What to ask at first Rheumatology appointment

[Arabianmynx]

So finally have an appointment to see the rheumatology dept at my local hospital and would appreciate any advice with what to ask to get the most from this visit.

A little personal background info - in November 2021, I suddenly had aching joints and mobility issues and within a week went from a reasonably fit 65 year old who walked at least 5 miles every morning to someone who could barely move about and look after herself let alone be the carer for my disabled husband.

Anyhow, I put up with this new affliction for a couple of weeks expecting it to go away on it’s own but it didn’t and after much nagging from DH I tried to contact my GP - and that’s a whole story of its own as I’m sure you’re all aware of the difficulties to get appointments with drs these days. After about 10 days and eventually getting someone to listen to me (through the online Doctrine system) I persuaded the medic that I didn’t have covid, that I know my own body and that something was wrong with me I was sent for a blood test. I waited patiently for a phone call with the results but that didn’t happen, and my GP practice don’t call if bloods don’t show any anomalies so I assume nothing to see. Meanwhile, things aren’t improving for me so ring GP in the hope of an appointment and receptionist informs me that I will be getting a phone call as a result of bloods - GP eventually calls a couple of days later goes through all of anomalies with the bloods and said it could be PMR (which I’d never heard of), I was prescribed a week of Prednisolone at 15mg and to book another blood test for a weeks time. With that done and another battle to get to talk to a GP about said bloods I’m told the steroids should’ve improved the blood markers but haven’t therefore he was going to forward my ‘case’ to some online system whereby consultants would respond within 48 hours and see me on an emergency basis - what actually happened is I received a letter telling me I’d been put on the wait list for a rheumatology appointment.

Now not having achieved any progress I’m wondering how to get some help, fortunately one of the practice nurses calls my husband and during the conversation she is telling him to get his wife to help him with his dressings as they’re short staffed, DH gives phone to me to receive instructions and I mention that I’m pretty incapable of looking after myself let alone do extra caring for my husband. Seems the carer unable to care scenario is the trump card half an hour later I get a call from a GP who prescribes 15 mg of pred on a repeat prescription, and that’s how it’s remained since that day - and haven’t heard from GP’s since.

So, hospital appointment has now been scheduled for end of July and I obviously want to get as much from this meeting as possible hence some advice on what to ask/expect.

Many thanks and apologies for lengthy post.

[PMRpro Ambassador]

I think you have to be led by what happens at the appointment. There is a fair chance the rheumy will be unhappy about not having seen you before pred and may well say they want to see you without the pred. It very much depends on their previous experience of GP diagnoses.

Keep a diary of symptoms - also pre-pred - and response to pred. They will take a clinical history - make sure you know what hurt, where and how long it was through the day, what made it worse, dates are helpful too. Bullet lists are useful, nothing too detailed but a copy for the doctor might be accepted. There should be a physical exam as well.

That was what happened at my first appointment where I saw the consultant, I was given a 6 week course of pred to carry me over a business trip to the USA and that brought about a minor miracle after the first 15mg dose. At the second hospital appointment I saw a different doctor who repeated the history and exam of the first appointment - to the letter - and then admitted he hadn't a clue. The consultant was fetched, he ignored everything I had said and he decided it was inflammatory arthritis (no joint pain to be identified, still isn't 13 years later) but I couldn't start the drug he wanted me to take as I was soon to move to Italy and couldn't without a conultant supervising. No-one here has ever doubted this is a form of PMR.

But other than being clear in your own mind about symptoms and response to pred - there isn't that much you can do to prepare for the appointment. And don't build up too much hope about asking questions and getting answers until you meet your consultant. Some will tell you very quickly to shut up, listen to them and do exactly as they say (honestly, that has happened), others understand the vital role of collaboration with the patient. Until you know which straw you have drawn you can't plan. The chances of always seeing the same person are small and appointments often don't allow time for qustions unless you have a good doctor,

Sorry to sound so downbeat - but that is the reality. It is worse to have done all the preparation and then be slapped down by an unsympathetic rheumy who disapproves of GPs making decisions and initiating treatment.

How are you doing on 15mg? Tell us a bit about that rather than the history - when, how long have you been on it, how did you respond with a brief timeline?

[Viv54 in reply to PMRpro]

I could not agree more , Never been helped in the slightest by the ones ive seen, total waste of time. They seem to want to disprove everything you say to them !

[Missus835 in reply to Viv54]

Indeed. Everytime I mentioned something like a symptom or something concerning to me, she countered with a pre-formulated answer. Couldn't agree more.

[Viv54 in reply to Missus835]

Exactly, I was shocked , I have not experienced, this in any other sector of the NHS.

[Ronzy in reply to PMRpro]

Yes. Sorry these answers bring back bad memories. The one I saw fired loads of questions at me expecting me to remember every detail and dates. So arrogant 😱🥹 I was traumatised 🥹

Didn’t think they was all like him. They must be cloned.

I’m afraid my only advice is don’t let him talk

Down to you. He his not special 🤬I’ll say no

More sorry. Probably problem is we see them too late

Best of luck anyway as they all say be prepared bust of luck

🍀🍀🍀🍀🍀🍀🍀

[Jayveedee]

I waited 6 months to see a rheumatologist and after a quick chat he decided I didn’t have PMR and I should stop taking steroids. When I asked what he thought it could be he said he won’t know until I’m off them completely! Currently on 2 mg and seeing him in a couple of weeks. I got fed up with the pain in my hip so paid privately for an MRI scan and my GP now says I have bursitis!

[Seacat30 in reply to Jayveedee]

I think that, as well as the questions about your symptoms and family history, they will manipulate your body in lots of different ways and ask you to do various things yourself. They will form some initial judgements from doing that, send you for at least an Xray and more blood tests. I had an ultrasound set up too.

