Could my diagnosis of RA be wrong?

schaffles

Hi guys,

So, I am 20 years old and was diagnosed with RA at 16 - apparently Seropositive. I can't really remember the diagnosis happening - I remember having ultrasounds and blood tests and x-rays, and being told I have RA.

I do have flare-ups sometimes, however I am aware that "joint pain" is listed as a side-effect of Sulfasalazine, which I am prescribed. It all started in my hands - I was doing my A Levels, and couldn't write properly because my hands were so stiff and painful.

For some reason, I feel like my diagnosis of RA could not be the case.. I suppose I'm worried about what that means for the future. I rarely flare up, and when I do I can push through the pain and keep going.

Has anyone had any experiences like this? Is there any possibility that even though my blood test came back positive that I don't actually have it??

[Deleted User]

Hi schaffles,

Welcome to the forum. This I great place to chat about anything to do with arthritis.

I’m thinking you are saying you were diagnosed with rheumatoid arthritis around 4 years ago, you were put on Sulfasalazine and you are still taking it but now you are wondering if you really do have rheumatoid arthritis because you’ve not had a serious flare in a long while.

If that’s right have you been seeing a rheumatologist? If you have a rheumatology team there might be a rheumatology nurse you could ring with this question. It is possible that you could go into remission, have no symptoms or it might be possible the Sulfasalazine is doing it’s jobs and keeping the disease under control. If you don’t have a rheumatologist team then an appointment with your gp seems the way to go. Have you talked about this to your family? I’m sure they would remember the event and be able to support you. It’s a simple matter to have a blood test, so it should be possible to sort out your problem without too much worry.

Do keep posting to let us know how you get on

Take care
Yvonne x

stickywicket

Hi schaffles

There is a possibility but not a likelihood. You had all the tests and were even sero positive (It's harder to diagnose in those who are sero negative.) Rheumatoogists can usually spot early changes in X-rays too.

I can see why you'd prefer not to have it but, to me, what you describe seems pretty normal for 'early years'. I was diagnosed in 1961 when I was 15. In those days there were none of our modern DMARDS such as sulfasalazine and methotrexate so it was aspirins and steroids for me then anti-inflammatories, none of which did much for me but, in those early years, I did have periods in which disease activity seemed very low. It was only later that it became ongoing and relentless.

i would never advise anyone to give up the meds though I think it would be reasonable to ask your rheumatologist about it at your next appointment but don't do anything without checking first. It's not pleasant having to take these meds all the time but they do a good job and that is a very good thing.

What do your regular blood tests show re disease activity?

schaffles

moderator wrote:

Hi schaffles,

Welcome to the forum. This I great place to chat about anything to do with arthritis.

I’m thinking you are saying you were diagnosed with rheumatoid arthritis around 4 years ago, you were put on Sulfasalazine and you are still taking it but now you are wondering if you really do have rheumatoid arthritis because you’ve not had a serious flare in a long while.

If that’s right have you been seeing a rheumatologist? If you have a rheumatology team there might be a rheumatology nurse you could ring with this question. It is possible that you could go into remission, have no symptoms or it might be possible the Sulfasalazine is doing it’s jobs and keeping the disease under control. If you don’t have a rheumatologist team then an appointment with your gp seems the way to go. Have you talked about this to your family? I’m sure they would remember the event and be able to support you. It’s a simple matter to have a blood test, so it should be possible to sort out your problem without too much worry.

Do keep posting to let us know how you get on

Take care
Yvonne x

Hi Yvonne,

Thanks for the response. I do see a rheumatologist, yes, and I think i'll bring it up next time I see her. She seems pretty sure the Sulfasalazine is doing as it should; I suppose I just didn't realise what the drugs are actually doing, since I've never had a truly debilitating flare up (it makes me much slower/in pain and I have collapsed before, but never been so bad I can't get out of bed etc). So kind of don't have a measure in which to compare the effectiveness of the drug to, if that makes sense?

But anyway, I should trust the docs

Thanks

schaffles

stickywicket wrote:

Hi schaffles

There is a possibility but not a likelihood. You had all the tests and were even sero positive (It's harder to diagnose in those who are sero negative.) Rheumatoogists can usually spot early changes in X-rays too.

