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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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macaronip1e · 01/12/2019 15:26

PS - you should get yourself a new GP

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nononever · 01/12/2019 15:37

Enbrel appears to be licensed for it too as well as another three, so you should have options. Your consultant might give you a choice and a heap of leaflets to read. They did with me. My treatment is very much patient led which I'm pleased about, I've always been given options. I've had a slight flare up due to having to stop medications for 4 weeks due to minor surgery (in case of infection). We have a big trip coming up and my consultant has given me two options to consider in case things don't settle down completely before we go. If I'm ever unsure of the options I always ask the hypothetical question, off the record, if you were me?

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DragonontheWagon · 01/12/2019 15:38

I have what you have Op with various other add-ons for good measure. I inject Cosentyx monthly which is an IL17 inhibitor, another type of biologic drug. And for the first time in years my excruciating lower back and lots of other joint pain, is finally under better control.
Yes I still need very regular pain relief but I feel like a whole new person on it.

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Hecateh · 01/12/2019 15:53

Might be worth doing some research on Vitamin D.

I don't think it would be a miracle cure but it could slow down/stop deterioration if it was a factor for you.

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CallmeCallamity · 01/12/2019 19:19

Tried Cosentyx for 5 months but couldn’t live with the side effects.

Been on Benepali Etenercept for 19 months with no side effects whatsoever and has been life-changing. Can now put my own socks on and actually roll over in bed at night now!!

MRI’s are now annually whereas they used to be quarterly and I the rheumatologist and his team are available on email and will reply within half an hour whenever I contact them.

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Sunmoonearth · 01/12/2019 22:25

Callmecalamity. What were the side effects? Sorry to ask but I'd like to have an idea of what I'm in for.

Thanks to you all. So much info.

Nooneever. Thanks. I am straight down there to ask for the NSAID you recommended. I can't believe a lied to me (well actually I can). Total turd.
It's well worth having a go with it.

Macaroni. Great to know. That's so useful. Thank you.

Dragon. Brilliant to know. Thanks.

Thanks so much to you all.

🎄

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nononever · 02/12/2019 06:58

Good luck @Sunmoonearth, I hope he doesn't bullshit you. Living with constant pain is soul destroying.

As an aside, I was in hospital not long after I was diagnosed and it was all over the news about a wonder drug for arthritis. The was a before and after clip of a young woman who was crippled with pain. She was bounding down the stairs after treatment, pain free. I asked my consultant what it was and if it was available and she said yes it was a wonder drug but was no way near ready for approval and it would be at least 10 years before it was readily available. She was right and that wonder drug is what we have today in the form of biological drugs.

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CallmeCallamity · 02/12/2019 07:47

Don’t mind answering questions at all Smile It’s great that we can help each other to a degree.

Had absolutely no productive help to me regarding mobility, inflammation or pain reduction.

Only thing it gave me was massive oral trauma to the point that I lost 3 stone through being unable to eat and couldn’t even drink water through a straw.

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Sunmoonearth · 02/12/2019 23:21

So went to GP. Saw one his colleagues. Who was rude to me, refused to refer me for NHS physio (apparently a degenerative autoimmune disease isn't enough for a referral ffs).

I challenged him and said I had been diagnosed by a consultant with a lifelong autoimmune/auto inflammatory condition for which main part of treatment was physio as per NICE guidelines.
He said I was being very aggressive. I wasn't I quietly spoken perhaps a little exasperated in tone.
He then made it clear he wasn't going to refer for physio.

I asked about all the other anti inflammatories I had been told didn't exist. He said "which one do you want" I said wanted the most suitable. He shrugged and said he didn't know. I hinted he could look it up but he just said there an stared at me. So I suggested NABUMETONE as was recommended here. He said it was mostly used in the states and didn't even know whether it was available in UK. So after some googling, it turns out it was and he prescribed it.

I had printed off research which shows that women with low levels of estrogen relative to age, have higher AxSpa disease activity and pain than those with higher levels of estrogen. I've been on HRT for 18 months and despite the 75mg patch, my levels are only 200. So I asked him and showed him the reseach I'd printed off.

He said he would give me the 100mg patch and then started saying that estrogen was a breast cancer risk etc etc

So I said given that the rheumatologist wants to treatment with Anti TNF medication which carries risks of 4 different types of cancer and lots of additional potential health issues, the extra 25mg of estrogen would be worth it as it was essentially a lower risk item. 😩 ffs. Lecturing me on cancer risk when you're facing autoimmune disease and anti TNF is an absolute joke!

So he was an even bigger bell end than his colleague. I was very upset afterwards and I'm still upset. I cried in front of the children which I was cooking dinner.

I was only diagnosed and the full implications of this explained to me Friday. I've barely taken it in and when I asked for the medical help I'm entitled to I was ignored and belittled.

Nooneever. That's good to know that new things have been invented in such a short time. Hopefully that will keep going.

Yes it is shitty being in pain all the time. It's like the pain is very loud in my head and sort of takes over from everything else.

