I have been treated with 6 monthly rituximab infusions now for two years with good results , now became of a backlog in rheumatology im 2 months overdue. I am now having a return in symptoms , fatigue, muscle aches, joint pain ,lymph node swelling, increased dryness generally , difficulty sleeping and palpitations with sternum pain . I didn’t realise that palpitations can be a symptom of Sjögrens, i was started on bisoprolol a few years prior to my actual diagnosis of Sjögrens. I was wondering if anyone else has had the same problems after a delay in scheduled treatment. I have been given 1st of march as a possible date for next infusion. I haven’t been to the gp about the symptoms, I don’t know if they will do much, other than tell me to wait until March. Has anyone any advice ?
Rituximab wait 😫: I have been treated with... - LUPUS UK
Rituximab wait 😫
I’m sorry that you are experiencing this weathervane. Can you speak to anyone at rheumatology about what the delay in your infusion is doing to you? If not I would speak to my GP and see if there is anything they can do to speed things up. March seems a long time to wait considering by then you will be four months over due. Hope you can get some sort of help. Xx
Thanks GloomyEeyore , I contacted rheumatology appointments and that was all the info I received , I haven’t tried the rheumy nurse as the info i got was they were very far behind ☹️ . I could maybe see the gp and get my bloods done and see what he thinks, im just feeling a bit lethargic every is an effort at the moment.
Ps , how are you keeping yourself at the moment??
I’m not too bad at the moment. Thank you for asking. Had the medication for Raynaud’s changed and haven’t had any problems with it. Still have the usual aches, pains and tiredness, not helped by this cold, damp weather. Do think I’m going to buy a new mattress though. Been having bother with really bad backache, worse when I first get up. Back at rheumatology in three weeks and I know I am seeing my female rheumy. She has put me in her Wednesday clinic when only she works and there are no registrars. Xx
We have just ordered a new mattress! Should be here in 2 weeks, I tried memory foam but for some reason I felt seasick on them ( having slight vertigo problems) The one we ordered has good support with a lovely soft topper, i hope its ok when we get it , it takes a while to get used to a new one 🤪
It’s memory foam I have at the moment. Getting used to a new mattress can be annoying. Hope you get on alright with yours. Xx
Getting my son a memory foam mattress as he loved them . I hope your hunt for a new mattress is successful, good luck xx
Hi weathervane
Sorry to read of your problems now your Infusion is being greatly delayed. Is it possible to ask your Rheumy Dept that if someone drops out due to illness you could take their place? GE's idea of asking your gp if he could write to them to speed it up as your feeling so poorly is a good one too. Don't you find out the benefits of these treatments when old symptoms return?. Its horrid!.
Good luck with your new mattress, hope it helps.
TAKE CAREX
Hi misty 😀, i hope things are good with you. I have found symptoms start to reappear/increase when infusion is due, going overdue is something else !! I think i will go to my gp as the pain in my sternum is unpleasant, I will try and get blood done as well . Im excited and nervous about the mattress, im hoping 🙏🏻🙏🏻 my sleep will improve. Hope you are keeping well at the moment, xxxx
Hi W - sorry to learn that you’re being subject to delays with Rituximab. I know that quite a few with RA are on it so you might get others in your area in the same boat with suggestions? If you’re unable to expedite it have you thought about asking for a steroid jab to tide you over perhaps?
Your symptom list reads so like mine just now it’s uncanny - especially the pain in sternum. Could this be costochondritis perhaps as I suspect mine is? It’s a common secondary to rheumatic diseases I’ve been told. So unpleasant though - I ended up phoning a GP about it on Friday as was a bit concerned it was my neuropathy drug. He thought it was costochondritis and it eased up after 4 or 5 days along with the facial pain.
Hope you get a break soon as well. X
Thanks Twitchy for your reply 😀. I was wondering if a steroid shot would help, i have only had joint injections in the past, can a gp give them or is it through rheumatology ?
