Hives/ uticaria with RA anyone?

Mat48

I asked here about what GP thought was a cerbacous cyst near my eye a while ago. This went away but turns out to have been one of many itchy facial spots that I had been having for a few years, assuming they were a side effect of Methotrexate so I just put up with them.

Four months after stopping this drug for other reasons, the spots have been plaguing me still so obviously not drug related. Yesterday I went to GP about how to address my insomnia. I also showed him the latest culprits on my face - they look and feel like big insect bites. He says he thinks they are probably a form of autoimmune uticaria and are bad just now because I have not been sleeping - but feels I should wait until I have seen my rheumy consultant before addressing them with antihistamines.

Does anyone else here have these type of hives with autoimmune arthritis and if so how do you treat them? I have important meetings coming up and am singing in a concert with my choir and they make me appear as if I'm infested I feel?

thistlegirl

hi mat,
I don't have these but if you are interested I watched a documentary called Fat, sick and nearly dead by joe cross. he has chronic urticaria and the film follows him and another person with the condition, changing their diet and getting free of symptoms and off the steroids they were taking for it. He went on a long juice diet but I only did a 4 day one the upped my veggie intake and cut out processed foods.
I only mention it here as I have never heard of anyone with it before seeing the film.
I think I have benefited and my JRA symptoms have reduced but I have other things going on so not a true trial of the diet....
It is recommended that you talk to your gp before doing this, both my gp and rhumy were and are very happy with what I have done and the diet I am still following.

You are just coming off steroids arent you? maybe that has let this flare in, maybe you could up them again a little to see if that treats it, talk to gp again?

sorry I could only suggest things, hope it turns out to be nothing.

jenny

stickywicket

I've had hives/urticaria/nettlerash on a couple of occasions but I don't think it was ever caused by RA or meds. The first was definitely crab and I've never eaten it since. Mine weren't as you describe though. They were the big, red, blistery-type things that appear and go fairly rapidly.

I think if this is likely to be hives, whatever the cause, your GP is right to ignore it until you've seen your rheumatologist. Why chuck another med into the mix when that, too, might have side-effects? I'm sure no-one will notice at the concert. If individual voices shouldn't stand out in a choir surely individual faces won't

Mat48

Thank-you both for advice and reassurance. SW my spots are much as you describe actually only I have one or two somewhere on my face most of the time now. I thought they might be rosacea but GP says not. I've been calling them blisters for ages - have even had them up my nose - yiuck- and had sudden nose bleeds often because of them. They look like insect bites usually but the latest crop resemble small boils my husband says. Thankfully they aren't though - and have no nasty pain or septic element (pus!) - just like big mozzie bites. But I guess we feel these things more than others notice them you are right. Although husband's comments aren't helping much!

I'm backing someone for a solo in this concert a week on Saturday so just hoping she doesn't get laryngitis! I am also seeing our MP this Saturday in my capacity as an NRAS ambassador to raise awareness of RA - so it would be really nice not to look like a woman with boils on her face for this occasion! I can't even stick make up on them as they are raised. But I do currently have quite long hair so am working on the curtain effect

Interesting about the diet to addres this hives. I don't think mine is diet related because I am gluten, sugar and caffeine free and eat whole food only most of the time ie dull goody goody two shoes (not in spirit though :oops: ). I have photos for the rheumy in case my skin chooses to go all beautious a week today! Mat xx

suzygirl

My son has chronic urticaria and anything can set it off and the body goes into overdrive. I know a lot of lupus sufferers suffer from urticaria in various forms, but am unsure of an RA connection.

Boomer13

Hi Mat;

I have a variety of skin reactions, but because of having psoriasis I never know what is that and what is a "simple" histamine reaction. It's all autoimmune, I recall reading. I also recall reading that if you have a genetic predisposition to autoimmunity, whether RA, Lupus, or other, you are more likely to suffer from these types of exagerated responses involving a histamine reaction in the skin.

I get a blistering skin lesion around my eyes, ribs and spine involving small red lumps with a blister that seem to precede a flare. They sometimes appear of the underside of my eyelids which is distinctly uncomfortable I usually hot compress them and they heal faster. I'm lucky though, because unlike psoriasis lesions, they don't seem to itch much and go away faster.

