Unexplained answers

Courtney1234

Hi I'm new to this but just looking for advice. I'm 19yrs old and For the past 2 years I've suffered with flare ups in my right knee. It becomes very swollen and now I always have a constant clicking /grinding sensation with I bend or move it, sometimes which can be very painful. I've had MRI scans but nothing has seemed to show up on them. I've recently been started in hydroxychloriquine and have been taken that for 3 weeks. I'm having a few side affects like headaches and nausea and not noticing improvement as of yet. I was supposed to have sulphazalaine but my rheumatology team noticed I have a constant and raised ana which is positive. What does this actually mean? Nobody has explained it to me. I also went to see a orthopaedic surgeon last month and they have decided to do one more course of physio (I've already have one and it made me very ill so I have no idea why they're giving it again) and if now better in 6mnths then they want to do knee arthscopy. I'm feeling like I've just been forgotten about and passed around as nobody has a clear diagnosis for my condition. I haven't had any support from anyone and I have no idea what is going to happen.
Sorry for the long post. Has anyone experienced similar?
Thanks
Courtney

[Deleted User]

Hi Courtney1234,

You poor love, it is hard anytime trying to get your head around the vagueness of the number of arthritis type conditions let alone someone young.

There are many on the forum who will help shed light on your blood results. It sounds like there is thought of an autoimmune arthritis is you are seeing a rheumatologist and have been given hydroxy and sulpha.

It can help if you keep a record of your symptoms, linking time of day and pain, inflammation etc and anything that makes it improve or worsen. Note down any questions you have and take that with you to your next appointment. Can you take someone to give some support, a family member or friend? Share the questions with them so they can help you come away feeling you have made progress.

Here's a leaflet on types of arthritis, symptoms, treatment etc.

https://arthritiscare.org.uk/assets/000/001/429/Understanding_FINAL_100516_web_original.pdf?1463670233


Chat on here, ask your questions, get out your frustrations. You aren't alone - whatever you say someone here will relate to and help. If you want to chat, ring 0808 800 4050

Take care
Yvonne x

Courtney1234

Hi Yvonne.

Thank you for the reply back. It's just hydroxychloriquine that I take as I'm not able to take sulphazalaine due to my high ANA count as the rheumatology nurse it would have made me very ill. I have an appointment to see my consultant again in November. Just fed up of having to wait so long to get answers.

stickywicket

Hi Courtney and welcome

It's no fun having any type of arthritis at any age but, when you're young, it's even worse. I was diagnosed at 15 and it interfered both with my education and my social life. I do hope you have some sympathetic friends and family around you. At least my diagnosis (R.A.) was a clear cut one which I think makes things easier. Living with uncertainty is always hard but sometimes inevitable. Especially with arthritis.

I'm sorry you feel as if you've 'been forgotten about and passed around as nobody has a clear diagnosis for my condition' but, given your referral to a rheumatologist, your two courses of physio and MRIs, it does sound as if they're trying very hard to determine what's wrong and help. Sometimes it's just not clear cut and people have to wait for some time until something changes to make diagnosis simpler.

My understanding of ANA tests is extremely limited and I've no medical training at all.. They are used as an aid (not as a definitive factor) to determine if a patient might have one of the 200 or so forms of autoimmune arthritis but they don't determine which one. Also, a raised ANA might indicate something other than arthritis or might occur naturally with nothing wrong. You can see the problem. Docs don't have all the tests and certainly not all the answers.

I don't really understand why sulphasalazine would not be prescribed. If your high ANA is thought to be due to an autoimmune arthritis I would have expected this wold be a possible way of lowering the ANA. However, if they're still unsure why your ANA is high, maybe that would explain it. If it's high due to something else, sulph could possibly make it worse. I really don't know. I'm just guessing. Hydroxychloroquine, however, I do know about. It is a mild DMARD and not many have problems with it. I've taken it for goodness knows how many years but all DMARDS can take up to three months to kick in so it's early days yet for you.

I'm puzzled as to how physio can make anyone ill. I definitely understand that it can feel painful but I've not heard of anyone actually feeling unwell as a result of it.

My take on all docs (and I've had all too much experience of them over the years :roll: ) is that, if the patient asks questions they will answer them but, if the patient doesn't ask, they presume they don't want to know. Many don't. So I suggest that between now and your next appointment, you write down anything you want to ask (I'd start with the ANA problem and why a high ANA would preclude sulphasalazine) and, if you don't understand the answers, say so and ask them to clarify.

I hope things will become clearer sooner rather than later.

Courtney1234

stickywicket wrote:

Hi Courtney and welcome

It's no fun having any type of arthritis at any age but, when you're young, it's even worse. I was diagnosed at 15 and it interfered both with my education and my social life. I do hope you have some sympathetic friends and family around you. At least my diagnosis (R.A.) was a clear cut one which I think makes things easier. Living with uncertainty is always hard but sometimes inevitable. Especially with arthritis.

I'm sorry you feel as if you've 'been forgotten about and passed around as nobody has a clear diagnosis for my condition' but, given your referral to a rheumatologist, your two courses of physio and MRIs, it does sound as if they're trying very hard to determine what's wrong and help. Sometimes it's just not clear cut and people have to wait for some time until something changes to make diagnosis simpler.

My understanding of ANA tests is extremely limited and I've no medical training at all.. They are used as an aid (not as a definitive factor) to determine if a patient might have one of the 200 or so forms of autoimmune arthritis but they don't determine which one. Also, a raised ANA might indicate something other than arthritis or might occur naturally with nothing wrong. You can see the problem. Docs don't have all the tests and certainly not all the answers.

I don't really understand why sulphasalazine would not be prescribed. If your high ANA is thought to be due to an autoimmune arthritis I would have expected this wold be a possible way of lowering the ANA. However, if they're still unsure why your ANA is high, maybe that would explain it. If it's high due to something else, sulph could possibly make it worse. I really don't know. I'm just guessing. Hydroxychloroquine, however, I do know about. It is a mild DMARD and not many have problems with it. I've taken it for goodness knows how many years but all DMARDS can take up to three months to kick in so it's early days yet for you.

I'm puzzled as to how physio can make anyone ill. I definitely understand that it can feel painful but I've not heard of anyone actually feeling unwell as a result of it.

My take on all docs (and I've had all too much experience of them over the years :roll: ) is that, if the patient asks questions they will answer them but, if the patient doesn't ask, they presume they don't want to know. Many don't. So I suggest that between now and your next appointment, you write down anything you want to ask (I'd start with the ANA problem and why a high ANA would preclude sulphasalazine) and, if you don't understand the answers, say so and ask them to clarify.

I hope things will become clearer sooner rather than later.

Hi. Thanks for the reply. Yes I understand it is soooo frustrating when you don't get the answers you need. I've suffered with this for 2 years now and it seems to be getting worse. With regards to the raised ANA, they don't know what was causing it therefore they couldn't prescribe sulpha. Also, what I mean by the physio making me 'ill' is that it brings on very bad attacks which generally make me ill. I have an appointment in November to see my consultant so will hopefully have some more answers. I may also be having a knee arthscopy so I'm hoping that may show something.