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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

OP posts:
Sunmoonearth · 24/10/2019 21:04

Hi Kitten.
Not as well as hoped. He will refer me to an NHS rheumatologist which is good (massive long wait tho).

He had absolutely nothing helpful to offer for now he would only offer antidepressants 😫 which i declined. Am in pain not depressed.

So years from the onset and more than 6 months of seeing consultants, I'm still in pain with no quick solutions or help other than the offer of antidepressants.

He wouldn't offer anti inflammatories as my blood pressure is high (he hasn't bothered treating it or acknowledging it for the past 5 years but today it was a useful excuse to do nothing).


OP posts:
OhYouBadBadKitten · 24/10/2019 21:39

That's very poo. The referral is good though. Some anti depressants are very good for helping with pain bizarrely.

I'll pm you with an idea.

Utini · 24/10/2019 21:49

Your Anti Thyroid Peroxidase and anti thyroglobulin results suggest hashimoto's (autoimmune hypothyroidism). This could explain symptoms such as the tiredness, high blood pressure and carpal tunnel.

Do you know what your actual thyroid hormone results are (TSH, free T4, free T3)? Unfortunately the NHS tend not to treat until TSH is quite high, compared to other countries. It's worth finding out the results, and pushing for treatment if they're borderline.

At the very least you should have thyroid function monitored regularly as you're at high risk of becoming hypo eventually with those elevated anti thyroid antibodies.

Sunmoonearth · 24/10/2019 22:15

My TSH is lowish at 1.67 with a free T4 of 17.6.

Does that suggest hypothyroid? Consultant said normal
Thyroid function maintained.

OP posts:
Utini · 24/10/2019 22:24

Ah ok, that sounds fairly normal to me. Maybe just something to keep an eye on longer term then.

I hope the rheumatologist can help.

Sunmoonearth · 24/10/2019 23:09

So do I.

The whole thing is utter pants. What is really getting to me is that the pain originates from various parts of hip and lower back.

That means they can only treat one bit at a time. It seems like an endless merry go round.

OP posts:
Stopyourhavering64 · 25/10/2019 00:08

Amitriptyline is an anti depressant often used for pain relief with relatively good results....I was in pain for 16 months with my vasculitis symptoms before I finally saw a rheumatologist , I'm on gabapentin for neuropathy and pain relief

moreismore · 25/10/2019 11:02

This all sounds so frustrating. I would again suggest a chiropractor if you can afford it. They treat holistically so won’t just address ‘one thing at a time’

Sunmoonearth · 25/10/2019 18:56

Stop. I don't want the amyltriptaline. I would need to declare this to professional indemnity insurance so it's a no to that or I would have to stop working.

More. I've now got an appointment with a local pain management consultant in 10 days time. Hopefully they can help with some of this.

I've also managed to get the GP to refer me to a rheumatologist. It's all booked but it's more than 4 months away.

If the private pain management consultant says he can refer me private sooner and the insurance will pay, I may end up seeing someone sooner but that's assuming the pain management consultant can't deal with all of it.

This is all from today. I'd seen GP yesterday and had a phone call with him today where he sorted the referral. They're normally a bit Teflon and you can't get anything out of them so I really really appreciated this. Good timing too. I woke up this morning with awful pain in lower back and hips and pain in ankles which is new. I made me feel like giving up until I heard back from GP.
And this afternoon pain consultants admin rang and sorted the appointment so things are happening.
I have also booked in with a physio. Sadly not available for 2 weeks but should be able to help once he is.
That's a lot of progress and I don't feel so completely awful.
I'd been so down over the last month about this.
I've got something called etoriccoxib from GP to have. I'd previously tried 60mg and it was so strong it gave me huge headache and blurred vision. He's given me 30mg to try instead. I hope I can manage the side effects because it really helped with the hip and back pain. Brew

OP posts:
scothols · 26/11/2019 21:04

How did the pain clinic go? I really hope you have made some progress through the system.