Take care, I hope your spots go away quickly!
xxAnna

Mat48

Thanks Anna - that tarries well with what my GP said yesterday. They usually go away after a few days but then others appear in their place with rapidity. I was always plastered in eczema until about five years ago when it disappeared so I'm used to itchy skin - and think all this relates to autoimmunity too (eczema is thought to be an overactive immune response I have been told by my son's dermatologist). The slightly galling thing about these facial spots is that people think its adult acne which I've never had. I know its silly to find this annoying but somehow I do!

I've also had Hashimoto's hypothyroydism for about twelve years now so I'm sure there's lots of overlap going on with autoimmunity - but just wondered if anyone else here has any specific treatment for this or gets it with RA/ PsA. So interesting about your eyelids pre-flare. I know someone who had hereditary Iuvitis with RA and has more or less lost the use of one eye now through this autoimmune condition and have read of others who get hives internally which can even be life threatening but I believe this is very rare. Mat x

Mat48

And thanks Suzygirl - sorry I didn't spot your comment re son. Yes my boys have something similar on their arms and one has terrible eczema as I had at his age. The youngest is taking Roacutaine (sp) for acne and also for these arm hives.

I'm keen to avoid drugs specifically for my skin now although I use Betacap for itchy scalp sometimes and it works well. Interestingly the spots and itchy scalp seem to go together - as do dry eyes and nose bleeds so its all part and parcel with me I feel. Someone on the Raynauds forum suggested that having a negative ANA rules out Lupus but doesn't rule out Scleroderma for everyone - apparently there's another test that's used too for this condition. Hopefully the rheumy will work it out and find a drug for me that tackles all of it to good effect. It's just a question of remembering to tell him of all these strange symptoms and let him work it out I guess.

Boomer13

Hi Mat; The uveitis you mention has an known association with AS and PsA, Crohn's (for other's reading this, not to confuse this with urticaria, which the thread topic) I have been referred to an opthomologist to have it checked out. Hoping the irritation may be from the lumps only, eyelid psoriasis or Sjogren's, and not uveitis. It's all a nuisance, isn't it?

I've used oatmeal soaks for itching before, I wonder if this might help :?: but you've probably tried it since you've had eczema you whole life. We are all self-conscious about anything that shows up on our faces aren't we?

If it bothers others then they will just have to look elsewhere!

Good luck with your concert. I'm certain the audience will be concentrating on the sounds of your voice and not noticing any spots on your face

xAnna

Mat48

Ach I know Anna they won't be seeing spots - there's a chamber orchestra in front of us and anyway my spots are nicely colour coordinated with the cathedral pink sandstone

Sorry I didn't mean to suggest your eye problems might be due to Iuvitis (and for others reading this I was asking about Hives not Iuvitis as Anna rightly observes) - which comes with RA too for some. But I was just trying to make the point that my podiatrist made which is that all symptoms (including hives) - no matter how obscure they may seem - might actually have relevance to the rheumy's detective working.

Unfortunately my rheumy usually dismisses my printed lists and talks over my attempts to convey these little extra symptoms usually too. So I've never actually managed to get as far as mentioning eye dryness or Raynauds or face spots or nose bleeds - even if I wanted to. I think I tend to try and emphasise the mechanical things that worry me more such as drifting fingers and pain in back but of course in many ways these aren't so relevant to the autoimmunity issues and are nothing he can address until they are much worse. Plus he loves to have a yarn about my NRAS role and once he does that it's usually too late to retrieve things back to me and my health :roll: So somehow, without offending him at all (he's a nice man and a good rheumy) I've got to try and break this pattern I think! Mat x

Boomer13

No worries about the uveitis-thingy Mat. It's on my list of worries at the moment because my eyesight has been rapidly declining I'm trying not to think about it too much and I have my specialist appt. coming up pretty soon. The Sjogren's possibility is keeping that particular worry at bay, at least a little for now .

I think we should have your podiatrist cloned! It's interesting how some doctors think any and all teeny signs and symptoms are relevant and others who only look at the major ones. My rheum gets annoyed with me for not mentioning the teeniest, tiny thing; while I had years of training from a GP to not worry about all those little symptoms. Depends on the type of person and their interest, I guess.

Sorry, I've got your thread going in a different direction....

Take care,
A.

