Rituximab infusion and bad news about back☹️☹️☹️

[weathervane]

In ward for 3 course of rituximab infusion . Just had consult with doctor and been told that mri of back shows 4 bulging discs with nerve impingement 😮☹️. She is referring me for spinal nerve injections but that might take 6 mths . Feeling bit low after that news but what can you do , you have to get on with it . There are definitely people worse off , lady beside me has had nearly every joint replaced and she is only 35 !! My husband has just given out to me as i say im not too bad but he sees me hobbling about hardly fit to walk at times - but those are my good days LOL .

[Hidden]

Poorest you W. There is always someone worse off of course but I think you're allowed to feel pretty sorry for yourself too. Hope the Rituximab infusion goes well and helps the Sjögren's. I think my lower back is similar - lumbar discs compressed - makes me hobble about too. Got lots of rubbish going on my end too - at both ends bizarrely i.e facial pain and UTI plus. Hacked off as hubby is away with his sick mum so just me n dogs - but son is coming over to help with dogs later apparently. Oh well over and under eh?! X

[weathervane in reply to Hidden]

Im just back from holiday yesterday so on a catch up as internet was patchy. I hope you feel better soon , is it the drugs that make you more prone to UTIs? Is the facial pain due to parotid gland ??

[Hidden in reply to weathervane]

Not sure to either question. Gp took blood for pancreatitis and said I have white blood cells in my pee - so UTI with antibiotics and off Mycophenolate until I've finished them. Yesterday was better until I ate then after I was sick with horrible upper tummy pain all night. So can't blame this on side effects of the Myco really as I hadn't had any all day! Saw another gp on Tuesday as nose bleeds and nasty throat so he's referred me back to ent. I do have jaw arthritis but think it could be sinuses or parotids as all are hurting - also got v cold/ heat sensitive crown so maybe a tooth? It never rains eh but hope you managed to have a bit of fun on holiday at least? X

[SjogiBear in reply to Hidden]

Interesting to read about your jaw TT - I saw my oral maxfax consultant yesterday (the one who referred me for the MRI in the first place) - he said it's all feeling nice and soft around my jawline now thankfully and he reiterated that they consider it all to be down to inflammation and will just keep a watch on things for me. Anyway, I have some arthritis in my jaw too and TMJ (which I was seeing him about). I have just been reading that there seems to be some link between TMJ and Silent Reflux which is interesting and they are connected. OralMaxFax guy was also saying about the link with stress and anxiety which also links in to the Sjogrens - he thinks it's all connected for me with everything that has been happening this year. Lovely chap prescribed me saliva gel, spray and lozenges for my dry mouth which I've not needed to use before but everything seems to have gone downhill in recent months and I'm much drier than before.

Sadly 11-year-old daughter has been struggling with dry mouth and eyes recently too - being coeliac and with me as a mother - she is at high risk for Sjogrens

[Hidden in reply to SjogiBear]

Oh heck well my dry eyes started at 8 or 9 years old along with severe alopecia -even areata and terrible dental problems. No one even thought of my immune system being the culprit - it was all put down to neurosis?! So your daughter will always at least have the advantage of having a mum who is very alert to all this and sympathetic too.

My excellent oral consultant felt my jaw and said that I have TMJ caused by inflammation in the jaw so same as you. I tried to tell this duty gp on phone about this today but her comment was "how interesting - why would you think of inflammatory arthritis or swollen parotids?" Reply "because I have Sjögren's" - "oh I see - but what has that to do with your parotids?". I was in such abject despair after this that I phoned B on the BSSA helpline for first time in four months for a moan. She was fab of course!

W I do hope your Rituximab infusion went well and you get some decent rest. X

[weathervane in reply to Hidden]

A dental surgeon might be your best bet , the guy i saw said to see him immediately if my problem happened again . My lovely son has now just brought me a cuppa and a milkyway yum yum x

[weathervane]

Rub toothpaste for sensitive teeth on the tooth with your finger every couple of hours, it might help 😬 I had a lovely relaxing holiday, felt good getting heat in my bones xxx

[Hidden in reply to weathervane]

Oh heat in my bones - sounds bliss. I'm in bed with hot water bottle for ice cold feet! X

[weathervane]

Just had antihistamine injected into infusion , this stuff would definitely help you sleep , my eyes are closing !

