Finally it's happened!

[madme1]

Finally! Finally!

My first infusion in 3 years has finally arrived after god knows how many phone calls tears and tantrums! Barring infection or cancellation of course!

[AgedCrone]

What are you having an infusion of?

[madme1 in reply to AgedCrone]

Infliximab, previously it was Rituximab.

[Mmrr]

3 years ? What type of infusion?

[madme1 in reply to Mmrr]

Infliximab for my RA. I used to be on Rituximab, and they were going to change me to Truxima, but that never happened so with constant infections, delays and cancellations from the hospital, then covid hitting, its been a long painful 3 year wait. With my specialist team, they can ring me to say oh we'll be booking you in for your infusion soon, so you can go for your blood and urine tests. I follow their instructions ring them when I've had them done and then I'm left hanging. And nine times out of ten I've got an infection whilst waiting so it's delayed again.!

[Evie3 in reply to madme1]

I had 8 years on Infliximab…it worked really well. Hope it happens soon. I am on Ritux but have lots of chest infections too.

[AgedCrone]

What do your rheumy team do to, prevent these infections?Three years seems an awfully long time to be without treatment because of “infections” is it the same type of infection all the time?

[madme1 in reply to AgedCrone]

Nothing really, if I get an infection usually uti, I just get told to go to my docs to get anti biotics.

[madme1 in reply to madme1]

That's the way it always been where I am really.

[AgedCrone in reply to madme1]

Did you not ask for a referral to a urologist……after three years ?

[madme1 in reply to AgedCrone]

Don't think I explained it well enough. I'm just glad to be getting the infusion, mainly for my RA after the three years wait. I am prone to uti's and a lot of the time I usually get an infection whilst waiting to go for the infusion. Since they promised me this infusion in April this year finally, ive been pleading with them to get the date sorted, but my last infusion was like I said about 3 years ago.

[AgedCrone in reply to madme1]

If I were you…the next time I got a UTI…I would very firmly ask to have some investigations/biopsy’s done by a specialist.There sounds like there is an underlying reason that needs sorting once & for all .

Do hope the Biologic helps with your RA.

[madme1 in reply to AgedCrone]

That's why I was so angry with my gp, as when I had the pain in my tummy and kidneys etc she said well I won't get in touch with the urologist until I hear what rhuemy has to say. I was in agony, suffering incontinence and I thought I'm not having that so I rang 111 and was in hospital for four days. The hospital then sent me for two scans. From the 2nd one they found I had a 4mm stone in the right kidney. I then had appt with urologist for 9 of August, which got cancelled to 6 Sept, then cancelled again to 4th Oct. I again rang 111 and was told he'd try to bring appt forward as he was concerned about infection I saw the urologist on 24th August, so glad I persevered. They are leaving the stone for now, but I have to go for camera in Oct and a urine flow rate test as well. My gp's reaction? after the scan, was basically you've got kidney stone get on with it.... They've made so many errors that I've changed doctors, but still can't get to see one ftf. I got in such a deep despair, trying to cope with my pain, the loss of my mum etc that I ended up in counselling for 10 weeks. It even took me two days of being batted between a health care service and my docs surgery, to order the compression stockings that are on my prescription. Sorry for the long post but it's been such a battle that even my counsellor was very concerned about me.

[Madmusiclover in reply to madme1]

This is shameful. Poor you.

[Piwacket in reply to madme1]

What a disgraceful way you have been treated

So pleased to hear that you are starting treatment at long last

I too have a kidney stone similar size to yours I have had all the investigations and my consultant has decided to leave at moment and given me an appointment for 6 month review.

But they can grow , move and get stuck so he stressed if, in the meantime, I have any severe pain in kidney area and fever etc to present myself to A&E

I have had to have surgery in the past for kidney stones so know it is important to deal with promptly let’s hope you receive the same advice

Also make sure urology are aware you are also under rheumatology

[madme1 in reply to Piwacket]

Yes the urologist asked me why I was in a wheelchair, that's when I explained about arthritis, he did have a bit of the attitude of racing his hand up and saying nothing to do we with me, and I thought well you did ask! 😊

[AgedCrone in reply to madme1]

Well done for sticking with it! I too have recently changed GPs with my move.

I haven’t needed an appointment yet…..but everybody I have dealt with has been extremely pleasant & helpful…I hope your new practice is as good.

[madme1 in reply to AgedCrone]

I haven't changed surgeries just my gp. But I know she's the type of doctor who likes to get things done. Bit like my old doctor, the minute you said his name in hospitals etc they stood to attention and jumped to it! 😊

[madme1 in reply to AgedCrone]

I got told by a Gastro consultant that I had Chrohns and now he's trying to back out saying that I never told you it was Chrohns. Though I have that letter dated two years ago saying you are already on treatment that should help with the management of your Chrohns! He'd also told me that in the consultation, he's now saying he thinks it's ulcerative colitis. So, because of him for two years I thought I had Chrohns, I know they are similar to each other.

[stbernhard]

Wonderful news! Let's hope it will get to work quickly. Fingers crossed for you.

[Madmusiclover]

Thrilled for you. Hope it works but still baffled that we have to wait so long and be so persistent. I bet most of us have cried at some point in the consultation room.

[Green230461 in reply to Madmusiclover]

Yes I know I have!

[madme1 in reply to Madmusiclover]

It was because of cancellations, me getting an infection, then 1st lock down etc.

[Green230461]

Best of luck with this I hope that it all goes well for you🌸

[springcross]

I'm really pleased for you madme1, it's about time. You've really been through it haven't you. Good luck. x

[madme1]

Thank you for all your lovely comments and good wishes.

[Blodynhaul]

What a terrible time you've been thru. Sincerely hope things will improve for you all round now, starting the biologic. Hang on in there X