Waiting for New Referral (New rash)

[scscsc]

Hi - So I posted many months ago after my first consultation which was very disappointing. My diagnosis of hypermobility was confirmed but everything else dismissed with no investigations.

I took the advice of the good folk on here and asked for a second opinion which the GP thought was a very sensible idea. I saw the 2nd rheumy in May and he was very thorough - spent an hour with me. Did an examination and talked me through what it could be. He did an anti-dsdna test and a CK check. Both of which were normal.

He then wrote to me/copied GP letter and said he had considered lupus (my ANA is borderline at 1:80, hair loss, mouth ulcers, joint pain and fatigue). But he wasn't convinced but did say that these things evolve over time and to contact with new symptoms.

One thing he did ask about was weird rashes which at the time I had only had one - a butterfly shaped rash on my chest when I sat in the sun last yr. The original doctor had said it was odd but as it was a one off it wasn't diagnostic.

Anyhow now I have a new selection of rashes on a daily basis. I've attached one but I have it on arms/torso and legs at times. The legs are more bright red/flat and non itchy. The arms more pink and splotchy and the abdomen pink blobs. It gets worse when I walk/do exercise. Doesn't make a difference if it is hot or cold. It comes up and down throughout the day. I have been taking cetirizine in case it was an allergy but it has made no difference.

My GP had no idea and at first said come back in a few weeks but I said that Rheum had mentioned rash and so she emailed for advice with pics. They have asked for her to refer me back to them. So that is where I am at the moment. Waiting for the referral letter.

I can't help but worry (Google doesn't help) - whether this could be indicative of lupus or vasculitis. I know that worrying does not help at all.

Just wondered what others experience of rashes was and any tips?

[misty14]

Hi cas ax

It's really good that the second Rheumy you saw acknowledges how these illnesses can change over time and he now wants to see you because of these new recurring rashes!. He sounds such a good Rheumy for keeping an open mind and wants to help. A few years ago I had a rash like that up my arm and I was put on Hydroxy which took it away and stopped new ones developing!.

Did he put you on any treatment last time you saw him?. It will be very helpful to show him all your photos of rashes. He might refer you to a dermatologist. Hope you don't wait too long to go back to him. Keep us posted. X

[scscsc in reply to misty14]

HI thanks for that. He didn't prescribe anything last time.

Just had a disappointing call from gp to say referral has been rejected as they have seen me twice they feel they do not need to see me again.

She suggested wait and see what happens with the rash but I've had it for at least 2 months now daily so that doesn't seem like a plan. Also she said private but I don't have the money for that.

I'm seeing gp Friday and I'm going to ask for dermatology referral to see if I can get a sideways diagnosis. But I'm so sad that I'm having to go through all these hoops whilst feeling crappy

[misty14 in reply to scscsc]

Hi scscsc

I'm sorry at your news. I thought it was just a case of getting an appt with second Rheumy. Presumably then in May he discharged you when he should have been more willing to do wait and see. ?.He sounded more open minded. It really can be such a battle to get a diagnosis. Good plan to see if you can go to dermatology. They often diagnose lupus this way!. That's the beauty of a multi-system illness you can attack it from a different angle. Good luck for Friday, don't lose heart as I'm sure you'll make progress and keep us posted. X

[scscsc in reply to misty14]

Thank you - yes he had discharged me but I had thought he was more open minded. I had no idea they could reject a referral like that - with a new symptom...I shall pursue a complaint if I don't get anywhere but I can imagine some folk don't have the energy whilst being ill!!! I'm glad a Derm is able to diagnose lupus...I feel a bit like i'm going mad trying to keep track of all the symptoms etc (and i'm an ex-nurse) - goodness knows how anyone non-medical deals with it all...

[misty14 in reply to scscsc]

Hi scscsc

There tightening up on referrals to save money !. Trick will be not to let them discharge you !. I don't understand how he could!. It's so different being on this side as an ex nurse isn't it as a patient!?. Your in good company on forum though. Good luck for friday. X

[Paul_Howard Partner LUPUS UK]

Hi scscsc ,

If you'd like more information about skin involvement in lupus, we have a booklet that you can read/download at lupusuk.org.uk/wp-content/u....

We also have a blog about coping with itchy rashes which may be of interest - lupusuk.org.uk/coping-with-...

[scscsc in reply to Paul_Howard]

Thanks I'll have a look. It's not itchy tho. I just need to actually get to see a dr now!!

[scscsc]

The top link says 'oops not found'

[Paul_Howard Partner LUPUS UK in reply to scscsc]

Sorry about that. The HealthUnlocked site sometimes changes links when it shortens them. This should work - lupusuk.org.uk/wp-content/u...

[Maureenpearl]

I was getting that type of rash every summer until I started applying factor 50 sun cream on. If you haven't already use this try it.

All the best. 😎

[scscsc in reply to Maureenpearl]

Do you have a diagnosis. My rash appears even before I go outside but sunscreen may be a good idea anyway.

[Maureenpearl in reply to scscsc]

Yes i am diagnosed with Mixed connective tissue disorder (Lupus) with lung damage (Pulmonary Fibrosis). Also photo sensitive

[scscsc]

Hi all

Saw gp this morning. He categorically said my rash is not autoimmune and I need to get it in my head that I do not have a rheumatological disorder. I need to take 4 times the dose of antihistamines and accept that I have a chronic pain condition.

Feel like crying.

[Fennella02 in reply to scscsc]

I'm not surprised you feel so gutted. You need someone on your side who is prepared to fight for you. These conditions can present in very different ways - my antibodies are all negative but I have other features of auto-immune disease so I haven't ever been discharged. I find rheumatology very frustrating and I actually wish that I wasn't tied to them - I think my GP could look after me far better on her own. Is there no way you could consider a private referral as a one-off? Perhaps your GP could run a set of screening blood tests beforehand to keep costs down? My GP is fiercely against going privately but it sounds as though yours thinks that it could be a good idea.

Keep us posted xxx

[scscsc in reply to Fennella02]

Thanks. I had a good cry. Now trying to think of options. I will see the more helpful gp when I can get an appt and see if she will do repeat bloods.

The pharmacist told me categorically not to take the higher dose of antihistamines and was shaking her head when I told her the story. At least I know I'm not mad!!