Lupus and Chicken Pox

[Cheryse]

Anyone got some info about the above. I have had Shingles twice, and at the moment have chicken pox for the second time since a child, and it is not pleasant. The itching is driving me mad, the pain has multiplied that of my Lupus, or vice versa.

it took a long time for me to be diagnosed. It didn't help that my ex husband was in the Military, so every time i was due for a hospital appointment, he would be posted. So I had to start all over again. It was only when a fantastic GP called Kate Mash at my medical center in Wiltshire sent me to the Lupus Clinic at St Thomas' in London that I was finally diagnosed about 12 years ago.

There needs to be more National awareness (or someone famous) to put the public and many Drs aware. My new local hospital in Tunbridge Wells, Kent appear to still be in the dark about it. It doesn't help that I also have Autonomic Neuropathy, a brain stem lesion that also compromises my immune system. Many Drs have not heard of this either, so double trouble. Doctors do not like it when a patient knows more about there illness than they do. I have been prescribed liquid morphine for the pain my illnesses cause, but whenever I am rushed to hospital, that is all they concentrate on. One of the side affects of my Autonomic Neuropathy is Semi Locked in Syndrome, along with Holmes Aides Pupil, which means my pupils do not respond to a torch being shone in them. My ex husband was told I was dead 3 times, that is how unaware some so called Medical Professionals are.

There needs to be more public awareness of Lupus, a National campaign, TV Documentaries, or someone famous, but in the main more Drs should know more about it.

[ShannonB]

I am sorry you are struggling with this. I don't have any research on this and have never heard this connection myself but I also have SLE diagnosed as a teen and have had chicken pox twice badly, once as a child and again as an adult. When I got it the second time lupus was in remission and I didn't even know you could get chicken pox more than once! Maybe others on this group know if there is a connection. If so I agree it would be useful if more were made awa

[hazelHollingsworth]

I have had both shingles and chickenpox and both times they got me off the steriods the same day untill it was clear. I was told they make it 10 x's worse. it is OUCH OUCH for weeks. good luck my friend hope it soon goes away.xx

[DebbieC]

Sorry you are struggling. Perhaps antihistamine tablets would help with the itching, do check with a Dr or Pharmacist as some types might not be suitable with some medication you may be on. I also found cold tea or dabbing with a used cold tea bag gave a little relief. WitchDocter the witch hazel gel gives a very cooling feel when first applied but not very long lasting.

It's interesting as I have had chickenpox twice, when I was 13 & my late twenties, when my eldest daughter also had it - each time diagnosed by a Dr. My daughter also had it twice in the space of 5 years. I had a skin biopsy in 1998 that gave the diagnosis of Discoid Lupus. Over the years only a couple of tiny spots of discoid & a positive ANA Of 1:80 had a kidney scan which did not show anything.

A Rheumatologist 3 years ago diagnosed Fibromyalgia & put me on Amitriptyline. Last Summer after only week of sun we had, I felt more pain than ever & so tired. GP did more bloods, ANA positive 1:160 Homogenous pattern. DS/DNA negative. Liver function way over normal level ( I rarely drink alcohol) & Kidney function GFR 58 mls/m. Creatinine 104. BP fluctuates a lot form 126/76 - 168/92. Referred me to the same Rheumatologist who ordered extra bloods, nothing really showed apart from vitamin D 41' so low end of adequate level, c3 1.65g/L & C4 0.25g/L. (C4 seems low end of normal range?) The Rheumatologist still said felt it was just Fibromyalgia & signed me off again.

My eldest daughter is 18 & tired all the time & aching muscles & joints & cramp & pins & needles. GP ran basic bloods, nothing showed but refused to do ANA saying she would be too young to have Lupus, didn't consider Fibromyalgia either, as said too young. Daughter had a bout of these symptoms nearly 3 years ago & basic bloods showed nothing then either.

I agree, there really is a lack of knowledge amongst Doctors & many healthcare professionals & the general public of both Lupus & Fibromyalgia. My daughter & I seem to be in Limbo now as are many people who are on this & the Fibromyalgia site.

Do hope you get some relief soon.

[Suzie]

I had chicken pox in my twenties which I caught from my children and have had shingles twice in the last 3 years . Not pleasant but aloe Vera gel is soothing and resting is very important. The problem is being unable to work for at least a week when my employer uses the Bradford scale to monitor sickness. It is a points system and these points do not mean prizes!

For chicken pox Puriton syrup is great for the itching, check with the pharmacist and keep away from pregnant women. I hope you feel better soon.

[Hidden]

The thing about the herpes viruses (inc Chicken pox and shingles) is that once you have them they never go away (just go to ground). So when your immune system is damaged you are more prone to them - as they can invade a weakened system more easily.

If they come back severely, go see your GP and get some anti-viral drugs ( er a course of aciclovir) which should help a lot - so long as you go early in the course of the infection.

Steroids and immune suppressants, MTX etc will make it even more likely that these viruses can make a comeback.

[anxious44]

hi there we live nr t wells my daughter was diagnosed by mike bately who is a rheumy with the trust he made a diagnosis on her first appt. he then was happy to refer her to the adolescent unit at uchl. he used to work at the unit at st Thomas so seems knowledgeable.