1st video meet with with rheumy disapponting. - NRAS

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1st video meet with with rheumy disapponting.

Chrt profile image
Chrt
57 Replies

Hi all, yesterday I had my 1st consult with rheumy by video & I,m very disapponted. A dr & the nurse was in the room with me. I was told how it would go beforehand & not to say anything till he finished then he would ask me for q,s I had. Rheumy would examine me starting with hands then feet going upwards to top of body. So after he asked all the meds I was on the exam started with the dr helping, trouser legs pulled up to see my knees, said no swelling there, socks pulled down, dr said difficult to see ankles no mention to take shoes/socks off. but not much to see. Hands ok no swelling. Rheumy says thinks I have both osteo& ra. Said its only mild, as he asked nurse what value is, he said 5.5 ? I don,t know but being on preds for 2yrs subdues it? All I can say if those flares I had are mild I really dont know how you all manage because they crippled me, I couldnt walk, use my hands, sleep etc I dont know how you live with it honestly.

Puttting me on mthrotrexate 2.5, folic acid both once a wk. Continue hydroxy & 5mg preds xdaily for 4mths then down to 2.5mg daily Bloods done evry 2wks for 2 mths then monthly & xrays chest hands & I think feet. He,ll see me again in 4mths. Took maybe 15mins another 5mins for doc to get my prescription & how to take them etc then I was out the door. My only question was what do I do if it doesn,t work cos pain is unbearable, he said come see dr or nurse then it was over. No question how I feel, pain level appetite nothing I had no time to ask anything else. Not only that but no appt for bloods or xrays so I,m really disappointed. Oh he did ask how long does it take for hands to loosen up in the morning & doc told me not to take mxt if I have to take antibiotics. Feel like I,ve been *dealt with* off you go next please. Is this normal for 1st consultation even tho it was by video?

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Chrt
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helixhelix profile image
helixhelix

oh dear, that isn’t very empathetic! But did seem to cover the ground as appointments are only 20 minutes max, so little time. But could have said a bit more! I think they forget how important these appointments are to us.

Yes pred will mask RA activity. But hopefully the MTX will kick in during next 4 months. Double check what dose of MTX you should take each week as 2.5mg is just the standard dosage of one pill.

And “mild” can often just be a synonym for “early” so don’t read too much into it. And yes flares can be comoletely evil - but hopefully you will respond well to MTX and that will never happen again!

if you don’t get appts for bloods and xrays sent then do chase that up.

Chrt profile image
Chrt in reply to helixhelix

Hi helixh thx for replying. Waited 2 yrs for appt it wasn,t 20 mins tho rheumy was gone from screen after 15mins other 5mins was doc getting prescription explaining stuff & I asked should I be taking a stomach protecter which threw doc & nurse as they started going throuhg my notes on computer I nearly laughed when doc said you are taking a lot of meds I said if I dont need them ok,few questions later they decided I didnt need them but go back if any symptoms occur. Yes good job you mentioned mtx just got them out & its 4x 2,5mg taken altogether once weekly thank you! I start them on Monday. I thought probably osteo as well as I,m 69 & don,t think many my age wouldn,t have it somewhere. But I,m speechless really. I didnt even get to show him pics of my hands when. so swollen & couldn,t use them with feet the same. Doc & nurse said if I have a flare go straiht to clinic or A&E, thought to myself better make sure it happens between 9am & 3pm mon to fri then to avoid e&e which by the way would prob need ambulance if feet as wouldn,t be able to walk. Yes lets hope no more flares & this may be my last when mtx kicks in onwards & upwards eh yes I,ll chase up bloods & xrays next wk thxs :)

helixhelix profile image
helixhelix in reply to Chrt

Focus on the positives. You have been diagnosed now, and are in the system - no matter how ropey that system is!! Onwards! This is the absolutely worst time and usually it will now start to improve.

