New here and a bit confused

[jjones78]

Hi everyone,

I have been reading lots of your posts and it has been really helpful but I am a bit confused following an appointment with my rheumatologist yesterday. I apologise in advance as this is a bit long!

I am 40 and was diagnosed in 2017 with PBC, it is an autoimmune disease that affects the liver. Around Christmas I started getting pain in both my wrists and by early January my hand were very stiff and sore. This continued to progress, I felt really ill and fatigued and was in lots of pain particularly in my shoulders. I could hardly do anything for about 5 weeks, getting out of bed was a struggle, I needed help getting dressed and my kids had to squeeze the toothpaste for me! It was difficult to sleep as every time I moved I woke up with the pain. My hepatologist referred me for an urgent appointment with a rheumatologist as he said it could be RA as once you have one autoimmune diseases you are more likely to get another one.

The first time I saw the rheumatologist he did tests to check for viruses incase it was viral arthritis and did an ultra sound on my hands and wrists which showed some inflammation. My previous blood tests showed that my ESR and ferritin levels were high.

At the minute I am nowhere near as bad as I was. However, I still have pain and stiffness in my hands, wrists and shoulders particularly in the evening, during the night and in the morning. My knees are also quite stiff in the morning and sore when I am trying to get to sleep. I saw him again yesterday and was in and out in 5 minutes. He said it was not viral and that I was negative for RF and anti-CCP antibodies. He said that I was in a chronic phase and that I needed a steroid injection and that after that he would look at medication (I can't take lots of medications because of my liver condition). I said so it is not RA then, and he said yes it is seronegative but could develop into seropositive.

So now I am confused because from what I read here seronegative is a form of RA! Do you think this mean I do have seronegative RA? I appreciate I should've pushed him more yesterday but I had been trying not to read too much before my appointment and hadn't heard of seronegative before.

Thank you so much if you have managed to read this essay! Any thoughts/advice would be appreciated.

[helixhelix]

I "think" what he might be doing is to use the steroid injection partly as a diagnostic tool, as well as giving you instant relief. This is just a guess, but seronegative RA can be a bit tricky to diagnose so he may not be wanting to suggest long term drug treatment until he's sure. If you react well to the steroid - as in it makes you feel loads better - then that indicates an inflammatory problem like RA.

There are two types of RA - seronegative and seropositive. The difference between them is merely whether your body has built up specific antibodies. If you are +ve then there's much more certainty that you have RA. If you are -ve the doctors will need to look for other indications to be sure of a diagnosis.

Some say that +ve is more aggressive, and being -ve is easier to manage. But that's not always true so don't really bother with which you are. Focus on managing it instead, as it could be tricky with your liver.

[jjones78 in reply to helixhelix]

Thank you, that is really helpful! My doctors surgery just called and I am getting the injection today. Is it really sad that I am very excited to be getting an injection?!

[Mmrr in reply to helixhelix]

I'm just about to confuse the situation even more....

I'm seronegative. I've had 2 steroid injections over the past 2 years. One at my first appoint with the rheumatologist which had no effect. None.

I had another several months later which may have helped a little.

However oral steroids help me a lot, with relief a few hours after taking them.

As for seronegative/seropositive, people with seronegative RD often have a more difficult time getting diagnosed and commencing adequate treatment as many rheumatologist look only at the 'evidence' and forget the patient.

That doesn't seem to be the case with you, which looks really promising for your future care.

[jjones78 in reply to Mmrr]

Thank you, nothing is ever simple is it! I have been reading some of your posts and I see what a struggle you have had. Now that I am better informed I will be more prepared for my next appointment which will hopefully last more than 5 minutes.

[helixhelix in reply to Mmrr]

Oral steroids and injected steroids are very slightly different types of steroid. I'm the opposite of you as oral steroids just make me cry or throw things at people, and injectable steroids are a wonderful pain free holiday! Go figure...

And agree with you. It can be much harder for sero-ve people at the start.

[Mmrr in reply to helixhelix]

' tis all very strange !

and to be fair I think my lack lustre reaction to steroid injections shaped my path for a while.

[rab1874]

Hi jones I’m seronegative ra and have been coming up 5years, I hadn’t heard off it before I had it and it took a year to get it under control and now I’m quite well controlled with methotrexate 20mgs and Alimunumb 40mgs so once they give you meds hopefully things will settle down a bit and I still get a steroid injection now and again when I need it xxx

[jjones78 in reply to rab1874]

Thank you so much that is reassuring. I am used to taking a cocktail of medication so I don't mind that as long as I can get relief from the pain. Hopefully the steroid injection will help.

[jjones78]

Hi, my Ferritin level was 645 and my hepatologist tested for haemochromatosis. I am H63D heterozygous which they do not think is significant, I think it just means that I am a carrier but that I don't have it. My consultant said that he thinks the raised ferritin may be due to "an acute inflammatory process". I guess this could be my liver or the inflammation in my joints. I don't know if ferritin levels are monitored for RA?

[sylvi]

My friend across the road has PCB and she suffers with that and she has a back conditiion as well. Sad to say she is suffering the fatigue so badly. I understand how she feels as she also has cirrosis related to PCB as well and there is something else as well and for the life of me i can't remember what it is. These diseases never come on their own. Hugs darling if there is anything i can ask my friend for you i will as she will be happy to tak about it as she knows the condition better than,though i understand the autoimmune side of things i really don't know much about PCB.I did read something about it online,but like a lot of things i fail to remember what they are. I know about the symptons that go with autoimmune disease and i know the disease she is autoimmune related. So we sit and compare our lives together and share sympathy with each other. Anyway if there is anything i can ask her about PCB ask and i wil get back to you.xx

[jjones78 in reply to sylvi]

Hi Sylvi, thank you so much for your reply, you are so kind. It does seem to be one thing after another! The fatigue with PBC is awful along with the itching, although luckily I am not cirrhotic yet. How long has your friend been diagnosed? It is great that you have a friend to talk to about these horrible autoimmune diseases as most people don't get it. I meet up with someone I met on the PBC forum and it helps so much to be able to share experiences and have a good moan lol! I am hopeful that I will start to get some relief from this joint pain now. It has completely floored me and I am usually someone that battles through things. xxx

[sylvi]

A couple of years ago maybe more,she put in coronary care for two weeks before they started to sort her out,when she came out of hospital she was as weak as a kitten so we cooked her main meal until she felt aboe to cook for herself. Now she still comes over for Sunday lunch and now she is part of the family if we go anywhere she comes with us. Even now she seems quite poorly,though she pushes herself to to some volunteering work at medf-car once a week and still goes out to meet old friends and she joined the over 60s as well. She pays for it as she has to rest when she gets back home.xxx

[Steviebute]

I have an ebook that might help... it was a big help to a friend of mine who had RA.