Finally Appt with Rheumy Next Wk

[Chrt]

Hi all, hope everyone is well as can be After 18mths am at last going to have a video appt with the rheumy next wk. Apparently my referal had been misplaced/lost? Anyway I was diagnosed 2 yrs ago privately, the Dr had a video consult with the rheumy who also happens to work & visits our nh hospital. He diagnosed me & put me on hydroxy & preds. After 3 mths when reducing preds & just 2 days no preds I had massive flare up so back onto preds but managed to get down to 1x5mg daily & thats what I stayed on till now, along with hydroxy 200x 2 daily. At this stage I went to our nhs & told my Dr there. He ran his own blood tests, which yes came back positve for RA & happy to keep meds the same & he refered me to rheumy at our hospital. Had another flare few wks back so then back on high preds & now reducing preds & down to 2x5mg daily.

So when I went to the clinic the nurse said whole lot of bloods needed 1st & said 3 or 4 times he thinks this is osteo arthritis & anyway why did you go private?? I told him for speed & due to fact it was covid & rheumy wasn,t visiting anymore(didnt know about video links!) He then said something can,t for life of me remember just remember answering him back well look how long its taken me to get an appt here!Anyway he spoke to me very condescendingly. No apology for saying he thought it was osteo, also told him relieved in a way it was positive as if it was negative it meant I,d been taking these drugs for 2 yrs for no reason,

All bloods are fine he said but I am positive for RA, already new that tho. So please can anybody come up with some questions I should ask rheumy? I think maybe hydroxy isn,t working too well but! I was told at private dr rheumy thinks hydroxy is only suitabl dmard as I have asthma & bronchitis. Also nurse only told me I was positive & when I asked about how high he said no either negative or positive? Oh gosh minds just blank so any help as to best q,s I can make a list of would be great, if anyones up for. Many thnks I,m terrified of having to start biologics silly I know..

[Sheila_G]

Sorry this has taken so long for you. It certainly isn't silly to be scared of anything. We are all scared of starting new drugs. I hope your telephone consultation goes well but if you have swollen joints they really need to see them. Good luck.

[Chrt in reply to Sheila_G]

Hi Sheila, thks for replying Not phone its video link we,ll see each other & the nurse/dr in the clinic with me will examine any joints the consultant asks him to & will also be able to see them with camera. Thats how its been explained to me anyway. At the moment I have no swollen joints except a little bit on side of my knee as it went down when I went on high preds couple of wks ago. I do still have pics of my hands tho from before I was even diagnosed I can show him. Thanks for the good luck I need all I can get!

[Sheila_G in reply to Chrt]

Sorry. I didn't register the video bit. Well that's better and if whoever you speak to thinks you need a face to face they will arrange it. Sending even more good luck.

[Moomin8]

Hi, You could ask what other meds are available. Prednisolone is great, but it's not the only other medication to put with Hydroxy. Ask for scans and xrays - including chest xray. They need to see exactly what's going on. Ask to see your blood results too - get them printed out, or sent to you. Ask if there is a clinical nurse phone number which you can call I'd you need advice etc. Good luck!

[Chrt in reply to Moomin8]

Hi Moomin thxs for replying Yes good idea ask all other meds suitable for me! Also for xrays/scans. Last time I had chest xray Nov/Dec2019 asthma nurse sent me after Id had bad cold /cough. Reults showed inflamed lungs & was to go back for another 1 in feb/March2020 of course covid was rife &so didnt have it. But I felt fine so never pushed it. I was going to ask for print out of blood results but the nurse made me feel like he was talking to a child I just clammed up. But this will go on my list of q,s & I will ask , Yes it,s really important I have someone to ring for advice if joints kick off again, In fact Dr told me when I went couple of wks ago there was nothing he could do for me except high dose of preds so where do I go as sure there will be a next time at some stage. Thats when he printed out his referal & told me to go straight up to clinic, tell them he has sent me & he was very angry & disappointed with them also to tell them if I get nowhere with them I was to go to 6th floor & make official complant. Thats exactly what I told nurse at rheumy clinic & suppose why Ive now got appt. Thanks for your help got those down now

[Runrig01]

Hi, sorry you’re struggling. I have asthma and use methotrexate without any issues. One thing to observe between now and your appointment, is your stiffness and movement. Inflammatory arthritis causes stiffness and pain from inactivity, but improves with exercise. Mechanical issues, which includes osteoarthritis improves with rest and worse on movement. So you could use this to challenge a diagnosis of OA, if your pain is better with movement. You rheumatoid factor should have a value, try contacting your gp for it. Prednisolone is marvellous, but not a long term solution. I developed adrenal insufficiency from using steroids for polymyalgia. It was diagnosed after I had a severe stroke due to an adrenal crisis. It’s not known as the devils tic-tac for no reason. Point out your pain improves with the steroids, as it won’t help osteoarthritis much. They are likely going to want to repeat any xrays or scans, as they won’t usually rely on one’s done privately. This is partly because they can’t guarantee they have been performed to the standard set by the nhs. It’s concerning he’s already formed an opinion, having never had any discussion with you. Hope I’ve been a little help for you, and good luck.

[Chrt in reply to Runrig01]

Hi Maureen thxs for replying This flare started with niggly knee pain, after xmas, End of Jan shoulder kicked off all of a sudden couldn,t even lift it & pain was awful. AFter 6/7 dys it eased off & I could use it again but next dy knee kicked off! Could hardly walk & it got orse. Had trouble laying down just couldnt find a comfortable position to put leg to stop the pain, Not rest nor walking eased the pain. Thats when I finally hobble to dr & he put me on high preds. Took a week but pain has almost gone now. It was rheumy nurse who kept saying he thought this was osteo but bloods showed once again positive for RA & now I,ve got this on my list & will add valueof RA next to it. I doubt nurse will mention it again especially as its the same rheumy consultant I, ll be seeing & who 1st diagnosed me with RA but it was when I went privately.

Yes I remeber well your warnings about long term preds & really sorry they,ve caused you so much health problems We,re between a brick & a hard wall! With such excruciating pain I want it to stop like we all do & thats what the preds do. I know the dangers but think I now have to change my mindset. Face up to probably a change of meds with the chance of a flare happening but something in place/advice as to how to deal with it & accept this as part of my life now & do my best not fall back on preds. My mum had polimyalgia too & had 1 pred a day no probs for yrs. My sister had RA diagnosed mid 1970,s died aged 64 in 2004 bed bound for last 3 yrs of her life, Bones all crumbled everywhere, hips, neck, knees jaw etc long term use of steroids, She had many new joints put in over the yrs some taken out due to allergic reaction it was horrendous for her. I hear you & yes you,ve been a great help thank you!

[Runrig01 in reply to Chrt]

Good that you’re seeing the same consultant. I thought you meant the nurse was saying the Consultant suspected OA. I ended up getting GCA as well as the polymyalgia, as they are connected. So ended up on high doses of 60mg tapering down over the months and years. It was only when I went below 7mg the adrenal insufficiency symptoms started, but took 15 months to come to a head.

I empathise with flares. I’m currently off all my immunosuppressants, with a wound infection. I injured my ankle 8 month ago on my allotment and it still hasn’t healed. It now has pseudomonas in it, which can be quite difficult to treat. I’m on an antibiotic that can cause tendon damage, and currently have severe pain in my shin bone, so hoping it’s not the tendon. That’s on top of all my usual pains that have flared, hatff do ly anywhere doesn’t hurt. Hope your nhs appointment goes well, and that you gets meds reviewed to ones that will help more 🤗

[Chrt in reply to Runrig01]

Oh for goodness sake that must be so hard on youMaureen as if you haven,t got enough on your plate!!! Don,t know how you cope being off the immunosuppreeants hope you r getting good pain relief otherwise what such a bad time you,re having so feel for you! Would manuka honey sterile dressings be any good for your wound? My sister had them when her wound was infected with mrsa & they cleared it up, helped it heal nicely, Hope you can get it healing asap & start to feel better pronto

[Runrig01 in reply to Chrt]

thanks. I have a butec pain patch, but it doesn’t really help the severe flare pain. I keep meaning to ask the nurses if they stock the Manila honey dressings. I suspect I’d need to be referred to tissue viability for that. Problem is I’ve been saying since the new year I suspect it’s infected, as the pain had suddenly escalated. They keep dismiss because it doesn’t look infected. It’s red and inflamed but not hot to touch. I keep trying to explain bring on 5 immunosuppressants masks many symptoms and that often only pain and stalling of healing are signs. Ended up putting my foot down and insisting they get the duty dr to look at it. Dr said straight away, it’s clearly infected and needs antibiotics. Unfortunately it’s come back with this bug known for being stubborn. Thankfully I’m medically retired, so can put my feet up when I need to. Thankfully I’m a fairly positive person, and don’t let things get me down. It dies worry me that my rheumatologist will say to stay off meds till it’s healed which could be several months yet. You take care 🤗

[Chrt in reply to Runrig01]

As if it isn,t hard enough trying to live with these health probs but then having to find strength/energy to fight just be heard! My sister was aready in hossy when hers got infected I mentioned it the registrar a few times but got waved away. So I printed off the papers from Aintree Hospital about them & waited all morning for her to come onto the ward & gave them to her. She prescribed them following day & mysister had them on her wound same day. Try to remember ask nurses about them, worth an ask no? Put a yellow sticky note on your forhead hahaha yes important to stay positive & also rest when needed hope you get relief soon for the pain & not too long before u get back on your normal meds, u take care too

[oldtimer2]

Have a look at the treatment pages on the NRAS website for ideas about treatment options so that you know what they are talking about. nras.org.uk/resource/drugs-...

But it is very dimissive of the consultant to label your problems osteoarthritis on the basis on such little evidence. Again, look at the website and see what the differences are, or you may be fobbed off with just 'live with it' rather than the treatment you need.

[Chrt in reply to oldtimer2]

Hi oldtimer thxs for replying No it was the rheumy nurse at the clinic who kept saying he thought it was osteo, really spoke to me me very condescendingly as well I,m pretty sure there is no doubt it is RA as the blood reults were positive once again, Hope he keeps his thoughts to himself now, worry is tho as he,s the nurse in charge of the clinic it,ll be him I,ll have to see sometime in the future. Yes good idea never thought to look for the link for options so will do that shortly & maybe I,,ll find something else to add to my list of q,s for options of treatment, Thxs muchly for your help

[oldtimer2 in reply to Chrt]

A little knowledge is a dangerous thing sometimes. I have found that newly qualified nurse specialists are either extremely careful and thorough, or feel that that they now know it all and can patronise you. There is a difference between being competent and 'expert'. Actually the same applies to newly appointed consultants! I've been around too long.....

[Chrt in reply to oldtimer2]

Indeed it is! ^I've been around too long.....* you & me both hehe did make me laugh tho oldtimer I,m just new to all this ra palaver business. Think I,d prefer careful /thorough type than know it all seen it all type which he appears to be but it,s early dys so benefit of the doubt. I,m going to concentrate on my q,s & making the most of my consultation, Ive been told he is very nice so that,ll go a long way. he,s based in the Leicester area by the way

[Gottarelax]

I'm sorry you're having such poor care! As Maureen said, prednisolone isn't a long term solution for rheumatoid arthritis as irreversible joint damage may still occur. My clinic are very clear that they only give me 4 week courses as a sort of pep up while we are trialing different RA drugs. Both the nurse and the consultant rheumatologist are keen that I don't mask RA with steroids but get on a proper, disease modifying drug regime. I was very worried about side effects of drugs MTX but so far I've been fine and I think that benefit of finding a drug that will actually prevent damage far outways the risk of side effects. If you do go on these medications, you should be carefully monitored as I have been. I feel fine but occasionally a blood test will alert them to something to keep an eye on but nothing serious as yet. I would be more concerned about long term effects of prednisolone and irreversible joint damage than the RA drugs.

[Chrt in reply to Gottarelax]

Hi gottarelax thxs for replying Yes I know deep down long term they,re not the answer. A couple of yrs ago before my diagnosis you would,nt believe how anti I was towards them after seeing damage to my sister after long term use. Different matter when it came to taking them or excruting pain & being unable to function. I ran my own dog boarding kennels & had my own dogs too, also adopted/fostered dogs from local rescue with a lot of health probs & I would track down alternative treatments with quite a lot of success & only use preds as last resort & had great rapport with my vet who would agree try alternatives out. I, closed my kennels last october & told rescue I can,t care for any more dogs because of all this . I,m pretty confident that now I,m in the rheumy system properly they,ll be on the ball & hopefully find another drug that,ll knock this disease on its head put it in its place, stop it in it,s tracks & stop giving me such grief!! I,m an optimist usually so I,ll go with an open mind. Actually putting all this down I,ve realised its not the drugs I,m scared of its that level of pain & disability coming back that terrifying me. Knowing preds make it go away shoves the downside of them away. Lets see what he comes up with next wk hopefuly I,ll be like you with it under control soon, Thanks muchly