Help! After 20yrs consultant has changed her mind

jenzie06

So 20 years being treated for RA my consultant has changed her mind.

This is all based on a spinal scan I had about 6 months ago. I'm getting terrible pain in my sacroiliac joints. It wakes me up all night despite painkillers and amitrip and I can't walk far even on a good day anymore. I'm now having to wear a pelvic band.

I have sacroiliitis but no ankylosis on the scan. But my consultant now says its AS. Now, normally it wouldn't bother me (call it Bob for all i care it still hurts!) but the change in diagnosis means change in meds. I'm taking Baricitanib and its actually helping (the first one in 20 years!!!) my hands and feet and the horrendous grinding flu feeling.

I don't agree with her. She keeps saying I have no RF in my blood and I have RA negative although in one of her previous letters it says I have CCP positive RA. I have erosive changes in hands and feet.

As far as I understand AS starts in your pelvis then moves out rather than the other way round?!

frogmorton

Hi Jen
I can see where the consultant is coming from and certainly the AS diagnosis explains that dreadful pain.

l wonder why the consultant isn't considering a dual diagnosis? Many of us on here have more than one thing going on don't we?

I can absolutely see why you are so upset if you finally have a medication which is working! I would be scared as well at the thought of losing something which actually helps

Is it not possible for you to continue on your present meds then???

Oh and how is Harry our first forum baby doing? t4591

Love

Toni xx

jenzie06

Hi Toni

I suggested the duel (I mean I've got fibro and Myasthenia Gravis too why not something else!) diagnosis but she said it was really rare to have AS and RA together. I'm going to see a spinal arthritis specialist in the dept. Unfortunately the appointment is December. I will shuffle around until then. I'm hoping being able to get back in the pool will help. I've been in plaster all summer after having my thumb fused (which then broke again so more plaster!).

I'm not planning to stop these meds. They don't try and kill me like the other one that helped. I seemed to have developed lung issues. Last winter was horrendous, 6 months of pneumonia and chest infections almost solidly. I don't present normally for pneumonia so have to battle the doctors before diagnosis. Why can't i have something normal? Now lung gas diffusions are low which suggests thickening of the tissues. Deep joy. Keep your fingers crossed for this winter, I'm rather nervous!

Harry is now 8!! My goodness where did that go? He's great, helps a lot. He's even learnt how to bras up this summer as I couldn't do it. Life skills! He is still struggling with his hearing, they now think he has auditory processing disorder (but we have to pay for him to be tested £790!). It's just trying to work out how to help him (like only giving him one instruction at a time as he can't cope with more). My youngest Dillon is 4 and has just started school and loves it! I look after my niece before and after school every day so dealing with 3 kids is busy and noisy but my days have become quite civilised from 9am to 3pm.

Thanks for replying. xx

ps I've been trying to add a picture of my gorgeous boys but I've been foiled by technology! Harry has a dimple in one cheek and freckles all over his nose and Dillon is a blonde haired angel who is full of mischief.

trepolpen

Hi Jen

RA does not affect our backs & think that is why your consultant change her mind to AS , I know very little about AS but would question if your back was seperate to your other problems (ie: RA )

As for the biologic , pleased it helped you , I was on a similar drug tofacitinib & did not have the benifit I was hoping ,

you could ask for a seperate opinion , just hope you can stay on+ the drug

frogmorton

Hi Jen

Harry is 8 Harry is 8??? :shock: :shock: the new baby Dillon is 4 :shock: :shock: :shock: time just flies doesn't it? It's lovey to read that, despite your health issues, you are being a great Mum and Aunty too

I hope the civilised hours between 9 and 3 are enough to recharge those batteries!

Not great news to here of Harry Auditory issues though :? bless him. It may be that you are developing ways to help already, (such as only giving him one instruction at a time), and he will do fine. My eldest has dyslexia, but by the time we found out she had been wise enough to develop her own coping strategies! she passed her A levels no problem

Back to your health and the new AS diagnosis it seems to me that you, me and now Trepolpen all agree people can have multiple issues healthwise.