[SjogiBear]

Sorry to hear about the MRI results on your spine W - that's rough. I do hope you can get those injections you need sooner than 6 months. You are being a very brave girl going through your rituximab and seeing others you feel are worse off than yourself. I hope it all goes well - is this the third lot you've had so far or am I reading your post wrong? Fingers crossed it makes you feel a lot better xxxx

[weathervane]

This is the third course, im just home and have had a cup of tea and toasted malt loaf , great !! Im feeling tired but well so far , it will take a while yet to notice a difference. The physio told me that reducing stress can help autoimmune conditions as can have an effect in reducing inflammation ! She recommended mindfulness and relaxation- interesting 🤔

[Hidden in reply to weathervane]

Well you know exactly how to do mindfulness W - cuppa and toasted Malt loaf -mmmmmindful and the best kind of de-stress there is!? X

[weathervane]

Ha ha , dont forget lots of butter 👍

[weathervane]

In bed , very tired but cant sleep 😦I forgot that this can happen with the steroid part of this treatment. I may get up and try a camomile tea see if help . Dont know what else to do 😫

[Hidden in reply to weathervane]

Poor honey - try to just go with the flow. I get insomnia always - last night it was from agonising stomach pain. At least yours is drug induced so just try and think about your holiday you've just been on and other lovely experiences and it will pass. X

[weathervane]

Thats not good , what is causing the stomach pain and has it settled ?? I did sleep on and off eventually , now have wakened very early and i want my porridge!! My husband and son laughed at me on holiday as i had brought porridge with me and had it every morning in 32 degree heat 😋

[misty14]

Hi weathervane

So sorry to read your tough news about your back. Hope you don't wait too long for those nerve injections. Hope the infusion soon starts to kick in and you had a good holiday despite everything. Take care. X

[weathervane]

Thank you misty ! Ive had back problems for years which has be put down to other things such as the bursitis in last few years so the discs slipped through the net !! I forgot to say that the doc referred me to Ophthalmology as well as you apparently need see a specialist when on plaquenil for a few years . I have been going to optician once a year so i dont think there are any problems 🤞🏻. How have you been keeping lately ? I hope all is going ok xx🌸

[SjogiBear]

When I saw Dr P a couple of weeks or so ago she did recommend Mindfulness to me - I am fully aware of the need to destress as I am an exceedingly stressy person: it comes with the autoimmune territory! We have something through the local psychology service where you can go along to group classes for things like mindfulness, anxiety & panic attacks, chronic pain etc etc. I have tried a couple of these previously (including Mindfulness) but it didn't really work for me. However, it is free so I was wondering if there's something similar you could try without it mattering if you dropped out if it doesn't suit. I have got the book Mindfulness for Health which is quite interesting (still can't really do it though) - I will put some links below for you which give you a bit more information (there are some free meditations to try in the resources tabs too):

franticworld.com/what-is-mi...

breathworks-mindfulness.org...

oxfordmindfulness.org/for-y...

The other thing I used to do which I found very good was Tai Chi as this is a very relaxing, mindful form of exercise which is great for improving balance and general health. I keep meaning to try and find another class - I would have liked to do yoga but found the classes in it generally a bit too much to cope with.

In the meantime, I have downloaded a meditation app to my phone so I am going to give that a go if I can find some that don't have really annoying voices!

[weathervane]

Thanks for all the info Terri 😀. I havelearned relaxation techniques in the past but haven't practiced them recently, as part of the mindfulness i should make time for it LOL. I found a great tai chi class a couple of months ago but had to stop as my back and leg pain got worse. Thats a great idea about meditation app im going to check those out now . Ive a physio appointment in 2 weeks so will discuss this all as well . It is worth trying different things as might hit on something that works . Xx

[wsjkcj1]

sorry to hear that WV! Keep up the good attitude. You're right, you are still more fortunate than some. My father takes those shots and it helps him greatly.

[weathervane]

Thank you 🌸 Not feeling so bad though ive a bit of a chest infection and on antibiotics now . Does your dad get the steroid shots ? Its good that they are working for him . How are you keeping yourself at the moment?