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Autoimmune disease

Which autoimmune condition is this?

101 replies

Sunmoonearth · 12/10/2019 18:53

Had hip and low back pain for 10 years. Been back and forth to GP and mostly ignored.
Finally referred to an orthopaedic consultant in May. After MRI diagnosed acute sacroilitis.
Sent for physio and pain management consultant. First pain person was hopeless.
Saw someone else who repeated MRI (same again but saw wear and tear on hips as well). And he referred me to a consultant rheumatologist. Blood test was ANA positive. Also positive for Anti Thyroid Peroxidase (261) and anti thyroglobulin (940).
Normal thyroid function maintained apparently.
He didn't really say anything to me during the appointment but wanted another MRI of a slightly different area (the 4th MRI since June!!).
I'm really fed up. No one has helped me with my pain at all. No one has given me any tangible advice. No one has prescribed anything to help me at all.
The physio is excruciatingly painful and she isn't helping me at all. It's so painful afterwards I need to take lots of codeine based painkiller afterwards and I'm usually in tears.
Oh and I have had a DEXA as well but no signs of osteoporosis at all.
Anyone help with what all of this means? Anyone help me with a best guess?
I can't understand why 6 months of investigations and endless xrays, MRIs and blood test and none of the consultants are telling me anything.
This is all private via insurance. They've all promised to write to me but never do.
All they do is ask me back for more appointments and tests.
Please help me find some sort of a solution to all of this.
Tia. Thanks

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nononever · 04/12/2019 14:38

Well said @DragonontheWagon, it can take a long time for medical professionals to get to the bottom of an autoimmune disease, it can be a long difficult and frustrating process, not to mention painful.

@Soontobe60

My GP has asked me to lose weight, alter my diet and increase exercise in order to reduce my BP. And do you know what? It worked! I also have joint pain in my knee and hip, and the changes I made to manage by BP also helped with theses.

Sounds like your high BP and painful joints were self induced if you were overweight and lacking in exercise, compounded by the fact losing weight and exercising did relieve your symptoms. Lucky you huh.

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Soontobe60 · 04/12/2019 17:16

I'm sorry, but at what point did I say you needed to lose weight? For all I know you could be a size 8 and 6 foot tall!!! That's some inferential deduction you made there.
FYI, I've just recently been diagnosed with rheumatoid arthritis and have been trying to find out the best way to manage my disease, so I have some sympathy to your situation. I gained weight recently because of my inability to continue with the activities I used to do, plus a particularly bad menopause, neither of which were self inflicted thanks.
You're right, I had never heard of your disease, so I did a search and found out lots, but yes, it's a very complicated. The link I posted seemed to explain it well to me, particularlybthe bit about medication, which is what you were struggling with.

Whilst I understand your frustration at getting answers, I still think the way you speak about your GP, who's trying to help you, is quite shocking.

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Soontobe60 · 04/12/2019 17:20

@nononever
Sounds like your high BP and painful joints were self induced if you were overweight and lacking in exercise, compounded by the fact losing weight and exercising did relieve your symptoms. Lucky you huh.

Nope, not at all. High BP possibly through stress at work, excess weight through menopause, painful joints through rheumatoid arthritis. Weight loss obviously will improve the stress on my joints that the arthritis causes though.
No need for the sarcasm.

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Sunmoonearth · 04/12/2019 20:00

Dragon and Noone.
Thank you both Star

I have found trying access services I am entitled to and should already have referred to impossible.

My awful Monday GP visit, I was told that there was no such thing as NHS physiotherapy. Xmas Angry

So I printed the local physio services referral detail and service along with their criteria. For my condition there is an urgent referral for 5 days if you're even suspected of having inflammatory arthritis. I've been diagnosed by a consultant and I should have been referred months ago.
My GP has a letter from the first consultant dating back to June stating that he suspected AxSpa and that I should be referred.

At that point I should have had urgent referrals (this is what NICE and local guidelines state) for both rheumatology and physio. Instead I have been blocked from accessing these services.

I wasn't copied in on this letter from the first consultant so it wasn't until last week when I requested it via his secretary that I realised my GP could have and should have helped me months ago.

