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The start of of a journey with Rheumatoid Arthritis.

(28 Posts)
PavlovtheCat01 Sat 03-Jun-17 23:11:21

I say the start of a journey, but it has in fact been a journey I have been on for a long time, but now I am closer to a diagnosis.

I recently had a blood test and it was positive for rheumatoid factor and for anti-ccp antibodies. I am still getting my head around what they are and what they mean. I have had symptoms that fit with a diagnosis of RA and my (new) GP referred me to rheumatology before the results came back, because of ongoing symptoms and other health issues which might, or might not be linked with this.

Following the positive results, she has said that she cannot give me a definitive diagnosis, as she is not a specialist but was confident that rheumatology can help me feel better than I am.

I also have problems with my lumbar spine. Ongoing for many years now. started after an injury to my spine and I am 6 years, 2 operations, many injections late, with further prolapsed discs, arthritis in my facet joints and more. But notably, I have significant inflammation in my vertabrae in the area of damage, seen as modic changes on the MRIs, and getting worse. It has not been given a 'name' except at the beginning of my spine pain journey, as Degenerative Disc Disease.

Interestingly, I was hoping that rheumatology would be able to investigate Ankylosing Spondylitis because I have many symptom that fit this, so while I was surprised at the RA possible diagnosis I was not really surprised at something inflammatory being wrong. My old GP would always put my symptoms down to medication, or referred back pain. He took each complaint in isolation, even with a list of ailments where I felt like a hypochondriac he didn't seem too concerned and never really referred back to my notes despite knowing me for many years. I stopped going about individual aches and pains in the end so many things are not on my notes anyway now, but there are so many that fit with a diagnosis of RA.

I guess now, I am hoping for some hand holding, as I don't know if the symptoms, and blood tests mean an inevitable RA diagnosis or if it could be something else, or nothing? (i have wondered over the years of back pain and nerve pain due to my spine and increased other symptoms if I am actually just over sensitive to pain, spend too much time thinking about my health and creating things wrong that are not wrong and that it's all in my head!)

And what happens next? I know I won't come out of the first rheumy appointment with a magic cure, but if RA is diagnosed, will I come out of the first appointment with some plan? some hope for ending this rottenness that has, along with my back pain, taken my life?

And does anyone want to share their own journey here? At any stage, we can hold hands together and help each other learn to move forward though each stage of treatment.

I have many more thoughts and worries and questions, but this is already horrifically long!

I say that with the thought in the back of my mind that, even while sitting in bed hurting all over and sweating as I am so hot, that maybe it's something else. !

PavlovtheCat01 Sun 04-Jun-17 14:51:05

bumping for the daytime lot as I posted quite late las night. Nt

PavlovtheCat01 Sun 04-Jun-17 17:03:53

argh. been into town birthday present shopping. now i hurt all over! need a nap but sunday evenings are ready for the week busy!

PavlovtheCat01 Sun 04-Jun-17 18:06:43

Anyone around now? Hoping some of you have finished your sunday roasts and have crashed, so you can talk to me grin

PowerPantsRule Sun 04-Jun-17 20:26:58

I have RA, it's called sero negative RA as I did not test positive for RF. The RA was pretty stable UNTIL this year when both my wrists swelled like footballs and my shoulders did the same. It's pretty awful (sorry, I am feeling bleak) and the specialist is talking about me having one of the biologics. I am sorry you have the diagnosis. t has been pretty life changing for me - am housebound currently as I cannot drive.

PavlovtheCat01 Tue 06-Jun-17 18:08:14

thanks for posting power how long have you had RA? I am sorry to hear about it getting much worse sad Do you work? not right this second I guess as you are housebound.

I am concerned about my own employment. I don't think I will get protection under the Equalities Act yet as it's not formally diagnosed. However, even if I do, I have pretty much run out any good grace and time allowances for being sick with my back problem and they are already considering whether I can continue with my job before this (I haven't told them yet, or rather, emailed my boss with an update, but she is on leave til later this week).

I feel at a loss as to what I can do now to make me feel better. I have been told the rheumy appt will be at least 11 weeks away and that's too long for me to feel ok being so unwell.

I have been laying down a lot as my back and my neck has been really sore as well as every other part of my body and I have spent too long looking at the treatment routes and possibly side effects of the medicine. Really didn't want to know about some of them. I feel rotten enough without having side effects that might effect how I look even more! I might stop looking.