Maybe the 2nd opinion she suggests is an idea. The spinal specialist you are seeing in December might be the answer. I will have my fingers crossed for that appointment and that your chest stays ok this winter ((()))

Love

Toni xx

jenzie06

I had a second opinion at Bath. But I was in a fairly good place on the day and the consultant decided its all Fibro with little RA involvement. They're running behind so it will be 11 months almost 12 since the last appointment. I feel like I'm shouting and no one is listening.
Previously, when I've got frustrated I've gotten upset or shouted they've suggested antidepressants! I'm not depressed just cross!!

I've managed to add a picture of the boys. Fingers crossed it works.

Starburst

Those boys of yours are gorgeous, just gorgeous. You must be very proud. I’m sorry you’re going through such a hard time with your health. I admire you, it’s not easy dealing with what you do and looking after your precious babies. They’re not really babies, eh? Time flies.

At the beginning, there was a bit of flapping over my diagnosis but it seems to have settled firmly on RA. Would your current medication not be used for AS? I know you had another opinion but would a further opinion be useful given the complexities of your health..?

I have recently been diagnosed with MG, although it seems fairly mild fortunately. How are you coping with that on top of everything?

Take care, Sophie x

jenzie06

Hi Sophie
I'm biased but I think they're gorgeous too. Although they both drove me bonkers this morning

I've been going back through all my medical letters and reports to see if I can get it a bit clearer in my head.
Previously, my consultant has said that I have anti-CCP positive blood result with active RA. I've never had a positive Rheumatoid Factor blood test (although I understand that this is quite common). I've also got Fibromyalgia, ocular MG and IBS.
The medications I'm taking at the moment (Baricitinib) is working. My hands and feet are more comfortable and the swelling is down. I've got documented erosions in both hands and both feet.
I've now got inflammation and stiffening in both sacroiliac joints and my neck keeps swelling and causing sensation changes along my ulna nerve into my hands.

The baricitinib does not treat the pelvis and I would have to change meds (this is the first meds that have worked and haven't put me into anaphylactic shock) if it was AS. I'm not allowed to take both RA meds and AS meds at the same time.

How does your MG affect you? Mine is currently restricted to my eyes. My left eyelid droops when I get tired and I have double vision in the periphery of both eyes which I don't even notice anymore as I turn my head. The muscles in my eyes also flicker a lot. I can get slurred speech (although I swear its just my husband not listening properly!). I'm not taking any meds for it as the side effects are nasty, I'm taking too many already and the MG is mild. However, the DVLA currently are deciding whether or not I am able to drive safely (I can or I wouldn't risk the boys). If they take my licence I'll be up a famous creek without a paddle.
Interestingly the MG came on when I spent 12 months off all meds and waiting for the Baricitinib to be NICE approved (my thumbs also became damaged during this time and I'm having surgery to fix these issues). But as usual all the tests came back fine (such is my life) but I had treatment for pneumonia with a big dose of steroids and it helped massively. It does mean you get free prescriptions (hope you know this!).

I wish I had a doctor who would look at my entire symptoms rather than each specialism. I don't think they get the full picture.

Hope you are having a good day.

Jen x

Starburst

Hi Jen,

You’re not biased, I mean you might be but they are genuinely very gorgeous. They look quite similar. I bet they’re good friends.

I think something like 30% of people with RA have a negative Rheumatoid factor. I was under the impression anti CCP is more specific to RA but I could be wrong, so don’t quote me on that. I didn’t know you couldn’t take RA and AS meds at the same time, that makes things more difficult for you.

I have a droopy right eye, sometimes it refuses to open and double vision. It’s also affecting my face, swallowing, left arm and left leg as well as my neck. That said, it’s fairly mild and has responded well to the medication. The side effects aren’t much fun though, I agree.

That’s interesting yours came on when you were off meds because mine also appeared very rapidly when I was off all RA meds after my jaw replacement. I wonder if there’s a link.

I relate to what you’re saying about a doctor looking at you as a whole. It’s very difficult when you have complex health issues and even when doctors write to one another, it’s not the same as having proper joined up care. I’m not sure what the answer is though.

Take care xx