The sternum pain probably is costochondritis as i have had it before on several occasions. The pain has been there for a couple of weeks now, my other thought was that it may be related to lymph nodes though there is no swelling thank goodness. Has the costochondritis you are experiencing eased up yet ? Gps always seem to say the pain will ease in 4-5 days , does it ever ☹️☹️. L
Hi sorry to jump on your post as I can’t answer your questions as I am not on any meds yet but I just wanted to ask how you got your diagnosis you have exactly same symptoms as me I also have brain lesions and neuro symptoms diagnosed with ms originally and then see a ms consultant who thinks lupus and a ent that thinks Sjögren possible as I have inflamed lymph nodes in neck and inflamed esothigus.. al my bloods are currently normal and my lp was normal to x x
My mum recently passed form ms and I can’t seem to get anywhere with doc atal x
Hi Buckley , im sorry to hear you are feeling so poorly. I was diagnosed over 2 years ago, i had been feeling very ill for a long time before that . Things came to a head when all my lymph nodes became very enlarged. I was seen by initially by a surgeon as breast cancer was the concern, he then referred me to an endocrinologist who screened my bloods and referred me to rheumatology , from bloods , mri scans and parotid scans they were ablyto diagnose Sjögrens. Apparently it can take 6 years for some people to get a diagnosis, its is only when I think back that I realise i had all the symptoms of Sjögrens for years. I think you have to persevere and maybe ask for a second opinion re your blood. Best wishes, i hope you get a definite diagnosis ASAP 🌸
Thanks for your reply much appreciated al my bloods are negative so can’t seem to get much further
I hope you sort your meds soon xx
Mine did ease up after 4-5 days so I think that’s fairly conclusive. But I read 2 weeks so I would ask GP. Someone on NRAS forum told me that if you can touch the pain by palpating it then it’s chostocondritis not heart attack. I could touch mine so this was very reassuring. Definitely get it checked out though as chest pain is chest pain.
My advice would be to get bloods done and ask a GP for a steroid shot (Kenalog) in your upper bum. Yes they can do this although rheumatology nurse would probably be best if you can access one. I’ve only had this done once for RA when I was first diagnosed but it did work. Worth asking about for you surely? X
Thanks Twitchy. The pain is worse when i touch it , it just lingering for quite a while . My ribs are a problem as i have had spontaneous slipped ribs in the past .
I have had rib problems for years too. Mine overlap, lock and cramp a lot - always have ever since I was a kid. Could never touch my feet! Then fall and bad rib fracture last year has triggered annoying increase in pain! X
It can be so painful, I went into terrible spasm that lasted weeks a couple of years ago . Im careful not to side stretch quickly or reach for things.
I know - although I have to say that relative to my fractured ribs and related hematoma - for me personally my costochondritis pain seems nothing! Xx
Im sure i can agree when my ribs dislocated it was horrendous, 🤞🏻Those rib pains never come back 🤞🏻
Hi twitchy
Sorry to message you out of the blue
You are literally the only person with similar symptoms to me and I feel like I’m going crazy
Every consultant I see tells me there is nothing wrong and Sjogren is rarely neurological. My muscles everywhere twich and jolt in my face and mouth also I have brain lesions dry eyes and tongue my face under my eye slightly swells on one said and my neck feels sore and jittery.
I’m sorry to put this on you I’m just finding it hard every specialist I go to just keep ruling things out which I’m some way is good but I want to feel better xx
Where are you based Buckley?
Through cyberspace I know loads of people like us now. The main place to find others is the International Sjögren’s Syndrome Support FB group which has 19.6K members. I don’t bother with any other FB groups now because they all just focus on dry dry dry.
The HealthUnlocked Australian Sjögren’s community is good too so you could follow and post there as this is someone else’s post so it probably is better to post yourself here or there or both.
My CTD team in Scotland do know something about neuro Sjögren’s but definitely not nearly enough. They tell you it’s a rare presentation but honestly I don’t think it is. At the John Hopkins they have a dedicated Sjögren’s clinic and this is one of their recent Facebook posts.
