Panic about forthcoming rheumy appointment.

Mat48

I am to see my rheumy on Thursday. To recap for anyone who is new to my story I have RA and Hypothyroidism (autoimmune), a bit of OA and some possible other secondary things which seem to just get acknowledged as part and parcel of my RA such as Raynauds, Sjogrens and Uticaria without any official disgnosis. I never get sent for x-rays although my hands were done earlier this year at my own request - no erosions showed up, just a bit of possible early OA. I have never had ultrasound or MRI.

I was taking methotrexate by injection and for a year was also on Hydroxichloraquine - which my GP took me off to try and see what was causing other symptoms or side effects. Never got put back on it for some reason - rheumy and I couldn't recall why. But due to parasthesia I have also been off methotrexate for four months. Apparently - according to my podiatrist my RA has been flaring off and on - lots of inflammation in my feet he says. So I took his word for it, having referred myself to him, and went on Prednisolone for four weeks - weaned off last week. Had a one day flare (I think?) up on the day I stopped. Now just low level pain and stiffness again.

For the first year my rheumatoid factor was a low positive but my anti-CCP was negative. My rheumy diagnosed me with sero negative RA in 2011 and advised that things could change and make him aware of new symptoms but when I saw him 4 months ago he said no swelling in joints despite the fact that my ESR was still raised and I had sore feet and pins and needles everywhere. My rheumatoid factor was negative 3 months ago which surely must signify something - having previously been positive? My ANA was negative apparently.

I have already tried Sulfasalazine and had a serious reaction to it. I think anti tnfs are being considered for me if my DAS is high enough to meet the criteria. Otherwise he will try and get me back onto methotrexate at a low dose with Hydroxy. Or maybe suggest Leflunomide if I refuse MTX.

I feel in a panic about all of it now because I either have a high pain threshold or I am not getting enough pain to feel I need drugs that make me sick. But if I am going to take these powerful drugs I want to take enough to do the job if possible. I get told by all my medical team that I need these drugs because of my ESR but only the podiatrist has ever really comvinced me that he can see RA in my feet. Apart from this it just seems to be a case of trusting that low level pain everywhere means active RA. I can't see or feel any swelling and most pain is felt in my feet and ankles but its not excruciating as it used to be. I feel my RA must be mild but no one of the medical team seem to agree (or disagree). I feel something more systemic might be going on but again I never get referred to a neuro or a dermo or an endo . Its just all a question of having to trust the rheumy's experieced instincts.

So I dosed off earlier and woke in a complete panic. I have insomnia unless I take sleeping pills because of my terror of more drugs or else because of the strangest neuralgic type of pain which is very intense - especially in feet, ankles and knees and wrists. It is worse when I lie still so I end up thrashing about or even walking up and down the stairs. I've asked them if this might be Fibro perhaps but they don't seem to think so.

Does everyone else have to place so much faith in doctors without any ultrasound, MRI or other specialist input to back things up? I've written a typed list of new or previously unreported symptoms and photos of uticaria, white toes and swollen soles but my rheumy never pays any heed to lists usually.

Sorry to waffle on. What should I be aiming for from Thursday's consultation?

stickywicket

The way I see it is this, Mat. Whatever else may or may not be wrong you definitely have some auto-immune form of arthritis which just as definitely requires either DMARDS or anti-tnfs to restrain it whether or not you are in a lot of pain. Use the rheumatology appointment to work out a plan with your consultant.

I've had RA for 53 years, never had an ultra-sound and only ever had an MRI when I broke a hip.

Try to relax a little. You say you have insomnia unless you take sleeping tablets yet a few weeks ago you said you had narcolepsy. For my money you need to chill out a bit and let the docs do the diagnosing. Then work out a plan together and make it work. Good luck and let's know how it goes.

Mat48

Thanks SW I appreciate your advice - especially because you really do know how things work with RA having had it for so long. It is helpful to know that imaging is not routinely done for others with RA.

I must correct you on one thing though. The narcolepsy you refer to was a side effect of taking the dopamine agonist drug, Pamiprexole, about 6 weeks ago now. My GP decided to try me on it because he thought my insomnia might be due to Restless Leg Syndrome. I ended up in hospital overnight because of this side effect - which led to me collapsing on a remote beach in the rain fast asleep! My poor husband had to drag his somewhat heavy wife back to the car while a man who teaches our son looked on - probably wondering about how much alcohol this parent had consumed the night before?!

Two months of insomnia may well have precipitated this side effect but it is listed fairly high up for this drug as I found out after my 3rd episode in 24 hours :roll: There was me hoping to justify the obsessive retail therapy or the sexual mania also listed as common side effects, but instead I just got the falling asleep without due warning one :oops: Mat x

Boomer13

Hi Mat;

Sorry you are panicking.

