Hello, I'm new here but have had symptoms for many years - NRAS

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Hello, I'm new here but have had symptoms for many years

StormySeas
StormySeas
8 Replies

Hello there

I've been looking at this site frequently since I discovered it. I'm amazed by the amount of knowledge here and am hoping I can pick up some tips.

I was diagnosed with CCP Pos RA in 2013, although I had joint symptoms for about 5 years before. They diagnosed Palindromic RA, but I think I have ordinary RA too now. I'm on 15mg oral Methotrexate pw and 2g Sulpha. (I've tried Leflunomide and Hydroxych.) I also have CD, Hypothyroidism, Antiphospholipid Syndrome, Psoriasis, and have had scleritis a few times.

I used to be extremely fit and active. Now I muddle along on a low base-line (for me), with periodic massive flares, in specific joints/tendons if I do anything slightly too much. When this happens Tramadol and Oramorph barely touch the pain. I can't manage my active job, even with steroids, which I have taken periodically over the last few years to enable me to do short contracts. I'll be starting Rituximab shortly.

What I'd like to ask you about is this; since about 1996, when I first had scleritis, and they found a +RF, I've had frequent periodic bouts of extreme tiredness and flu-like symptoms, when I was utterly debilitated and simply had to take to bed. The episodes lasted for 2-3 days and then disappeared, only to reappear a few weeks later. This continued for over 10 years. I had no joint symptoms at the time and frequent visits to the GP failed to find anything.

Could this have been RA do you think? Has anyone on here had these symptoms too without joint involvement? I'm really struggling with the diagnosis and trying to come to terms with understanding what's happening to me.

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Ruthytootie2

Hello and welcome aboard the arthritic boat 😉

I have Severe Osteoarthritis, diagnosed over a year ago, quite often i get over come with tiredness & feeling cold at the same time, but without the agonising pains.

Still trying to get my head round it, plus waiting for blood test appointment to find out if i have any other form of Arthritis.

Not sure if OA & RA symptons are similar in anyway, but maybe you'll get more responses from others who have same symptoms & be more knowledgeable than i 😄

Ruth

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StormySeas

Hello and thank you!

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Barrister

As you have psoriasis, it is possible that you have PsA. I don't have psoriasis but because it's in my family, I have a diagnosis of PsA. Clemmie

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StormySeas

Thanks Clemmie. I have so many other AI conditions it's hard to separate them. I wish you could see an umbrella specialist who could view them as a whole...

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KayEP

I have OA in my neck and various points on my back and left hip, this year I have suffered a lot from several flares of OA - the latest being this week when my neck became blocked, and I can fall asleep standing up! The only way they discovered the OA was with X-rays. I also have RA and apart from the swelling of joints, I would say they are similar in the way you feel completely worn out most of the time. If you are being started on Rituximab this will help a lot with the RA, although it also makes you really tired for 2-3 days after the infusion, but it does nothing for the OA pain. As far as I am aware there is no medication for OA, just pain killers - I take 'Zaldiar' which is a mix of tramadol and paracetamol (high dose Codeine stopped working), but can't take it if I know I'm going to be driving as it can make you very tired (but helps a lot with the pain). Hope you have a good Rheumatologist and are sorted out soon. xo

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StormySeas
StormySeas
in reply to KayEP

Thanks Kay. Rituximab is scheduled for Thurs, so let's hope so. Am so freaked by it that I hadn't actually thought about the possibility of it working!

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Twitchytoes

Hi there. I hope you have coped well with first Rituximab infusion since posting here. It's my next option if MMF doesn't work.

What I wanted to say was that, although chronic fatigue is common to all forms of autoimmunity - Sjögren's is the AI disease most known for the kind of chronic fatigue that ME sufferers experience ie not necessarily pain related but a thing in itself.

I actually collapsed a few weeks ago in the centre of Glasgow with fatigue - a first for me and rather humiliating! My rheumatologist tells me it is one of the main symptoms and is caused by systemic inflammation. She describes mine as "a significant diagnostic feature of Sjögren's" along with the obligatory Sicca.

I was initially diagnosed and treated for RA and secondary Sjögren's but last year was rediagnosed with primary Sjögren's. Mine presents very like MS now rather than RA. I do get intermittent severe pain in my hips and knuckles and am on a high dose of Mycophenolate to prevent or modify possible organ damage (brain, nerves and kidneys). But the palindromic type of pain and fatigue are only getting worse and my PV and CRP elevate to correspond with this fatigue - regardless of pain.

These links might be of some use - no remedies yet and I've tried just about everything I can think of!

academic.oup.com/rheumatolo...

info.sjogrens.org/conquerin...

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StormySeas

Thanks for your message and sorry I didn't reply earlier.

I'm interested in the fatigue side of things as this is the symptom with me that far preceded any joint involvement. I've been going to the GP for over 15 years with short, recurring periods of great debility when I simply have to go to bed for a couple of days. This was long before RA diagnosis, and still continues (although the contrast between bad days and good days is less now as I have so much less energy than I used to!)

The RA diagnosed Sicca symptoms (I have VERY dry eyes) but I'm wondering if there is something else going on. Even when I dragged myself from bed to see the rheumatologist and told her I felt unwell, she said that I should see my GP as general debility wasn't a symptom of RA.

Thanks for the links, they're very useful. I have so many other AI diseases that I'm beginning to think they should be treated as a whole. Do you know if there are specialists who do this?

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