necessitated a rapid referral to Gynae and a hysterectomy.

During this time my GP just kept increasing the gabapentin, then pregabalin, then fentanyl patches, none of which took the pain and stiffness away. Even while an inpatient nobody took any notice of my pain or inability to move, even when I crawled on my hands and knees to the toilet. FINALLY blood tests revealed the raised inflammatory markers and hey presto, a huge starting dose of 50mg prednisolone began to improve the situation. But it wasn’t instantaneous at all!

PMR is notoriously difficult to confirm and quite often the pred conceals any other pain conditions that exist alongside the classic PMR symptoms. This forum contains many reports of wrong diagnosis and Rhematologists who have their own ideas on the subject, none of which is very helpful. You soon learn to be your own best advocate of YOUR OWN condition and you must also have your own best interests at heart by looking after yourself, not expecting too much too soon, and pacing yourself. It takes a while to learn how to manage the symptoms with medication and lifestyle changes.

Kate Gilbert’s book is brilliant. Note that she found paracetamol to be a useful addition to managing the pain. I also found a hot bath in the morning to be the best way to loosen up my stiff body, although it was extremely difficult getting in and out safely. Also I took to dividing my daily dose in order to be mobile in the morning and continue my outdoor life with my ponies. But it was almost a year before I had recovered physically and mentally from the 8 months before diagnosis.

It’s such early days for you and there may well be more going on than just PMR, so I hope you get some support from this wonderful group of understanding people and can soon get your life back on track. I send you my very best wishes, Chrissie

[DorsetLady PMRGCAuk volunteer in reply to Zebedee44]

Kate Gilbert’s book is brilliant. Note that she found paracetamol to be a useful addition to managing the pain

Needs a bit of clarification there - it relates to tapering [don’t think she used a slow tapering plan]… and she does remind people not to use it long term, and you need to check with doctor particularly if you have/ever have had liver, kidney or heart issues.

[Hopeful66 in reply to Zebedee44]

I've only been on Pred' for 3 weeks, this week my doctor has withdrawn it as, I am still experiencing stiffness and residual aches all day with pain in the early evening - She is not confident moving forward without the Rheumatologist seeing me - so upshot, i've spent nearly two years with this, last month was 'diagnosed', this month 'undiagnosed' if that's even a word :/

And as Dorset Lady mentioned below, my blood tests have confirmed some changes to liver & kidney function and white cells are continuing to rise - so somethings going on - it's a lottery right now :/

[Zebedee44 in reply to Hopeful66]

I’m sorry it’s all such a mystery right now for you, hope you get some answers soon. Chrissie

[Hopeful66 in reply to Zebedee44]

Thank you Chrissie, much appreciated - like everyone else, just want to move forward and get some sort of treatment - whatever the diagnosis

[Joan-E-D]

Swansea has a rheumatology department, but I don't know how long their waiting list is. I used it, but I live in Swansea.

[Hopeful66 in reply to Joan-E-D]

Hi Joan, thank you - apparently it's Prince Phillip Hosp. for Carmarthenshire.