So close..

[Tonkie]

So I saw rheumatology last week. Unfortunately they weren’t bothered about my rashes and there was no mention of dermatology or biopsies. They also said they wouldn’t change me from methotrexate even though the side effects were the reason I came off it. She said to start it again. when I’m established she will try lowering the dose to see if that helps the side effects.

I was a little down about this but desperate to feel better, so I injected on Friday.

On Saturday I was working on my laptop and my hands started to itch intensely. My laptop was warm, not hot. And I thought this was the reason I was getting so uncomfortable. Took a break and went back to it. My hands started to burn severely, covered in hives and all this started to come up. I’m gutted cause I really need to get back into a routine and my hands had just started to clear after the last flare up. My house is a mess - it’s actually filthy. It’s getting me so down not being able to do what I want to do.

Sunday I was very sore but it wasn’t burning and itching again. Went back on my laptop it started again. I’ve never felt pain like it. Had to call out of hours. The doctor I saw was very sympathetic but pointed out I have just reintroduced methotrexate and maybe it’s that what I’m reacting to? I honestly feel like it’s the warmth from the laptop. But feel stupid for saying that? Told me to call rheumatology to let them know as they’re ’so interested in every rash’.. but I just feel like a pain and problematic to them.

I called the nurses to let them know they said they’d tell my rheumatologist on Wednesday. But I just feel like a pest. I can’t use my hands they’re so sore and swollen. I’m taking 5 antihistamines a day and my steroid creams are doing nothing. I feel so trapped. The GP did offer oral steroids but my rheumatologist doesn’t want me taking them because of the infections. So I’m just kind of stuck and scared to touch anything that might make it worse.

I don’t want my rheumatologist to think I’m just saying it to get off methotrexate. Does anyone else react this way to the heat or reacted like this to methotrexate? I was always fine on it before. I’ve finally had my first week without an infection since December now I have two hands I can’t use.

The doctors don’t seem bothered about any rashes I get even though they impact my life so severely. I don’t get a say in my medication. I know I should try to think positively but I’m having so many setbacks and can’t see an end to any of it. I looked into private dermatology but was quoted 2-3k on a biopsy to find out what these different rashes are. I can’t afford that.

It’s all making me miserable. I know the methotrexate will take it all away when I can finally take enough of it.. but then I have the fatigue and nausea to contend with which is also limiting. I guess I just wanted to get my frustration out. My hands are so sore and now another week is ruined while it heals.

[PMRpro]

That isn't "being a pest" - it is you reporting your medical problems and they SHOULD be interested - that is what Melanie Sloan's Cambridge study the other week related to.

"She said to start it again. when I’m established she will try lowering the dose to see if that helps the side effects"

A more usual approach is to START you on a lower dose to allow the body to get used to the drug - why is she doing it the other way round?

[Tonkie in reply to PMRpro]

The GPs I speak to think rheumatologists want to see and know everything.. but in my case I’m just a bit dismissed?

She said she doesn’t think anything else will work for me as well as methotrexate. She wants to get my symptoms under control first as my joints are swollen as well as my skin flaring all the time. I think she just wants me to get better as quickly as possible as I’m bombarded with symptoms at the minute.. so I guess it’s nice she cares and I’m grateful for having meds at all - I know some people are struggling to get any. But I don’t feel like I have a say in the medication no matter how negatively it affects me. And I don’t feel like I’m listened to as much as other people on here. They don’t seem to be interested in my symptoms anymore and I feel a bit silly ‘whining’ about them.

[OldTed60]

I can’t believe how little help you’re getting with your every so painful looking skin. My first thought is that it looks very like the pompholyx (aka Dishydrotic eczema) I used to suffer from for decades prior to my menopause. This was definitely part allergic part hormonal and heat/ sweat was a major trigger for mine so your laptop theory could make sense of this perhaps. I had it again in my palms as part of a Steven’s Johnson reaction to IVIG 2 years ago.

Methotrexate is now used as a treatment for severe eczema so if it’s this then it makes sense of your rheumatologist’s thinking - however you really need a dermatologist on board to confirm this diagnosis and work with rheumatology. Azathioprine and Mycophenolate are both often used by dermatologists too for conditions such as Dermatomyositis and severe eczema my dermatologist says. I couldn’t tolerate methotrexate even by injection after a few years and my liver hated it. Azathioprine hospitalised me with pancreatitis (a rare reaction) so I finally got Myophenolate and my skin has been pretty good ever since. Now I’m also on Rituximab as well and this has helped my skin even more

They may not even need to biopsy initially as a good dermatologist can diagnose various types of allergic dermatitis on exam. If you can’t persuade GP or rheumatologist for an urgent referral then it may be worth researching and seeing a good local NHS dermatologist who also does private work and could switch you to their NHS lists if they feel biopsies and ongoing treatments are required? My son did this for an ongoing issue with sweat triggered facial rashes and acne and it helped him jump ahead faster.