I have AS, though after reading your story I realise I was v lucky as my (private) rheumatologist diagnosed it v quickly but I could barely bend down when I went to see him initially.

I responded v quickly to an initial steroid injection- within days I was pain free for first time in ages, it was amazing! Tried various things and a year later am now on a low dose of steroids and sulphasalazine and am pretty much in remission!

These drugs are old, generic and v cheap!! Though MRIs and blood tests were not. My wonderful rheumatologist then transferred me to nhs, once condition was judged chronic not acute! This also potentially will give me access to further expensive treatment that my ins co won't cover though hopefully I won't need it.

If you're SW London/surrey way and want his details let me know. I really hope you get it sorted, keep pushing as it must be miserable for you.

Sunmoonearth · 30/11/2019 09:41

Thanks for your message.
Since my last post I have seen another pain management consultant who was useless.
I've since seen a consultant rheumatologist who has diagnosed non radiographic axial spondylarthritis.
He was private and said I needed to go back to NHS so I can get treatment as private medial won't cover them and they're too expensive to keep paying for ourselves.
He wants me to start on anti TNF ASAP.
I have a referral to nhs rheumatology but not for 104 days. Typical. I qualify for urgent referral according to the local Trusts website about AS and AxAs and reactive arthritis. This is supposed to be 2 weeks wait. However GP will only do the 4 month referral. Tosser.
I'm also not sure why he wants to use those. The side effects are worse than my original problem. He seemed to think there wasn't any other solution. I think that's bollocks and I want another opinion.
I can't have steroids as I've had an awful reaction to them. I'm very interested in the sulfazine you mention. I've tried googling it but not sure what type of meds this comes under.
Perhaps I could have this sulfazine on its own?
Did they offer you antiTNF biologics medication? If so did you refuse it due to side effects? Or was it not needed? I'm very interested to hear more about what worked for you. Do you have physio? Thanks again. Thanks

OP posts:
justilou1 · 30/11/2019 10:09

Honestly, the most obvious answer is rheumatoid arthritis. I would stay the hell away from any osteopaths & chiropractors until you have a diagnosis.

Sunmoonearth · 30/11/2019 15:45

Just. I have a diagnosis of Non Radiographic Axial Spondylarthritis.

There don't appear to be much choice in the treatment available though.

Anyone tried anything which wasn't NSAID, COX2 inhibitors or anti-TNF/immunosuppressants?

OP posts:
CallmeCallamity · 30/11/2019 16:28

Only Bowen which is an alternative IME.

Pain Management is the terminology they use.

Physio is ongoing for life. I fully agree with PP - stay away from the two justilou1 mentions. They put my neck in traction and this caused more harm than good.

FWIW, I get the impression you’re not keen but the Benepali has changed my life after I put it off for a year. The Sulphasalzine for my enthesitis has been absolutely rubbish for me but the professionals insist I should stick with it (18mths so far!) Physio want me to take paracetamol on top of that.
The Omeprazole for the inflammation of my oesophagus has helped a little.

The Naproxen works for me as long as I stay on top of it which I absolutely loathe doing it so try not to. I’m also on Topiromate for chronic headpain since the age of 5.

The procedures to remove the bone spurs worked well & that was 15 years ago.

The help is out there and once you get a great rheumatologist and team of nurses with physiotherapists linked to it, you’ll be well looked after in my experience.

I assume they use these drugs and procedures because they’re tried and the most effective.

You can sign up to the NASS app or website/magazine and their helpline is fantastic for advice.

Sunmoonearth · 30/11/2019 19:42

Why would you keep taking a drug with side effects and that doesn't work? Can't be very helpful for you. They can't insist you take it. You have choices.

I've already tried naproxen (did nothing for pain and gave me a headache). Tried Etoricoxib (gave me tunnel vision, banging rebound headaches which turned into migraines and blood pressure went up to 178/115). Celecoxib made me vomit uncontrollably.