I can see why you'd prefer not to have it but, to me, what you describe seems pretty normal for 'early years'. I was diagnosed in 1961 when I was 15. In those days there were none of our modern DMARDS such as sulfasalazine and methotrexate so it was aspirins and steroids for me then anti-inflammatories, none of which did much for me but, in those early years, I did have periods in which disease activity seemed very low. It was only later that it became ongoing and relentless.

i would never advise anyone to give up the meds though I think it would be reasonable to ask your rheumatologist about it at your next appointment but don't do anything without checking first. It's not pleasant having to take these meds all the time but they do a good job and that is a very good thing.

What do your regular blood tests show re disease activity?

Hi,

I suppose that's the case - I wish the docs told you these things though. For example, I only found out it was seropositive because my GP showed me a consultation letter she had received from my rheumatologist.

If you don't mind me asking, how long did it take until it became really debilitating? Recently I've been finding the pain has become worse/been a lot harder to be as mobile as I used to be (even 6 months ago) and I'm worried about what this means for the future. I'm hopefully going into a career in Clinical Psychology but know this could be difficult if my body won't allow it in the future!!

I don't get sent my blood test results, but am having one on Monday so will ask for them... as far as I know they're stable and suggest remission?

stickywicket

I'll gladly tell you my timescale as long as you don't put too much by it The thing is, I've learned from my time on here that we're all different and these things vary enormously.

For me, it was clearly 'exam fever'. I was diagnosed at 15 (o-levels) but they think it probably started when I had a long bout of supposed rheumatic fever when I was 11 (11+ exams). A-levels weren't too bad but I flared during my first year uni exams and badly during finals. In between, in these times, I wasn't bad at all and that was without modern DMARDS.

It was the children that really did for me During my first pregnancy it just all disappeared as it can with some women. It came back with a vengeance after he was born and it took a long time tó get me stable on gold injections. No. 2 son didn't bother to keep me well during the pregnancy It was a nightmare, all nine months. Nowadays one can take prednisolone during pregnancy but I had to do mine on soluble aspirin. Again, I flared badly after he was born and for some time after that. There was no no. 3

I can't remember what I took next - maybe penicillamine but I was never really good after that. I had new knee joints in 1981 but everything else was a mess too - fingers, wrists, ankles, shoulders, you name it. Methotrexate was the drug that really helped once I got it but, by then, a lot of damage was done.

However, as I said, we're all different and the disease progresses at a different rate in all of us.

Re rheumatologist - you can ask to be copied in to any letter he send to your GP. Just ask at your next appointment.

And, if you've any more questions, just ask away

schaffles

stickywicket wrote:

I'll gladly tell you my timescale as long as you don't put too much by it The thing is, I've learned from my time on here that we're all different and these things vary enormously.

For me, it was clearly 'exam fever'. I was diagnosed at 15 (o-levels) but they think it probably started when I had a long bout of supposed rheumatic fever when I was 11 (11+ exams). A-levels weren't too bad but I flared during my first year uni exams and badly during finals. In between, in these times, I wasn't bad at all and that was without modern DMARDS.

It was the children that really did for me During my first pregnancy it just all disappeared as it can with some women. It came back with a vengeance after he was born and it took a long time tó get me stable on gold injections. No. 2 son didn't bother to keep me well during the pregnancy It was a nightmare, all nine months. Nowadays one can take prednisolone during pregnancy but I had to do mine on soluble aspirin. Again, I flared badly after he was born and for some time after that. There was no no. 3

I can't remember what I took next - maybe penicillamine but I was never really good after that. I had new knee joints in 1981 but everything else was a mess too - fingers, wrists, ankles, shoulders, you name it. Methotrexate was the drug that really helped once I got it but, by then, a lot of damage was done.

However, as I said, we're all different and the disease progresses at a different rate in all of us.

Re rheumatologist - you can ask to be copied in to any letter he send to your GP. Just ask at your next appointment.

And, if you've any more questions, just ask away

Thanks so much for sharing that with me! I appreciate obviously we're all different and all have different medical treatment etc; one thing I can take from your story is that I am incredibly lucky to have been prescribed DMARDs since diagnosis...

