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Autoimmune disease
Rheumatoid arthritis test negative, but DH is a wreck ...
clementino · 14/12/2018 12:18
For the few weeks, DH has been waking up in the night with painful, swollen knuckles. He convinced himself he had rheumatoid arthritis, and has been making connections with various other potentially auto-immune symptoms that have come on over the last year or so - a slight heart murmur, mild asthma, a gastric problem that has made swallowing difficult - all of which have been getting him down. He's desperate to find a connection or root cause so that he can start to do something about it all, but the blood test for rheumatoid arthritis came back negative, which is a good thing in itself but leaves him in limbo again. The doctor said it may be because he had the blood test in the afternoon whereas his symptoms are occurring only in the mornings - she has recommended another test in 3 months. In the meantime he's pretty depressed worrying about it all - just getting home from work in the evening, doing his 'chores' then flaking out on the sofa. The tablets he was given for the knuckle pain also seem to have left him with stomach pain - even though he stopped taking them 2 days ago.
Any advice appreciated.
AnnaMagnani · 14/12/2018 12:24
Has he been referred to a Rheumatologist? If not push for this.
There are numerous forms of inflammatory arthritis he could have, all with typical symptoms of it being worse in the morning, and just because he is RF negative, it doesn't mean he doesn't have one of them. You can also have Rheumatoid Arthritis and be RF negative - it's v confusing.
He needs to see a Rheumatologist.
Sidge · 14/12/2018 12:36
I have inflammatory rheumatoid arthritis but am seronegative. It was confirmed by scans and other bloods.
Mind you I’m not sure your DH is likely to get a rapid referral after only a few weeks of symptoms. He needs to see the GP again to discuss his symptoms and future management, whilst waiting for a routine referral which could take months.
clementino · 14/12/2018 13:13
Thanks - that's really helpful. The GP obviously wasn't aware that there were types that gave a negative test, because she didn't suggest that.
DH has BUPA through work, so I have suggested he goes back to the GP to get a referral.
macaronip1e · 17/12/2018 18:24
As above, could be sero negative RA; another possibility is Psoriatic Arthiritis (which I have) which has similar arthiritis symptoms, but negative for RF. would def ask for Rheum referral
SheldonSaysSo · 27/12/2018 20:50
I would definitely ask about being referred. As symptoms of arthritis vary from day to day it can be tricky to make a firm diagnosis. Not all types will show in blood tests and will have a checklist of other criteria (such as family history).
Also, I wouldn't take GP's word for it even if the second test is negative. If a consultant takes a look and says no then I would be more assured.
domton · 03/01/2019 02:29
I have an AI disease, and two GPs in the past 12 months alone 2 GPs have said that rheumatology tests were the ones they least liked doing because they were difficult to interpret. This must be fairly wide spread. If BUPA, that's a chance. Get a referral. Keep a diary, photo any odd rashes, things that improve it or not, e.g. does rest help or hinder, does it disrupt sleep, does heat from shower help or make it worse or no difference, any odd things... taste changes, vision, and
foods that help or not.
Having said this though, if he is likely to obsess over it which it sounds like he may, that won't help at all. (That's not meant to sound critical: Having been there, I swing between it's all fine, I must be imagining it, GPs can go spin because I'm never going again, to feeling awful, crying, so fed up, and at the GP loads, desperately trying to get answers.) If this is the case narrow the field a bit, and focus on keeping a food diary, and times of day or similar.
Get a referral though, definitely. Good luck
jessstan2 · 03/01/2019 03:20
What AnnaMagnani says is true. It's also possible to have painful, rheumatoid nodules on finger joints without RA, and they just go away!
A lot of the non steroidal antiflammatory medications wreak havoc on the digestive system. Diclofenac (Voltarol), is a prime example of that.
Make husband get a referral to a rheumatologist. I hope he doesn't have to wait too long, all goes well and that he gets better.
Luscinia · 08/01/2019 00:16
The time of day of the blood test has nothing to do with when you have the symptoms. It is total nonsense to even suggest that. I am sero negative too so RF negative. However, there are inflammatory markers that can be raised and they should check for those. Unfortunately, with sero negative RA, they can be negative too, though mine were raised when I was really bad before diagnosis. It can take quite a while to get an actual diagnosis for some people, so be prepared for that but definitely go for a referral to a rhuematologist.
ShouldReadMore · 08/01/2019 17:01
A Rheumatologist makes a diagnosis based on all the syptoms not just the presence of a positive RF.
A big symptom of inflammatory arthritis is fatigue and it sounds like your DH has that.
I would agree that non steroidal antiflammatory medications are unpleasant to take and often ineffective. Stick to paracetamol until you have seen Rheumatologist.
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