10mg is a low dose of MTX - even with Hydroxy - so don’t be afraid to push to increase dose if you don’t see any improvements at all in 6-8 weeks or so. You have to wait the full three months to know if it’s working, but you should start to feel a little so ething before then.

Chrt profile image
Chrt in reply to helixhelix

Hiya h/h yes I,m a positive person & I am glad I,m in the system,hopefully all will be good when it kicks in. You know on reflection I should have gone to the hossy the times I was bad instead of riding it out. Never mind I,m learning with help from here. absolutely no truth in that saying ^cant teach an old dog new tricks* eh lol thanks for your support :)

Fruitandnutcase profile image
Fruitandnutcase

I always say don’t expect anything from your consultants appointments then you won’t be disappointed. In the year I was being treated for an overactive thyroid I only had one endocrinology appointment where I left feeling really good.

I can’t say I’ve ever found rheumatology all that inspiring either. At my most recent one - almost two years ago and face to face - I was weighed with all my clothes on and my height was measured wearing my shoes - I offered to take them off but was told it wasn’t worth doing that. Then to cap it all my GP had told me to take a couple of CDs I had with results of spinal MRIs on them so I did that and instead of being scanned on my records they were lost forever! And that’s at a top notch teaching hospital - trouble with that was I never saw the same person twice.

So I wouldn’t let it bother you, unfortunately your experience is par for the course. I’ve been being treated since about 2015 and since the initial bloods done by my own GP I’ve only had bloods done by rheumatology and only had my hands xrayed once.If they didn’t mention it make sure you have an annual eye test to check that the hydroxy you are taking isn’t damaging them. Ask (and probably have to pay for) an OCT scan to be done.

It is disappointing though isn’t it.

Chrt profile image
Chrt in reply to Fruitandnutcase

Hi f/n case thxs for replying. I,m shocked really, all this is par for the course, incredible?! How do they keep track of whats happening to your joints if only 1xray taken? Mind they,not given me appts for my bloods or xrays yet suppose I,ll have to chase em up next wk .I was referred by optician to hospital end of last yr some deposits found but not thought to be caused by hydroxy so he said they will now keep me under review yearly, I was impressed as had appt with them less than 1 wk after seeing optician thxs for pointing it out. Same here with my feet being examined with shoes & socks really?? My second toes on both feet are in the shape of a backward C, I spent last summer in outsize flip flops couldn, find anything else put on. Sorry to hear your experience isn,t good either very demoralising isn,t it :(

Fruitandnutcase profile image
Fruitandnutcase

That is great service. It’s really good to live in an area where your optician can do a direct referral to an eye department rather than you have to go via your GP. It makes for very good service.

The thing about hydroxy is that it can lead to irreversible blindness so it is really important to keep an eye on what’s going on. That’s probably why they kept inti action so fast. You can also use an Amsler chart at home if you want - it’s free to download brightfocus.org/macular/new....

It wasn’t so much my feet that they were looking at - my feet are fine but I have osteoporosis and losing height is a bad sign - how can they tell if you’re losing height if you keep your shoes on when they measure your height? 🤣I’ve been thinking I could wear shoes with progressively thicker soles on future visits!

To be honest I’ve stopped bothering about my hospital appointments. I contacted them in 2021 because I hadn’t seen them for two years. I was due to have another rheumy appointment in September 2022 but there’s been no sign of it. I stopped taking bisphosphonates for my osteoporosis because I felt so awful when I was taking them and I came under a lot of pressure to have an infusion - right down to my lead consultant phoning me at home at 8.00 at night to try and persuade me! So as I’m ok with my hydroxy and I top up with paracetamol if I need to.

Your poor toes, that sounds really difficult for you. You must be hoping for long hot summers every year.