I was given omeprazole with naproxen. Had a bad time with it. Terrible tummy problems for weeks after just two doses and all over rash from it. Nasty stuff.

I don't do well with drugs in general. I've never even been able to drink alcohol without being sick for days after (even 1 small drink).

I had an awful reaction to a steroid tablet once. I was in A&E at the time so I can't ever have steriods again. I had one tablet which was supposed to help but made me go bright red all over and made me unwell I was in bed unable to function for 3 weeks afterwards.

My worry is that the half life in your body of all the Anti TNF meds are 2/3 weeks. If I had a bad reaction, I could quite literally be sick for weeks or months afterwards. I wouldn't be able to look after my children or to run by business. And we would all sink rapidly. The fun experiment with celecoxib cost me days in bed and quite a lot in business revenue (I had to let someone go because of the losses). Not to mention the agonising pain every time one of these things go wrong.

It seems to me we are palmed off with second rate crap that have worse side effects than the original problem. It isn't really acceptable.

OP posts:
CallmeCallamity · 01/12/2019 07:06

DH & I were actually at the GP for a ridiculous amount of time discussing this yesterday because of our concerns with all the meds I’m taking, especially at my age already so I understand your concerns.

His specialist subject is actually this due to it being in his family so whilst it’s not good for him, it’s a bonus for us.

He was saying that behind the scenes there is so much more going on and that in 10 years time this disease will see people free of pain and symptoms.

FWIW, OP, my sympathies started age 24 and they wouldn’t formally diagnose until 40, which for a degenerative debilitating illness is beyond crazy but since the 5 years of my being diagnosed, the Biologic has come onto the scene which has been a game-changer for some (incl me)

I’m so sorry you’re struggling with reactions to the medications. The illness on its own is bad enough. I do genuinely believe that if you get the right rheumatologist on board and speak to NASS about alternatives, you’ll be able to find the right painkillers and help.

Have you looked into herbs at all? I use Golden Seal for the oral ulcers caused by the autoimmune part and that’s been amazing. At times I couldn’t drink water through a straw but now there’s no issue.

macaronip1e · 01/12/2019 07:32

Sorry, I might have missed it - is there a reason you’re particularly worried about side effects with anti TNFs - they are generally well tolerated. I take adalimumab (for another autoimmune condition) with no issues and life changing benefit in terms of symptoms.

And sorry you’re having such a tough time getting in front of the right doctor. X

macaronip1e · 01/12/2019 09:00

I realise I was half asleep when I was reading your posts...I’m assuming your concern comes from general issues with tolerating medication. I understand why that’s a worry. That said, AntiTNFs are very different medicines to steroids and NSAIDS, so perhaps your experience will be different - but, of course, you won’t know until you try. In my experience, though, antiTNFs are very effective and - other than having to psyche myself up to self inject every fortnight - come with noticable side effects.

nononever · 01/12/2019 09:31

I'm on anti-TNF therapy and it works for me, no side effects and life changing. As for the Naproxen, ask for a different anti-inflammatory. I take nabumetone with no side effects.

So sorry to read what you have been put through, absolutely shocking treatment especially when it was private. I really hope you're seen by rheumatology sooner rather than later and you find a drug therapy you can tolerate Flowers.

I was in a similar situation with private medical cover. When I was diagnosed and being referred to rheumatology my GP advised me not to go private as my referral was to an NHS consultant who was an expert in the field and didn't take private patients, plus my premiums would be extortionate. I was really fortunate to be seen almost immediately due to my severely acute onset. Eternally grateful for that referral, I had and still have amazing care and compassion from all staff in the NHS rheumatology unit.

CrunchyCarrot · 01/12/2019 09:58

Bursitis can be helped enormously by ultrasound and microwave treatment (very simply done at a physio's). I have had that and it really helped. :)

CrunchyCarrot · 01/12/2019 09:59

I also want to point out that as you've got raised thyroid antibodies this does indicate you may be developing Hashimoto's. Do you have your thyroid lab values? Doctors may state your results are 'normal' but they may not be, the lab ranges they use are far too wide.