I would just summarize what has been happening month by month, including what happened on prednisolone, how much you are able to do, your pain levels, any new symptoms, and wether or not your parasthesias have improved off of mtx. You might mention what the podiatrist said.

I wrote my brief summary out this last appointment, which proved successful, as he actually read it and kept it for my file. I have to say I do trust my rheum's opinion as he always does some form of exam, swollen joint count, etc. I think my job as a patient is to describe my symptoms, report new ones and drugs I've been prescribed by my GP. Then, I let him do his job and give me suggestions as to what to do. I'm fortunate as my doc is very focused and doesn't stray in conversation from the rheum. stuff. He sometimes will ask about stress levels, etc but I think he just wants to see where I'm at mentally. Oh, and we go through bloodwork results, etc. I think if you report what has been happening, you have done your job as a patient.

I think you should impress on him how much your symptoms are affecting your life; fatigue levels, pain and anxiety.

Perhaps now that you have been off mtx for four months he will repeat bloodwork for you. He must decide if you have active disease or not. I don't think you need be anxious, he's been helpful for you in the past, yes? I think we all are at their mercy to some extent because they must see objective signs of progressive disease to prescribe the harsh meds they are in charge of. It's very difficult to be on the patient-end of the relationship, isn't it?

I hope I'm reassuring you, I don't mean to be making you more anxious. Please try not to worry too much. HTH,

xxAnna

Mat48

Thanks Anna - you are reassuring me a lot as usual. It was just that I woke to a moment of blind panic thinking how do I know they are right? I do like and trust him to an extent but I guess we are still in the early days of our doctor/ patient relationship. The consultation is also attended by a senior physio who is his assistant here - and who also sings in my choir. So the dynamic is quite complicated in these consultations for me I suppose and I find them very nerve wracking in a way that is hard to explain - the small community and lack of rheumy nurse here often make me feel like I'm doing too much of the running myself. I have a list of symptoms that I didn't get around to mentioning last time such as dry eyes, nose bleeds and uticaria - despite having a list with me then too. I don't think my rheumy likes lists much! :roll:

I get my bloods done tomorrow morning first thing. Better get try to sleep now!

Mat xx

thistlegirl

Hi Mat,

I like lists. Maybe start off by saying to him that you are feeling overwhelmed at the moment and you were hoping he could clarify some points for you that have come up since the last time you saw him. Try to break it down into new diagnosis, unknown symptoms, ongoing pain, then questions-ie would an MRI help confirm this?, is you negative esr "normal".
I know it is hard but try to sit quietly while he reads the lists so he has a chance to do it properly, keep a copy for yourself if you want and write down his answers below. Try to keep it simple so he has as little to read through as possible

The appointments are never long enough, even leave him the option of following up with answers? Make it clear that these questions are causing your stress levels and as you are "new" to this you need some clarification.

On the X-ray/mri front, I find they go a lot more on pain levels, function and range of motion in the joints first and then if there is any negative change between a few appointments they may go for x-rays.
I have JRA but also hypo-mobility in my joints, this confused things as I always got told that "my range of motion was still good despite my pain level" Now I am a grown-up and no longer double jointed they have started to look at my joints more as my range of motion is getting restricted.

Hope this helps

Thistle

Mat48

Yes Thistle it does help. All responses so far do actually. I have a list of ten symptoms that are either new or are ones I've failed to flag up at previous appointments. I am hoping to just pass him the list, wait while he has read it and then ask if he can pick up on the symptoms that he feels are relevant to him and to me.

Sorry you've had this beastly RA to contend with from a young age. I do at least thank my lucky stars that it didn't arrive for me until around my mid forties (with hindsight). Take care and thanks again. Mat x

charleeh

Hi Mat,

I think when ESR is raised (inflammatory markers) they will be doing damage somewhere. I take MTX and have Tocilizumab infusions to help lower inflammatory markers and suppress my auto immune disease - or at least that's how they have explained it to me. My ESR was raised for 18 months and my wrists are now bent.

From the pains I have had in odd places I know where there is cartilage it can be eaten away!

I have Sero negative RA too. Rheumatoid never shows in my blood, but I have all the symptoms, inc permanent damage to my hands. They thought I had reactive arthritis at first but after many months of deliberating and many medications later, they decided it was sero negative! - the name they use varies on my symptoms though when they write to my gp. this time they noted I had spondyo-something-or-another too. again, nothing shows in my blood except a raised ESR.

as for the uticaria you mention - is that a red rash? I get rashes all the time and I put it down to medications, the hospital never seem bothered about it, even when I had a rash come up in a ring and I was very concerned!