Chrt profile image
Chrt in reply to Fruitandnutcase

Hiya f/n case yes I was surprised it was sorted very quickly, felt very privileged & happy! It was the same optician who diagnosed my hubby few yrs ago with macular disease so I stayed with them, 1st sign of trouble they refer us to hossy. I,ve downloade the amsler chart thank you. I live in Gibraltar so very hot summers are guaranteed tho must say can,t stand the heat anymore & seriously thinking going back to uk. Hahah wedgy platforms should give you a few inches height bet that,d really confuse em, you,ve grown instead of shrunk :D :D can you imagine it lol Seriously tho its just not on waiting 2 yrs to see rheumy & being measured/weighed with clothes & shoes on!You,ve very brave to stop your meds but it sounds like its under control with hydroxy & pain killers long may it continue for you :)

Boxerlady profile image
Boxerlady

Tbh my 1st rheumy appointment wasn't much different but it was f2f and she did make me feel listened to. The x-rays ordered are pretty standard, I think and mostly to give a baseline before you start the medication. She did look at some photos I had of previous hand and wrist swelling as I had been on a short course of pred. which she said made diagnosis trickier. She did look at my feet but probably only because I kept mentioning them - as I understand it, they aren't included in the joint assessment of RA, much to every patient's annoyance 🤬Hopefully the Methotrexate will kick in quickly and help you but they will probably increase the dose if not; the starting dose is a good idea in case you get side effects but hopefully you won't.

Chrt profile image
Chrt in reply to Boxerlady

Hi B/lady thxs for replying all I can say is I think it,s an awful way to be diagnosed. How can feet not be included?? I,ve had a flare last summer of just my feet being so swollen I went round in flip flops 2/3 sizes too big walking like a penguin when pain subsided enough to be able to walk no wonder evryones annoyed about that! Thats so rediculous! Gosh talk about learning something new every day I certainly doing that here, wish it was something nice tho, Yes I,m sure the mtx will do its job & right now I,m doing ok as been on high preds for few wks now thxs for info re whats normal consultation I better get used to it least next one I,ll be prepared lol :)

Neonkittie17 profile image
Neonkittie17 in reply to Boxerlady

Don’t get me started on the exclusion of feet/toes in the DAS/assessment! 😡I’ve made my self clear on that several times to my rheumy who agrees with me!

Chrt profile image
Chrt in reply to Neonkittie17

Hi N/kitty why on earth not??? thats absurd!!! So thats why they,ve all being ignoring my feet when I mention them, just rediculous. Whats dsa? So what happens if you have ra in feet then, is it just ignored/excluded how can that be? I suppose if drugs are working obviously it works all over the body? Oh my what a lot I,ve got learn about ra. thxs for this :) ps if your consultant agrees with you cant he start to change things? sorry lots of q,s

Neonkittie17 profile image
Neonkittie17 in reply to Chrt

Hi .. yes, rather ridiculous. 😑😖 More than 5.1 indicates high RA disease activity, I believe. Here’s some info how it’s calculated but if anyone has anything more recent, please post but I believe this is current:

arthritis-health.com/glossa...

There is a DAS info page on the NRAS site but it’s under review it says.

This might be of interest re assessing joints too:

clinexprheumatol.org/articl...

The “rule of thumb” pressing your finger joints between their thumb and finger/that method of assessment still applies even though the article is old.

My rheumy could object to the DAS 22 without ankles and feet but it would need a national objection of rheumys etc to make a difference. I said ... from little acorns .. and she laughed. She is understanding of my dislike for it though. I understand there was a DAS 44 which included feet but not for some time. I’ve had RA since 1995 and I was shocked to learn feet and ankles weren’t included so it’s been DAS 22 for at least 28 years when I was diagnosed.

I tried to find you some other DAS articles but they were all too old or long winded. They do add the CRP/ESR result but as we know on here there are some people with a low CRP/ESR blood test results who are still at a high level of joint inflammation. RA disease activity in the joints doesn’t always present itself as hot, tender, swollen but usually does especially in the early days/onset. There will be exceptions to the rules and I hope a sensible rheumy would have discretion too where scans which can see inflammation are also used as evidence. Mine did for my diagnosis as I was stiff, immobile and felt generally awful and lost lots of weight. An isotope bone scan in 1995 proved I had RA as it showed “hot spots” of inflammation which correlated with my pain and stiffness, and then a couple of weeks eeks after that my joints became red, hot and swollen. They used to itch/tingle a lot which I was told was a sign too. I hope next appointment they can examine you ftf.

