Lots of questions from a newby

[HEB17]

Hello! I'm a newby & would really appreciate some advice.

I was diagnosed with ?autoimmune inflammatory arthritis just before Christmas. The rheumatologist put me on 400mg/day of hydroxychloroquine which doesn't seem to have had any side effects so far but also doesn't seem to have made much of a change. She arranged an u/s scan of my hands and that showed some inflammation esp around the knuckle joints. She said if there was any inflammation, she would add in methotrexate at the next appointment which is next week.

My blood tests are all fine apart from RF which was ever so slightly raised at 30.5. Can you have RA and have normal results?

If an u/s scan shows inflammation does that mean you definitely have something like RA? The person who did the scan put it on the Doppler view and there were lots of flashy red bits. The thing is that while I get stiffness and soreness in lots of joints, it's not so bad that it stops me doing anything. Most of the time, it's just there always in the background but not stopping me being mobile or restricting me. I guess I'm in denial as a result and will find it hard to take methotrexate as the possible side effects look worse that I actually feel at the moment. Please talk some sense into me about the long term effects and how this could progress.

Also, the swelling I have seems be in the muscles/tendons as well as the joints. For example, at the moment my elbows are swollen but the area around is also painful, for example if I were to run my finger down the inside of my arm from the elbow to wrist. Is this tendons?? Does this happen in RA??

Thanks for listening!

H

[AgedCrone]

I would think If your Rheumy is thinking of adding Mtx she is doing it with a view to you not getting damaged joints whilst you wait for a firm diagnosis.

I started on Mtx nearly (had RA fot 18 yrs) & most of my joints show very little damage......altho they do hurt when I have a flare...but I haven't needed any surgery which I count as a great blessing.

I don't think trying to understand everything about this wretched disease helps at the outset....it is so complicated you can get all caught up in what you think should happen, then the Rheumy does just the Opposite! After all this time I take it visit by visit...I write down anything that worries me...& rarely get the answer I expect

You won't know until you try if Mtx is for you. I think it's because it's usually the first Dmard prescribed that so much is written about its side effects.

But believe me other Dmards can also have very unpleasant side effects.I hope you get a definite diagnosis soon....may be it's not RA, but if it is, welcome to HU....we don't know all the answers...just most of them!

AC

[Downtime]

Hi Heb, it seems as if your rheumatologist is looking after you well which is good. Methotrexate can work well for most people. You might a have few minor side effects but these seem to settle down. I've been on it for nearly 2 years and don't have any problems.

Yes you can have RA with completely normal test results. I have never had an abnormal blood result. It seems I might have psioratic arthritis and definitely the tendons and ligaments are affected. Much more so than joints now after a while on treatment.

I hope you get a firm diagnosis soon and once treatment begins you start feeling better. Long term, well everyone's different but you have to be really unlucky and have a very aggressive form for disability to be the prospect. Most people can live fairly normally with this disease,

[helixhelix]

You can have RA and perfectly normal results, especially at an early stage of the disease. But this is a progressive disease, and left uncontrolled it is most likely to get steadily worse. I started with little niggles one year, then a few more aches and pains the next, and then a little bit of swelling - which is when I finally went to the doctor. And when I finally got to see the rheumy several months later I was in agony. Because I'd left it so long I did have a bit of damage in one toe by then.

I don't have any side effects from methotrexate and it has kept me living a normal life for the last 6 months years. But I understand that it seems scary, and I was extremely nervous the first time I took it. I suggest you talk to your rheumy next week, and if you're very worried ask if you could give the hydroxy more time to work by itself before starting MTX - and ask what she/he felt the risks of that were. It is such a variable disease that the rheumy will have a better idea than us about how active and/or agressive you disease is, and how important it is to stamp on it now rather than giving it a couple of months.

But damage can occur fast - I had a bad spell of a few weeks last summer and my toe was further eroded, so don't be too complacent.

[oldtimer]

It is well worth spending some time looking things up on the NRAS website. There is a lot of information there which will help and it's all presented in a user friendly way that we can understand. The more you know about the condition, the better able you are to ask the rheumatology team the questions that could do with answers (but you may not get them yet!).

It always seems to take ages to get sorted out because it is trial and error at present. Work is going on to make treatments more specific, but they haven't got there yet.

[Hidden]

Hi HEB - Yes, you can have pain in other than joints. If you search at the top of the page for something like "pain tendons / muscles" you will find a lot of past posts the address that same thing. It helps to know that you are not alone sometimes...

[Bubblemania]

My blood tests were fine too but after five months I have been officially diagnosed with seronegative RA. I find it helps that my enemy now has a name. My symptoms (so far) are mild relative to those experienced by others, I have yet to experience sharp pain; more a case of continuous mild discomfort. I wake up each morning with stiff hands that passes after a few minutes, episodes of soreness but for the most part I can get on with my life. The HXQ took about 6 weeks to bring some benefits so stick with it and this forum which I find is a great way to lift your mood if you feel down.

[minka]

This can happen in something called Enthesis this is where the ligament attach at bone points have a look for it on utube good doctor on their shows examples. this can GO AWAY and can come back its when the immune system goes hay wire could be due to infection etc etc.

So if the sore points are at the tendon junction it could be this. But then it could be psa you could ask the question. to sort out Enthesis you could ask if a Kenolouge injection would help private its about 300 quid BUT SORTED MY COUSIN OUT WITHIN 3 DAYS YES 3 DAYS and he was in a bad way could not button up his shirt for 3 months.

Now here comes the catch 22 if its your ligament that are affected and not doing ther job then nothing is tracking right with the cartlige a joint points so from that anything thats ligament damage must in turn put additional pressure on the cardlidge But everyone else on here is different so its a real hard answere to make which problem u have.

blood test dont usuall show possitive im negative on my bloods so they say you cant be having these problems hey well try my body for half an hr then to see. but their is no swelling so whats that got to do with it well some people dont even swell after the earlier stages. one thing i would ask does any of your ears ring tintinus or both of them ring

[HEB17 in reply to minka]

Minka, just reread your reply and noticed that you asked about tinnitus. Yes, I do get that a bit in both ears. Is that relevant?

[Katie6221 in reply to minka]

Hi minka!

I saw your post and just had to respond- I have had constant tinnitus ever since starting methotrexate last fall. Prior to starting RA meds, I had no ringing in my ears whatsoever, and now it is literally constant.

I was intolerant of methotrexate and had to stop taking it at the beginning of January, but the ringing is still going strong.

Any insights about this? Any ideas about what may have caused your tinnitus? I have been reading recently about tinnitus and anemia in RA patients and wonder if this could be the cause.

Looking forward to hearing your response!

[HEB17]

Thanks so much for all the replies. Ironically, since I posted everything has flared up, my joints are much more painful and I fell absolutely shattered. it feels like the reality of this has come crashing down and it's harder to shrug it off and convince myself that everything's fine. I see the rheumy again next week so I guess I should put a positive spin on it that at least he'll see me when things are hurting. I'm apprehensive about the appointment after bad experiences with consultants for a different autoimmune problem (graves disease) and an disappointing experience with a different rheumy before Christmas. She's moved to a different hospital so hopefully the new one will be more interested. I am going armed with notes!