RTX update, my hands are the worse they ever been, when i contacted my RA for advise this is what the sectary said to me
"We are unable to provide you with an answer to this as each person responds differently to medication. We have asked you to allow the medication its timeframe and then you will be reviewed. If your email frequency does continue, we will have to issue you a warning which I am aware has been done previously by previous managers. Please speak with your GP in the interim regarding any advice or support you may require while waiting for your appointments in May." !!!!!!
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pammi2
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Oh dear, don’t blame the Secretary…..she just sends a standard reply in the circumstances, . Yes it is very disappointing to get answers like that, especially when you are in pain.
But have you been asking the same question a few times?
Why don’t you do as suggested &make an appointment with your GP to talk things over?
RA management is a long haul journey ….so try to look forward to the Rituximab working for you very soon.
the GP will give me more steriods, they always say what does your rhuemy says. yes i asked the secretary before about hand pain, then i had issue with the eye then more hand pain but who does she think she is, she is not medically trained to understand my pain. i asked her a question which was "why do my hards hurt so much more than they ever do before" and that was her reply
Does your rheumatology dept have a helpline telephone number or email address? You can check this on the hospitals web site under rheumatology. It's not the Secretary's job to answer your questions for obvious reasons so don't badger her. See your GP is another suggestion.
i used to contact nurses on phone line, they would take aobut 4/5 days to reply, then i use to email them, then the secretary said dont email them they got too many emails, emial her and she will pass the message on. so if i have an issue or concern i have to email her the secretary
Oh I’m sure that Secretary won’t have taken it upon herself to write that reply…as you say she is not medically trained…... it will have been issued from the RA management team …..As a secretary she will have to answer questions all day…..& it has been decided to use this statement.I agree it is not of much help to you. But do you have rheumy nurse help line? Maybe that would be of more help?
last time a rhuemy nurse called me i had sent all my hand problem and wrist problem images to the so called secretary and the nurse said ok, what is wrong, i said have you seen the images, she said no, so she said ok, start from your little finger what is wrong, i said you want me to sit her in pain and go through every finger to tell you what is wrong when i have sent images of my wrist, she said she would call me back SHE NEVER DID
Rituximab may take a while to work for you and I found that each infusion had a cumulative effect for me. I do still have some hand issues but those are due to carpal tunnel syndrome and I see an Orthopedic Hand Consultant for those and may need minor surgery soon.
I do recall that before I was given RTX, keeping my hands warm, wearing compression gloves and having some hot wax treatments were all helpful.
what i dotn under stand is how after having my RTX would my hands bee even worse than they have ever been in my 15 years of having RA. makes no sense to me whihc is why i asked the questions
I had assumed you will have had to stop your previous RA drugs some weeks before starting the RTX. Ceasing your previous drug would allow your RA symptoms to escalate before the RTXwas working well. I think perhaps that over the past 15 years the RA drugs will have worked to some extent but not fully alleviated continuous but slow deterioration in your hands, which is why they now seem worse than before.
im my eyes i have had big deteriation in my hands over last 2 years where it can be physcialy seen, yes previous drug didnt work had it for five months but i am getting worse every day thre is never a day where my hands are ok
I am sure this reply was hard to read, but it really isn‘t the secretary’s job to answer these questions. If you were asked to give the drug until your appointment in May then that’s the plan unless something catastrophic occurs.
i agree it is not her job to answer the questino but that was her repluy, it wasnt "let me chekc with the nurse and come back to you " but it was a straight reply
I completed my second round of RTX recently. I did think for a short while after that my wrists and MCP joints were flaring up again but now they seem to have settled back down. Maybe it's something that happens as the stuff does its job, I don't know.
My problem right knee now feels less swollen so that's a positive sign as it hadn't improved after the first round. Already got an appointment through for my 12 week review in June so I think it's just a case of seeing how things go until then.
that is th answer the so called secretarty shoud have told, me, sometimes things will get worse before they get better, this is normal. after all they deal with this evry day and it is their job to reassure us that what is happening to my very painful hands is normal but no she had to come back with a reply like that, I am spending my time as i will reply to her
As I explained it was probably a Rheumatology Department decision to compose that statement for the department secretaries to read out. I know we all think we are the only one to ask a unique question …..but when you think about it, the secretaries get these questions all day long…& having a written statement saves them entering into discussions they can’t possibly answer. .