Chrt profile image
Chrt in reply to Neonkittie17

Hi n/k thanks so much for ths. I.m just off to bed as an hour ahead of you so it,ll be tomorrow when I go thru this but quickly either my hand/feet joints sometimes knees get itchy every day. I,ve been thinking for awhile preds are just keeping it at bay. G.night & thxz once again :)

Neonkittie17 profile image
Neonkittie17 in reply to Chrt

You’re welcome. Hope you’re soon feeling much better.

Chrt profile image
Chrt in reply to Neonkittie17

Hi n/k those links are so good much appreciated, I didnt know anything about das or even heard of it at all. Iv,e only gone thru 1st link & quickly thru 2nd that needs more time. As for feet not being included have no understanding of that at all, madness! Thats why then he started with ankles & worked his way up with the doc there looking at them & reporting what they looked like, although he did ask about my jaw which does hurt sometimes. Your rheumy sounds great hope she tries to push them to be included. Mine started with hands red hot swollen all over & couldnt open them & feet the same. Bloods came back march/2021 Immunology

Antibodies ANTI-CYCLIC CITRULLINATED PEPTIDE AB. * >250 U/mL [ < 20 ] which doc said reliable test for ra & positive. (Rheumy asked for result of blood tests taken couple of wks ago nurse said 5,5) When I finally got preds down sometime in June/2021 second day without them had massive flare, only elbows & 1 shoulder not affected. Next day doc puts me on another high course of pred but only get down to I a day. Since mid Feb another dose high preds due to flare which was left knee right shoulder, now down to 1x5mg dailywhich rheumy said for another 4 mths. Now I have better understanding of things I think its difficult to assess me right now because of the long time taking preds. My hands/feet haven,t been much of a prob for quite awhile & right now no swellings just itchy hot at times & niggly pain that goes with coproxamol. No chance for time being for ftf. The rheumy here is from UK, before covid he would come evry few mths but now its only video due to backlog in UK, Gibraltar is too small to have its own rheumy.

28yrs is a long time living with ra but sounds like your rheumy is really on the ball I hope this one of mine turns out to be as good as yours it was only 1st appt after all. Thanks for all the info n/k17 very kind of you to take the time :)

Neonkittie17 profile image
Neonkittie17 in reply to Chrt

You're welcome. 💗 Sorry I’d forgotten you were in Gibraltar. I do recall you before. It’s so bewildering to get on board with everything especially if fairly newly diagnosed. I’ll reply again to you as have a deadline in something this weekend.

Chrt profile image
Chrt in reply to Neonkittie17

Hi n/k no worries you keep on with your deadline, good luck with it :)

Neonkittie17 profile image
Neonkittie17 in reply to Chrt

Thank you I’ll be back Monday!

Neonkittie17 profile image
Neonkittie17 in reply to Chrt

Hi again this is the final article was looking for a couple of days ago. It is from 2016 but has some history of the DAS and it’s relevance/appropriateness ( ... or not!) I hope you stay steady and your hands and feet sound to have calmed down. I hope the Mtx and Hydroxy hold off the RA symptoms and jeeo it from being active. 🙏🏻💗

clinexprheumatol.org/articl...

