Flare up

[Vonnie10]

Hi I’ve posted recently about rituximab, I had it about 4/5 weeks ago my first infusion people have said stick with it try not to get a steroid shot because I won’t know if the rituximab is working, I literally couldn’t get out of bed for at least half hour today all my joints are kicking of goodo nightmare, I do get confused and try and stick to advice from other RA sufferers but I’ve had to bit the bullet and ring to ask for asteroid shot, that’s the story, do you think the rituximab is not working ? Ive felt like for weeks like I’m getting the flu but I never get it and sleeping loads is this the RA? Or fatigue, this disease is horrible. I would appreciate any advice .

[popsmith1874]

It could be the disease or the after affects off the drug how many infusions have you had

[Vonnie10 in reply to popsmith1874]

Just 1 I started it a month or so ago so 1 infusion of 2 parts of rituximab should I be having problem so quickly ?

[popsmith1874 in reply to Vonnie10]

They say it can take up to a couple off months to feel the benefits,I know I'm on Humira it took 2 months to really feel the benefit

[AgedCrone in reply to Vonnie10]

Hi Vonnie.....You don't know you are having "problems". It does sound like the RTX has not kicked in yet......l seem to remember it took about it 10/12 weeks for my first duo of infusions to kick in,& it has been plain sailing ever since.

If you really can't Bear it, I'd ask if you can maybe have a low dose steroid injection.

Have you spoken to your Rheumy nurse? As far as I know the injection wouldn't stop the RTX working......OK you wouldn't know if the pain was only being masked by the injection, but I'm all for getting rid of pain.If the pain did subside & doesn't return when the injection wears off, it could mean the RTX has finally kicked in. Not very scientific...but could be worth trying.

Ask the professionals...but don't just put up with the pain unless they say an injection will affect the RTX.

Hope you sort things out soon.

[Vonnie10 in reply to AgedCrone]

AC I agree with what you’ve said just that someone said on my last post try and go without I’ve rang the nurse today I’m going in Wednesday I know how my disease works it just gets worst by the day, I can’t put up with the pain no more I definetly need a shot they don’t last so long on me so let’s hope the Rtx works after the shot stops working thanks AC I appreciate your advice .

[AgedCrone in reply to Vonnie10]

Everything you read on here is always well meant....but the only people who can really advise you what you can/can't do are your medical team.

As I said...I don't think a steroid injection would interfere with RTX working.....but of course I don't know how many you have had...if you have been having regular injections - another one might not be possible right now.......your Rheumy nurse will do all she can I'm sure.

[Vonnie10 in reply to AgedCrone]

AC I know people mean well I think I’ve had about 6/7 maybe this year like I said they don’t last long on me just because I had no treatment whilst waiting for a plan , I’m just preying that Rtx does work on me and it’s just a blip whilst it’s waiting to work, I certain the person who said try and hold out menat well, I will soon find out in 6 weeks time if it’s worked on me fingers crossed thanks again.

[cathie in reply to AgedCrone]

It’s unlikely that steroid would stop rituximab working, where I get it we have a steroid infusion just before the rituximab one. I have to watch my blood sugars with that.

[AgedCrone in reply to cathie]

Yes that is true, but that steroid is to stop reactions to the actual infusion isn't it?

Once the RTX is in the blood stream& starts latching on and destroying the layer of the B cells that are causing the inflammation,I don't know if that would be affected?

But I'm sure Vonnie's Rheumy team will do anything possible to help her get some relief soon.

My infusion is due in a couple of weeks...yesterday in the supermarket a woman behind me at the checkout started coughing & spluttering......I was out of there so fast.....I don't have many colds,but at this point in time I'm paranoid about catching anything that would mean I can't have my infusion.

I have a question.....before your infusions....how many days ahead do you need a blood test? have always had mine a week ahead. Yesterday I saw a different Rheumy nurse & she said two weeks was OK...but I'm wary of turning up & being told my test is "too old" as I find the Rheumy nurses & the biologic nurses aren't always on the same page.

[cathie in reply to AgedCrone]

Usually I have blood test in the 7 days before the infusion, often Monday before Thursday infusion, but I suppose that depends on the hospital. We have puriton then steroid then rituximab so I’ve been told steroid is to boost immune system around time of infusion. That’s what they told me when we discussed it after my blood sugars went sky high

[AgedCrone in reply to cathie]

Thanks for coming back Cathie...I usually have mine Wednesday before Monday....think I'll call the Bio unit & ask. I'm the other way, my blood sugars drop & I'maway with the fairies if the infusion is too fast.

I didn't like to argue with the Rheumy nurse yesterday as she wrote out the blood reques form there & then & off I went to Phlebotomy.

I don't know if you read my posts trying to find out about having the 65+ Infuenza vaccine? Well the Rheumy nurses had no idea, but when I rang the Bio unit they said if I had that vaccine I couldn't have RTX.