Instead during all of this time, where I have had 9 appointments and 7 phone consultations, he's done nothing.

I've spoken to a senior member of staff at our local CCG who handle GP and service complaints today. I have given a brief outline and I have a meeting with them tomorrow morning. She said the surgery are in breach of their NHS contract.

The CCG have handled my urgent referrals btw and they have immediately helped action the help I should have received.

So Soontobe60, the Gp hadn't been trying to help at all. He has been pocketing money which should have been spent on patients himself by not referring patients - a cost which comes out of his budget and anything he saves is his to take home (I'm apparently not the only one who has complained about the same thing! There's a long list).

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macaronip1e · 04/12/2019 23:26

Pleased that the CCG are taking it seriously. Hope they help you access support/treatment quickly....and deal with the awful GP!

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raspberrymolakoff · 05/12/2019 01:35

OP my daughter has multiple auto-immune problems and has been trying to reset her leaky gut with an exclusion diet. She has don't it twice now, with medical help. It's pretty grim and she gets terribly thin but she does feel better on it. She and my husband both are gluten free and it improved the asthma side of my husband's rare disease exponentially at first. It's just bloody tough to do when you're a young mum with demanding little people .sounds like you've a good rheumatologist there. My husband's also says his patients are the best judges of which foods make them flare. For me with RA it's climate and viruses diet doesn't seem to help me (I have tried).

I hope you get to the bottom of it but we have come to the conclusion it doesn't matter if it's not named as long as the treatment works.

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raspberrymolakoff · 05/12/2019 01:37

Blame the RA for the typos. Sorry!

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Sunmoonearth · 05/12/2019 08:42

Raspberry. Very interested in that! Do tell me more.
Consultant had mentioned gluten free and vegan briefly and something we are to discuss he said.
The exclusion diet I've not heard of. Do you know where I'd find more information at all?

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raspberrymolakoff · 05/12/2019 20:28

Here you go: paleointheuk.com/aip/diet/
My daughter can't eat meat (aversion) so she has to be imaginative. There are some good threads with ideas to eat on Instagram if you're on it.
#aipforlife

I can't vouch for it but she did it at the suggestion of one of her medical specialists either her endocrinologist or her immunologist I can't remember which!

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raspberrymolakoff · 05/12/2019 20:31

Sunmoonearth I was going to DM you my daughter's link as well but can't remember how to send a private message!

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newbingepisodes · 05/12/2019 20:33

Ankylosing Spondylitis??

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newbingepisodes · 05/12/2019 20:38

I have evidence of AS on MRI and the very best treatment I've had is weight loss. Not used even ibuprofen for a few months now since I've lost quite a bit of weight.

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nononever · 05/12/2019 20:43

Hope you are tolerating the nabumetone Sunmoonearth.

Raspberry I just had a look at the AIP link, I don't eat meat either and all my favourite things are on the banned list 😬. Not sure I could do it. However I don't think I have a food trigger.

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oohnicevase · 05/12/2019 20:47

I have almost the exact same situation , I went private because the nhs kept brushing me off .. I've had mri's and blood tests and I go back on Monday . I have a lot of pain and have had for years . I do have a bad back and again have had for years and have seen many chiropractors and physios over the years but this pain is now in most joints . I've seen a fibro nurse and she said I don't fit all the markers for that so it's just unexplained pain. It's so so draining isn't it . I have high blood pressure too typically and am about 2 stone overweight partly due to the fact any exercise causes me to be in pain over above the normal for weeks ! 🙄

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Pythonesque · 05/12/2019 21:35

I'm glad dietary triggers have been mentioned. Coeliac disease can be viewed as another of the autoimmune conditions and they do tend to turn up in combinations.

I have the antibodies for Hashimoto's and have my thyroid function monitored regularly. It first flared as a thyroiditis more than 20 years ago and I was expected to end up hypothyroid. However it came back to normal range and has stayed that way; someone rechecked my antibodies once and they still show up. I don't know whether 30 years gluten-free has helped with this or not.