Interesting r.e. pregnancy - this is something I've been thinking about a lot lately. A friend of mine is on baby no. 2, and doesn't suffer from arthritis, but I know the stress that being pregnant can have on women's joints, even without arthritis. It's interesting that it disappeared with baby 1 for you - I'm hoping this will be the case for me!

When you had your new joints, what was the lead up to this like (both in symptomatology and medical examination)? I wish I were more in the loop medically; I'll definitely ask her next time to send me consultation letters etc.

dreamdaisy

Hello, I thought I would chip in with my story as it is similar but different to Sticky's (I know her quite well, we're old friends on here). I was born in 1959 with auto-immune issues (severe eczema) and developed asthma aged seven.
These were in the days before steroid creams and inhalers had been invented so childhood was utter misery until these things came to pass when I was around twelve.

My mother's side of the family gifted the eczema and asthma, then in my later years Pa's contribution came to the fore when I began the auto-immune arthritis, latter deemed to be psoriatic (gotta love having grotty skin!) Both parents were unaffected by any of it and had no idea what they were unleashing in me. They got what they wanted, I have to live with the consequences of that. I decided aged sixteen not to have children, I did not want to run the risk of passing this dross on to another generation, condemning another person to live a life governed by the regular intake of strong medications. I do not regret that decision for one moment.

These things run in families and, thanks to the studies in genetics, we are gaining a clearer understanding of why but they can also start out-of-the-blue. Life has one major side-effect, namely disease. No-one is free from the risk of illness, no one is guaranteed a healthy life. I am fortunate in that I have never been troubled with good health so I have no idea what I am missing: for those that had it then start this malarkey it must be so very hard. Dd

stickywicket

Re the arthritis 'disappearing' during pregnancy number one - I recall a lighthearted conversation with Mr SW when we were calculating how many children we'd have if I aimed to stay pregnant for the rest of my childbearing years And then baby number 1 arrived and suddenly that didn't seem a good idea at all

I don't recall the run-up to my new knees very well. It was 37 years ago. I remember a day when I honestly don't know how I managed the long corridor to my rheumatology appointment. I remember x-rays and immediately being offered new knees. I remember I said I thought you only got new knees for OA and being told "Oh you've got that too."

I was told it'd be 'sooner rather than later'. I went home and was getting my lunch when the phone rang. Could I come in now? So I did. I had the first one at the beginning of April and the second some time in June. The first one lasted about 27 years (I've looked after them carefully with exercises). It had slid out of place and, again, I didn't have to wait too long but 2-3 months, even so, as a revision takes up twice the surgery time. The other one is well and truly knackered but the hip replacement above it needs seeing to first. I'm waiting for that now.

I think it's all different now though. Back then there were more consultants and fewer patients. Hence my '32-26' week's wait to see the surgeon re my hip replacement even though I'm currently on more painkillers than I've ever had in my life before.

schaffles

Thanks for your responses! It’s really nice to hear others’ stories.

I was started on methotrexate on New Year’s Eve (so no drinking for me!!), so have been on it for a few weeks now. How long does it take to see the effects? So far I’ve just lost my appetite, been extremely fatigued and have been having joint pain all over the place - I can’t tell if the pain is worse than it was, though. Plus this coincided with my New Years resolution of trying to do more exercise, so I don’t know if it could be that causing fatigue/more joint pain?

On another note, I found out one of my lecturers has RA - we’re going for a coffee in a couple of weeks, so I’m really excited to have someone to talk to about it who’s been through it too! I signposted her to these forums

stickywicket

Unfortunately all DMARDS (of which methotrexate is one) can take up to 12 weeks tó work. . The fatigue and joint pain are far more likely to be due to the disease which is not yet in check. The appetite? Could be anything. Exercise is good but has to be tailored to the situation. If you're flaring just aim to take your joints gently through their full range of movement. The strengthening ones can come later when things have improved a bit.

Katy

Sounds like it to me, as I have it, I couldn’t write when it was at its worst, however, I make a herbal paste u eat, (goes in curry’s) it doesn’t take my pain away BUT it does give u the movement back in your joints, tastes manky, but really works [emoji4][emoji106]


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