Triple whammy

[baggiesmalls]

So bit of a weird one . I've been trying for 17 months to get a doctor to take me seriously as I thought I had rheumatoid arthritis.
Took 3 attempts to get a referral to rheumatologist, and only then with a fight .

Anyway today got the diagnosis. Or rather 3 of them .

Yes I have rheumatoid arthritis.
I also have pernicious anemia
And coeliac disease.

Had a steroid injection to try and get it in remission and waiting to start methotrexate.

Now I've got the diagnosis and started really looking into it - the gravity of the situation has hit me a bit .

Reduced life expectancy.
Health implications long term .

I mean it's better than living in pain and immobile as I have been and currently am - and I've been trying to get someone to take me seriously for 17 months (dunno how much damage has been done in that time as two gps kept refusing to refer me in complete contradiction of NICE guidelines) only when I went in ready for a fight with a folder of pictures did the last gp I saw out in an urgent referral (and credit where it's due - the wait list here is a year and I was seen within 6 weeks of that referral so .....

I thought I feel triumphant or something. But I don't. I feel flat .

I might book a couple of days off just to process and rest before my next fight (critical illness claim and PiP )

I live alone . No one to chat it over with and of the few friends and family who know their attitude is "well as least you've got the diagnosis now and it can be treated " which is true . But I think they think it's just old age or something. (I'm early 50s and been unable to carry a shopping basket, climb stairs , drive , clean - had to hire a cleaner to help me with housework)
Family haven't really registered the impact it's had . Or avoided it . Or think I'm exaggerating. Dunno which .

The going gluten free will be easy as I've gone off all bread , rice and pasta anyway !

The b12 deficiency I'm having injections for
Consultant say's probably vit d deficiency too so guess there's some treatment for that ....(?)
And waiting for methotrexate for the RA

And then what .....?

Shortened life expectancy. I keep joking it's ok s it will be the right end of my life when I'm dribbling into
My stewed prunes

The other things scare me a bit . Dunno
Whether to look or not at the implications or live in blissful ignorance like the family is .

Got breast screening this week too first time ever . All I seem to have done is sit in hospital waiting rooms this week !

Ok that's a lot to deal with at once! At least you have some answers and a bit of a plan.

i have pernicious anaemia too and with decent treatment (not the standard 12 weekly jabs!) it's absolutely fine. I spent a lot of time initially panicking about it though.

one thing I would say is that coeliac disease can itself cause b12 deficiency so you might find when that's under control that you don't actually have PA, you had b12 deficiency (PA is only one cause of b12 def).

Hand hold. It is a big shock to process and expecting a diagnosis is different from actually getting one. And you've had three. All at once.

I felt I had no choice but to take a day off to let it sink in. Phone in sick - this has enormous implications and you need the headspace.

I was also very upset about decreased life expectancy. My consultant told me that a well-managed disease with healthy lifestyle can mean that there is no reduction. It's a case of finding the right meds and the right lifestyle.

For me, that is top-dose methotrexate plus sulfasalazine. In addition, I have changed my diet which has an enormous effect. I've cut out nightshade vegetables which are my worst trigger plus cut right back on sugar, which has stopped the stiffness.

Knowledge is power. But give yourself time to take all this in. And talk to us when there's no-one in your actual life who gets it. We do.

Should have said, I have RA plus pallendromic rheumatism x

Thank you ....I'm sure it will all work out and I'm glad I didn't have yet another fight - at first I thought oh here we go again until he looked at my scan .

I'm going to research diet .

That is a lot. But actually a real success to get it properly diagnosed. I have RA and numerous other health conditions. While RA is undoubtedly more serious than osteoarthritis (which I also have) it's treatable. With luck the drugs will get it completely under control and you'll be as mobile and pain free as you used to be.

If you've got coeliac disease you should be referred to see a dietician on the NHS. A proper coeliac-compliant diet can be more fiddly than you might think; I don't think it would necessarily be a good idea to start cutting out other things until you've got a handle on that.