Calamity. Those side effects are scary 😬 how did you manage to persist for so long.

Have you not had referrals to other outpatient services such a physio and pain management?? You're entitled under NICE guidelines. (They quote the fucking NICE at me when they want to get out of paying for something, so I've started quoting it right back at them!)

Sorry this was really long and ranty. I'm really upset. Am hoping the nambumetone works. Pharmacy didn't have any so it's tomorrow's excitement.
Thanks

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OrangeZog · 02/12/2019 23:28

I’m sorry you are going through this, OP. You say you have a positive ANA but what is the result and what pattern is it (eg 1:320 speckled) as that in itself is often quite informative of what autoimmune condition you have.

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Sunmoonearth · 02/12/2019 23:58

Orange. It was 1:80. Homogenous. Titre 1. Not sure what that means

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nononever · 03/12/2019 05:28

So I suggested NABUMETONE as was recommended here. He said it was mostly used in the states and didn't even know whether it was available in UK. So after some googling, it turns out it was and he prescribed it.

WTF! I cannot believe how badly you are being treated at that practice, it's shocking. I don't know where you live OP but in Scotland we can self refer for physio. When you see the rheumatology consultant ask him to refer you. Can you change surgeries? It would definitely be in your best interests. Keeping my fingers crossed you tolerate nabumetone Flowers.

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Clarityneeded · 03/12/2019 05:48

Can you see a different GP? This one sounds like he is the wrong line of works entirely.

I have been in a ‘residential’ physio/hydro course referred by my rheumatologist team (within the same building which probably helps). They wanted me to do it when DD was 1 but obviously I refused as she was so small then when she started school they twigged! I blatantly refused to ‘live on site’ given I live only 20 mins away so I just drove in daily for 5 days of one week.

NASS who I spoke if in a previous post run voluntary sessions of hydro and physio using locations of either schools or hospitals. I specifically choose the hospital for the hot water. It costs me £3 a week which goes towards the maintenance. The sessions are run by the physios within the hospital rheumatologist team and you can show up in an ad-hoc basis.

You don’t need to be referred to attend. I know it’s not ideal that you haven’t been referred to physio but they may be able to advise.

Will come back later. Currently ‘in negotiations’ with a child!!

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lollybongbong · 03/12/2019 05:54

Your anti-thyroid results show that you have Hashimoto's disease BUT it has not yet done sufficient damage to your Thyroid to impact its function. Hence why your Thyroid function appears normal at this stage. Basically, you are in the early stages of the disease. It won't go away and at some point, it will damage your thyroid and you will probably need to go on medication. Sorry I can't help you on the other things, but sending you hugs xx

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Soontobe60 · 03/12/2019 06:05

Having read through this whole thread, I'm absolutely amazed that you are still with the same GP whom you are so so scathing and rude about.
You have had numerous consultations via your GP and private insurance, a multitude of tests, suggestions of lots of drugs which you have rejected much preferring to listen to advice from an Internet forum but then also say you can't take drugs! For someone who seems very knowledgeable about all things medical, complaining that your gp has not made any suggestions as to how you could manage your high blood pressure surprises me. 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.
You can't just rock up at your doctors surgery demanding instant answers. Or instant referrals. And then make derogatory comments about the gp because you can't get your own way! You say you can't take the suggested anti depressants because it will affect your insurance. But if you're in that much pain anyway, surely that affects your ability to work?
You need to sit back and take stock of yourself. Make a list of all your symptoms. Which ones could be managed by self help? What meds have you tried, rejected, which worked? I'm afraid you come across as someone with health anxiety, probably hence the suggestion to take the anti depressants. You're getting older I assume because of your issue regarding HRT, but things do go wrong with our bodies as we age, and some things just can't be made better. You sound like you have some stress in your life and this also impacts on your ability to manage any health issues. My MIL is very much like this. Wants answers, improvements, to feel well. But she has COPD and chronic heart disease. She's never going to feel as well as she did 20 years ago. But once she was placed on the appropriate meds and had carers come in to ensure she took them as prescribed, her quality of life improved massively. (That included taking anti depressants even though she wasn't depressed!)

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Soontobe60 · 03/12/2019 06:25

You may find this useful, particularly the bit about treatment.
nass.co.uk/wp-content/uploads/2018/11/Physiotherapy-modules-4.pdf

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Sunmoonearth · 03/12/2019 20:46

Soontobe60. Wow. Just wow.
My current weight gives me a BMI if around 22 (I'm 5'10" and weigh 71kg). So I don't think I need to loose weight. But thanks for the helpful suggestion!

I'm 46 btw. Early menopause. So age has little to do with it.