[Tonkie in reply to OldTed60]

Thankyou so much for your reply. I’ve researched so much about my hands and the thing that comes up a lot is the ‘dihydrotic eczema’ - sorry can’t spell it. Usually I get tiny little blisters if I use water or chemicals. Then they peel. I’ve never had such an instant reaction like this that has burned this badly. Nor have the blisters ever been so big or aggressive. You’ve made me feel less crazy about the heat theory. Thankyou. On a hot day I get the tiny blisters and since stopping methotrexate it’s started on my feet - never had it there before.

The GP said it looked like a weird pustule psoriasis thing. So I’m just left with no answers all the time. When my face was blowing up and all my skin was peeling off there, rheumatology tried to get dermatology to see me but they just weren’t interested and knocked back the referral.

I’ve had my confidence knocked about approaching anyone with it. But after your message I might see my regular GP while it’s like this and see if they’ll refer me. Failing that might try your private/NHS suggestion thankyou. Knowing what it is would mean I could manage life better.

And regarding drugs, thanks for letting me know you’ve had other ones that have helped. She made me feel like methotrexate is the only one that could get rid of these things. I guess I’ll have to put more time in with MTX and bring up changing again further down the line.

Thanks for the support and confidence x

[OldTed60 in reply to Tonkie]

Yes the clue is in the word dishydrotic (I maybe spelling wrong too!) which means sweat related.

Mine started as a child and my palms and fingers looked like yours - it was miserable. I also had atopic eczema everywhere. I didn’t get much help from doctors apart from topical steroids but this was in the 60s and 70s. My mum tried cutting out milk, using different washing powders etc but nothing helped much.

Heat/ humidity and sweating made it so much worse in my teens and I was hospitalised with it during my first pregnancy when I was covered from head to toe in itching weeping lesions. I also had alopecia Areate on off from childhood.

All they ever offered me was steroids, mostly topical but latterly oral or even infusions when it was really bad. It improved a lot when my hypothyroidism was diagnosed and properly treated in my late 30s and the alopecia has never returned. The location of yours and the reference to heat of the laptop made me want to flag up pomphyx/ dishydrotic eczema. You have my great sympathy - I know how sore and painful this is. Mine has only returned a few times since menopause as allergy-related to various chemicals and anti rheumatic and other motility drugs I’ve been put on. I know very quickly when I’m getting an allergic reaction although it’s not so clear to others as a delayed and slow reaction - but I start to tingle in my lips, scalp and hands. Fortunately or unfortunately my track record for very severe delayed drug reactions now speaks for me and we have learnt the hard way that avoidance is key. In your case I would think avoidance would be to switch to a different disease modifying anti rheumatic such as Azathioprine or Mycophenolate asap. My dermatologist is very much in favour of the latter and Rituximab for me. She used them for her Dermatomyositis patients - which we suspect I have as well. With working on laptop maybe you need a dehumidifier and a cool, dry environment with breathable cotton gloves?

[Lizzo32 in reply to OldTed60]

”however you really need a dermatologist on board to confirm this diagnosis and work with rheumatology...”

-+-+-+

Absolutely!☝️👏👏✅

Those palm blisters look really painful and nasty!

Just hope they don’t get infected!?

Perhaps Savlon, healing disinfectant cream as well?

[Tonkie in reply to Lizzo32]

Yeah I got concerned today about infection. I called the GP but they could only see me at school run time. Thankfully they’ve got me in tomorrow morning. I asked for a dermatology referral on the form as you guys have given me the confidence to speak out and ask outright. Again 🤣

OldTed thanks for sharing your experience.

Mine does sound very similar and you’ve given me hope for the future - thankyou! There’s so many triggers and feel like I’m losing my whole life to these conditions and side effects and infections. Yours sounded horrific I’m so glad you’ve found some relief from it. Your rheumatologist sounds very knowledgeable and helpful too. I had issues with sweating in my teens - I had one of my sweat glands operated on as it was so excessive. Perhaps the sweat theory is what is happening here.

Il keep you updated on what the GP says tomorrow xx

[Tonkie in reply to Tonkie]

Now I can’t leave my bed in the winter due to severe reynaulds and I can’t leave the air conditioner through the summer due to sweat 🤣 it’s a wonderful life!

[Ffshelp]

how awful! I have nothing to offer but sympathy and fully understand the feeling that you are a nuisance. It’s horrible.

[Tonkie in reply to Ffshelp]

Thankyou for being kind. Sometimes I feel like I’m whinging about nothing. This time it’s so sore and it’s ruined every plan I had for this week. X

[Star13]

And just a note on the heat from your laptop…..as you think this is what started this off?

You really should not have any heat coming from it, it has fans which should be keeping it cool. My other half uses Microsoft stuff so has a computer that is compatible for them. I’m always noticing his fans coming on and off which means the laptop is getting warm. On the other hand I use an Apple laptop and mine is always cold and I never hear a fan. So perhaps you need to look at that to stop any heat from coming near your hands in the first place.

If your worried about expense Apple do an interest free loan so you can pay monthly. BTW I’m not affiliated to them just pointing out how you could get back on a laptop if you had to without a reaction.