Or did you mean that you're going to look at diet from a coeliac POV? Apologies if so!

Yes, you can be vitamin and iron deficient purely from the coeliac disease and as a PP says, (unless you've tested positive for IF antibodies (for the PA)), your low vit B12 may be secondary to the coeliac. If that's the case then once you've got the coeliac under control, you shouldn't need B12 injections.

It won't hurt to put yourself on vitamin D tablets. You should ask to be referred for a bone scan; a 50 year old woman with untreated coeliac disease is at higher risk of osteoporosis too (sorry).

As someone with coeliac disease then yes, you'll have to avoid bread and pasta. But rice is absolutely fine. But there's all sorts of other things that can contain gluten -- sausages and chips, for example; beer, some spirits; even some vinegards can be a bit "iffy". Oats can be OK but only some very spcific brands, as others are contaminated with wheat flour. And so on, it can be complicated.

I don't have coeliac disease but my best friend does and I've learned a lot from her. She reckons that membership of the Coeliac Society is well worth it for the info that you get. The plus side is that if you follow the diet properly, you can quickly start to feel a lot better.

Thank you - yes that's my hope . It's been so debilitating! My career has completely changed, I'm virtually house bound , everything is a struggle, so when I did get the diagnosis today I felt relieved - it's just been a bit of a head spin at the same time .

Thanks mauvish

Yes I've got tons of research to do . I feel sick all the time and some things don't stay down (sorry tmi)

Thing is I only eat one meal a day and could happily live on salad , homemade dressing, steak and new potatoes for the rest of my life !

Explains why a lot of the time after I've eaten the "wrong" food I feel sick and end up in bed .

The b12 explains why I could sleep for England.

If I go into the sun I come out in a rash . I'm almost blue white . My fingers are blue . UV light hurts me . Food hurts me. Moving bloody hurts me . So yeah need to get a handle on this plus I've got lung issues , thought I'd had heart attack twice - seems it's all related to the RA but the consultant played the lung and heart issues down - my veins in my feet and ankles are black , h said if I had lung heart and vascular inflammation I'd be very ill- forgot to tell him had to
Call ambulance but I had no one for my dogs so I couldn't go to a&e- I spent a month in bed out of it with pneumonia.

I'm not a complainer and I have a high pain threshold. He was quite blase about it all - just said he'd get the nurses to ring me with an appointment to start methotrexate.

I have to start vit d injections now too.

That sounds tough OP, and I hear you about it being a bit of a head spin. I'm still trying to get to grips with being diagnosed with Lupus on top of my other stuff. I'm still trying to avoid methotrexate, no idea why i am except my body hates all medicines except paracetamol 🙄

Just as an aside (although I have no idea of RA symptoms tbh) but Lupus can bring you out in a rash in sunlight and you have to stay covered outdoors at all times.

Look after yourself, and rest, you've had a bit of a shock today

I'm on methotrexate, started with tablets and switched to injections at 20mg. I also take sulfasalazine and as a combination they've been a great treatment and kicked in quite quickly. You really need to watch your alcohol intake though. It sounds like your hospital will be on it for monitoring though as that's really quick for coeliac results to come back and I'm sure we don't get vit D injections here on the nhs.

Apparently we do get vit. D Injections on the nhs - they've already written to my gp to start them

Yes I'll be watching everything now including alcohol- I've got more of a craving for sanpellinegro soft drinks anyway lately .

Gluten shouldn't be too hard to avoid and the smell of pasta makes me feel sick so I think my body is telling me what to avoid

It's the bloody mobility issues and pain / swelling causing most issue for me at min

My results have come back within a day - very surprised!

I'd already had other blood tests tho including screening for coeliac disease a few weeks ago when my b12 levels came back so low

Just hadn't tested for vit.d .

Vit D injections tend to be a comparatively short course, just to get your levels up, then you switch to tablets - so you won't be on (yet another set of) injections for this longterm.

Don't forget to ask about an osteoporosis scan.