Chrt profile image
Chrt in reply to Neonkittie17

Hi N/k thanks so much for this & your help. Feeling very positive & I, sure it,ll work :)

Neonkittie17 profile image
Neonkittie17 in reply to Chrt

You’re welcome. I wish you lots of luck and hope things go well for you. 🙏🏻💗

Chrt profile image
Chrt in reply to Neonkittie17

Aww thank you!! I,m sure it will :)

FarhanaM profile image
FarhanaM

Hi,Are sure you haven't got Reactive Arthiritis? This usually follows an infection elsewhere in body, and not usually visible swelling much nor elevated CPR levels unless tested early on. It is absolutely delibertating, but a course of steroids usually helps for a certain time, although as you taper down pain and inflammation returns. Mine is following a UTI, in hip tendons, feet, ribs and shoulders. Waiting for DMARDS (Sulfasalazine) to kick in. Im under the care of Rheumatologist. Im in UK and thankfully i have private cover otherwise NHS would be months

Chrt profile image
Chrt in reply to FarhanaM

Hi Farhanah, well 1st dr was private he took bloods & said results were positive for ra, he had a consult with rheumy who confirmed it. Then I went nhs who also did blood test, dr there said positive for ra. Few wks ago hossy did more bloods before my consult with rheumy, nurse said yes positive for ra. Rheumy asked nurse something about blood result & nurse answered 5.5?? When I first went both hands/feet very swollen & put on hydroxy & preds but when I finally got off preds had a massive flare so put back on high dose & since then taking 1x5mg daily except for couple other flares when back on high dose then tapering to 1. But now starting mtx on Monday alongside hydroxy & pred. Nobody has mentioned reactive arthritis so I don,t know. I hope your Sulfasalazine kicks in asap & you are not in too much pain waiting for it. I,m in Gibraltar but without private cover unfortunately & while I could afford docs fees no way I could pay for scans/xrays & blood tests on a regular basis some of the medicines are so expensive too! But I,m happy to hear youve got private cover & hopefully your treatment will go speedily & smoothly, thxs for info reactive I,ll mention it to nurse next time I see him :)

Green230461 profile image
Green230461

Never had a video! Next time sit really still they will think the video has frozen and you will get a better appointment ❤️

Chrt profile image
Chrt in reply to Green230461

Hahaha green good idea :D :D

Runrig01 profile image
Runrig01

unfortunately 20 mins is the standard time for appointments, and that factors in admin time, such as dictating notes and organising prescriptions or tests. The DAS (disease activity score), does not include feet, which is probably why less focus is given to these issues. However, the treatment is the same. It does sound as though he’s listened, tweaked your medications and set a realistic time frame for review. Unfortunately they are unable to issue appointments for your X-ray and bloods, but send the relevant forms to the department’s who should be in touch. Often they will allow your GP to order and monitor your bloods, this is what they refer to as shared care. Clearly they could havd explained things better.

My rheumatologist is dreadful, I have ankylosing spondylitis, with peripheral as well as spinal symptoms. However if I complain re hands or feet, he refuses to even look at them unless I’ve seen gp about them first. My GP was furious as his job is looking at joints. It delays my treatment by months till my next follow up. I live in Kent but was diagnosed in Leeds, as 5yrs of seeing the local team, they kept dismissing it could be a connective tissue disease. Leeds diagnosed me very promptly and were horrified at the lack of testing. Unfortunately I had to be referred back locally for biologics, due to funding you have to be local. Otherwise I’d happily commute to Leeds 3-4 x a year.

Chrt profile image
Chrt in reply to Runrig01

Hi M/gibson yes so I,m learning from what yourself & others have told me even so its such a short period of time for a diagnosis. Saying that due to flare & just tapered down preds to 1x5mg daily there is no swellingsfor him to see at the moment just some tenderness in various places. Agreed he has tweaked meds & 4 mths to seeing him again is fine as mtx can take 12 wks to kick in . Can.t say he listened tho but must have read my notes as only thing I got to ask was what do I do if it doesn,t work & pain comes back!!! Good enough tho he did say I had to come back to clinic or a&e & both nurse & doc with me in clinic said same thing insisted on it. If there is a next time I will do that, in the past I.ve tried to ride it out.

