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Am I in the right place?

I’m under rheumatology for over two years and searching for a diagnosis. Finally I’ve met a great consultant and have some answers!

He strongly thinks I have Psoriatic Arthritis specifically Spondylitis. He’s ordering a genetic test for the gene and MRI of spine and pelvis. I can’t find any specific groups on here for either. Does anyone else have this? Thanks

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I have PsA and my,problems started in my early 20’s with back and neck pain. You are definitely in the right place.

Clemmie

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Thanks for replying Clemmie that’s good to know! Don’t fancy going through this on my own. Feeling pretty devastated right now but finally got a diagnosis 🙌🏽

Is that what it’s know as PsA?

I’m not sure why I’ve suddenly got severe pain with bursitis and Tendonitis in both hips shoulders & elbows and my fatigue is thru the roof!

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me too

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Hello and welcome.

Yes I have psoriatic arthritis. Mine started with bilateral Achilles tendonitis and torn rotator cuff.

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My rheumy did an ultrasound today of my Achilles and said it was inflamed and had calcification. But that feels like the least of my problems atm. My neck and back below my waist is really painful.

He said he didn’t want to treat me until he had the mri results as the gene isn’t enough to diagnose as many have it without symptoms.

It’s been a long journey so I am pleased that finally I’ll get treated just strange how it’s suddenly so aggressive x

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Ah yes backs! I have back and neck issues. Often walks hand in hand with PsA (psoriatic arthritis).Very painful. Sounds like things are moving forward for you in terms of finding out the problems.

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If you put psoriatic arthritis into the search box you should get some of the more popular posts on this. You are definitely in the right place!

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I’ll have a nosy thanks!

I’m confused between psoriatic arthritis and spondylitis. Not sure why but I feel more concerned with spondylitis and possible problems with my spine.

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There are a group of seronegative spondyloarthropies. They include psoriatic arthritis, ankylosing spondylitis, and reactive arthritis.

If you have some psoriasis it's likely that you have psoriatic arthritis. This unfortunately can include back problems. He may also be looking to see if you have ankylosing spondylitis, which is different to psoriatic arthritis.

Spondylitis basically means inflammation of the spine.

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So they are two different AI diseases then? I have no psoriasis.

Is one better than the other? If so I’ll have the better one? 😂

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No they are all equally cack. Weirdly, and just to confuse you further, you don't necessarily have to have psoriasis to be diagnosed with PsA. Your doc will be looking at various things. Including nail issues, back, tendonitis etc etc.

I started off with what I thought was just an itchy dry scalp. It was actually psoriasis. It then spread to ears, chest. Worst of all...my nails. 3 toenails fell off. Some folks just have one tiny patch, others nothing.

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Yes he said I didn’t have to have psoriasis but I’ve close family who have it quite badly.

I’ve Tendonitis, bursitis, neck jaw and back & pelvis pain, chronic fatigue, constant headaches but mri clear on my head. Skin & nails are fine.

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Ah ok. Be good to know won't it. Are you in a lot of pain? One all test have come back docs might offer you a steroid shot to give some relief until meds kick in.

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Yes in agony. I have a high pain threshold too but it’s so constant I just feel really sick and burning up. What I find hard is ppl being so dismiss. My dad said today I couldn’t have a high pain threshold as he knows ppl who have and they just brush it off 😳

Is it just me or is this really painful!? Luckily they got me in within a week at hospital. He said he can’t treat me until tests are back as he doesn’t want anything affecting the mri. I’ve had an injection in my hip mid October but it’s only eased it. Pain is in all major joints and back etc

He did say about amitryptaline to help me sleep. I struggle with pain relief as can’t tolerate many only tramadol and it keeps me awake I can’t sleep on it. So think they’ll looking at slow release tramadol which should help.

I have wheat bag & hot water bottle but feel like my Xmas will be spent in bed.

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No it's not just you, it's very painful. I was in tears daily from the pain and stiffness . I couldn't even roll over in bed or get up from a chair.

Things will get better. I'm no where near as bad as I was.