In previous years I have had the regular Flu vaccine with no problems.

However I don't know if it is just the hospital that I go to who say no infusion if you've had Fluad.

It's a full time job keeping up these days isn't it?

[AgedCrone in reply to cathie]

FYI...just called my unit...they said to have new blood test next week! The rule is still to have the test within 7 days! Grrr!

[cathie in reply to AgedCrone]

I wonder about the communication between people in hospitals. If that’s what they say about flu jag it’s best to follow, but I know the vaccine is inert and it’s live vaccines they worry about.

I get exercised about vaccines because my husband worked on them as a statistician analysing side effects. He was in conflict with that dr who tried to show s correlation between mmr and autism and proved dr wrong. That guys now working for a Trump.

I get in a bind around dental treatment and these infusions. Mind you it’s not hard for me to find an excuse!

[AgedCrone in reply to cathie]

Yes that Dr who rubished the MMR has a lot to answer for.....the latest measles epdemic for a start. I wonder how many children will have ended up with eye & ear problems because their parents were spooked & didn't get them vaccinated? I know I had measles as a young child, before there was a vaccine, & I ended up very poorly in hospital.

Luckily I haven't needed any dental treatment for years, but I will point out thatBDJ article that was on here if ever I do need anything doing,

I am presuming my hospital is just being cautious because this is the first time FLUAD has been used in UK, although it has been used in US &Europe.

I'm not too bothered about not having it- even though I had Flu for the first time ever this year.....having had the Flu vaccine....so it's just fingers crossed & keep away from the madding crowds as much as possible.

[cathie in reply to AgedCrone]

You can do a lot with hand washing!!!

[Simba1992 in reply to AgedCrone]

There is always an other side to the coin. There are two stories that it is important to look at before making up ones mind on what the reality in fact was concerning the work and actions of this doctor. We know very well how many doctors who have dared look outside the box have been trampled and discredited because big interests are at stake. Read the other version of the story and am no longer so sure that what the doc was discredited for was the real reason(?)

vaxxedthemovie.com/who-is-d...

[AgedCrone in reply to Simba1992]

I think a lot Andrew Wakefield's problem was not only his flawed research, but the unnecessary tests he had subjected children to.

But he still seems to be involved with medicine ...so someone must trust him.

[Simba1992 in reply to AgedCrone]

Did you read the other side of the story?

[AgedCrone in reply to Simba1992]

Yes I remember he was saying he was victimised for something, but the harm he did lingers on with some parents too scared to have their children vaccinated.

Mind you, every journal you read has a different slant, so who knows?

[Simba1992 in reply to AgedCrone]

If you read the above link as I remember was that he recommended to have the different vaccines separatly instead of in a combined form until further research was done whereafter NHS only offered the MMR possibility which quite understandably made the parents scared. To me the whole thing sounds like a which hunt, sorry.

[PFKAAde in reply to Simba1992]

Andrew Wakefield is a fraud and his ‘work’ has been widely and roundly discredited by multiple (peer reviewed) studies.

His original ‘study’ (yes, the one that caused it all) was based on a data set of 12, and drew conclusions that 10 out of the 12 original authors later admitted could not be drawn from such a limited data set. He totally ignored the fact that there will always be a correlation between autism and the MMR vaccine because one becomes apparent in early childhood and one is given in early childhood. For that reason a sample size of 12 is not enough to ascertain correlation above and beyond what would be expected, let alone causation.

He also ‘forgot’ to disclose the source of his funding for the original study.

He has been soundly discredited multiple times by multiple teams and personally I think that raising doubt about it yet again is exactly the reason that it was so damaging in the first place.

Mud sticks, as they say.

All IMHO

ncbi.nlm.nih.gov/pmc/articl...

🙏🏻

[Simba1992 in reply to PFKAAde]

I'm sure there is a choir reciting the official side of this story, would be very interested in comments on the other side of the story and the arguments reflected upon. Are they false as well?

[PFKAAde in reply to Simba1992]

There is a lot of information regarding the entire MMR thing available online. I’m not going over the entire argument again here, anyone that wants can find out easily enough.

Andrew Wakefield has been publically and repeatedly accused of being a fraud (and was even struck off the genera medical council because of it), yet has never successfully sued anyone for publically accusing him. He’s tried, it was thrown out and he had to pay all costs.

He stood to make £43m a year from diagnostic tests.

He lied. If I’m wrong, he can sue me.

🙏🏻

[Simba1992 in reply to PFKAAde]

The more I listen and the more I learn really makes me wonder.

m.youtube.com/watch?v=OcrhR...(Not working as expected?)

[PFKAAde in reply to Simba1992]

I’m sorry but Andrew Wakefield is way past the point where he can form his own defence. The day I see an independent study that confirms anything he has ever claimed, I will eat my hat.

🙏🏻