First Rheumatology Hospital Appointment - UPDATE

[Baner]

Advice please on what to expect at first face to face hospital appointment. Previous appointment was changed to telephone consultation as I tested positive for Covid. Was feeling very unwell but not sure whether it was PMR or Covid but consultant reduced Pred from 30mg to 25mg till next appointment which is tomorrow. Still feeling quite unwell and would like to be well prepared.

UPDATE

Saw Consultant and his registrar this morning for 30 minute consultation. They both seemed interested in what I had to say. I was feeling quite unwell during appointment and they decided that Methotrexate might be better option than Pred. They explained that it could be up to 12 weeks before you notice any difference. I am to reduce Pred tomorrow to 20mg then reduce by 2.5 mg weekly after that. I am to start Methotrexate next Monday, followed by 5mg of Folic acid the next day. As I have a lot of gastric problems they have given me 40mg Famotidine tablets to take at night to help with any nausea. Had bloods done and I will receive telephone call tomorrow if anything significant to report. They were also concerned about a swelling in my neck which could be a Thyroid problem, they are requesting an urgent appointment for a scan to check this out, should be in next couple of weeks. Then regular blood tests every 2 weeks till next appointment.

[Seacat30]

You will probably have to give a urine sample to the nurse on arrival which will be dip stick tested but also sent off for analysis. The nurse will measure your height, weight and blood pressure.

The Rheumatologist is likely to run through your family history looking for risk factors, ask you loads of questions about your own general health, how your problem developed and your current symptoms.

They will give you a thorough physical examination including manipulation of your joints and ask you to make various movements and comment on the pain caused by them.

They will send you for a blood sample and probably X-rays if you haven't had those already. Maybe other tests? I had an ultrasound on one of my shoulders. I didn't get an MRI but will be 6 months later.

[piglette in reply to Seacat30]

My gosh, your hospital is much more thorough than mine. I had my weight checked, no urine test or height. I did have blood samples and x-ray. I just explained my symptoms and the rheumatologist said you have PMR. It took thirty seconds! Then each visit I was asked my current symptoms.

[Seacat30 in reply to piglette]

I didn't get to see the nurse on my second 6 months (instead of 2) visit. I got a 15 minute slot running 1.5 hours late. It was another 1.5 hours in the blood test queue.

[piglette in reply to Seacat30]

Sounds like my visits. Plus another queue for the x-ray. In fact I gave up with the blood test queue and got mine done at my GP’s.

[Seacat30 in reply to piglette]

I came home feeling so much worse that day.

[piglette in reply to Seacat30]

I went to the rheumatologist feeling really rough as I had reduced to fast and he wanted me to reduce by 2.5mg within three weeks. He also wrote to my GP saying that I had no pain. That was the last time I saw him!! - Ever.

[Seacat30 in reply to piglette]

This was a new chap. We never see the big boss. Apparently her minions change every year. He didn't like me going back up from 8mg to 10 for 2 months. I was back at 9mg but he made remarks about another drug if I couldn't reduce faster. I have only been on pred since late June 2021. He did give me 2 more months prescription for 8 and 9mg though and implied thst he would turn a blind eye to me going to 8.5 on route.

[piglette in reply to Seacat30]

I really do despair of some doctors. You would have thought they were doing a mathematical puzzle rather than trying to monitor the best for their patients. I suppose the only way they will know is to get PMR themselves. Sounds like he may be suggesting Methotrexate which supposedly helps in reducing.

[Seacat30 in reply to piglette]

I think he was.

[PMRpro Ambassador in reply to Seacat30]

Having got to 9mg in 7 months - that is utterly ridiculous wanting to add in another immunosuppressant so soon. It really worries immunology experts that rheumies are so gung-ho about adding in more drugs.

[Seacat30 in reply to PMRpro]

Yes I carefully failed to respond.

[Bothan in reply to Seacat30]

I had just blood samples which were not conclusive but symptoms all lead to diagnosis of PMR. Originally could barely get out of bed and 2 days on Prednisone and pain and stiffness much relieved. Down from 40 mg to 7.5 over 9 months but struggling. Had Dexa scan 1 month ago, not arranged by my Rheumatologist but my GP! Have osteoporosis as well Now been put on self injectable drug called Amgevita (adalimumab) as well. Only 63 but feel like so old. Ususlly very resilent person but starting to wear me down. Rheumatologist definitely no understanding or empathy. Keep strong all fellow sufferers

[MarilynRose in reply to Bothan]

Did you say you are 63 me too and I feel so old I am worrying about going back to work as not been for 2months I have good and bad days can hardly stand some days .

[DorsetLady PMRGCAuk volunteer in reply to MarilynRose]

Then you need to get line manager and HR department onside….they should be supporting you and making your working environment better so you can get back to work .Have a look at this link -

citizensadvice.org.uk/work/...

[MarilynRose in reply to DorsetLady]

Thank you for info .

[Seacat30 in reply to Bothan]

I am just coming up to 59. Sending you hugs!

[Baner]

Thanks to all, thinking it might be a less favourable experience than I am hoping for. Still finding this PMR difficult to come to terms with. This appointment is another step in the process. I have written a few notes on various symptoms and will report back. Thanks again for your replies.

[PMRpro Ambassador in reply to Baner]

Everyone struggles to come to terms with chronic illness - it is a bereavement, you have lost your normal life in so many ways. So treat it as such - there are online and f2f options you could try to help - and you will get lots of support here too. We all know where you are!

[Sharitone in reply to Baner]

You might want to prioritise on which issues you want to discuss, in case you get asked 'Which thing troubles you most?' and time runs out before you get through your list.No, I can't come to terms with it either, even though I'm lucky enough not to have depression. Everyone here knows the meaning of frustration!

[Baner in reply to Sharitone]

Thanks for that advice, will move fatigue to top of list.

[PMRCanada in reply to Baner]

Coming to a place of acceptance that you have a chronic illness (and having to make necessary adjustments), is a process that varies for each person. Usually we wade through other feelings/emotions first, like denial, shock, and anger. As PMRPro mentioned, it is a loss that we grieve. Please know you are not alone, and we “get it” better than most others.

[Earthangel59]

Depends where in the country you are and who you see. The rheumatologist I am seeing at my local hospital is lovely but the wait to see her is lengthy. I had no urine tests at all. Had bloods done prior to seeing her but not been asked to have any done since. She asked lots of questions, manoeuvred my limbs to tear my ability and pain threshold, gave me a leaflet on Polymyalgia and asked me to read a paragraph from it then asked what I thought. When I said that paragraph described how I felt, she concluded Polymyalgia. At my second appointment I had a chest X-ray and was prescribed calcium tablets. She wants me to reduce the prednisone to 5mg by my next appointment with her ( hopefully March). I started on 15mg last July and I’m currently down to 6mg plus 20mg Omeprazole ( which upsets my stomach a little). So far so good!

I’ve also had a dexa scan.

[Abcd123455]

I didn’t get an option of a rheumatologist but feeling better about this hearing your stories! Hopefully see the go face to face February or when I’m down to 10mgs.

[Flivoless]

Don't expect anything meaningful and you won't be disappointed. I've had three FtF meetings all of them a waste of their time and mine.

[Sandradsn]

I had one rheumatologist appointment in 6 years.He was very understanding, told me to carry on and signed me off.My gp has now re referred me!