Any advice for first Rheumatology Appointment please?

[Pippah45]

It is a little over 4 weeks ago that the panic button was hit and I was suspected of having GCA - whacked on 60 prednisolone and that was swiftly followed by Doxozorsin for the sky rocketing BP. I have read the book and just about everything I can find to read - discussed with my younger brother who has GCA and my older sister PMR last year GCA this year! No one was doing anything fast around Easter so nothing happened. With the help of this forum and my brother I made the decision that last week would be too late for a definitive answer to a biopsy because of the preds so I cancelled it much to the disgust of one of the GPs. Another one said it was my body! My CPR was 5.6 which is .6 above the range that lab do - and Erythrocytes were in range. My CPR was 5.6 in February 2018 so no change there. CPR went down to 2.2 on first few days of preds. I have Hashimoto's Auto Immune thyroiditis so inflammation is part of the deal. Having had no luck with Levothyroxine I self treat with Natural Dessicated Thyroid and am monitored by the GPs.

I did however have Jaw ache for 24 hours followed by a 14 day headache which is why the process began. However I did overdo things physically before that started but it wasn't worth risking doing nothing - or so it seemed. Let's say the start of the journey was pretty horrendous but then you will all know that. I have reduced the preds down to 40 with doctor's blessing and am now on 20 without her blessing and feeling human again! Preds and cranial osteopath put paid to the headaches so no symptoms now.

Any hints as to how to proceed with the Rheumy (NHS offered me 24th July so I have decided I need some answers). Am I likely to get any answers do you think - I have seen some people have been to several Rheumatologist and still not got the answers? I often prefer to see male specialists but my gut is feeling good about this one for some reason. Thank you very much.

[Soraya_PMR]

Well hopefully your GP will have written a decent account with the referral. (My GP wrote exactly one sentence apparently!) So just in case, a chronology of your symptoms, and definitely the family history. Your response to pred. The rheumi should ask questions to fill in any gaps and will likely order tests if they feel there’s a differential diagnosis worth investigating. Good luck.

[Pippah45 in reply to Soraya_PMR]

Thank you Soraya - I think the word is "hopefully" and yes good idea I am going to collate my blood test results - particularly the private ones that aren't on my records. I am not in the mood to leave anything to "chance" at the moment.

[Soraya_PMR in reply to Pippah45]

Yes, definitely any extra blood test results.

[Hidden]

As soroya says they will do bloods for a range of conditions. I had xrays. Family history of autoimmune conditions. Unlike my gp(s Rheumy actually touched me...in a good way. He just did strength tests and mobility of arms etc.

[Pippah45 in reply to Hidden]

Thanks for the reply - one GP did feel round my scalp - it was tender but I suspect not as typical GCA hurts. I have had neck issues for donkeys years and tenderness but nothing serious.

[patriciawhite]

Make notes and take them with you ,I forget what I wanted to ask when I am sat there. My Rheumy dosn't mind she says its better for her because she gets the information from me that she needs .

[Pippah45]

Thank you Patricia I am going to sit in the sun and make an impressive folder!

[PMRpro Ambassador in reply to Pippah45]

But be sure you also have a summary bullet point list that can be scanned in seconds ...

[Pippah45]

Thank you everyone for the tips - I will add one of my own particularly for those of you who are new - KEEP your Diary marked with things that have happened! I have been struggling to get the dates right - although hopefully the Rheumy will have the records BUT we have all heard of records going missing!

[Pippah45]

One other thing I remembered was back in September I had a very painful session of gout which I believe comes under rheumatology - any comments anyone?

[Pippah45]

I had the appointment this afternoon - and while waiting - Rheumy was running late - I found two reviews online for her - one good one bad! Anyway she was brilliant she listened and when I told her a long history that I thought was relevant to whether this was GCA or not - and then said I had done my research as thoroughly as possible. She asked what dose I was on and I admitted to dropping further than the GP had said. She asked if anyone had ever told me I was a sensible woman - because that is what she thought! After a good chat and then thorough examination she pronounced me GCA free which was a HUGE relief after 4 weeks of uncertainty.

I realise I am extremely lucky to have escaped and I am very grateful for all the help received on this lovely forum. I wish all of you the best of luck and hope you will continue to support each other. Thank you very much.