“Many Sjögren’s patients with devastating neuropathies have delayed diagnoses, because the blood work does not show any evidence of abnormal antibodies. The work, at John Hopkins, shows that nearly 50 percent of Sjögren’s patients with neuropathies lack these antibodies. Using the expertise of the Rheumatology Core Laboratory, John Hopkins Sjögren’s Syndrome Center, are seeking to identify novel and previously unidentified antibodies, which will provide insight into relevant mechanisms, and suggest therapeutic opportunities.”
Hi twitchy I live near London
I just don’t seem to be getting anywhere after my mum died I was diagnosed with ms and then it was taken back after lumber results my ana is negative as is all my bloods. But my tongue is frilly looking around the edges and my eyes are sore my muscles have a complete mind of there own also I get a burning scalp the goes one my arms and neck ?
I also have uptake in the ovaries and lymph nodes in my neck on pet scan. Till I have no medication and I don’t see another doctor until October.. what shall I do xx
How are you sorry for the long post x
After mum I’m a little frightened xx
Sorry you are suffering. Please do post yourself on the main Lupus UK forum Buckley - then I and others can perhaps give you more supportive advice.
Okay thanks twitchy x
Hi weathervane
That sounds like a good plan to go to your GP specially as you've got this awful sternum pain!. Let me know how you get on.
My injections are working really well which is great. I'm finding out I can't really manage on 7.5 mg steroids as had to ask new GP for an increase to 8 mg for five days and it has helped my flaring CTD symptoms !. Have to go back to 7.5 mg see how long I go !. It's a constant juggle for us!. Do hope your new mattress helps. Xx
Hi misty , glad injections are making a difference 😀 I hope the steroids agree with you ok , they can be hard on the stomach , good luck with the increased dose. It is really difficult getting meds right, whether it’s the dose or the right timing for treatment. I hope your Mum is keeping well , best wishes xxxx
Thanks for your lovely message weathervane. I'm feeling better , symptoms less strong thanks to the extra dose and lucky with my stomach as take ranitidine I just wonder how long I'll manage back to 7.5 mg!. Last day of 8 mg today!. . Do agree re difficulties with getting balance of meds right and timing of doses can make a big difference!. I've learnt that at drug reviews . My new GP wants me to see the clinical pharmacist they have at our surgery so might get some useful help from her. Does your surgery have one?. Do hope you have a helpful appt with your GP.
Mum is back on the steroids as her skin flared again. Biopsy results not known for another three weeks but she will see the Consultant finally after seven months of GP registrar with special interest in skin looking after her!. Thanks for asking. How is your son doing?. Hope over that virus. Xx
Good luck with steroid reduction, hope you can stay on lower levels . I don’t know if we have a clinical pharmacist, one of the pharmacists is involved in husbands asthma reviews so maybe? I hope your mum gets results that helps with her treatment , waiting for results is so frustrating, its a relief she is finally going to see a consultant. My son is keeping well at the moment , his coughing has settled so must have been a virus, maybe the snow and drop in temperatures will get rid of some of them 🤞🏻.
Take care, best wishes xx
Thanks so much weathervane will keep you posted. Glad your son is better and hope your enjoying your new mattress. It does sound like you've got a pharmacist at your practice like us. Good luck with your GP. Have you managed to make an appointment?. Take care and keep warm in the snow. Xx
I have to phone gp on Friday, hope to get appointment then or Monday . Its sooo cold here today , though I think the snow is done for today, it was a bit of a surprise ! Keep warm as well, chat again soon 🤞🏻for your mum xxx
Good luck for Friday/Monday weathervane for an appt. fingers tightly crossed for you. You get one. Let us know how you get on. Best wishes Xx
👍
Hope you get an appointment weathervane!. Xx
I think it will be Monday as I have to go to a funeral tomorrow, I keep putting it off 🙄
Oh that's tough weathervane. Hope it goes as well as possible and not surprising you've put GP off. TAKE CARE, thinking of youX
Sorry to hear this. I wonder where you are and whether it’s a shortage of the medication. I would get in touch with rheumatology and let them know you’re suffering.