Gosh sounds awful. cant you make a complaint about him to somebody? Of course all the delays make things far worse so sorry for you , you must be demented by all the toing/froing I,d be at my wits end!! :( Don,t suppose a move to leeds could be on the cards?? only joking :D :D Hope things get better & easier for you :)

Runrig01 profile image
Runrig01 in reply to Chrt

Actually my daughter now lives in Leeds with her husband 😂. She didn’t at the time, which was unfortunate as I had to stay in hotels. I made the use of the time there for retail therapy. Once hubby retires a move to Leeds May we’ll be on the cards. I think they would need support with any future grandchildren’s day to day care, so they could work. So you weren’t wrong 😂🤗

Chrt profile image
Chrt in reply to Runrig01

There you go then Maureen perfect solution for all lol I,m sure your support would be invaluable to them how great would that be :D :D

Neonkittie17 profile image
Neonkittie17 in reply to Runrig01

Chapel Allerton, Leeds is an excellent place. Leeds was my home town for 30 years but now my local hospital is a 1.5 miles away and my rheumys are originally trained and worked in Leeds and my biologics rheumy is brilliant. I always take her an update or email it if it’s a phone review with list of meds and supplements and a full current details so she knows the priority things at the top of it and it saves time too.

Runrig01 profile image
Runrig01 in reply to Neonkittie17

I initially went to see Sarah Mackie, my first appointment, it had been snowing and I was the only one in clinic. So I seen her and an ophthalmologist who ran the clinic with her, for 3.5hrs. My local team wouldn’t accept my GCA symptoms. She contacted me through the charity’s forum, after I posted a picture of my tongue with vascular lesions. She agreed I had GCA, after doing special coloured ultrasound on my temples, but felt there was more than polymyalgia causing the pains. I explained to her about my ribs and pelvis at night, which led her to suspect spondylarthropathy. She did an X-ray of sacroiliac which showed the fusion, and said she thought I had AS. She then referred me to Helena Marzo-Ortega who went through my MRI and all the issues, with slipped discs calcifying and the fused ribs. Suddenly everything made sense. Unfortunately she said I had to be local for CCG to agree funding, so was transferred back. The two of them were brilliant, I seen Sarah for around 18 months, it was like meeting a friend for coffee. So easy going. I agreed to participate in some research she was doing, trying to see if they could predict who would get what side effects from steroids. Part of that was a whole body MRI of the muscles, which showed I had myopathy from the steroids. Despite being on a low dose these days, my muscles are still weak, although shielding didn’t help. I would go back in a heartbeat if I could. 🤗

Chrt profile image
Chrt in reply to Runrig01

Between you & neonkitty maybe I should be thinking of moving to leeds lol :D :D fabulous treatment you,re both getting there :)

Runrig01 profile image
Runrig01 in reply to Chrt

unfortunately I’m no longer there, but the standard surpasses any care I’ve had locally. I was initially referred back to n ESP Physio who worked for the AS charity NASS. She’d set up an AS clinic, where each visit she took our measurements, and gave us an iPad to calculate our Bath scores, which tells them disease activity and function. Unfortunately she left after about 9 months, and the rheumatologist dismantled the clinic she set up and won awards for. No measurements recorded now, asks 2 out of the 10 questions re disease activity and function, and plucks a number out of thin air. I now get measured yearly at a different hospital because I complained, as my chest expansion has deteriorated to zero expansion due to lack of monitoring, it wasn’t picked up. He’s in his 40s yet acts like he’s about to retire.

Chrt profile image
Chrt in reply to Runrig01

But in the future you never know eh? So many things to cope with! How can they get away with lack of monitoring??? Its not good enough I dont know how you cope! I,ve never heard of most of these things das score/esp physio/bath score & thing is my brain isnt working well, hasn,t been since all this started & it seems clear you yourself has to keep on top of everything making sure nothing is missed. I keep saying I know but I don,t know how you all cope!!!! I can,t wait to start mtx tomorrow & start to feel normal asap as looks like I.m going to need my wits around me, right now they,re on extended holiday lol. sounds like your rheumy should retire hehe. Hope things stay on track for you :)

Runrig01 profile image
Runrig01 in reply to Chrt

good luck with the MTX, hopefully you’ll be lucky like me and get no side effects. I was a nurse in the nhs frontline, so have been able to use that to my advantage. It’s often forums like this you learn so much more than you to from your experts.

