first appointments in secondary care in Bristol- what to expect

[SomersetJB]

I was diagnosed with PMR 4 months ago and 3 weeks ago diagnosed with GCA ( symptoms- jaw claudication temple tenderness and transient double vision). I was seen at Bristol Eye Hospital where I received prompt and excellent care ( seen the same day and ultrasound the following day) and thankfully had no signs of eye damage . I’m on holiday on the other side of the world and return to the UK this coming weekend two days before a series of appointments start. Ophthalmic Neurology on Monday at the eye hospital, my first rheumatology appointment at Bristol Royal Infirmary on Wednesday and then am scheduled to have an upper GI endoscopy on Thursday ( GP doesn’t want to assume it’s the PMR causing my anaemia). Any tips on what to expect at any of these ophthalmic/ rheumatology related appointments would be appreciated. Especially when and who might do a biopsy. I’d like to know about people’s experience of first appointments / biopsy and views on how long it takes to recover from a biopsy. I’m considering asking for my endoscopy to be rescheduled .

[Omakaat]

Hello.

You are scheduled for a fast track- and so you should be ofcourse, GCA/PMR are serious conditions.

I’m sure you have read the experiences of fellow patients here on the forum. The FAQ are also very helpful.

I live in the Netherlands, so my personal experiences could be quite different from anything in the UK.

I find the online info my hospital provides very helpful and different hospitals have different views or procedures.

Re: ophthalmology: I had two, not stressful at all, just peering in different lenses, some eyedrops, another lens etc.

Re: gastroscope: for a lot of people it is a doddle, for myself I was not prepared to try it out, and since I had a choice in the matter. I choose a light anesthesia- just a drop of propofol and I was out for the entire procedure. Wonderfully restful, and the coffee and “stroopwafel” afterwards were a real treat.

Biopsy can be taken during this procedure - usually without any consequences. But in my hospital they did advise to bring an overnight kit, just in case there was some light bleeding caused by the biopsy.

If you are sedated or have eyedrops, you can not drive yourself home.

Re: rheumatologist consult: start a list, on your phone or in your journal, with all the questions. I met three different ones, each with his/her own approach. Even simple matters as who is responsible for checking blood sugars, blood pressure, who writes a prescription and were is it send to, what is expected of you, as a patient, do you for instance, arrange your own bloodtest? And were can you find the result? Check them yourself, doctors everywhere are overwhelmed so you have to keep track yourself.

Start a journal. Keep track of prednison dosis, symptoms, short notes on consultations.

Anaemia: very thorough from your GP. My experiences: when I have a major flare, my thrombocyte’s count rises enormously, and I become quite anaemic. Just signs your body is suffering (and fighting back) from the infections.

I was glad to read that in spite of your illness you were able to go traveling. Do realize that these ailments will force you to listen to your body, and not listen to the false pretenses of energy and excitement the high doses of prednison sirens sing to you. I call it: take a holiday from my, quite Calvinistic, self. Dutch upbringing and all that. Just be kind to yourself!

All the best,

Oma Kaat

[SomersetJB in reply to Omakaat]

Thank you Oma, I should have clarified that I’m expecting to have a temporal arterial biopsy and local knowledge of who/ when this might be done will be helpful. The holiday has been a challenge. 30C and humidity in Malaysia has had my head feeling v uncomfortable but I made it to my daughter’s wedding and for that ( plus sight intact) I’m v grateful. It’s also provided a welcome distraction from the worry of my diagnosis. Taking it one day at a time mostly but know I need to be prepared for the return home.

[Omakaat in reply to SomersetJB]

Why would you have a temporal arterial biopsy? You have already been diagnosed with GCA, right? And taking prednison, so possitive biopt, always a hitormiss, is very unlikely. Anyway, in Holland at least, you get a local anaestetic so, it does not hurt, but you are expected to have a chauffeur along to drive you home. The PA forgot to mention that, in my case, so I just had a cuppa and some rest and drove myself home. Good to hear you made your daughters marriage, children always come first, don't they? Best wishes!

[SomersetJB in reply to Omakaat]

Thanks - I’d also wondered whether biopsy was worth doing but had been advised by the ophthalmologist that they would do one. Maybe he was mistaken. Daughter took high priority but I was clear that I’d only travel if I was fit to do so- I didn’t want her marriage to be marred by me losing my sight on a plane to get there or other emergency. In fact I was a nervous wreck in the few days before diagnosis because I sensed that something was wrong but wasn’t sure until it was too painful to sleep with the side of my head on the pillow and the double vision happened. I’d managed to convince myself and others that the jaw pain was me clenching my teeth at night!

[PMRpro Ambassador in reply to SomersetJB]

I assume you have been on high dose pred since the diagnosis? That means they decided it was GCA from symptoms and after 3 to 4 weeks on high dose pred the likelihood of a biopsy showing anything is small. If it is negative, it is meaningless since that doesn't mean it definitely isn't GCA, it means they didn't find what they were looking for and there are several reasons for that - including it might not be affecting that bit of artery but be elsewhere. A positive biopsy is 100% certainty but they are only found in about 40% of cases. It is very unlikely you will get one at this appointment, it is the surgeons who do it at day surgery lists. You might, but I would be surprised. Many surgeons would say it isn't worth it.

[SomersetJB in reply to PMRpro]

Thank you, yes I was put on 60mg and had been wondering whether there was any point in doing a biopsy so your comments about biopsy are really helpful- the ophthalmologist who saw me at the eye hospital emergency dept told me to expect one. The left side of my face where the ultrasound confirmed GCA has settled down but on the right side I developed jaw and temple pain so have stayed on 60mg. It’s slowly settling down but it’s taking longer than I’d hoped for. Thankfully no more eye symptoms and I traveled with lots of pred.

[PMRpro Ambassador in reply to SomersetJB]

If it was confirmed with an ultrasound there should be no need for a biopsy - they are equivalent.

[Sophiestree]

re endoscopy, just be aware that it could be a very long time before you get another. It's always good to rule things out. Sounds like you have had good care from your GP. How do you feel now? That was a big trip!

[SomersetJB in reply to Sophiestree]

Thanks Sophie, yes, thanks to comments on this forum I plan to go ahead with endoscopy. I’m still in Malaysia and am in the mountains where the weather is more like the UK 22-24C much better than being at sea level where it’s 10C warmer and moving between the hot and humid outside and air conditioned buildings really added to my facial pain/ tenderness in my temples I understand it’s the blood vessels expanding and contracting. I haven’t been able to explore Malaysia as much as I’d have liked but am content to sit and read, be glad I was well enough to travel and just enjoy the moment. It’s given more opportunities to talk to locals and so it’s been a great trip . We fly back this weekend so Saturday morning I’ll tumble out of Heathrow and a few hours later will be home heaving a big sigh of relief.

[PMRpro Ambassador in reply to SomersetJB]

"the weather is more like the UK 22-24C"

Hahahahaha - this morning it was 6C, yesterday scraped up to 15C!!!!!!!