RA in sacroiliac joint and coccyx?

jenzie06

As I'm only on painkillers at the moment after running out of drugs my RA is flaring badly and is totally uncontrolled.

For the past couple of weeks I've had a sore coccyx and sacroiliac joint on the right side. But since Tuesday it has been excruciating. I've been waking up with it very stiff and sore but by the evening it is totally off the scale and I'm having to have oromorph and it still leaves me sobbing.

It hurts to sit, walk and lie either on my back or on my right side. I'm sleeping on my left side with a hot water bottle on it.

My husband says it swollen (though not sure how he can tell as my bum is in the way!).

This is in addition to a flare in my knees, left ankle, hands, wrists and elbows. Shoot me please.

frogmorton

Hello Jenzie

You do sound to be having a really rough time

I sooo feel for you you are left with pain relief and that's all am I right? What about anti-inflammatories?

A while back someone else on here 'ran out' of options for her RA too and if I remember they started her almost at the beginning again with DMARDS.

Have they any sort of plan for you? Have they tried pain clinic?

Sending you lots of ((())) and a 'pile' cushion' for your sore coccyx.

Love

Toni xxx

jenzie06

Thanks for replying.

I'm unable to tolerate anti-inflammatories.

I've tried every medication going (hydroxychloroquine, sulphasalazine, methotrexate, leflunomide, himira, cimzia, enbrel, rituximab, abatcept) and the only one that's had a big impact on the RA was the abatacept but that's the one that nearly killed me last December by having severe anaphylactic shock.

So the consultant says I have to wait till next year when the Jak Kinase Inhibitors come out and hope like hell I'm not allergic to it and that it does something for my joints.

I was on high dose steroids through my last pregnancy and I am heading swiftly towards osteoporosis and diabetes because of it. So I can have a few days high dose here and there when it gets bad they don't want me to be on them constantly as the extra problems aren't worth it.

I spoke to the rheumatology nurse on Monday but I'm yet to hear back. I'm going to ring again in the morning. I was even begging for the crutches where you lean on your forearms just so I don't have to be carried to bed by my husband.

Oh and I've broken one of my hand splints but as it's half term everyone is away. So toughing it out is apparently the only option. No wonder people turn to alcohol.

[Deleted User]

Hi jenzie06
my goodness you really are having a tough time. I hope at least you can get some gutter crutches and a new hand splint sorted out soon. Sadly there does seem to be a few people who cannot tolerate the medications and it must've been very scary for you to have such a strong reaction to Abatacept.
Please keep us updated with how you're getting on and let's support you until you get your new medication, a Jak Kinase Inhibitors.
Best Wishes
Sharon

stickywicket

Hello again, Jenzie. You really are going through the mill, aren't you? When my sons were young 'proper' DMARDS weren't on offer. I became allergic to gold injections and had a succession of NSAIDS all of which damaged my stomach to the point when I could no longer take any. RA + motherhood is not an easy option, is it?

As frogmorton suggested, might it be worth going back to re-try one or two of the earlier DMARDS? Maybe not any that you had a bad physical reaction to but ones that didn't seem to do much at the time. Now that things are so very bad they might make a difference.

I hope your appointment goes well today and that something can be found to tide you over until the new meds are available.

barbara12

HelloJenzie
I really do fell for you, I have OA in the sacroiliac joint and its agony when it flares..I do hope you can get some relief very soon..I have tried ice on mine not very nice but at least it takes some of the inflammation away..

frogmorton

Oh Jen

This doesn't sound like there is an easy solution at all

Absolutely you need those crutches ASAP as well as a replacement splint!!

I know what you mean about steroids and the risks they present despite their 'benefits'.

You have all my sympathy and will be hoping that the new drugs due out next year (I genuinely hope early next year?), will help you.

Love

Toni xxx

jenzie06

So no one at the hospital has bothered to ring back. I've had to buy a new wrist splint as it developed a hole in the palm and the broken splint is wrapped but it is rubbing my hand.