I also had no benefit from 2 Rituximab infusions … the 1st last November and the 2nd early December. I’ve been abroad for 3 months and eventually I caved in and bought prednisalone otc … which ( as expected) relieved all the pains in my hands wrists shoulders and knees within 24/36 hours .
Not too concerned- I had an appointment to see my rheumatologist on the 16th March , You can feel my sense of dismay to receive a letter cancelling this appt until mid June .
Firstly I rang the dedicated appointment line to get another earlier appt … but the receptionist tried as best she could but could apologetically only offer me the end of April .
This person made me feel listened to and tried her best by ringing around to see if I could be seen asap .
I’m telling you this as I’m so disappointed to hear how you were ‘brushed off’ by your receptionist. I worked in the NHS for 35 years and as head of a medical department there would be no way that I would advise my receptionist/ appointments clerk to speak to any patient in that curt and dismissive way
I then rang the rheumatology helpline and one of the nurse specialists called me back . I explain my symptoms and the next morning a rheumatologist called me to describe exactly what my symptoms have been over the last 3 months .
She promised to call me back … but on Saturday… the next day - an appointment arrived via the post with a date and time for next Wednesday to see my regular rheumatology consultant
It seems that we all are subjected to a ‘postcode lottery’ depending on where we live and how well the Rheumatology is funded and staffed
I do hope that you get something positive sorted - as people who have not got this condition do not comprehend how much the pain and fatigue can stop us carrying out some of the most simplest of tasks . I couldn’t even press the top of my room air freshener … never mind not being able to dress myself , walk etc etc.
We are all in the same boat with this … living through good days and bad days …. I am just so glad that there are people in this group I can turn to when I get frustrated and low spirited
My consultant was never able to check my blood or anything else after my first two rtx infusions last June/July as my July appointment was cancelled - moved to this February. I too tried to get an earlier appointment but booking dept told me this was not possible- and then Feb appointment was cancelled too !- and moved to July this year. Fortunately the rtx seemed to work very effectively so I was not in much pain . However once the Feb appointment was cancelled and my pain was noticeably increasing I emailed rheumatology. My consultant rang me - quite shocked at what had happened and giving me an appointment for 2 weeks ago. I’m still waiting for an appointment for the next infusion but at least I got a steroid jab then and held on to the July appointment- just hope that’s not cancelled!
Hi, Sorry to hear of the communication issues and of your pain. Also, some people forget what pain can be like when they are settled and steady. Some consultants have a poor bedside manner too. I don’t know the full ins and outs/enough re your contact/anything historical with them, but Rtx will take several weeks to work and took 8 for me to see a major improvement, and the rheumy will want to look at you after 3 months and at your blood tests then too. Do ask the GP re pain management.
I had regular wax hand/arm baths up over my elbows from the rheumatology physio to help my very stiff hands and wrists/arms. They helped so much. Doesn’t sound like you’ve been offered any rheumatology physio sessions and the way things seem to be going I’d not ask them atm, but you could try get your own small wax hand bath for use at home. They are for sale online. Have you tried a micro heat pad to keep your hands warm/moving and hopefully less stiff? Sink fulls of hot soapy water used to relieve mine also and I could move/ exercise them under the water. Simple but effective for me. Hope you are soon starting to improve. 🩷
Contact pals, if you feel your are being treated unfairly or your treatment has not been well explained. Pals are a useful tool and they will communicate on your behalf. They are very effective and can organise things no patient would be able to.
I wrote to Chief Executive of our local hospital trust a few years ago for something else as PALS around here were not very effective in complicated enquiries. It generated real panic and a response in 24 hours and a F2F offer which I said no too as very upset. It's going shortly further as the complex issue was admitted to be a failure in the system. These things are sent to try us but the CE can be helpful too.