Sunmoonearth · 01/12/2019 12:40

Wow! Thanks so much everyone. So much useful info here. Awesome.

My fear of drugs is about being able to tolerate them. I have a very poor track record. From painkillers to antibiotics to almost anything else, I've had trouble with most things. It took me 25 years to find a migraine drug combination I could tolerate and that actually worked during an attack. So very worried about trying something heavy duty and long lasting in the system. I couldn't bear to be Ill for months after trying something and then having to repeat the process with another version after recovering.

Very interested in the other NSAID, Noonever! My GP told me there was no other versions (he has trouble with the truth most of the time, particularly when saving him money is involved!).

I shall be down there tomorrow with a sheet I have printed off the internet. It's worth a go.

The Consultant Rheumatologist I saw Friday evening, is the top local Consultant and likely whom I'll be seeing on my NHS referral. He looked at all other investigations I'd had and all the other doctors I'd seen, gave me the formal diagnosis and talked me though treatment options briefly and told me where to look for more info on the AntiTNF treatment (and that information really worried me when I looked it up). So he was very good. But it's taken forever to get to him.

My GP is not only useless but actively puts barriers in place for everything. For 4 years he has refused to even refer me privately for any of this.
I only got something done because AXA had a private Online (FaceTime) Gp who referred me. Otherwise I wouldn't even have access to basic prescription NSAIDs.
In the 4.5 years at current surgery, nothing has been offered. Despite attending regularly and describing pain and symptoms plus they had the information from previous surgeries with the same thing dating back more than 10 years.

The Consultant Rheumatologist I saw privately on Friday was shocked that the GP hadn't referred me to the NHS pain clinic, the specialist NHS physio service despite two reports from Consultant MRI radiaographers stating sacroilitis under "ASAS protocol"

My GP has delayed treatment for years and is deliberately continuing to do so.

Am going to make that point to him tomorrow. Arse.

Glad to hear there is some hope.
Those of you on Anti TNF, did you have to try several? Or was it good first one you tried
And side effects? Anyone had anything in particular? Thanks

OP posts:

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nononever · 01/12/2019 15:02

Very interested in the other NSAID, Noonever! My GP told me there was no other versions (he has trouble with the truth most of the time, particularly when saving him money is involved!).

Bloody hell, I cannot believe he told you there were no alternatives, truly shocking!!! I was initially on naproxen but my GP took me off it as she said it was too harsh on the stomach. Been on Nabumetone ever since, trade name is Reliflex. I'm on Enbrel anti-TNF and self inject twice a week. They asked me to change to an auto-injector once a week but I said no as I like to be in control when injecting. It's a slight inconvenience when we are travelling carrying so many injections but I use a FRIO wallet which is really good.

Would it be possible for you to see a different GP in your surgery or change surgery altogether, your doctor sounds a right arse.

nononever · 01/12/2019 15:04

PS I started and am still on Enbrel (etanercept is generic name) and have never suffered side effects.

macaronip1e · 01/12/2019 15:18

I am on adalimumab (specifically Hyrimoz, a biosimilar - ie, generic version of antibody based medication - of Humira). It’s the first I tried and have had no issues. No side effects other than minor pain when injecting (literally 10 seconds once a fortnight). That said, I appreciate that as I am immunocompromised, I could suffer worse with infections (colds etc) - but I’ve been on it since August and not had any issues so far. I take it for psoriatic arthritis and has improvement in symptoms within a week....though I think that’s not necessarily the norm; I was told by a nurse that they would consider me to be at full effect at 6 months.

Not all anti TNFs have licenses in all autoimmune conditions, so you would need to look up the options for non-radiological AxSpA - adalimumab is almost certainly licenced for it (it carries the most indications of the anti TNFs).

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