I find you have to trust the Dr's - I really don't trust them all the time in my gut, they don't tell you how to live with a condition and sometimes I wonder if they even care. But I find if I ask enough questions I end up with enough reassurance to believe them. I do my research and ask load of questions like....

I have heard about this... I have I got that? .... if he said no, I ask how? what test proves it? etc etc
It's their job to let you know what they are doing to you and telling you to take in my opinion. But I will be friendly about it and get my answers that way.

Also, always make sure you mention if you want a scan and give reason for it. I am off for an MRI on Tuesday to locate where this back pain I have is coming from.
I had to really moan and even take photo's in of the before and after of my hands to express how bad my wrists were (despite not having movement in them, they were so swollen it was hard to see the bend with the naked eye but I could tell) - my Dr gave me an X-ray then. Do what you have to do, its your body not theirs. But as I say, I find it is better to be nice and 'concerned' about things rather than moody about it. I seem to get things done that way.

I hope you feel better soon and they get you on some meds to help you.

Sorry to waffle on - I hope this is of some help to you.

Best wishes,
Charleeh.

salamander

I never give my consultant lists, I think it is better to talk. I have one in my bag to remind me what to ask about and I get through it during the consultation. Sometimes I forget something then I will ring up or email and ask. What I've learnt, over the years, is that some things are urgent and other things just rumble alongside the RA. I tend to concentrate on the urgent and my GP handles most of the other stuff, like eyes, infections, mild side effects, etc. She refers me if needed and will write to my rheumy if something is really troubling me.

I rely completely on my consultants expertise. They have seen hundreds of patients and know what active disease looks like. I never have X-rays apart for my chest but I have a lung condition. I've had ultrasound when an inpatient and so ill I couldn't walk and one on my hands since, four years into my disease. As for an MRI, if you are worried about neurological symptoms, ask for one.

You've got to have trust in your doctors otherwise you will become a wreck.

Mat48

I agree about approaching people with friendliness - that is my approach too and it seems to work. I will keep my list in my bag as you do Sallamander because he doesn't take heed of lists and it just ends up making me feel compromised somehow trying to check - better to look him in the eye and focus on what he is telling me.

I don't know where my ESR will be sitting just now - haven't had it taken for months. Last appointment it had come down to 28 as a one off and he dismissed the pins and needles as not being caused by RA on that basis. I've been on Prednisolone for four weeks until last week so it may be down again I suspect - which will likely influence what is decided re any future treatment.

Thanks for all the advice - I feel more confidence in my medical team again now. I'm due to have some CBT counselling next month and hope this will help me accept things better :roll: re drugs, doctors and disease.

purpleowl

Hi Mat,

I read your threads but as I don't have a clue about all the drugs apart from Mtx which I take for Psoriasis I can't help you. :roll:

I wish you well with your rheumy appointment on Thursday and I am sure you will get all your worries/pain across to him. I find a list invaluable as my brain always turns to mush.

Wishing you well,

Trish xx

Mat48

Ps mine is not a rash - it is individual bite like spots on my face and neck - some big and boil like some small - always a bit itchy with no heads - very insect bite like. They've been around for two years now and are worse at the moment. GP thinks autoimmune hives - could be relevant or not re other connective tissue conditions.

Mat48

Thanks Trish! X

salamander

just a p.s. from me, have you thought about doing an 'Expert Patient' course? It free and your gp can refer you. The reason I mention it is because one of the things they cover is getting the best from your consultations.

Mat48

I'm not sure they run these Expert Patient courses in our area Sallamander?

But I did attend the first of four AC self management workshops 2 weeks ago and am going to try and attend the third tomorrow - weather permitting (snow forecast!). I missed last week's one on managing pain because I was in too much pain to drive into town for it ironically! The thing was that I appeared to be the only person attending who had arthritis to manage - even those leading the workshop were there as carers for disabled children or had other conditions such as breast cancer or deafness. That's the thing about having these courses in a small place I guess.

But this workshop was about communication and we did do role play exercises about how to speak to our GPs. I get on fine with mine mostly - he's very professional usually although he got a bit exasperated with me today because I was so preoccupied with asking his advice on how to manage my rheumy apt on Thursday and what NSAIDs would work best to get me through a concert I sing in on Saturday night - that I accidentally gave him my right arm to draw blood from. This is the arm he can never get blood out of and by the time either of us had remembered he had stuck the needle in and got nowhere. I was reminded to remind him to go for left arm only in future several times :oops:

Also I should say that I'm involved in campaigning to raising awareness about RA/ Inflammatory Arthritis in various ways. This has its advantages and disadvantages for me as a patient because I think my GP feels a little threatened and my rheumy is always keen to learn more! :roll: