Face to face appointment with rheumatology nurse today....I stamped my painful feet (metaphorically speaking)

[Moomin8]

Evening Peeps 🙂

Well, what day! Lots of 😭lots of speaking my mind and lots of demands - I'd had enough!

I saw my rheumatology clinical nurse who I usually see nowadays - she's lovely. She asked me how I was....that was it - I just burst into floods of tears 😭😭I'm always wobbly when anyone asks how I'm feeling tbh.

I showed her the photo which I took of my foot/ankle at the weekend - she said that it looks really painful. I told her that it's either one, the other, or both! She looked at at my hands/fingers and I told her how my left shoulder has been really sore and has limited movement (since 2015!) which also restricts movement of my neck!

She looked at my blood results and said that even after having 7 days of 20mg Prednisolone, my ESR is still 60 - no change 😒She also looked at the cholesterol blood test results and has written to the GP regarding that.

I asked for xrays on my hands, feet/ankles and left shoulder. I asked to see a podiatrist and to see a physio. All of which she has now organised - I have to call radiology in a couple of days to arrange when the xrays are done, apparently. She gave me the usual steroid injections in my bottom cheeks 😊. She suggested that I also have an injection directly into my left shoulder joint....boy oh boy!!!! 😱That really, really hurt!!! It made me cry out in pain!!! She told me that it will be painful for a day or so, but would hopefully give me some mobility- I was given some exercises to do when/if I get some movement back. My Metoject has been increased from 20mg to 22.5mg weekly on my request.

I was in there around 45 minutes!

The rhemy clinical nurse told me that, on average, Rituximab (Rixathon in my case) takes 2 to 3 times to have an effect!! 😭

I then had to return to work...shoulder so painful, stonking headache and feeling wiped out. However, I do feel I was listened to today.

[Angels-delight]

Hi, I feel so sorry for you, you are really going through it, glad to hear your Rheumy Nurse listened to you and gave you the meds that you needed. I hope you will feel some relief very soon. I have pain in my feet and ankles but they are not as swollen as yours are. I know why I am in so much pain at the moment, I have had a kidney infection and yeast infections that just won't go away. Last week I saw a urologist and had a cystoscopy, boy was that painful due to all the inflammation. I am now on antibiotics and another med to help with the incontinence which they feel doesn't help with the infections. I can't go back on my Cimzia injections until the uti clears up hence the RA pain. I feel bad for you and hope that the meds and the rest of your treatment really does help you soon.

Take care.xx

[Moomin8 in reply to Angels-delight]

Thanks for your reply 🙂Sounds like you're going through the mill as well 😔I used to be on Cimzia some time back - it worked for just over a year. Hope you get some relief soon x

[Angels-delight in reply to Moomin8]

Thanks for your reply. I am watching Wimbledon and England football today, trying to take my mind off my pain. Good luck with everything I hope you feel better very soon xx

[helenlw7 in reply to Angels-delight]

My blood test that I had last Friday showed an ESR of 60. A good rang up on Tuesday asking me to go for a repeat test in 2 weeks. Out of the blue my rheumatologist, a lovely lady, rang out of the blue. She’d noticed my blood results and wants to see me on Tuesday morning!

[Angels-delight in reply to helenlw7]

That's great news, not that your test results are high but you are getting the help you need and not being ignored. I had the same problem with a previous Rheumy and I changed to another Rheumatologist, he has done more for me in the last year than my previous Rheumy did in over 4 years. I am so glad you are getting the help you need.

[helenlw7 in reply to Angels-delight]

Thanks. Still can’t have a f2f appointment with my gp about my extremely painful back though!

[Angels-delight in reply to helenlw7]

I have seen my doctor twice as she said it is necessary and she was unable to diagnose without a f2f appointment. My sister in the UK has seen some doctors f2f and others on the phone so I guess it depends on the doctor and what they consider to be necessary f2f.Sorry to hear that, did your doctor prescribe anything for your back pain.

[helenlw7 in reply to Angels-delight]

I’ve been on dihydrocodeine for a few years and I’ve noticed it hasn’t really been working on the RA pain. The dr changed it to co-codamol and to up my amitriptyline from 30mg to 40mg, 20mg in the morning and 20mg at night. Strangely taking 30mg at night didn’t knock me out, but 20mg in the morning has me dozing in a chair for about 3 hours!

[Moomin8 in reply to helenlw7]

Oh no! 😴

[Angels-delight in reply to helenlw7]

I was on cocodamol several years ago and it effected my white blood count and I was told not to take it again. It did help with the RA pain.

[Moomin8 in reply to Angels-delight]

I can't take cocodamol, it makes me feel really poorly and spaced out!🤪

[Angels-delight in reply to Moomin8]

I was on a high dose and it didn't space me out. Most of my RA meds do though and I am on a lot of meds including biologics injections, I am always sleeping on and off throughout the day. I am waiting for the uti to clear up and I can stop the antibiotics and get back on Cimzia. I haven't been on it long enough to know if it is working for me, just that I am in such a lot of pain right now. Good luck I hope they get you sorted out soon. Take care xx

[Moomin8 in reply to Angels-delight]

Hopefully you'll be up and running soon x

[helenlw7 in reply to Angels-delight]

I was on the max dose of dihydrocodeine and will be on co-codamol. I’m also on mtx, Enbrel, a biologic, and permanent steroids. Until I had my first Covid vaccine I never fell asleep in the day unless I was in a flare.

[helenlw7 in reply to Angels-delight]

I was on it many years ago for my back, but was stopped in 2002, 2 years before I was diagnosed with RA. If it could just give me a bit of relief for a short while it=would be good.

[Moomin8 in reply to helenlw7]

Keep trying...hopefully you'll get one soon 🤞I'm finding that unless I make a nuisance of myself, I don't get what I need - shame really that we have to be like that.

[Moomin8 in reply to helenlw7]

Wow! Hope you get sorted x

[Moomin8 in reply to helenlw7]

Very attentive!

[Hidden]

🥺poor you . Sounds like a lovely nurse. Hopefully things will move forward now and get your feet the much needed help x

[Moomin8 in reply to Hidden]

🤞

[Mmrr]

As you say, what a day, buttery encouraging that you were listened too and action taken.Sleep well.

[Moomin8]

Thanks

[Snackjack]

Thank heavens that you have someone who has listened to you and is doing all she can to get you the help you so clearly need. Try to relax now and hope that you get a good nights sleep. Best wishes xx

[Moomin8]

Thank you x

[Lolabridge]

Thank goodness she really listened and has actioned things to help you. She’s right about the cumulative effect of Rituximab- I have found each new cycle even more effective than the last. I had to have steroid shots into my shoulders and they really worked very well so I hope yours does too.

A good night’s sleep should help you to feel better in the morning but try to continue to take things easy if you can. X

[Moomin8]

Thanks 😊

[charisma]

We carry on going even when pain from RA is as bad as that… but if it was some other cause we’d be signed off work. If possible, taking a break like that would probably give the body a chance to rest and repair.

My first round of Truxima brand RTX had no effect till 14-15 weeks after, and it was very inadequate though eased some of the widespread pain. I was on Prednisolone tabs as the jabs in the bum had no effect.

The second round made a difference within days from the first infusion. Felt almost normal apart from continuing exhaustion after activities that still comprise only a fraction of pre RA capabilities.

Hang in… hope some relief comes soon. x

[Moomin8]

Thank you for your kind words and encouragement 😊x

[Klutzy]

It’s wonderful you were listened to and treated with empathy. It sounds like you’ve had a difficult time, so hopefully you’ll feel better soon.

[Moomin8 in reply to Klutzy]

Thank you 😊

[Gilliancheche]

I have a lot of problems with my left shoulder too. I had both steroid in bottom then an ultrasound guided one in my shoulder. Wasn't terribly painful for me. Took a day or two but the pain did go. Getting movement back has been slower. Don't push the exercises to quickly, wait a bit then go steadily. Mine was heaps better until I had 2nd covid jab. Still better than before steroid injection though. Good luck

[Moomin8 in reply to Gilliancheche]

Thanks for the good advice. My first covid jab made my shoulder flare terribly! I has the second one in my right shoulder, which isn't inflamed and thankfully had no pain at all afterwards!

[Katie-Mag]

We’ll done Moomin! Great to clearly and specifically ask for what you need, pleased you were successful. Hope you feel much better soon!

[Moomin8 in reply to Katie-Mag]

Thanks 😊

[madme1]

Well done Moomin8 it does no harm for you to stamp your feet and demand action. Not recommended for your sore foot of course! I'm still waiting for rhuemy team to ring me back to try and get my infusion back on track after not having one for two years. I've been in agony with cysts on left kidney and a stone in the right. Gp basically wrote me off, saying you have a stone in your right kidney, you can't have anymore antibiotics because of those you've had in hospital and I won't refer you to urology consultant til I hear what rhuemy say, so get on with it. Sod that, I phoned 111 on the Sunday, got sent to hospital and was referred to urology through the back door. Doc there said they know about this stone you need that infusion, so I'll contact your gp and basically give them a kick up the backside to contact your rheumy team and Chrohns consultant you need this and have been treated like dirt.

[Moomin8 in reply to madme1]

Isn't it ridiculous how we have to go round the houses to get what we rightfully deserve and desperately need? 🤬 I hope you get what you need very soon 🤞I has to take my sister to a&e a shirt time ago because nobody would even look at her foot - she now has severe plantar fasciitis, so much so, that she is having to undergo drastic treatment and has been off work for a couple of months! Maybe ask to be referred a different rheumatologist?

[madme1 in reply to Moomin8]

I'm changing my gp first, she's not even in the surgery half the time and is a floating gp. My rhuematology consultant is lovely, for my first visit to my first consultant I was given to minutes and a referral to physio. I could barely stand! I was also accused of lying about my symptoms. I asked to be changed to her and was with her for 30 mins, she found the fluid on my knees that 'wasn't there,' and this month she had also sent letters to my gp, my Chrohns consultant etc requesting urgent responses, but I won't hold my breath. Good luck to you and your sister.