As for folks not understanding...I'm afraid you will get a lot of that . People don't really understand the pain unless they've experienced it themselves. You could get some leaflets and educate them.

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I found this link. It’s not the most positive but maybe ppl might understand why I’d feel worried and upset at this stage not just with the constant pain but managing & living with it and the side effects of any treatment.

Tbh if I can just exercise and know what I have to do to help myself then I’ll do all I can as I have done with my hashimotos. I just think it’s so bizarre how’s its hitting me so hard especially over the last few months when I’ve probably had it years. But I’ve never felt like this before!

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Try not to jump the gun. Your doc said most likely PsA. It's hard not to panic, particularly when you don't know the facts. Doctors aren't that great in explaining either...usually too busy.

The back pain you are experiencing could be due to either disorders, or may not be linked at all. Osteoarthritis is a very common disorder of spine too.

Try not to panic, you will soon find out for sure, and then things can be done to help.

In the mean time look after yourself. Eat well, drink plenty of fluids and take gentle exercise to keep mobile. 🤗

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Consultant just said either but would depend on tests. Tbh it’s closest I’ve got to a diagnosis and I’m not sure treatment would be much different for either. But as long as I get the treatment that’s all I want. I am relieved as it can feel like it’s all in your head and no one believes you. Even my daughter this week said mum do you think it could be the placebo affect?? That was a knock as even my daughter questions how I’ll I feel.

Now I can focus on getting better and looking after myself

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Indeed. Yup treatment would be the same.

I know, it is frustrating when folks don't believe you. I had that with my GP!

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My consultant mentioned injections in my buttocks - sounds lovely! Do they work? Also a medication you take once a week. I’m starting physio with someone experienced in rheumatological disorders.

I’ve been advised to avoid steroid injections as they can cause issues. Also I’m not keen on having steroids but do they help? What treatments do they offer? Ie pain relief, immune suppressants?

I’d come across these but dismissed them as didn’t even think my symptoms matched until now

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Steroid in bum works fantastically and only cause issues after long term use. If u r in loads of pain I would have it. U will feel like a new person.

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First think I’ll have I’ll just wear my big pants to save my embarrassment 😂

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People dismiss your pain because to them you still look normal on the outside; so to them nothing has changed and you are just being a sook (which we all know is absolute BS).

There is a mini war going on inside you that is causing you absolute agony, but these non-empathetic fools can't see that, so they mock you for it...So tell 'em to either understand your situation and show a bit of kindness, or pi$$ off! ☺

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Haha love your thinking!

Yes and I’m one where I still will put makeup on if I was in a hospital bed. If I look better I hope it makes me feel better. At my worst I can’t leave the house.

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I had “no psoriasis” either until I saw a dermatologist and she found subtle nail changes, a 1 cm dry patch on one elbow, dry/flaky skin and a strange little sore/raw area in my deepest darkest nether region. And the diagnosis was thereby nailed (after my GP’s dismissive treatment for 15 years).

Severity is not a consideration. My psoriasis was mild, but my PsA was severe, and had already inflicted a lot of damage and pain before it was diagnosed.

And about 10% of PsA patients have arthritis that emerges before the skin manifestation.

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Due to suffering the last 3 years with hashimotos I notice any changes on my body and haven’t had any of those surface symptoms that I’m aware of irvthat rheumatology could find. Fingers crossed I don’t get any either.

I believe now that I’ve been suffering for quite some time maybe 15 years. I’m now 45 so that worries me as to what damage could have been caused. My hashimotos and myositis has distracted the rheumatologist I’ve seen over the past 2+ years. But I’ll find out soon enough from the mri I’m sure.

I’ve learnt that GP’s know a little about everything and obviously don’t specialise. Luckily if I request a referral or even medication they’re pretty good as long as I can justify my request.