I've not rejected anything! I had to ask and ask and ask for something to be done. Only then did the Gp give me Naproxen which had side effects that left me unable to work and did very little for the pain.
He offered nothing else and after 2 more appointment and 3 phone consultantions where I begged he offered Etoricoxib. This did work for the arthritis but gave me blurred vision and headaches. It also made my blood pressure go up to 178/116 so not only did I not want to take it but the Gp didn't think it was particularly safe.
He offered nothing after that. For another 2 months. Save to say the anti depressants which would mean I would have to close my business as wouldn't be able to maintain insurance.
I then saw a pain management specialist who said I could try Celecoxib. But he wasn't expecting it to be particularly fantastic. It wasn't.
This consultant referred me to the consultant rheumatologist who diagnosed me with Axial Spondyloarthritis on Friday.
Soontobe60, perhaps you don't know what AxSpa is? You may do well to look it up before making such unhelpful suggestions.
The Consultant Rheumatologist said that antidepressants were a bad idea. In his words: "they will turn your brain to mush and you won't halt the disease progression. You require treatment with Biologics"

It's about halting the progression of the disease before it fuses my spine, Soontobe60. That's why the Gp delays are outrageous as they have delayed the treatment I'm entitled to for a long time and the disease has progressed. Part of the spine in my neck has already fused due to lack of treatment.

But thanks for the suggestion of losing weight! Lovely

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Sunmoonearth · 03/12/2019 20:48

Ps. Still with the GP because no other surgery in my area has an open list or I would have moved a long time ago!

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Sunmoonearth · 03/12/2019 20:50

Clarity. Oooh. That sounds useful. They have outpatients hydrotherapy here but I can't get the Gp to refer me. I'm going to keep pushing for it. Though. Good suggestion. Thank you so much Thanks

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Sunmoonearth · 03/12/2019 20:57

And Soontobe60. You have achy knees and joints. This isn't the same as a chronic autoimmune/auto inflammatory disease that is trying to fuse your spine and where your tendons are attached to your bone, the inflammation there causes bony spurs to grow so every time you move your tendons have to graze them. It's called Enthesitis. Agonising. I have this in my hips (consultant on Friday said the bursitis was a misdiagnosis) my ankles, my wrists and my shoulders.
He also said my Vit B12 wasn't dietary, it was absorption issues caused by AxSpa.
And the movement in my rib cage is now restricted by the ebthesitis so my breathing is restricted.

So it's not just a few achy joints and it's not because I'm fat (which I'm not).
My very first Biscuit

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nononever · 03/12/2019 21:03

@Sunmoonearth when you see the consultant ask him to refer you for physio and hydro, you could mention that your GP didn't deem it necessary. It is actually my physio that refers me to hydro should I need it so you may well find the physio (when you see one) will put you in for a hydro referral, definitely ask for it. Hopefully once your in the NHS rheumatology system you will start to see light at the end of the tunnel.

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raspberrymolakoff · 03/12/2019 21:54

It does sound like they're considering many things including Rheumatoid Arthritis. The peroxide thyroid marker made we wonder if you have vitiligo, they're strongly related.

Sadly a lot of us have various intertwined auto-immune problems, sometimes there isn't a name for it. One of my adult children has been told just to say they have auto-immune syndrome. It seems once our bodies start attacking themselves they go haywire.

It does sound, at least as if they're looking at all options for you.

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Sunmoonearth · 04/12/2019 07:58

Noonever. I absolutely will hydrotherapy sounds very soothing and appealing. I'll ask the consultant.

Thanks for suggesting that.

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Sunmoonearth · 04/12/2019 08:06

Lolly. Thanks. The consultant rheumatologist did say exactly that on Friday.

He said over the relative short term my thyroid would cease to function. And not to worry because there were good drugs for that.

He gave me a lot of bad news. Delivered very well. Clearly and honestly without hiding or prettying up the facts of a poor situation.

He spoke about my prognosis with regard to AxSpa and the treatments that were necessary for my outlook to be good.
He also said to look at diet but not about weightloss. He said autoimmune conditions often have additional things that trigger flares or things which make it worse. Often food/gut related.
He told me many of his patients have had good results with gluten free or vegan diets.
He said to have a good think about times where I've felt particularly good and times where I've been particularly bad and try to recall things I've eaten/not eaten at those points. He also said it could be a bit of a process but worth sticking to as the results will help enormously.
I'm still trying to take it all in.

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DragonontheWagon · 04/12/2019 09:06

@Soontobe60 sorry but it's people with attitudes like yours that make things so difficult for those of us with autoimmune diseases that take years to get to the bottom of, it's not ageing, the type that the Op and I have you can get as a very young child. So yes we have every right to get stroppy when we are not listened to.

And the drugs that are being suggested aren't something a Gp can offer, they are only via consultants at the hospital and they are restricted to patients with moderate to severe disease activity that can't be controlled by traditional disease modifying drugs. They suppress your immune system, so yes, us patients have every right to think carefully about injecting them. And as they cost between 10-15k a year per patient, I'm sure you'd rather the Op considered this carefully!

I'll stop lecturing now but it makes me so mad when people wade in with the lose weight, change your diet and exercise more as if it's a cure all...

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