First rheumatology appointment, advice please

Slosh

Hi
My GP has referred me to Rheumatology after some blood tests showed inflammation. He thought it could be polymilegia rheumatica (excuse spelling), but said it was not straightforward as I do not have all the classic symptoms and as I have an on-going neck problem which also causes pain in my shoulders /arms/hands.
My appointment has come though for about 3 weeks time, I will ask for pocket duties nearer the time, but would like advice on what to expect, what to ask etc. Would it be useful for me to put together a time-line of key dates ?

Thanks.

dreamdaisy

Hello, I am pleased to hear that you have an appointment, this sounds like a plan if only to rule things out. I think doing a brief timeline of the key events is a very good idea plus the diary that we usually recommend. I recall my first rheumatology appointment and it didn't go well (it ran along the lines of you don't have arthritis, go away). The second one went far better in that I was sent for proper blood tests and Xrays and then came the grudging admission that yes, I belong to them rather than orthopaedics (where they had been trying to palm me off )

Polymyalgia rheumatica is one-size-fits-all term in that it covers a large range of possible conditions; labels only mean so much but they can mean a great deal to us. Let us know nearer the time when you are going and count me in for support. DD

Slosh

Thank you DD.

barbara12

Slosh I had this mentioned at my last rheumy appointment..but they still haven't made up there minds..very complex this arthritis...write down anything you can think of even going back to your teens are earlier..and take a list of any questions ..and good luck hope you get some answers

Slosh

Thank you. Gosh, back to my teens, thats a long way back, I hadn't considered that and I did have whooping cough when I was 18, Glandular fever when I was 21, and had problem pregnancies, I lost my first two babies through premature still birth and then spent 3 1/2 months in hospital before successfully having my daughter, I hadn't even thought about all that!

I am feeling better emotionally knowing I have the appointment and that I haven't had to wait long, I was anxious because with my orths referral the referral was made mid August but I didn't get an appointment until the end of January.

barbara12

Slosh there you go a lot of these diseases come form our teens..I am 66 and my rheumy was very interested in fact it was him that asked about my childhood I nearly fell off the chair. .and I had scarlet fever..I do hope you get a good one that will listen it makes such a difference..

Slosh

It would never have occurred to me to think about childhood illnesses and the like, it shouldn't really surprise me, many years ago I taught deaf-blind and multiply handicapped children, many of whom were born with disabilities as a result of the mother having rubella. They had found out that very often their behaviour and/or difficulties got worse in adolescence as the virus lay dormant until then but was often reactivated then in their nervous system.

Bookworm33

Hello there. I was browsing and noticed your post, and felt I should add that Polymyalgia Rheumatica is in fact an auto immune condition, and currently the only successful treatment is prednisolone. In fact a dramatic, positive response to prednisolone is generally used to confirm diagnosis. It normally affects the large muscles around the pelvic area, buttocks and thighs, and/or the upper arms and shoulders and neck. Despite what the text books suggest, it can and frequently does affect people under the age of 70. There are many sufferers well below that age. You will also find that many PMR sufferers have joint pain, particularly in the small joints, like hands, feet.

I hope your rheumatology appointment goes well. If you are diagnosed with PMR, may I suggest you look online for PMR forums. There are several, and will be able to offer much more in-depth advice and knowledge than the AC forum. No offence meant, but although the support offered here might be invaluable, PMR isn't always widely understood, and the dosage and withdrawal timescale of prednisolone is absolutely key to helping ensure a full recovery, and reduce the chance of a relapse. Even many GPs aren't aware of how this should be dealt with. But with the right dosage, and a slow and steady reduction at the right time, the outlook is very good. But arm yourself with as much information as possible, which you will find from other PMR patients. Good luck.

Slosh

Thanks, my GP was unsure if this is the correct diagnosis as I don't have all the classic symptoms /indicators and have the complication of already having cervical spondylosis.
He is very thorough and rightly cautious about putting in place either the wrong treatment or something that would complicate the correct diagnosis as he wanted me to see a specialist. He was clear it was an auto-immune condition.

I haven't looked into it yet, my appointment is next Monday morning so I am keeping a pain diary as suggested this week, and will finish putting together a chronology of how things have developed over the past three years.

Hopefully next week I will have a clearer picture.

Thanks for that valuable advice and information.

stickywicket

Slosh, I don't know how I've missed this post :oops: other than being a tad busy with packing for removing and possibly glancing at the title and realising I couldn't remember so far back :roll: Now that I've found it I've little to add but I can endorse the others' suggestions re former illnesses. I was diagnosed at 15 but, retrospectively, they think it probably all kicked off when I had about 3 months of what they then diagnosed as 'rheumatic fever' when I was 11. Do your homework And good luck.

Slosh

No apologies needed Sticky, I will be putting in a request for pocket duties today, I have just thought the fact that I have always bruised easily might be worth mentioning, especially as at the moment I keep getting small unexplained bruises on my arms and legs. I have two on each arm at present so took photos of them today.

tkachev

Is your appointment tomorrow Slosh? I'm glad you didn't have to wait too long.

I also had Scarlet Fever as a child. and I know of others who also had SF and now have RA. I know we get ticked off for trying to make any connections but thought it worth mentioning


Elizabeth x

Slosh

Yes it is, I must admit I was pleased and surprised it came through so quicky. I've never had scarlet fever, and as my blood text for rheumatoid factors came back normal I'm assuming that rules out RA.
I think I'm ready, pain diary done, list of childhood illnesses etc, symptoms, questions etc.

I've also been getting quite a few small bruises on my arms so I have taken some photos.

Megrose2

I hope it goes well for you tomorrow, Slosh.

Meg

stickywicket

Good luck, Slosh. Thinking of you.