Thanks cathie , i was told it was a backlog but maybe that’s translated into shortage , I think with all the news about shortages of meds its a possibility. Im going to my gp first and will see what he thinks, maybe as Twitchy says a steroid injection might boost me up until March. ☹️
I too have Rituximab and it's always given when the symptoms returns and not every six months.
I have MCD which has damaged my lungs (Pulmonary Fibrosis). I have to have the funding for me to have the infusions, which should be every six months but they have to prove each time that I need it and so last year it was over 12 months. I am given it to slow down the inflammation that's damaging my lungs.
In December I had the infusion on the 18th and the 31st. I haven't been well since because I was given the cheaper version of Rituximab. I felt unwell after the second infusion and the nurse said that next time they will have to go back to the original brand.
Last week Monday I saw a Gp who sent me to A&E. I had a chest X-ray and was sent home with 'your X-ray is no different from the last time'. I was sent home feeling the same and this Monday the 21st I went back to my Gp who sent me back to A&E because she was worried about my rapid heart rate and drop in oxygen in my blood (even though I use oxygen). I had bloods taken, chest X-ray and ECG. Some of the bloods will take a week or so but everything was okay they said and was sent home again with oh we think it's a virus.
I do hope weathervane that it goes well for you in March.
Oh Maureen , that’s awful ! I don’t think my rheumy has to apply for funding each time . Normally I go to day unit every 6 months, im assessed by doctors and if everything is ok I get the infusion that day. It must be very stressful for you. How are you feeling at the moment?
I don’t stress about the funding now, it did take three years to get it because Rituximab has never been used for lung damage in this country.
I am feeling awful now like I have the flu but right now the focus should be you so I do pray you will be able to cope with your symptoms until you have the infusion.
Take care.
God bless🙏🏽💐
Thanks you Maureen , but you sound as if you are feeling poorly at the moment, please rest up and get better soon. Sending you lots of positive thoughts best wishes 🌸🌸
Hi WV,
sorry you are still waiting for your treatment. is the sternum pain near your heart? I get palpitations when my flare causes thyroid problems and I get pain in my chest but I think it's major indigestion as my stomach and everything is inflamed.
Hi wsjkcj1 , my sternum is tender to touch but I have also had increased heart burn at the moment. I taking Etoricaxib for pain in the occipital region of my skull which maybe causing heartburn but i do wonder why the Etoricaxib is not helping the sternum pain as well ??
I’d definitely chase it up with your rheumatologist? If you tell them all the symptoms they could maybe hurry it up. I had my first one booked for last March but I flared badly in January, my husband rang rheumy and he brought it forward so I had within a few days. They did the same this time as I was in a bad flare in hospital so gave it to me as an inpatient. I think there are some funding approvals each time but it seems some hospitals/ consultants get it easily and quickly and some don’t - when the patient need is maybe no different.
I’ve been told there’s a queue for the infusion unit though so they couldn’t promise I’d get infusion 2 at exactly the 2 week point so maybe this is the issue with yours too that it’s not just a wait for rituximab but a general infusion queue?
Really glad it helps you and hope you get it soon - difficult to push for these things when you’re flaring x
Thanks Melba , I hope to see my gp Monday and get some advice then , I would have tried for tomorrow but I have to go to a funeral. Your husband was great to get an earlier appointment for you , my rheumy job shares with another excellent rheumy and I think family issues happened so appointments are delayed. It’s unfortunate, if there a chance of a steroid shot to keep me going I will take it as at the moment my hands are swollen and sore ☹️
Need to be believed
Rituximab side effect or stomach bug?
Rituximab
Busy while I wait.
Can Lupus come on suddenly?