[piglette]

The real question is did the steroids act like a miracle on your pain? I have never had a normal CRP or ESR blood test result. Doctors just shrug their shoulders and say it is just me. The rheumie will ask you how you feel. I just hope yours is better than the ones I have had.

[Missus835 in reply to piglette]

Yes. Prednisone was an overnight miracle for me. My GP retired at end of November so there was no longer any input from him (a good thing as he needed to retired at 79 and dozing off while you were talking with him). Everything with him was attributed to "old age" and hence my diagnosis of PMR did not come for 5 months of excruciating paind, demanding blood word and being referred to a gem of Neurologist. One dose of 20 mg. alleviated some symptoms overnight and the next day, progressively better. Now in the tapering process, which is going slow. The Rheumie was pretty much useless, sad to say. They truly do not get it.

[piglette in reply to Missus835]

75% of people with PMR never see a rheumatologist they just stay in primary care with their GP. I was told I had a virus by my GP, a long term one. I really could not get dressed in the end, so went to a rheumatologist privately. He was pretty hopeless but did diagnose PMR and gave me steroids.

[Missus835 in reply to piglette]

I could not dress either. Could do very little, except walk. I could walk. Yay! I did whatever I could do and tried not to dwell on what I could not. My daughter had to help me into my clothes. I had to get a riser seat for the toilet (which I took back to the Red Cross as it was on loan), but still could not do the "reach around". It's so much better now, even with the tapering. I can do most anything, with minimal pain. Hips are taking a hit right now though. We must keep moving (I'm probably the worst offender for not). How are you doing now?

[piglette in reply to Missus835]

When I first had the steroids it was like a miracle happened I was back in the land of the living.

[Missus835 in reply to piglette]

I agree. Was at the point where, when I went to bed at night, I dreaded the waking up. Not a good frame of mind at all. The morning of Jan. 6, that all changed and I'm so grateful. We'll get there. Cheers!

[piglette in reply to Missus835]

In fact I even dreaded going to bed as I knew I would be in awful pain and used to think back to when I used to be really comfortable in bed.

[Viv54]

This post makes me so sad ! what is happening to our wonderful NHS ! There are so many people not getting GPS apps ,or even being able to talk to one. Its such a worry to have to wait so long, I have had no luck at all with the 3 different rheumatologists i have seen they just dont get it. I hope your lucky and get a good one. Just explain every symptom you have. Hope it works out for you , let us know.🌷

[Sophiestree in reply to Viv54]

I totally agree. I despair reading what happens to people when they/we put so much hope into a consultant hospital appt. Personally I liked it better when they ignored me. And when I read the endless posts like this I am just grateful that a PET CT gave my diagnosis as that can't dispute that unlike so many of you and what you then have to endure.I

[Missus835]

I'm so sorry you're going through the hoops. I had my first Rheumatologist appointment on Monday last. It was so disappointing after waiting 5 months to get in. She was condescending and talked over any questions I could possibly have. She was an hour and a quarter late for the appointment, so it was very rushed. She ended up giving me repeat bloodwork (which is a good thing) and a Rx for something which would help prevent osteoporosis while I'm attempting to taper off of Prednisone. Told me to drink more coffee for the fatigue. I only drink one per day as it adds to the shakes. She said "drink more". I was truly put off by her abrasive attitude. Next appointment FOUR MONTHS and she said "we will see how this tapering schedule is working", or I may not bother at all. I will be shopping around for another one in those four months. Cheers to you and continue to hang in there. I'm 72 and was quite active prior to PMR. She also said, "maybe you were just meant to get PMR". Mine coincided with both Covid jabs. Obviously she didn't think this was a factor. I do. All the best my friend.

[Viv54 in reply to Missus835]

So many people, with a similar experiences😞

[HeronNS in reply to Missus835]

What is the "something" you've been prescribed to "prevent osteoporosis". Don't take anything until after you have had a good discussion perhaps here and/or one of the HU bone health forums. Most of us will NOT need anything to save our bones, and those that do should know everything they poossible can about the particular drug they are prescribed. Some are more problematic than others.

I was found to be very low in iron when I complained about fatigue. This is confirmed by ferritin reading, as a low haemoglobin is sometimes found in autoimmune conditions when the actual iron level in the body is high enough. Need for supplementation must be confirmed.

[Missus835 in reply to HeronNS]

Actually I do not know the name of it. I turned it in the pharmacy and said I may pick it up at some time and would call. She also ordered a bone density scan, which in Canada could take 6-12 months. I have no bone problems at this time (as far as I'm aware). I have started taking a B12 supplement as I too thought my iron could use a boost. Can't hurt, might help. Thanks for your response.

[HeronNS in reply to Missus835]

Before you actually take the drug, have a read of this. It's a bit dated now (some of the included links may not work) but the basic story remains valid. A description of how I managed my own recommendation to take alendronic acid. (I didn't go so far as to actually accept the prescription.) I also am in Canada.

healthunlocked.com/pmrgcauk...

[Missus835 in reply to HeronNS]

Thank you for the very informative post with all the links. I've saved it and will check them all out. Self-education is the key. 🌌

[HeronNS in reply to Missus835]

Indeed. So far my self-education has saved me from osteoporosis drugs (let's hope that continues) and also probably from knee surgery for osteoarthritis coupled with injuries. Doctors do not know everything and I think they suffer from blinkered sight. Well, if you are trained to behave like a hammer everything will look like a nail, when a buckle or a lace or a hook might be what's needed.

[Carathedog]

Surely someone has a positive experience with a rheumatologist

[PMRpro Ambassador in reply to Carathedog]

Oh yes - several of us have superb rheumies - but the ones who come to mind had to switch or move to get to them! Most of us had had a right eejit first or even second time around ...