I had a severe stroke at 52, due to an adrenal crisis, so had to retire. I was thrombolysed and recovered well physically, but have been left with serious memory issues. I was award sister, so I was always having questions fired from all directions whilst trying to give care. I could no longer cope, as soon as someone interrupts me, I forget what I was saying. Not good when you’re speaking with patients or relatives 😂. Thankfully I’m a very positive person, and don’t let anything get me down. Take care 🤗

Chrt profile image
Chrt in reply to Runrig01

Thanks very much & hope you continue staying well :)

Neonkittie17 profile image
Neonkittie17 in reply to Chrt

Well, I’m just on the Leeds periphery and go to a small hospital as suits me much more and as said my rheumys are from Leeds but my immunologist is in Leeds. It’s only 10 miles from my home. Local hospital a short car ride. Yes my treatment is pretty good .. some times the Secretary is inundated but the email system works much better than the phone.

Chrt profile image
Chrt in reply to Neonkittie17

Oh that sounds good then, keeps stress levels down not too much travelling all goes a long way towards helping us manage our diseases, I,m pleased for you. Long may it continue & you stay as well as you can :)

Bethany02 profile image
Bethany02

Wow actually can't believe anyone can have a video diagnosis utterly ridiculous hospitals are open

Chrt profile image
Chrt in reply to Bethany02

Hi Beth yep agree not ideal at all but I live in Gibraltar & we have a visiting rheumy from UK (dont have resident one due to being too small) who used to visit every few mths but since covid only doing video conference due to backlog in UK :(

Sinderella profile image
Sinderella

Hi, I didn't understand who told you not to say anything but for future consultations ask as many questions as you like. Don't wait for them to ask you. Just remember that you are the patient and the focus of the consultation. You and your questions matter. Interrupt if necessary but make sure you get whatever information you need. You are the only one who knows how this disease is affecting you. Pain levels, restrictions to your life etc. so please tell them in a calm way. Good luck with your meds, I hope they work for you.

Chrt profile image
Chrt in reply to Sinderella

Hi Sinders, it was a video consult, the nurse at the rheumy clinic explained how it would go before I went in. Rheumy doc would ask about what meds I was on etc then exam would start with my hands, go on to my ankles & work his way up body and at the end I would be asked if I had any q,s Was told not to interupt rheumy before the end of exam. And thats exactly how it went, I asked 1 question then time was up rheumy doc was gone from screen! Next appt in 4 mths lets see how that goes,, thxs for the good luck I,m sure it,ll work :)

bienassis profile image
bienassis

Hello Chrt

There really is nothing like a face to face. Not just for rheumatoid disease - most other diseases need the same. That video does sound disappointing. Perhaps I'm rather out-of-date having been diagnosed in 1967 when such methods were unheard of.

As far as methotrexate is concerned, I can be encouraging. My introduction to the drug didn't occur until 1998 and it was a game-changer!

I stiil take it - since 2015 by injection - and although I've had a couple of mild flares in the original joint which started the whole shebang so long ago, the drug has worked for me.

So much more choice now, of course, but give it time to have an effect. It is probably the least obnoxious drug in use (well tried & tested) but patients do vary so not all will respond positively.

As for the DAS measurements - I've never had much faith in them. I would also add that X Rays are not the best way of assessing the effects of rheumatoid disease. Ultra-sound Scans are more revealing - but more expensive than X rays, unfortunately, as they take longer and rely on a doctor. That's my experience.

