Hmmm, not Lupus, but now what ...

[Virginia70]

I previously wrote that I was getting checked out for Lupus. After giving 12 vials of blood, the Rheumy can now told me he thinks he can rule out Lupus. But the blood work is not clear, so now what?

CRP has been high for extended period. ANA is positive (1:640). Anomalies with B-cells (not sure yet what).

I've improved on Prednisolone, so feeling a bit better generally. Bleeding from the gut has eased, ulcerative colitis ruled out with colonoscopy, but gut pain continues. Severe join pain continues, "rheumatoid distribution", but Rheumy thinks it is a secondary symptom related to something else. Frequent infections continue, including fevers, fatigue, headaches. Weight loss continues. Lichen Sclerosus continues (another auto-immune disorder).

Rheumy says he is now sending me to immunologist to see if there is a B-cell issue with adaptive immune system.

I think the interesting thing is that I'm adapting to being in this "chronic" state of illness so it is becoming my normal state of being now. I still don't have a diagnosis, can't get insurance cover, but my life has had to change ... big time.

If anyone has any experience with other immune system disorders that fit this description, let me know

[EOLHPC]

Hello virginia. Am vvv much identifying with your point:

I think the interesting thing is that I'm adapting to being in this "chronic" state of illness so it is becoming my normal state of being now

My lupus was infant onset, but the diagnosis was kept secret from me....until I was in my mid 50s and suffering from cumulative damage caused by widespread multisystem damage due to my version of immune disorder going with out specific systemic treatment. Am now 62, having spent my whole adult life only having secondary multisystem conditions + emergencies diagnosed & treated. I too adapted to my chronic state, which had been rationalised as normal by both me, my medics, family + friends. Familiarity breeds contempt 😉

You're very experienced, having gotten through to this point, with all these chronic issues. I'm glad you've been referred to immunology, and are continuing to attend rheumatology clinic. My rheumatology lupus & Vasculitis clinic referred me to immunology 18 months ago for somewhat similar reasons. But rheumatology stands by my SLE & SS diagnoses even though I'm seroneg...partly because my lifetime of relevant history fulfills important immunologic criteria as do my diagnosed secondaries (Lichen Sclerosus is one such, also pleurisy, various chronic GI conditions, sinusitis etc etc) and also because I'm responding so positively to my combined therapy lupus meds (inc pred).

My history of recurring complex persistent pattern infections + early onset lymphopenia & hypogammaglobulinaemia (below range G, A, M) brought about my referral to Immunology. These 2 conditions were early onset - developing way before any treatment with immunosuppressives.

Immunology has been wonderful! Am v lucky to attend a major international university hospital with vvv fine clinics. Immunology investigations have gotten quite far down the road in pinpointing the specific aspects of my bloods responsible for my antibody deficiencies & infections. Apparently I have a PID (primary immunodeficiency). It's been a fascinating process. I hope your version of this goes smoothly & helps both you & your rheumatologists as much as my version is helping me

Many of us are diagnosed with several overlapping primaries, eg mine seem to be infant onset vascular type SLE + vascular type ehlers danlos syndrome (hypermobility) + PID. my suspicion is that you may find you too have several overlapping primaries. For what it's worth: I now feel better than I have since my 20s, thanks to the support, treatment & monitoring of my many multisystem clinics + the fantastic solidarity of this WONDERFUL forum.

I'm glad you're here

Hope you'll let us know how you get on

🍀🍀🍀🍀 coco

[Virginia70 in reply to EOLHPC]

Thanks coco. I always find your posts so helpful. One thing I value, in particular, is the fact that I can still participate in this forum. I feel like a bit of a fake without diagnosis! But this also feels like a place that understands the complexities.

Your comments about the immunologist have given me some hope. I was feeling like I have been passed off to another specialist. I will be a bit more hopeful of taking a step forward.

I must say that the Pred has really helped, so I am feeling better able to cope with whatever comes my way.

Thanks again!

Virginia

[EOLHPC in reply to Virginia70]

Good‼️

Dear old pred🌟 It's so much easier to cope with its help

Re immunology: one of my most experienced lupus friends thinks everyone with immune dysfunction should be referred to immunology for profiling at the outset of the diagnosis & treatment process. But there are too few immunology depts...so rheumatology copes as best it can with us all. In my case, there were other big multisystem priotities...which got sorted out during the lupus clinic treatment trial & error thing of my first 4 years re-diagnosed. During those 4 years, my lupus diagnosis remained provisional until the last months just before I was referred to immunology. By then, I was better informed generally re immune dysfunction, but, even so, at first the immunological protocols surprised me. When is your appt? For what they're worth here are a few tips:

prep a chronological list of your infections by body system:

lab test results relating to each infection

Which antibiotics worked for what infection, the dosage & course length

Whether any infections recurr, persist & at what intervals etc

Prep a chronological list of your vacc/immunisations, including:

Pneumonia (including which type, when, eg prevnar or pneumovax)

Haemophilus B

Etc etc

I could go on, but don't want to do that to you 😉

I do vvv much think I know what you mean re feeling fake here, but none of us are fakes, and there are lots of us here with uncertain diagnosis....I make a point of remembering that the best True Detective lupus specialists & researchers tend to openly admit there are LOADS of unknowns re immune dysfunction. diagnostic criteria are constantly being questioned & reformulated etc etc. So even now I'm ready for every & any of my collection of diagnoses to be reconsidered. And that'd be ok with me now I'm responding well to my combined therapy treatment plans, so have the confidence to fight my corner should any medics try to shrug me off

Am sure I've rambled enough

Take care & 🍀🍀🍀🍀

[Hidden in reply to Virginia70]

I'm very much in same boat as you Virginia - although Sjogrens or vasculitis are being looked for plus previous diagnosis of seronegative RA. I still come here although my exact diagnosis hangs in the balance and has done for a few years.