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Hello. I have psoriatic arthritis. It took 3 years for me to get diagnosed from time of referral to rheumatology so I know it's frustrating. I'm glad you've found a good doctor now. x

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Hello! I consider steroids my Frenemy. It’s not good for you long term but when I’m on it I feel fantastic. The issue is the relief is only as long as it’s in your system. But worth it to me especially when I flare up . Good luck with everything 💕

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Thank you! I trust my new rheumy and gp’s so will work with them as to what they think is best. My GP gave me slow release tramadol today to help me sleep and with the pain so hope they’ll help.

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Sorry to hear you’re in so much pain - I have been diagnosed with PsA, but while I am fortunate in that it has only ever affected my knees and ankles, when it flares, the pain is absolutely excruciating! Painkillers just don’t seem to touch it, but the injection in the buttocks does help a bit, and is painless in itself. I do get psoriasis, just on the palms of my hands and on my feet. I have been on methotrexate for about 18 months now and it definitely seems to be working as I have not had a flare in a very long time. Hope you get a MRI quickly and can start some form of treatment to relieve your pain.

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Thanks loving the name Soreknees2016!

I thought that’s going to be embarrassing getting my bum injected 🙈😂

My back is particularly painful I’m just worrying as to how much damage could already have been caused. I can’t stand for long but can still bend over so that just be a good sign even though it’s painful?

Is there side affects to your medication?

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Hi! The jab in the bum is nothing - the injection site is pretty high up, so not even on the cheek, and it’s done just by bending over and lowering your undies, so no stripping off and not too undignified! And tbh, I don’t care when I’m in pain - there are much more embarrassing things us ladies have to endure!

You will no doubt learn from this group that some people do suffer bad side effects from Methotrexate and indeed other RD meds (of which there are quite a few), but I personally have been absolutely fine, although it does seem to play havoc with my liver, but that is closely monitored by my GP and rheumy team.

Once you get a diagnosis, you may find, as many people have, that it’s trial and error to get the best medication for you, and some meds take a while to take effect, so please be prepared to not get an instant fix. But it sounds like your rheumy is really on the ball, and you will find lots of support and information in this group. Good luck!

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Oh it’s like the depo injection then! Tbh it’s more because I’m fed up of stripping off 😂

When you start meds like others under rheumatology are you monitored every two weeks?

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Yes - blood test every two weeks, and should eventually reduce to three monthly. I’ve never got that far due to the concerns about my liver results, plus rheumy says one thing and GP says another! Currently going every 4 weeks, but I’m hoping to get that reduced at my next rheumy nurse appt in January,

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Thanks I had a short dose of immune suppressants so saw the specialist nurse every 4 weeks bloods every 2.

Do you inject yourself as well?

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No, I’m on tablets, 15mg once a week, but wondering if switching to injections would help the liver situation, by not going through the digestive system...another one for the rheumy nurse!

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I think that’s a good idea! I’m all for avoiding medication that could cause issues with my stomach as 80% of your immune system is around your stomach which can cause AI diseases as it unsettled the balance of our immune systems.

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Hey, I have ankylosing spondylitis. My rheumy put me on naproxen straight away saying if it helped it would be another plus on my diagnosis. I didn't stop taking it prior to my MRI and the inflammation still showed up. I know others are told they must stop taking it before the scan.

The weekly meds your consultant spoke of are probably biologics. I use cimzia, I have to inject it every 2 weeks.

My main issue was fatigue. I didn't really complain about my back but when my GP questioned me I told him that I was sore in my hip each morning and my lower back would hurt if I stood for more than about 5 mins but that the pain eased off on moving. I didn't know at the time I was describing classic AS symptoms as I'd never heard of it. He tested for hla b27 gene and I was positive. You can be negative and still have AS , it"s just one part of the puzzle that is your diagnosis.

You can freak a bit when your consultant tells you that if you don't take the meds you will fuse in about 5 years, but then really, you just get on with it. I don't have a problem with injections so administering the cimzia isn't a big deal. It's more of an issue trying to get the kids to understand that mum can't always do stuff and go places! The drugs are so advanced now that many people never fuse. If you are diagnosed with AS I'd recommend you join NASS and there is also a Facebook page for UK AS sufferers and a US one as well. There are some very knowledgeable people on the UK FB site, especially when it come to what steps your consultant should be taking while diagnosing you.