Mat48

Hey that's why threads are called threads isn't it? And I'm a research-led rogue embroidery artist (ie I'm a painter playing about with thread) so I relish the unexpected journeys! :P

Just out of interest - does your triple therapy which I think you take for PsA- include Hydroxichloraquine I wonder? and if so has the remote possiblity that this could be causing problems been taken into account re your eyes? I believe that, it this is the case, then simply stopping it is usually enough to rectify problems but I'm sure you and your rheumy team/ opthamologist are well aware of this possibility already - if this is a drug you are taking at all that is which it probably isn't :roll: terrible memory me!

Secondary Sjogrens does sound like a real possibility for both of us I feel.

Incidentally I'm hoping that my rheumy might put me back on Hydroxichloraquine again and add in an anti-tnf perhaps (if I meet the criteria - which I doubt somehow). It seems to be a drug that caused me no ill effects (I took it for a year) but also I felt it made a difference even if my GP didn't think so. It was the default plan that I go back on it if my RA worsened when I last saw the consultant 4 months ago but no-one has mentioned this since. X

PS my woman GP wants Podiatrist bottled! She refers to him as the Wizard of Oz.

Boomer13

Yes Mat, I am on hydroxychloroquine, so with my eye symptoms now I'm being fast-tracked for an eye appointment. I think the retinal-toxicity side-effect is a rare one though (I'm going with that ) You do really have a good detective-focus to your mind....

I can't keep track of my own prescribed drugs, so I certainly don't expect anyone else to be able to I think we will be treating the side-effects with additional drugs shortly, and I think there is a Monty Python skit in that somewhere

Now that I'm some kind of polypharmacy goddess, I don't know one sid-effect from another, let alone what's attributable to disease!

I really hope you get some good help from your rheum and maybe hydroxychloroquine, and an anti-TNF for your RA. It helps when a diligent, detective minded rheum has a plan, and a back-up plan, for their patient. Fingers crossed they come up with one for you I really can't imagine going back to an untreated state ....

xxAnna

Mat48

There is a darkly comedic aspect to all this isn't there Anna - and this is what I tend to focus on because if I didn't then what..?!

My 84 year old mother in law is competing with all her health issues from PMR to heart and BP issues that are really heavy duty - but it comes to something when an 84 year old woman competes for the worst health issues with her 50 year old daughter in law?! I'm not rising to it because she has no sense of humor and she is genuinely less well than me but this is only because of her age. She's just sent an email saying that she doesn't understand where my ill health has come from given how well both my parents were. They both died suddenly at the age of 73 having lived incredibly active lives - from heart failure relating to gout, high blood pressure, diabetes, arrhythmia and angina. How darn healthy were they compared to her or me?! :roll:

suzygirl

Just to add I have Sjorgens and my eyesight has detoriated rapidly. I already had uveitis and optic neuritis and now have lost my contrast vision and have blurred and double vision. Apparently it is down to the lupus and weak eye muscles, however I have heard of other Sjorgens patients having similar. Dry eyes can have a real impact.

Negative ANA does not rule out lupus it depends on other signs, symptoms and bloods. A nailfold capillary test will determine the chances of scleroderma as those patients have severe raynauds. Sometimes though you can get a crossover of symptoms for each disease, they didn't read the rule book.

I wish you well.

Mat48

Hi Suzygirl - that's really harsh that you have to cope with all this auto rubbish - any one of these conditions is hard to bear but having all this crossover is just lousy. Laughed out loud at your comment about the rulebook though - it made me picture many little auto imps skipping about with the intention of scuppering rheumies across the Globe! :? :roll:

Someone on the Raynaud's and Scleroderma site told me that there's a blood test that is more specific called the SCL70 which can sometimes confirm Systemic Scleroderma even when the ANA comes back negative? I hadn't realised that having a negative ANA also applied to Lupus though - thought this must be ruled out completely for me as my GP seemed to think.

My instinct tells me I've got wee bits of all these but none have yet emerged decisively enough apart from the RA - which seems to me to be changing it's presentation radically now too. By this I mean that my hands and wrists are okay these days but my feet just aren't playing ball. But the weird parasthesia seems to keep the full pain at bay so it's just like a generalised toothache in both feet currently.