I've had to buy some crutches and the wonderful man on the phone has ensured that they will be delivered tomorrow after the initial delivery date was Monday but I think he heard the pain in my voice as he asked if I was struggling and I explained about the RA etc plus half term with two wonderful but full on children. So he sorted the delivery. I could have kissed him.

frogmorton

and they wonder why people with disabilities need DLA/PIP :roll:

Shame you had to pay yourself, but I have too in the past.

At least your palm won't be sore and you will be more mobile. I am very glad you came across a kind merchant

Love

Toni xxx

jenzie06

The new crutches help, it means I can walk a bit then get back in the chair again. When at home I'm trying to potter about and keep moving. I'm a lot better if I'm sat not doing anything but life doesn't allow for that at the moment.

I'm seeing my OT on wednesday and I'm going to ask to see my consultant. She did say that she would see me whenever I needed to be seen, let's see how well that promise goes. I'm not holding my breath (although I might do that and see how far I get!!).

jenzie06

My OT was lovely as usual (known her 18 years) and I called in to rheumatology and was asked to ring the consultant's secretary which i did. I had a message on my answer machine to call them back. So I did and was told she would ring back today. I waited in all day and after 5 hours I rang back to be told the consultant was meant to ring me but she'd gone home til Tuesday. There was no one else there to help me as they were all on a training course.

So I'll carry on waiting. Just more despondent than before.

jenzie06

Interesting turn of events. Spent Sunday evening in a&e with chest pain, breathlessness, racing heart and first ecg was a little dodgy. Anyway they repeated it and everything settled down and I went home still feeling rough with chest pain and breathlessness.

The next morning still feeling rubbish I went to see my gp and collapsed in the waiting room with heart rate of 150, terrible bp and extremely wobbly. Sent to hospital by ambulance (2yo thought it was great to follow a nee naw). Spent all day waiting and having various test then sent home again (still breathless and chest pain and in utter agony with Ra after spending hours on a hard trolley) last night with cannula in so I could be back at 8.30 to have a ct scan to check for blood clots.
Turns out I've got pneumonia and ra in my sternum.

The doc on the ward could not get rheumatologist to call him back. After waiting hours I rang the consultants secretary from my trolley. I might have expressed my disappointment at being abandoned (if I hadn't been trying to contact them for 2 wks I wouldn't have been stamping my feet so hard). Surprisingly within 10mins a registrar had appeared and I expressed my disappointment with him too.

So finally at home under a blanket 'looking after 2yo-he's watching fireman sam on a tablet) until husband collects 6yo from school then I'm going to bed.

I've got two lots of antibiotics for the pneumonia, three weeks of steroids to attempt and beta blockers for high heart rate (ward doc has assumed the high rate is down to pain). The ward consultant was v condescending yesterday. I absolutely hate the way they say the pain is 'just' the Ra and fibro. I could have swung for her and felt like I was a fraud and overreacting. Once they decided it was ra no one checked my pain score or was that bothered. Then rheumatologist was bothered either I felt really special.
Sorry for the whinge but I'm feeling v sorry for myself and felt like no one believed me.

stickywicket

That was an awful experience for you, jenzie. How are things now?

Starburst

That wasn't a whinge! That was a post about being disbelieved and we should be trusted to know our own bodies. I'm sorry you're so poorly. I don't know how you do it with little ones too. Take care, Jenzie xx

jenzie06

I've spent the last couple of days in bed unable to breathe and feeling like a wrung out rag.

My gp rang today to check how I'm doing and explained what the consultant on the ward said. As soon as she had decided that it was the ra I didn't get my bp, heart rate, oxygen checked again and pain relief was minimal despite me being in tears. She decided that my high heart rate was my reaction to pain (despite being classic pneumonia symptom). It was only because I had a ct scan just double checking for blood clots that they found the infection. My gp called her a rude word which was nice of him.

My rheumy consultant also seemed to have got the message as I received a letter saying she will get me a nurse specialist appt before I see her in January plus she's is close to getting me approved for the new drug before NICE rules on it.

Keep your fingers crossed everyone that I'm not allergic to it and that it works, I have to say I'm nervous.

Starburst

Oh dear. I know the GP phoned but do you think you need to be checked in person? You sound really very poorly and it's worrying.

That is good news about the new drugs and I shall have all my fingers and toes crossed for you that it's the right one for you.