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Hello jnmmum 👋🏽

Unfortunately I’ve struggled with naproxen it really makes my stomach burn. I’ve a very sensitive stomach abs all these drugs aren’t helping.

What I’m concerned about is the damage already done. My back is agony especially my lower back near my pelvis where it feels like I’m having horrendous period pains too due to the constant pain. Also my bursitis in my shoulder and pain between my shoulder blades and neck can’t be a good sign. Obviously I won’t know until I have my mri which should be in the next two weeks.

What happens if there’s already some bones that have fused? What happens? Can they be repaired to ease pain & mobility?

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I don't think they can do much if fused. The biologics aim to stop the fusion occurring. Have you not had an x-ray? Fusion will be seen in the x-ray, MRI more to show the inflammation when x-ray has come back normal. Did you take omeprazole or similar with naproxen? I take mine together but many say you should take the stomach protector before bed and the naproxen breakfast and dinner. Else have you tried arcoxia?

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I had an X-ray of my hip in October to check the bones and saw a hip surgeon a week ago and my hip is all ok. Then xrays on my shoulder hands and feet yesterday.

My rheumy said the MRI’s done before were based on my muscles and previous myositis not bones tendons etc so that’s what he’s requested now. Shame as that could of saved me a year to 18 months of difficulties and decline in health.

He’s very knowledgeable and worked with an international specialist I saw for my myositis that I tracked down and got a referral on the NHS with. so when he confirmed that yesterday I knew he was good and knew what he was talking about.

I’ve had omeprazole and the coated ones I didn’t like either. And tbh it concerns me if I have such a strong reaction to a medication so I’ve learnt now not to put myself through it as I don’t want more issues.

Not heard of arcoxia?

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Arcoxia is another anti inflammatory, contains etoricoxib and works in a different way. Some find gentler on stomach as it's a Cox 2 inhibitor as opposed to naproxen which is a Cox inhibitor. Personally I found it upset my tum but others have told me if I'd persevered a few days that may well have cleared up. Pain wise it was far superior to naproxen for me, helping even my fingers which naproxen never touches. If your consultant is looking for AS there is very specific criteria: you must have evidence of inflammation or fusion in the sacroiliac joint, I think it usually has to be bilateral.

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Everything is bilateral that I suffer with and I hope the right mri scan this time will shed some light on what going on

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It's frustrating I know but AS is notoriously difficult to diagnose especially in women where they often present differently to men. I was misdiagnosed with ME for 25 years as my main symptoms were extreme fatigue and IBS. I had vague pains in my hands and knees, none of which would point to AS! I was convinced I had lupus as I had many symptoms and if course many if the auto immune diseases have overlapping symptoms. My issues started after I had glandular fever aged 18. I saw a rheumy for the first time when I was 43. Prior to my positive hla b27 test all my bloods had come back normal, I've never even had very raised inflammatory blood markers but the MRI showed I had masses of inflammation. At least you are under a good consultant and he sounds like he'll be very thorough in finding out what is wrong with you.

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Haha yes I thought lupus at the beginning but I went through and one by one eliminated each disease. I dismissed AS as I couldn’t relate anything to the spine and it’s only in October I git diagnosed and treated for bursitis and it’s just spend everywhere and I have Tendonitis which I’ve had a while just but realised what it was.

I also had glandular fever at 21 and was very sick. Ever since then I’ve not been right and had fatigue. Then 3 years ago I was very sick with hashimotos and yet AS has probably been the trigger all along and I’ve been suffering years.

My sister has psoriasis and hashimotos should she be tested?

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There is a theory that the Epstein Barr virus causes the hla b27 gene to start misbehaving. My sister has similar symptoms to me but is negative for the gene, no inflammation visible on MRI. Ironically she was referred to rheumatology on the basis of her symptoms and my diagnosis.