I must be looking pretty patchy and rubbish though because everyone at choir practice tonight seemed to be rallying round me for some reason - although I wasn't conscious of feeling that bad. I even got told my voice sounded lovely by someone who usually takes people to task! My facial hives and hobble may have some uses it in eliciting sympathy and nice comments it seems :?

suzygirl

It is very complicated regarding the ANA test. It doesn't just have titres, it has patterns and the patterns determine which disease along with the other antibodies, anti ds dna, anti ro anti la etc etc. The SCL70 is specific to scleroderma, usually. If you have a crossover of conditions you are usually positive for the anti RNP which gives you the MIxed Connective disease (MCTD). Some people, rarely can have sero negative lupus as you can get sero negative RA. It comes down to symptoms, bloods and x rays and your rheumy really.

With scleroderma the raynauds is usually severe and the skin tightens and begins to thicken or go shiny on hands or feet. Or the mouth can open less iwider and lips thin.

Best to document symptoms, take photos of rashes, raynauds colours, swellings etc and let your rheumy decide!!

I wish you well.

Mat48

Thanks for explaining. I am hoping the fact the GP said that my ANA is negative means that all the various strands and patterns you outline came back negative.

Changing the subject a bit - I just went to collect my Amitriptyline from the chemist and the part time pharmacist came out for a catch up with me. She has Colitis and a lung condition and was diagnosed earlier this year with RA. Our rheumy has just started her on injectable MTX at 7.5mg and she's just had her second jab. Her chest sounded bad to me but she must know that methotrexate can impact on lungs - she is a pharmacist after all - and she said our rheumy had to drain both of her knees when he was last here 2 months ago. Her little girl was running about the chemist shop as we spoke. Honestly when I talk to someone like her I just feel so bad for moaning ever. We had a dark laugh about our autoimmunities and she said how the young staff around us would end up knowing exactly what RA was at least! X

mig

Just jumping in here re the lupus thing I had what looked like large heat bumps across my back gp didn't know what they were and sent me to dermatology who did a bi-opsy which came back positive for lupus but the bloods have always been negative,I then developed ra which was 4 years ago.At the moment I'm on humira and hydroxy which are working well . Mig

Mat48

That's really interesting thanks - I haven't heard of this but then starting to think I know zilch! And really glad to learn that you are getting good control with Hydroxy and Humira. X

Boomer13

And Mig, did your doctor think you have seronegative lupus as well as RA?
Have you had any more lupus-like symptoms?

The last time I saw the rheum I had a malar rash, which then resolved. He originally suspected lupus with me because of neuro symptoms but bloodwork was all negative.

mig

Apart from the spots on back I have had no other symptoms that I'm aware of ,it says on letter to gp and the copy I get bi-opsy positive immunology negative.spots start off like a nettle rash and grow till they are bigger than a 2p and then fade but all that takes 6-8 weeks.I have not had an outbreak for over 5 years. Mig

suzygirl

I have SLE which is systemic lupus. You can also get DLE which is discoid lupus and only affects the skin, and SCLE which is Subcutaneous Lupus and again only affects the skin.

If you have DLE or SCLE you would expect to find negative blood work which is why a skin biopsy is necessary to confirm lupus diagnosis. I have positive blood work and systemic symptoms hence my SLE diagnosis.

Skin lupus and systemic lupus are both treated with Plaquenil or hydroxy and sometimes steroids or steroid creams. The rashes can be very distressing and can scar sometimes.

Mat48

Well Suzygirl, other than these spots on my face and an itchy scalp and a bit of eczema returned under my lip and eyes - I don't have any other rash or skin related issues now. I did suffer from acute eczema all over my body from the age of three until about five years ago so I do absolutely know how distressing and painful skin problems can be.

But I also feel that my RA is either turning more systemic - bearing in mind the Raynauds type symptoms (dicoulouration of feet - previously in hands when RA flared) infrequent whitening of toes and fingers, circulation going quite bonkers. I am wondering if there may be a connection or further autoimmune problems now that are causing my feet and legs to be constantly slightly numb with the sensation of being wet and very cold all the time too.

Adding my worsening dry eyes and facial hives into the frame, and return or bits of eczema on my face as well - I think probably that secondary Sjogrens is a strong contender too. I believe that that this doesn't require positive ANA or any blood markers or Sjogren's biopsy - but can be diagnosed using a tear break test or, as my optamomagist did, a blink test in which I scored a lowish score of 5 and he said he felt this was likely to be secondary Sjogrens.

Thanks for helping me and others with additional advice , based on your own experience of Systemic Lupus and RA. X