The thing is that, as Misty14@ wisely pointed out to me, Lupus is the great imitator. So even if you definitely don't have it - the likelihood is that many who do will have symptom overlap and can relate to us. Plus the fact is that I'm on many HU and other communities - but this one has so far offered me so much in terms of wisdom and support. And this includes Paul the administrator. Stay here and relax - you are amongst friends whatever they decide to call your autoimmunity.

Twitchy

[Virginia70 in reply to Hidden]

Thanks so much Hidden ! I agree, there is a level of understanding here that I haven't found in other forums. xxx

[littleeffie]

Hi,

I think coco has covered the important stuff as she always does so well and far morr coherently than i do.

Just thought I would add that I am also under immunology,seeing mine this Thursday, to continue further investigations despite it already being accepted that I have diagnosis of Sle,RA,sjogrens,Eds plus some so adding immunology to your Christmas card list is actually a good thing and I hope you get a great deal from their consideration.

All the best

[Virginia70 in reply to littleeffie]

Thanks littleeffie ! Maybe we should go shares in a Xmas Card company! *hee hee*

[littleeffie in reply to Virginia70]

Absolutely!

I think footygirl suggested starting a lupie club so why not just make us all members and share holders but not until we have some outrageous badges 😆😄

[misty14 in reply to littleeffie]

Good luck little Effie for immunology on Thursday. Hope you get the help you need. Keep us posted. X

[littleeffie in reply to misty14]

Will do.

It's the rapid access (urgent)gastroscopy😠 I have tomorrow that has my attention today.

Ah well all this attenation must mean I'm really special😆

Xx

[EOLHPC in reply to littleeffie]

And so you are, Effie 😉 🌟🌟🌟🌟🍀🍀🍀🍀😘😘😘😘

[misty14 in reply to littleeffie]

Hi little Effie

Your very special , good luck tomorrow at gastroscopy. Hope no nasties found just answers and help. X

[misty14]

Hi Virginia

Sorry to read of your diagnosis struggles , it can be a long , wearing road!. I can agree with Coco's excellent reply that your blood results prove there is something going on with your B cells so you've been referred to Immunology. This is brilliant and could well give answers. Also your results and steroid benefit prove there is something wrong with your immune system, it's a case of finding out what!. Rheumatology might work with Immunology to solve your puzzle.

Finally be glad you don't have Inflammatory Bowel. As a mild sufferer of it it can be tough to have!. It sounds as if you have Irritable Bowel Syndrome which is very common with these illnesses because of all the stress and bother caused!. Mebeverine or buscopan can be very helpful for the pain it causes as they are spasms of the bowel. I know myself what strong pain it can be as my Mum suffers and has great benefit from Mebeverine.

I hope you get some answers soon and keep us posted. X

[Cann]

When did it all start? Can you think of anything that could have triggered it? I went through all these kinds of symptoms following major surgery and drugs, although I had had many minor surgeries and drugs over my life. The anaesthetics affected me badly, one doctor said. I had constant infections and no life at all. My GP said it could be Lupus, but the tests were not showing it up at the time and I couldn't keep having invasive tests; they just made all the symptoms worse. I was diagnosed with Chemical and food allergies, chronic fatigue and depression, but the depression came with the ill health and it wasn't what I would call depression. If you are not well and can't have a normal life who would not be depressed? I went the complementary route with a nutritionist, homeopathy and herbs and I am generally very much better. I hope you find the right route for you.

[Virginia70 in reply to Cann]

Thanks! When I think about it, I've been sick all my life in some way or another. I was full of infections and treated with steroids as a child. Really started to go down hill 15 years ago after my second child was born (I'm 46 now). The last year has been really bad and the last 6 months worse again. Old age kicking in. Similar to you, I've been in and out of minor surgeries for years. One year I had 12 doses of antibiotics. Lots of chemical and food allergies/intolerances. Also diagnosed with chronic fatigue and depression. Actually .... sounds like we are medical twins! Lots and lots of bowel issues - if I had money on it I would have voted for colitis, but it looks like it is an example of recurrent gut infections. I do tend toward complementary medicine as a first resort, but this year I have been so sick I needed more done in diagnostics. Also, my son is showing signs of inheriting a poor immune system, so I want to try and find out what is going on, for his sake.

[EOLHPC in reply to Virginia70]

Am identifying with & relating to Lots you've been & are living with...you've no doubt have so many here thinking SNAP as they read your details, that you've got -tupletes' on forum...and if your son has symptoms, this could be v interesting & meaningful to immunology (what about your parents etc?). I was exposed inutero for months daily to the notorious endocrine disruptor artificial oestrogen DES (stilboestrerol) which made me infertile & tipped me over into immune dysfunction... But previous generations in my family feature Marfan, EDS, hypothyroid, endometriosis & type 1 diabetes....

Many thanks for this great discussion, virginia

🌟🌟🌟🌟👏👏👏👏🍀🍀🍀🍀