[Tonkie in reply to Star13]

Hi. Oh I’d love a Mac - maybe now is my excuse 🤣 it wasn’t hot.. just warm. I don’t think it was overheating I think I just can’t go near anything warm. But if the apple ones are cool then 😏

I just got my daughter a MacBook and I’m so jealous. I might give hers a go and see if it’s better for me. Thanks for the suggestion! X

[Star13 in reply to Tonkie]

Yes try hers and see how you get on.

[WinterSwimmer in reply to Tonkie]

The only caution I would add here about a Mac is that because they’re made from aluminium they can be very cold first thing in the morning, which for me sets off the first Raynaud’s attack of the day.

What you are going through is horrible. Mtx made me very unwell too, and I still took it for several years. It may be the so-called gold standard, but another reason they like it so much is that it is very cheap and sometimes I think that is more important in prescribing decisions it should be. I do think a dermatologist would be a good idea.

[Tonkie in reply to WinterSwimmer]

Ooh Yep reynaulds here too and I probably wouldn’t be able to touch it from September - may 🤣 I’m gonna go see how cold my daughters is right now. There’s a fine line keeping my body at the optimum temperature 🙈

Horrible blisters if I do.. chilblains if I don’t!

Yes the cost has come to my mind too. It makes you feel lousy that being the reason. Like I’m not sick enough for a better medication. Sorry to hear you struggled too. Think I’m going to have to put more months/years in with it too 🙁

[KayHimm]

Tonkie -

Anyone can see the severity of your rash and how uncomfortable it must be just by your photo. Because a rash isn’t from your autoimmune disease does not make it insignificant. I really do understand because I get all sorts of issues from autonomic dysfunction- even a facial rash that looks like a lupus rash.

The heat from the computer certainly could be causing symptoms, maybe that rash. Even vibration can cause symptoms. There are nerves throughout our bodies that get activated.

I think the best person to talk to is your immunologist. It was actually an immunologist who suspected my Dysautonomia. They have to recognize where these reactions come from. It can be hard to know. They must think there is an allergic reaction, right?

Do you have reactions to any other stimuli? I know you get that bad rash in the sun. It could be heat too. Any reactions to chemicals? Pressure sensitivity?

Do you have GI issues?

I am glad your GP validates your symptoms.

I will try to remember how my rheumatologist seemed to know the rashes were different from my autoimmune rashes.

I hope your doctors get a better picture of what is causing all of this.

You are not a pest! You just want to feel better.

XxK

[Tonkie in reply to KayHimm]

Hey Kay

Thanks for the reply. I was initially referred to immunology at the beginning, along with dermatology. Both departments wrote back ‘we can’t help her’ and both suggested a large dose of antihistamine daily. In my case, unfortunately, no one seems bothered.

I can’t really get them wet - bathing the children is bad, even in their mild bubble baths. My partner has had to do this for the last 8 years. I can only use one soap, one soap powder etc. chemicals make it worse. Touching dust. Pet hair. Warm days. Putting rubber gloves on. Chopping vegetables and getting them moist.

To my knowledge I get 3 different types of rashes on my hands. One has been described by rheumatology as an ‘autoimmune rash’ this causes big pustules with a big head on - these come up randomly and I’ve found no trigger for them. Usually my tensonyvitis will be bad at the same time.

But the other rashes I get no one seems bothered about even when they’re so painful and cause so many problems. If I could I would see immunology and dermatology privately. I’ve even started playing the lottery - just for private healthcare 😢

Maybe the GP will have some good news for me today. This one has hurt badly and if it wasn’t for this forum I’d literally feel like nobody cares. So thankyou! Xxx

[KayHimm]

Hoping for good news from GP. XxK

[Stills]

note I don’t have Lupus but Adult on set Stills Disease which manifests as rheumatoid disease however it has many symptoms similar to Lupus and I have a collection of other AI things like LS, IC, DC….. I have a strange sporadic torso rash that starts as tiny dot blisters, very sore and itchy then they scab and turn into brown scaly lesions. These are forming in spiral shapes on my torso and starting to appear in my thighs. GP has dismissed them so I use the topical steroid team prescribed for LS which helps a bit but they are still accumulating. Heat is a key factor that makes them flare as is stress and any another ailment. I’m not on medication so kept a food diary to see if I could track a cause but haven’t so far. So the only advice I can offer is keep them cool. Is there something that could direct the laptop heat away? Could you get a separate keyboard to keep your hands away from the heat? So sorry for what you’re experiencing and hope you get some answers soon.

[CecilyParsley]

Hi Tonkie, I am so sorry that you are being dismissed. Your poor hands look so painful, I suspect they would not dismissed it if they suffered themselves.

I fully understand what it is like to be dismissed I had the same with my leg for the past 14 months and it is demoralising and makes you despair that things will change. We absolutely deserve better. I point blank refused to continue Azathioprine due to throwing up bile and stomach pain. As a result my Rheumatologist refused to give me any treatment. It is unacceptable.

Having been in your position over the years of not getting anywhere I know that if you see a private Dermatologist for a consultation and select one who works for your particular Health Board on going tests can be done on the NHS, you might have to wait but at least you will be in the system. You can probably be seen in a few days and if nothing else you will have a specialist opinion and they can write to your Rheumatologist.

I wish you the very best of luck xxx