The Best of Luck - bienassis

Chrt profile image
Chrt in reply to bienassis

Hi Bienassis, thxs for replying. you,ve been living with ra for a very long time & you must have seen a lot of changes since then! These video conferences are new, only since covid but here in Gibraltar its the only way as we dont have a resident rheumy, just one who used to come every few mths from UK. 25 yrs on mtx thats incredible & really pleased to hear its done the trick for you all this time its so good to hear :) My sister was diagnosed with ra mid 70.s I dont know what drugs she was on only she used to have gold injections & always on preds. You,ve probably tried most if not all meds going for ra, not very nice experience I,m sure :(

I start mtx on Monday & am bit nervous but also a little excited as I may get back to my normal self. hearing you & others experiences has given me a lot to look forward to :) I only heard for the 1st time about das last night from another member here & Ive no idea what score he,s given me as it wasn,t mentioned to me. Neither was what type/kind of xrays mentioned soI,ll go back to clinic next week & find out. Thank you much appreciate you telling me how well mtx is keeping you in remission & long may it continue :)

Sheila_G profile image
Sheila_G

Well I don't know about video calls but it wasn't polite or sympathetic. They don't have the time for a friendly chat and a coffee but manners don't waste time. You have got some treatment now so that is good. I hope it works for you.

Chrt profile image
Chrt in reply to Sheila_G

Hi Sheila thanks so much I hope so too, no reason why it shouldn,t :) Agree with you it was pretty brutal, he could have asked what had been happening or how bad thinga have been. But as you say I,ve got more treatment that works very well for lots of peeps, down for regular bloods & xrays & I,ll be properly monitered which is so important. I wonder if its because I was referred by gp 19mths ago & when I went to dr with this flare in mid Feb he told me go straight up to clinic (our health centre is in our hospital ground floor) & to tell them he has sent me up & he is very disappointed & angry I,d still not got an appt, also tell them if I didnt get an appt to go up to complaints. Thats how I got this appt. Maybe rheumy dr was wondering how/why I,d not been seen, bit of flapping going on with nurse on computer, he asked me twice when I was diagnosed. Who knows, its done now & I know what to expect at next appt so I,ll be prepared it, could even go better! lol :)

Sheila_G profile image
Sheila_G in reply to Chrt

It could very easily be better. I hope so.

helenlw7 profile image
helenlw7

my first appointment was face to face because it was in 2004. I was in the hospital for 3 hours, over an hour with the dr spread over two sessions. I also had blood taken and chest and hand x-rays that morning between seeing the dr. I was prescribed mtx and folic acid plus one other med, forget which one. I was given wrist splints, told to ha weekly then fortnightly blood tests and take a urine sample to my fortnightly RA nurse visits.

Boxerlady profile image
Boxerlady in reply to helenlw7

Those were the days!

Chrt profile image
Chrt in reply to Boxerlady

shame we can, t bring em back!!!

Thequietman profile image
Thequietman in reply to Chrt

l was diagnosed in 1972, in those days consultants came to my home, last visit was in the eighties. Unheard of today unless you have pots of money. Still attending same hospital, yes, l have had lots of different meds, now on Biologicals and doing 👍🏻

Chrt profile image
Chrt in reply to Thequietman

Hi q/man gosh thats treally top notch VIP treatment how fab was that!! :) You.re right never going to happen these day lucky to get an appt... my sis was diagnosed around 1975ish dont recall her rheumy ever coming to her house, I lived 2 doors from her. Very pleased you are doing well on biologics must have been very challenging for you coping with it all these yrs. I started mtx this morning & I,m very optimistic it,ll do its job :)

helenlw7 profile image
helenlw7

They were weren’t they, although only had 1 telephone consultation with my consultant during the pandemic, she realised I was in a bad way pain wise so she called me in the next day for steroid injections, and after that I was seen in person every 6 months.

Thequietman profile image
Thequietman

Good morning Chrt, Good luck with the mtx , sincerely hope it works well for you. 💐

Chrt profile image
Chrt in reply to Thequietman

good morning to you q/man thank you so much I,m sure it will being positive :)

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