But, maybe I won't need any treatment... <wishful thinking?>

sewing9876 Tue 06-Jun-17 21:46:28

Hopefully you will be fine if you get on medication. I spent over 7 years on prednisnolone (I was advised it was the only option to see me through constant pregnancy and breastfeeding). It worked well for me but as soon as I stopped feeding the last child I went on
to hydrochloroquine instead which also works well for me and I don't notice any side effects.

PavlovtheCat01 Wed 07-Jun-17 14:37:48

thank you sewing that is really positive to hear, that something low level has helped. I really hope it stays controlled for you.

sewing9876 Wed 07-Jun-17 15:38:57

Just re read your post. Not sure a GP should be doing the diagnosing. Just keep pushing for your RA appointment or go private for the first appointment to jump the queues. Then get referred back into the NHS for testing (as tests are very expensive). Correct diagnosis is essential from an expert.

PavlovtheCat01 Wed 07-Jun-17 16:09:01

oh so maybe I don't have it? That would be amazing. How much would first appointment cost? Can they diagnose without more tests? ie at the first appt with my initial bloods. GP did say she couldn't formally diagnose it, but symptoms and RH+ and anti CCP+ were strong indicators.

sewing9876 Wed 07-Jun-17 17:04:23

I have paid about £250 for an appointment with specialist Consultant. GP would need to refer you but you can choose who to be referred to so if you ask around and get a personal recommendation. Not sure if they would need more tests to diagnose but I didn't have any more than that but your case sounds more complex with the back problem and sounds like it justifies more investigation to establish what is linked. However going private often jumps queues as you can be referred into the NHS for the tests and often see the same consultant again but on the NHS for follow up appointments.

PowerPantsRule Mon 19-Jun-17 08:51:09

Hi Pavlov - I paid about same amount as sewing for an appointment. Worth every penny for me to not wait! Queue was a year long for a rheumy down here.

Pavlov - I have been diagnoses for two years but had it for four I think but because I do not test positive the diagnosis was fibromyalgia for ages. Then I started swelling up which made it easier to diagnose.

Today my big toe is bright red and swollen - quite randomly! Look like I have gout!

I do work - I am self employed and I work from home. So lucky! I can at least still type and access Internet. There is no way I could go to the office every day, as mornings by far the worst - pain in my neck ad shoulders is so intense (you mentioned that too, horrible isn't it). I get better through the day and also as the amount of pain meds in my body increases so evenings can be OK.

WaaWaaWaaa Thu 29-Jun-17 23:37:17

Hey! I either have RA or PSA. But quite mild until about 4 months after I had my babies. I've now started on methotrexate which is amazing. I feel sooooo much better!

I had health insurance with work when I first had it then the consultant referred me back to himself on the nhs so pay first a d cut the queue that way.

It's not necessarily a terrible thing. You can feel a lot better with the right medication

PavlovtheCat01 Fri 30-Jun-17 08:16:20

Hi guys. Sorry for no reply. Been feeling really awful and sleeping lots. Got a busy day today as DDs birthday tomorrow so making cakes. Hope I don't need a nap! Will post more later but thanks for replying and keep posting, I will read!!

PavlovtheCat01 Tue 04-Jul-17 18:04:08

i said on friday that i've been sleeping lots, but bloody hell! monday, woke at 1:30pm! today went back to bed at 10am, woke at 12:30pm! I feel groggy, spaced, generally shit.

And, to top it off my sciatic pain in my right leg is now through the roof. Don't know if it's coincidental or not. Also have pins/needles in my hands and fluttery heart.

I just don't know what the hell is going on, its all a bit much now. And I have so long to wait to see rheumy.

ARGH!!

longdays Wed 05-Jul-17 22:46:35

Hi, how long is it until your rheumatology appointment? My experience is that methotrexate is the first option and is usually started pretty quickly.

PavlovtheCat01 Thu 06-Jul-17 10:01:28

13wks+ so been on list for 3wks, waited 4wks for referral to get me onto the list. 3wks fit blood results (for doc to call me about them) after waiting 3wks for bloods to be taken following my gp appointment. 2wk wait for that GP appointment.

I have now got blisters come up on my face and couple on hands. No idea if linked or not but coincidental the my whole body seems pissed off!

Gp is calling me today so I can rant about it. I doubt I'll get much from it.

