My feed
Premium

Please
or
to access all these features

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

Autoimmune disease

RA or Lupus (or something else??)

13 replies

Ihavenoideawhatmyusernameis · 26/07/2023 15:20

Hey - in need of wisdom as navigating the autoimmune wilderness has boggled my mind!

long story - will keep it as short as possible

was diagnosed with IgA Nephropathy in 2006 (confirmed on biopsy) stage 3b CKD, eGFR 45. Also had, at that point raised IgA of nearly 6 on bloods. IgG 13

have had over the years many negative ANA. Have had skin problems (weird tiny blisters on bottom of feet and sore hands) and facial flushing for years.

Now - debilitating joint pain since January. Mainly knees but then big toe, ankle, shoulder and wrists including tingling sensation. Currently venous IgA nearly 7 and IgG is 16.3. Can’t see ANA online yet. ESR 15 (was 7 few months ago) no RF on line yet either. Have been contacted by GP for FTF appointment- they’re going to tell me it’s RA aren’t they?

has anyone been through similar? I suppose it could still be lupus.

TIA

OP posts:
LMNT · 26/07/2023 15:32

It sounds awful OP I am sorry you're in such pain. I work with people who have autoimmune issues and in my experience unfortunately if you've got one, you've almost certainly got another.

It could be RA or more likely lupus if the flushing is in a butterfly pattern on your face (malar flush). The blisters could be Dyshidrotic Eczema another autoimmune condition.

While you wait for your official results you can already try to eliminate potential triggers. What worked for the patients I work with is a really low inflammatory diet (no dairy, soy, gluten, grains), red light therapy and some intermittent fasting if appropriate.

Good luck!

Ihavenoideawhatmyusernameis · 26/07/2023 15:40

Thank you for replying

i’ve tried gluten free due to GI issues which didn’t really make too much of a difference.

it comes in waves - i feel so unwell for weeks on end and then it’s like a release (is the only way I can describe it). It’s like the tiredness starts to lift and the pain starts to ease and then over the course of a few days i get back to “normal”. A few weeks later, I do it all over again 😩

the eczema you mention, it’s very similar to that - I’ve come across it before on good old Dr. Google 🤦🏼‍♀️ the facial rash, although butterfly shape is much less severe than some of the photos I’ve seen so who knows but I am very sensitive to sunlight

OP posts:
LMNT · 26/07/2023 15:44

With gluten free, you need to give it a good 12 to 16 weeks to see a difference. I know it's awful to give up gluten, dairy and soy (and I would even recommend eggs, sorry!!!) for so long but it really does make a difference. These are the most common triggers for autoimmune I have come across.

The good news also is that most people I work with are able to reintroduce (slowly) many of the foods they cut out. Usually the trigger food is easily identifiable because there is a spectacular reaction, big flare ups of pain and they just cut that out longer term.

Ihavenoideawhatmyusernameis · 26/07/2023 15:55

The dairy I will really struggle with. I’ll give gluten another go I think. I did it for two years as it triggers my IBD.

its just such a nightmare 😩😩😩

OP posts:
SkaterBrained · 26/07/2023 16:08

Is the joint pain symmetrical? It sounds like psoriatic arthritis but they don't necessarily split into PA and RA, it's often some symptoms more associated with each and your diagnosis is the best fit. RA often starts in fingers and toes, so it might be psoriatic, but it doesn't mean you'll definitely get psoriasis (other than the food lumps)? I have PA but only get pitted fingernails, no skin problems.

LMNT · 26/07/2023 16:11

I know, it's pretty miserable. We do a lot of work on mindset with people because a lot of the foods that cause problems are seen as "normal" and are everywhere.

The way I look at it (I eat this way too because I have Hashimoto's) and the way I teach my patients to look at it is as a prescription. If you were allergic to gluten you'd stop eating it.

In a sense you probably are allergic, not in the IgE trigger sense, but your body is definitely not happy with something you're eating. It helps to frame it that way.

Ihavenoideawhatmyusernameis · 26/07/2023 16:13

yes it’s symmetrical but worse on one side than the other. My left ankle was so bad I thought I’d broken it in the night. Went to bed fine and woke up with it. Same with my knees. Had everything x-rayed and no sign of any damage but omg the pain is something else 😩😩😩

OP posts:
Ihavenoideawhatmyusernameis · 26/07/2023 16:15

Lots for me to think about that’s for sure. Will be glad to get to some sort of balance with everything just so I can feel human again

OP posts:
CoffeeBeansGalore · 26/07/2023 16:28

Sjogren's Syndrome can have overlap symptoms with Lupus, including sun sensitivity, weird rashes & joint pain. It affects people differently. For some it shows up in blood tests, others not. Classic symptoms are dry eyes and/or mouth but you can have Sjogren's without these being major symptoms. A saliva gland (lip) biopsy can help with diagnosis.
Some people have organs affected - lungs, kidney, liver, heart. Others not.
For a rare minority it affects the nervous system and causes mobility issues.
You would need a referral to Rheumatology and possibly neurology depending on symptoms.

Ihavenoideawhatmyusernameis · 26/07/2023 17:18

It’s just so difficult because there are so many thangs that have similarities 😩 my eyes are awful at times, so dry and sore. I’m just a wreck 🤦🏼‍♀️

OP posts:
Childhoodnostalgia · 26/07/2023 17:41

As PP’s have already said, there is such an overlap with all these illnesses that it can be hard for even the experts to always get it right.

I had a similar history to yours and my GP was convinced that I had Lupus due to my symptoms and results.

I had a Malar rash, symmetrical inflammatory arthritis, kidney issues, chronic dry eyes and a rash on my hands and neck. In fact I have Dermatomyositis which was diagnosed by Rheumatology who even themselves struggled with the very lupus like rash.

So I know it’s hard when you’re in this state of limbo and all you want to do is hurry up, get a diagnosis, start treatment and feel better, but just hold fire and wait and see what the GP says.

Ihavenoideawhatmyusernameis · 26/07/2023 18:44

Thank you 😊 your post summed it up for me perfectly to be honest. I just want to know what im dealing with and I can get in with it if you know what I mean. Either way I’m going to have to adapt to whatever it is.

OP posts:
Ihavenoideawhatmyusernameis · 10/08/2023 21:00

Bumping my own thread pretty much to have a bit of a rant - sorry

went to the GP again as having continued joint pain and to get blood result from coeliac screen (some of my symptoms started after I began eating gluten again in jan. Prev neg tTG but was gluten free at time of test but despite this was told definitely not coeliac). Coeliac screen not done!! Wtf!! Spoke to GP who again, couldn’t find anti-CCP on the system! Told me would do rheumatology referral and they will do it.

I asked him how rheumatologist will be able to triage the referral without the relevant information and the GP told me I’ll have to just wait but likely won’t be seen for months!!

just checked online and he’s referred me to complementary therapies!! Could this get any worse? Fuck me! Have emailed them to complain as this is beyond a joke. He couldn’t get me out of there quick enough and clearly was either out of his depth or didn’t give a shit (which would make sense as he was so dismissive)

where do I go from here? 😩

OP posts:
Please create an account

To comment on this thread you need to create a Mumsnet account.