I'm struggling with pain and fatigue but feel my rheumatologist will not permit me to have my mabthera infusion

[Ardea]

It look 5 long years to diagnose my rheumatoid until everything seemed to go. My consultant at the time apologised- I think I was sero- negative.. but then it showed up and I finally got treatment. I have tried various combination of drugs and was finally put on mabthera. My new rheumatologist says he can't see swellings and sent me to have scans on my hands and feet. I know I also has osteoarthtitis badly on my hands and feet but I think he will fob me off and say the way I feel is down to osteo or fibromyalgia which I also have. I wake up every morning for months with stiff joints and incredible pain. It takes a good hour after waking before I can move and wash and dress. I have never had huge swellings and the oesto was caused from the rheumatoid when I got little help. The infusions have worked for me and have given me some of my life back. I was hoping that after 1 year I felt ready for my next infusion. The last few months in the mornings have been hell. I know too that it is down to money that they withhold infusions too. How can I get the help I badly need

[Deeb1764]

you need to hit the phone and then back up any conversations with emails and or letters cc PALS as well. I was getting good RA info from my consultant until I got fibro and then he put everything down to this even the fatigue which was super bad before the fibro ie 2.5years.

For you do some research on how to tell the difference between RA and Fibro and Oa (have all 3 as well) so they don’t bamboozle you that it’s all fibro and have notes to help you for a call or face to face.

Call NRAS as well they can give you some good pointers on how to work thro some of these issues too!

It’s always a battle I find but it has to be done.

[wilbertjellyfish]

I may have picked this up wrong but if your rheumatoid positive now then I can't see how he can deny that you have RA and need treatment. Take a deep breath, speak clearly (get your authoritative voice out) and say that you fully appreciate the constraints he/she may be under but you are a patient with equal rights to treatment. Your symptoms are due to your Ra and you want your treatment.

Years ago I had shingles when I was pregnant. The GP tried to tell me I couldn't take anything because I was pregnant. I looked him in the eye and said " you will phone the gynae consultant and you will find out what I can take because I'm not leaving without treatment ". I spent the next few weeks overdosing on paracetamol/ co codamol but I got threw it.

I have a good authoritative voice when I need it but you don't have to suffer and sometimes you have to ....for want of a better way to say it....act like you're an asshole to get what you need.

Really hoping your worried for nothing.

[Sheila_G]

Sorry you are having a difficult time. Osteoarthritis is wear and tear on the joints, not caused by anything else. Rheumatoid arthritis is systemic so both need to be treated differently. I don't have any experience of fibromyalgia so can't comment. I hope you get sorted soon.

[AgedCrone]

Why don’t you have a word with your rheumy nurse.,…asking for an explanation, & telling him/her how much pain you are in? Rheumatologists are often not very clear when they stop /change a drug.

RA & OA are two completely different diseases…..and you would only have been prescribed the Rtx infusions if you tested positive for RA, it is not prescribed for OA.

It’s doubtful a rheumatologist would stop your Mabthera (Rituximab) infusions for no reason . In fact - have you actually asked your rheumy for the reason?

Give your nurse a call tomorrow!

[KittyJ in reply to AgedCrone]

You have a good point there, she hasn’t actually been told she can’t have it it’s just a feeling she has so hopefully it will go ahead as planned but she won’t find out unless she asks 🤷🏻‍♀️

[AgedCrone in reply to KittyJ]

You won’t get a follow up Rtx infusion until your Bio team have the result of blood a test proving your B cells have repopulated sufficiently.I am going in to my 8th year of successful Rtx infusions,& now only need one infusion around every 12 months…but without a successful blood test ..I would not be given it.

[StormySeas]

As far as I know RTX is an ongoing treatment. It essentially wipes out your B cells, which begin to reappear after 6 months or a year.

A top up is usually given after a blood test has established the re-emergence of the cells in sufficient numbers. You will need this test before a new infusion. Where I live it’s called a CD19 and CD20 test.

You might check whether this test has been done and if not, request it straight away. It’s simply part of your on-going monitoring on RTX. It will establish whether or not you require another infusion.

If the test has already been done and it shows no B cell activity, it might be a reason for your rheumatologist’s refusal to give you another dose.

Either way, first of all find out if the test has been done. If no, have the test and go from there. If yes, get the results and then discuss with rheumatologist.

In my case, the hospital performs the blood test, or sends authorisation to the GP to do it.

Best of luck

[helixhelix]

you don’t know that you will be refused so try not to anticipate the worst as stress is not a good companion.

Do you have a date coming up for your next appointment with your rheumy? If so you could write to set out that the drug made a significant positive difference and since X date you are seeing symptoms return such as a,b and c. Si are very keen for an infusion soon. That way you are clear in advance what you expect, which makes it easier for them to just agree.

[cathie]

You refer to 'new rheumatologist' so have you changed drs since they prescribed the rituximab? I've been on it for a long time and the intervals between infusions have increased. I'm not complaining about that but do wonder whether this isnt a cost related factor. At the same time I have concerns about ritux because it seems to reduce the impact of the covid vaccine. this bothers me a lot which is why I'm not pushing. I do wonder also whether the fibro is necessarily connected to your RA and might be worth investigating separately. I have it and i understand its linked to diabetes. I hope you can get to the bottom of things.