Kittychatcat Sun 09-Jul-17 18:41:16

Hi Pavlov, I remember you from the back pain threads a,few years ago!

I was diagnosed with ankylosing spondylitis some years ago and I also live with sciatica from prolapsed discs. I can honestly say that the worst part of my illness was getting diagnosed. I had back, foot, knee and wrist pain but AS affects everyone differently.

After having abnormal blood tests and feeling exhausted with fatigue I saw a rheumatologist privately to get diagnosed quickly then I went back into the NHS system once my symptoms started to improve. Is there any way you can see a rheumatologist privately to start with?

Ysolla Sat 15-Jul-17 08:47:25

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

Tiredflower Sat 15-Jul-17 08:56:32

Hi, I have had RA for about 10 years, mostly under control with Sulphasalazine and hydroxychloroquine. I was lucky that the GP started me on steroids and high dose anti-inflammatories after my blood test showed positive RF. The wait for the consultant wasn't too long luckily, 10 years ago. Can your GP start you on some meds to make you more comfortable?

tickyandtackyandjackythebacky Sat 15-Jul-17 08:57:03

Sorry you're going through this op RA is truly rubbish. I have PSA but sometimes they write RA on my notes. After having dcs I went on methotrexate and lasted around 6 months. It did work for the pain but the side effects for me were awful. I tried to go drug free for a while because I thought I was ok ( clearly the mtx was still in my system) until I went back to the consultant and she admitted me for a week and fast tracked humirA. I'm like a new person, pretty much pain free. It's incredible. Still have a bit of trouble with my knee but nowhere else and it ended up in pretty much all of my joints. I hope you get a diagnosis op and find some medication that works for you. flowers

PavlovtheCat01 Sat 15-Jul-17 13:00:17

Just a quick message. I'm camping (carravanning!) in Cornwall and strangely have internet suddenly! Thank you all so much for replying and sorry you've all had such horrible effects of RA.

I've asked gp to give me something and all he says he can do is increase my naproxen to 1000mg from 750mg, only IF I feel awful in the evening. Even then he was cautious. But he was not the doc who ordered bloods and referred me to rheumy. He only glanced at my notes (used to be my regular doc but surgeries merged. He never took my aches and pains too seriously other than it all being linked to my back. But is happy to give me strong painkillers so don't know why not steroids).

Anyway I remain feeling quite shit and to top it off have face nerve pain, sore throat and earache! Prob because I've been swimming, prob picked up a bug to boot!

Will post more when back tonight:tomorrow.

ihearttc Sun 23-Jul-17 13:30:09

I have Sero-Negative RA which was diagnosed 2 years ago. My finger joints started to swell up and felt like I had toothache in them. My left ankle which I broke 6 years ago also swelled up and I was in so much pain I could hardly walk. I also have Pernicious Anaemia which is another Auto-Immune disease. I initially had a steroid injection and then Naproxen which made me feel quite frankly awful. Rheumatologist wanted me on MTX but I wanted to try something else first so Im on Hydroxychloroquine which has worked really well for the most part.

I still have flare ups but it's most a general feeling of achyness rather than a specific pain.

PavlovtheCat01 Sat 09-Sep-17 19:11:55

I had my rheumy appointment this week.
anti-ccp antibody results were not on my bloods, either way. Rheumatoid factor and ANA were positive 'but quite mild' so rheumatologist doesn't think it's conclusively RA, or any other auto-immune issue. She was very curt, gave nothing away as she prodded and poked me and questioned me like she didn't believe me. She checked all my pressure points (would that be for fibro? or is that standard?). She said there was no obvious inflammation felt when she pressed on my joints.

Had another blood test, for anti ccp, to update rheumatoid factor results and inflammation levels, also for vitamin d as she decided I didn't get enough sun because I am so pale!

Had x-rays on hands and feet, and ultrasound requested, waiting for a date.

Outcome was, wait for the results of these. If there is inflammation, she can discuss a course of treatment/medication. If no inflammation then we will discuss that at next meeting.

She gave no indication of what the hell is wrong. Just left me hanging. I cried.

Now more waiting. More feeling rotten with no end in sight. <sigh>

PavlovtheCat01 Sat 09-Sep-17 19:15:26

But she did observe that my chest (upper ribs just under clavical), where I have had several bouts of costochrondritis is inflamed/swollen, and tender to touch and that seemed to bother her 'a little'.

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