Help

[reo747]

I wrote on here a few weeks ago. Things are getting worse daily and no one seems to know what’s happening to me.

It started about a month ago. I am going to be 100% honest so if I offend anyone I apologise.

I started feeling unwell like the flu, high temperature and generally feeling ill covid tested 3 times all negative I went for a full STI check up it came back positive for chlamydia and gonorrhoea I was obviously very upset but dealt with it I was given a massive dose of azithromycin 2000mg followed by two days of 500 mg and a 500mg of Cipro.

A few days later my face developed what looked like a rash across the nose and cheeks. I was also getting very flushed at night. My GP sent me for texts at Lupus centre in London. They found my liver function tests were deranged. They were so bad I was taken into hospital. My feet and hands got very hot and swelled up the hospital thought it looked like erythromelalgia but were very unsure The deranged liver results slowly improved and they thought it was down to the antibiotics

I went back to lupus center as my whole body was now being affected by hot tingly feeling My arms and legs are constantly hot my face goes bright red particularly at night Dr Colin Tench thought it was acute onset Erythromelalgia referred me to a dermatologist who also thought that she’s referred me to Dr Michael Lunn the appointment is on August 12th

Sleeping is very difficult And my entire life had come crashing down I’ve been given gabapentin to take at night it offers a little bit of relief I’m taking beta blockers during the day as my heart rate is 110 when resting it used to be 58 I was very fit

Last night I got a call from my Gp a blood test they did found I had a n active herpes type virus she said what it was but I can’t remember it began with C

I’m now just waiting on 12th August

I read that a high dose of steroids 1000mg a day for 5 days can stop Erythromelalgia in it’s tracks I’m constantly telling the Srs about this but they seem unwilling to try I need help

[Spanielmadlady]

I'm really sorry if this sounds harsh but you really need to learn to be patient.sadly there are no quick fixes.if your irritated liver is contributing to you being unwell it wont settle overnight.azathioprine gave me drug induced hepatitis...it took 3 months for my liver to completely recover.

We regularly live with worsening symptoms....sometimes we can ride them out without extra medical help other times we desperately need appointments but just have to keep going until the appointment comes round.

The 12th Aug will soon be here it's only the week after next.

P s my resting heart rate is around 100 and that increases to 140+ when my lungs flare.

[Redfox25]

Reo, I don't have any answers for you as my experience is not very similar to yours but I wanted to say you have my sympathy as it sounds like you are going through an awful time. Stay strong x

[MEGS53]

Hi. You really are having a bad time and I'm sending big hugs and sympathy. Dig deep and hang on in there and please take heed of your Drs, particularly about taking high doses of steroids, which would very probably cause much more harm than good. Best wishes, please let us know how you get on.

[Hoofprints]

Sorry you are having such a hard time. I hope you get answers soon.

Could it be the cytomegalovirus that the doctors mentioned? Maybe they are reluctant to use steroids which might lower your immune system while it is trying to deal with this virus. Perhaps you could ask them then at least you will know.

Can you also ask them if there are any antivirals they can give you to help treat the viral infection? It sounds like your immune system is dealing with an awful lot just now and that must make you feel awful. I hope things turn around for the better soon. Hang on in there.

[Hoofprints]

Other virus beginning with C could be Coxsackie. That too can bring your whole system down, but you do recover. Good luck.

[MEGS53 in reply to Hoofprints]

Cytomegalovirus sounds more likely, but please ask a Dr. As Hoofprints says, it's not advisable to take steroids (high dose or not) when your body's dealing with a virus - or any infection for that matter. Hope things improve soon, you're coping with a lot.

[Paul_Howard Partner LUPUS UK]

Hi reo747 ,

I'm sorry to hear that you have been so unwell. It does sound like your medical team is very attentive and thorough so hopefully you will have a satisfactory diagnosis and treatment regimen soon.

High doses of steroids can suppress the immune system which may be a concern due to the viruses you have mentioned. Your doctors will be carefully weighing up the potential risks against the benefits of any treatment.

[CecilyParsley]

Hi reo I have no advice but just wanted to say that I am so sorry that you are going through such a terrible time. Your body is being ravaged no wonder you feel so ill. I agree with Spanielmadlady it does take time to get a coherent plan when you have so much going on but you have wonderful Doctors and they will decide on the best treatment for you. As someone who took high dose prednisalone for brittle asthma for many years there are some terrible side effects so they are just being cautious. Sending you big Cwtches and the hope of a better tomorrow xx

[LalSD]

Hi Reo, I really hope you get better soon. For what is worth, my daughter's lupus journey started due to a treatment for a serious pneumonia. The reason I mention this, it is because in order to treat a condition (your case its different than ours), it is possible to have other conditions if you are dealing with lupus. But I think over time, your symptoms will ease . It just takes time and patience. Get well soon. Lale