I never really recovered from glandular fever. I was very seriously ill with it, I was given steroids eventually as apparently the EB virus had completely overwhelmed my immune system - there was more of those cells than white blood cells do I was never going to fight it off without medical intervention. By the time our GP came to see me (after telling my mum she was getting hysterical) I had not drunk anything for almost 72 hours and was hallucinating. My tonsils were so swollen I couldn't get anything past them, not even water. My immune system was completely overwhelmed and I certainly feel the GF was the start of all my problems. I actually don't really remember being ill - my parents told me a lot of stuff afterwards that I have no memory of. And what I can remember they tell me never happened lol!!

I wonder if there are other genetic components: my sister has similar symptoms as I said, my aunt has lupus and my cousin died as a child from juvenile RA. Another aunt has fibromyalgia type symptoms. I've seen a number of people on AS forums speak of relatives that also have it, but I seem to be the only one in my family with it lucky girl that I am!

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MissFG-

Yes you are in the right place. I have Psoriatic Arthritis (PsA) & Psoriatic Spondylitis as well. It took me 15 years after my pain started to get a diagnosis (it started when I was 15). This site is great because people actually have what you do, have tried a lot of the medicines you will try, and the respond to posts right away!

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Can it take a while to find the right meds that work for you? Is it trial and error?

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MissFG-

YES! It is so exhausting and irritating. Per insurance regulations you have to try medications is a certain order (I’m guessing bc most of the meds we need are unbelievably expensive) so that takes a while, plus everybody responds differently to each medicine and with our conditions you usually need multiple medicines, therefore making it a slow process in determining which group of medicines works best for you. It gets frustrating at times, but it’s worth it. Also, you’ll need these medicines for quite some time and you may get immune to them and have to switch. One piece of advice my rheumatologist told me that changed the way I looked at my meds that I would like to pass on (specifically in regards to pain meds) is that when you have life long pain conditions such as we do, there will most likely never be a medicine that 100% takes away the pain, so even if you find a med that takes away (for instance) 20% of the pain, it’s still progress and worth using it to get any reduction in pain. It is difficult to accept, but at the same time remaining realistic and optimistic is a necessity when finding the medicines that work best for you. As we both are dealing with Psoriatic Arthritis and Psoriatic Spondylitis, feel free to contact me anytime with questions. I’m not sure how long you’ve been dealing with these conditions and symptoms, but mine started around the age of 15 (I’m now 31 (almost 32), so almost 15-16 years ago), and I’d be more than happy to offer what advice and/or experiences I have. Involving the people in your life and having an outlet with people who deal with the same conditions/symptoms you do makes a HUGE difference. These conditions can leave you feeling isolated and having open discussions about it can help minify that feeling.

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When you say insurance regulations are you talking about the NHS in the UK or are you abroad?

Thank you so much for your kind advice x

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MissFG-

Sorry, typically I annotate that I am in the US. I was unaware that this was primarily a UK site when I signed up, but it’s such an awesome community of people that quickly respond, there’s no way I’m leaving!

The way insurance typically works here (I’m not sure how it works elsewhere) is that there are steps/requirements/an order in which you must try medications. I’m guessing it’s partly to show that the basic, generic and cheaper medication options will NOT work for you. I’m using Remicade for my biologic (it has been amazing for me) and, while I do not pay this, the medication alone is around $10,000 (US) for my dosage, and slightly over once the infusion costs are added in.

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Hi MissFG,

I don't have PsA, I have RA, but just wanted to add that I've found that Amitriptyline is fantastic for helping you get a good night's sleep, which in itself is a big help when you're feeling so rubbish.

Also, the injection in your bum you mentioned is most likely a steroid one, which is great for calming things down when you're in the middle of a flare (which it sounds like you are). Flares can be triggered by all sorts of things, stress is a major factor, and result in an awful intensifying of pain and other symptoms.

Steroid injections in the buttock are different to steroid injections into joints - those are the ones to avoid if possible as they can weaken the bones, but the ones in the bum are great relievers of pain and calming of flares of any kind of "itis". They're also good if you can't tolerate oral steroids.