[Moomin8 in reply to madme1]

Good luck with your changes 🤞Hooe things improve.

[Birdbeak]

Well done in making them listen to you and how you feel at least you seem to have been listened to as things are being done now. As for the shoulder injections I had them a couple of years ago after a couple of days it felt amazing to move without restrictions and pain and I now only have the occasional attack but clears after a couple of hours. I hope yours works as effectively so think positive 👍

[Birdbeak in reply to Birdbeak]

Sorry no pai in movement

[Moomin8 in reply to Birdbeak]

Thanks 😊 This morning, I'm feeling slightly less pain and a little more movement 🤞I hope your shoulders continue to serve you well 🎾

[Sheila_G]

Poor you. You are really going through the mill. I hope that you have been seen you will get the right meds for you and they start working soon.

[Moomin8 in reply to Sheila_G]

Thanks 😊 I must say though, it would seem that this Rituximab (Rixathon) is going to take a bloomin' long time to pull it's finger out!

[sylvi]

Doesn't it make a different when you are listened to darling. xxxx

[Moomin8 in reply to sylvi]

Absolutely!

[stbernhard]

I am very happy for you that you felt listened to and hopefully action will follow words. It would be great if you'd get targeted treatment to help you be in less pain. I can't imagine what it must be like to go back to work in agony. Sending you hugs and strength.

[Moomin8 in reply to stbernhard]

😊Thanks. I have had so much time off due to shielding, that I feel I owe them tbh. However, work are so understanding, they would never make me feel guilty if I need to be at home due to my RA - I'm so lucky.

[springcross]

Good for you Moomin, I'm glad you had a good f-t-f, your nurse sounds lovely, very caring and sympathetic. I hope things will start looking up for you now. All the best. xx

[Moomin8 in reply to springcross]

😊She is lovely, better the my rheumatologist in her listening and understanding my feelings skills 🙂

[springcross in reply to Moomin8]

I'm glad as I think it makes such a difference in our confidence levels. xx

[Lovetodanceto]

Hey there am really glad you were listened to take careX

[Moomin8 in reply to Lovetodanceto]

Thanks 😊 Speaking to you guys on here, gives me ideas of what I need to be asking for tbh.

[attatel]

That's excellent news, about all the positive action. Very tiring day for you though. Completely sympathise! Had a shoulder steroid jab yesterday as well, then gp in the afternoon for ECG, BP and bloods because of slight palpitations - I reckon it's probbably down to reducing oral steroids but glad the tests have been done.BP fine, ecg looked fine to the nurse but speaking to the GP on Monday to get all the results.

Knackered after all that, as I bet you were!

I hope you see some improvement soon - sounds like you're having a rotten time at the moment,

[Moomin8 in reply to attatel]

Ouch! My shoulder seems less painful today - 2 days later. Mind you, I went to my swimming lessons last night - trawled up and down doing lengths, also did diving for a while at the end! 😅I hope your shoulder feels a little better x

[Angels-delight]

Hi, I just got back from having a MRI it will take 4-5 days to get the results. I am hoping it is the same cyst I had checked whilst still in the UK and not another one that is on my pancreas, not good seeing as I am diabetic. We are all going through the mill right now and it's pouring down again today which doesn't help with RA/D joint pain plus I have fibromyalja. It's just one thing after another. Hope they find a cure for RA sooner rather than later. Take care everyone xx

[Moomin8 in reply to Angels-delight]

Morning 🙂Where are you in the world? I'll second your hope for a cure 🙋🏻‍♀️I hope your results come back as you expect, but also, that you get the support you need x

[annjoy]

This is the first time I have posted so please bear with me! I am almost 85, was diagnosed about 12 years ago and in the past have had an injection in both feet which at the time did help with walking. However, over last 3 months I have had a lot of health problems, the main one being severe anaemia and fluctuating high blood pressure, and I have variously been taken off methotrexate and benepali, also my blood thinners and blood pressure tablets. Having recently seem my rheumatologist I am now back on all RA meds. Over the last three weeks my feet and ankles have become enormous and extremely painful. I eventually managed to see my GP, who said the reason for the swelling is because I am in atrial fibrillation which has made my feel swell and I also have some water in my lungs., so has given me some "water tablets" which have helped a little bit. However my feet are still painful and feel as though they are on fire inside particularly during the night. I can't sleep, they are just so uncomfortable. I raise my feet on a pillow, have a hot water bottle filled with cold water and keep a cold wet face cloth by the bed to keep wiping my feet.I know a lot of you have foot problems but wonder if you might have some advice on how to relieve this burning?

[KittyJ in reply to annjoy]

Annjoy I would write a new post asking this then more people will see it and help with your question 😊 Not everyone reads all the comments.

[Moomin8]

Update - xrays on hands, feet and left shoulder completed ✔physio appointment booked ✔ hand therapy started ✔ just waiting for a podiatrist appointment/letter to arrive...I feel I'm winning on the 'I want' front 😁

[Hidden in reply to Moomin8]

Go Moomin !! Who thought referrals brought so much joy .x

[Moomin8 in reply to Hidden]

Absolutely 😄