why should you have to be told to wait ?this is wrong. I wer given a scan back in 2018 to be told my lungs were scarred I’ve been left until 2024 to be told I av pulmonary fibrosis which has been caused by the rheumatoid but yet they didn’t bother keep a watch on my lungs considering it damages your lungs & so does literally all the medications so yes push to be seen not left on shelf like I wer
that this he thing, i have told them before while i have been told to wait (like i had to wait 5 months for yuflyma to work and it didnt) i told them in the mean time my hands are being deformed, fell on deaf ears
good god that is not a very nice reply is it. I have been told I have to give my medication a 3 month to see if it helps me. Is a month this week. So a while to go. Then it will be reviewed. Good luck and I do feel for you as my hands do sound the same as yours. Take care Lynda
I had RTX infusion in September and over the last 6 months I have been in constant pain and especially in my hands so in my opinion it has not worked. I spoke to the hospital last week explaining how much pain I’m in and that over the last 6 months I have had 3 steroid injections to try and give some form of relief and is there another drug I can try, I was told 6 months is not long enough I need another infusion.
that is what the rhyemy said to me, if this dont work we can try something else, i am just being experimented on,, thing is if i have striod injection how will i know the rtx is working
It's not an experiment but RA is systematic and unlike antibiotics which really are the same for most people the treatment for RA differs from person to person. I know it's frustrating but there is a pathway so they all follow NHS protocol. It's not easy for anyone but each medication takes time to work or not, and mostly its three months. The steroids are there to tide you over until the RA med whichever one it is works or to damp down major problems. But they are not without considerable risks and so why not call your GP? I do understand the frustration but having recently had a major issue with an antibiotic and luck being a major factor in it being discovered please be assured that whilst the reply was probably one sent to everybody who asks the same questions you'll get a blood test and it will be taken from there. It may well be time to move on but patience and time is needed on the RA journey as there simply is no one size fits all drug. Have you tried paracetamol to give yourself more time. I know when I broke my leg and ankle it worked when taken regularly but of course it doesn't stop inflammation. I hope your GP can help, do you have eConsult and can message them ?
i am taking ibupropehn at night so I can wake up with less siff hands then i take pare=acetomol in the day time , but i dont like keep taking all these as my head is already heavy with the steriod tablet
Taking Steroid tablets usually in my experience is like being on speed. It’s a high so please contact your GP and check if it’s not something else like Aenemia and ask for a full blood test. Please be careful as some NSAIDs are not good if you have other issues.
Guess we could see it as an experiment to us as an individual if we’re new to a med, but all our RA meds have been properly, thoroughly trialled. I always think of it as an informed risk. That’s how my rheumy always refers to deciding to take meds. xx
Hi, You’ll know clinically it’s working if your B cells have been depleted. That’s what Rtx should do if it’s working. The rheumy team should have tested these (via a blood test) after your second infusion and then again in 3 months. That’s the standard way and how it was always done for me. The rheumy/biologics/rheumy nurse should have told you about this as it’s all part of the process. (Maybe they don’t like to overdo it re patient knowledge re bloods?) x
Are you sure you haven’t had that specific test done without you knowing what they were testing for? Some patients don’t ask and prefer to not know too much. I’m the opposite but the main way to see Rtx has started to work before a person is visibly and physically improved is the B cell blood test. Seems strange as it’s a requirement to test your blood in general as it’s such a hot spec med., maybe they’re waiting until 12 weeks?
There is no way on earth someone would test me for something and i don know about it. I ask all the questions and only do the tests when i know wht they are testing... God knows no one has told me I should get a blood test after the tretment
hello Pam. I have been 18 months with swollen hands. So much pain and unable to move them. I did a hair test for food reaction and dairy came back as one that affects me. I gave up dairy for alternative and wow my hand swelling went down in 24 hours. And last week I thought I would try lactose free milk and guess what hands swollen again Went back to almond milk and within 24 hours hands normal. I wish someone has told me to try removing dairy before. Could have saved me from so much pain. Not sure if it’s your problem but please give it a try. Avoid dairy and let me know if it helps you
I would chat with the GP discuss pain relief options, ie exercises for the hands as they do help with pain as the stiffness experienced increases pain. Leave a message for the RA nurses, they may be able to arrange an earlier appointment. Are you on top of your pain relief schedule? Is sleeping or lack of sleep creating issues for you. Ask about pain counselling it helps. Rituximab would only help control disease, the pain is usually treated differently
Thats not helpful is it when u r in pain and desperate. My Consultant gave me a steroid infusion which tided me over whilst Rituximab got to work. Looks like you need to speak to your Dr.
Hi I discuss pain relief with my GP we go through options? perhaps a topical would help? Do you use compression gloves? Do you keep to the timing for your pain relief?
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