The weekly medication you mention is most likely Methotrexate. It's usually prescribed in tablet form, but if you find you don't tolerate it well (upset tummy etc) if can be given in injection form.

You are definitely in the right place, the people on this forum are absolutely wonderful and supportive, as well as being a mine of information and experience. Sounds like you've got a great consultant and you're on the right path for getting appropriate treatment - it's quite possible you might not be in bed this Christmas if you can get the steroid jab in the bum pronto. Good luck with it all. X

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My GP said as I’m already on gabapentin not to have amitriptyline as they do the same thing. But the slow release tramadol should help me sleep if I take it at night as it lasts for 12 hours.

Rheumy wouldn’t inject my bum until I go back in the new year. He doesn’t want anything affecting my mri. But I’m feeling positive today I think it’s the relief of finally finding out what I’ve been battling.

Can you request the injections rather than pills? My stomach is so bad I struggle tolerating anything and I’m sure absorption must be better with injections?

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No harm in asking - the tablets are cheaper, but if you stress that you have stomach problems they might be persuaded...absorption is definitely better as you by-pass digestive system.

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I’ve seen crohns and other stomach problems are linked with psa abd spondylitis. At my next appointment I’ll discuss this with him although I’ve already had crohns ruled out.

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I think this group can help as I have Psa and get a lot of info from this group as the 2 diseases are very similar.

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Hi MISSFG, I'm in the same boat as you. Been told I have Psa, psoriatic spondyloarthritis and have just had mri on my whole spine & sacroilac joints to rule Ankolosing spondylitis last Sunday. So just waiting for the results. There are some great people on here. You're in the right place. All the best. Craig

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Looks like we’re in this together then Craig!

When’s your next rheumy appt to get your results?

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Yes indeed. Should get the results in a week or two but my next appointment is 4 months away. I have started Sulphasalazine though and no side effects yet but it has only been a week and a half. I'll let you know when I find out the results.

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That’s keep in touch be interesting to see how you get on.

How long ago were you diagnosed and how long did it take? Are you coping ok? Any other AI diseases?

I’ve not been able to work for the past two years but was already dealing with thyroiditis. That calms down and this happens typical lol

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Yes definitely. Was only diagnosed a couple of weeks ago but first went to Gp after coming back off holiday with flu like aches all over my body but no flu. Backwards and forwards to GPS, eventually got referred, had all the usual tests. Swollen hands, fingers, ankles, toes, pains in my heels and almost constant fatigue. Negative for RA, highish inflammatory markers, low white cell counts. Negative for HLA B27 but x rays shows suspicious lucent areas in sacroiliac joints and narrowing of disc in the lower back. Its taken roughly 6 months which is really quick but I had bouts of guttate psoriasis from the age of 18-19, last one being in 1996. I had uveitis in around 2001 and various bad backs that I put down to football and other sports and work but looking back may all have been linked to now.

I'm coping OK, some days are worse than others. I was off work for around 6 weeks but am no working from home. My firm have been great so far.

It's a shame you had to give up work as I believe it gives you something else to concentrate on.

I hope you get sorted soon. It sounds as if you have a good rheumatologist now and they will give you the help you need. Keep in touch. Take care.

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I’ve not had the best 3 years. I git diagnosed with hashimotos as my TSH was 147 so was pretty sick.

Then my daughter got hit by an illegal driver and was seriously injured. Now this. So lots of stress which I think has triggered this big flare.

My mum and sister and aunt all had psoriasis but not me. But always had lower back problems but don’t most people so we just dismiss it.

I’m hoping the treatment is straight forward and first thing I want is those injections in my bum lol

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What a rough time you've had. I hope you're daughter is on the mend. Stress I think can definitely make flares worse.

I wasn't offered steroid injections as they thought it might interfere with results so had just been on ibuprofen and Zapain. I've had to stop the ibuprofen as it's causing issues with my liver, so just painkillers until the Sulphasalazine starts to work which can take up to 3 months to kick in.

I hope you get sorted soon and get some relief from the pain. X

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