Back in my teens I actually did a medically supervised elimination diet - a fairly extreme one. It was very helpful in confirming that I had food triggers for a lot of my symptoms. IIRC 2 weeks on a very restricted diet was then followed with a series of individual food challenges. If I hadn't improved so much in the first 2 weeks we wouldn't have kept it up. I wasn't in the UK, and I'm not sure how easy it is to find immunologists / allergists with training to do these here. Trying it on your own would be something to approach with extreme caution.

What I recall being allowed on the one I did - and presumably there are other variations depending on what is suspected - was rice, lettuce, pears, parsley, lean lamb, a little egg. Possibly nothing else at all in the first stage! Told you it was pretty extreme.

One way or another I hope you can start to get some effective symptom relief and then some real improvements.

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oohnicevase · 05/12/2019 22:12

I'd love to do something like that because I'm sure I'm allergic / intolerant to something . I don't eat meat and little dairy so I don't know what it could be .

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wifeslife · 05/12/2019 23:07

@Sunmoonearth which pain specialist did you go to? I'm in Kent and I use Dr Singh @ the London Pain clinic he is excellent

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wifeslife · 05/12/2019 23:08

Can you have steroid and local anaesthetic injection into the joints ?

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Sunmoonearth · 06/12/2019 19:06

That's amazing. What fantastic information thanks so much everyone!

I could cry.

I'm going to look into the elimination diet and gluten free and discuss both with the rheumatologist next time I see him. He said I should read up on this type of thing.

Thanks again. Lots to look at. ThanksBrew

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raspberrymolakoff · 06/12/2019 19:26

Sunmoonearth and the person who also doesn't eat meat but is interested in AIP if you DM me (sorry I can't work out how to do it!) I'll send you a link to my DD's thread on Instagram where she published her daily non meat eating recipes for AIP.

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wonkylegs · 06/12/2019 20:45

Don't dismiss anti-Tnf because you are scared of reading about the side effects.
I have an absolutely fab rheumatologist (I had a shit one for years until things came to a head and I complained and got my current one and I've had her for over a decade) and when it got to a point to consider Anti-tnf we had a good open and frank discussion and honestly yes there are some scary shit sounding side effects but in reality the risks are very low and because you are monitored so heavily on them they spot any problems very very quickly. She is very good and she's very honest (doesn't sugar coat anything) so I trust her judgement.
Uncontrolled (untreated) inflammation is also really really bad for you not only with regards to pain but also in the stress it places on your body.
They are also finding the more years they have been around (relatively new) that a lot of the issues they were originally worried about aren't manifesting themselves in patients.
Anti-TNF was a game changer for me and I have had no side effects since I started it over 10yrs ago. I have RA and take it in combination with DMARDs and it's made a real difference to my daily pain, and ability to get on with my life.
Perhaps try to get to talk to an Anti-TNF nurse at the hospital before you dismiss them because they are very knowledgable and helpful.

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nononever · 06/12/2019 21:33

@raspberrymolakoff sent you a PM Smile

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Durgasarrow · 06/12/2019 21:48

Dear SoontobeI also have axial spondyloarthritis. Please do consider the Anti-TNF medications. They can change your life for the better in so many ways. Lowering inflammation is very good for your body. Although there are possible side effects (I have never experienced any, except that after a while, one medication stopped working and I needed to switch to another), there are also a number of benefits which are just as real. These drugs can lower your chance of heart disease and slow down the progression of the spondylitis itself.They lowers pain and depression levels. They truly can be miracle drugsand to anyone who says that doctors should stop and wait before prescribing them, it is serious conditions like axial spondylitis that they are created for. And btw, I'm sorry at the runaround you got from your shitty doctor.

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Sunmoonearth · 07/12/2019 01:26

Wow so much lovely information. Grin thanks so much.

I really appreciate you all taking the time to share about the anti TNF medication. It's really helpful to me.

Wonkylegs. Good to know that you've been on them 10 years without side effects. Amazing. Gives me hope.

Durgasarrow. I will. Absolutely. It really is encouraging to hear they've worked for you and without side effects.

Thanks everyone. Thanks

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Durgasarrow · 07/12/2019 18:27

I just want to add that I am very impressed that you have managed to persevere and find justice for yourself despite the bad care you have received from your unprofessional and uncaring health providers. It is very difficult to do so when one is in the vulnerable position of being both sick and being the patient whose health is being judged.

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