Ruebella and Lupus

[laura72]

Hi
Does anyone one know if it's safe to have the ruebella vaccine, My daughter is 13 and will due hers shortly?

Also what 'live' vaccines should SLE and DLE suffers avoid?

Hi to all

Laura

:worried:

[Clare.T]

Hello Laura :)


Good question
First as far as I know, people including children, whose lupus is confined to the skin, need have no concerns about vaccines in general, except maybe smallpox, which these days isn't an issue anyway.



However when it's a question of systemic disease, and medicines with immunosuppressive or immune system weakening effects, like Prednisone are being used the considerations are different

Here is a list of vaccinations and their advisability. You'll see that rubella is included in the list of those unsafe for immunocompromised people.



Many vaccines are made with killed bacteria or viruses or else employ a protein or a sugar extracted from a virus or bacterium. These types of vaccines are safe for everyone.

Safest Vaccines (Protein or Sugar)

Diphtheria
Haemophilus influenza B (HIB)
Hepatitis B*
Meningococcus
Pertussis (whooping cough)
Pneumococcus
Tetanus

Safe Vaccines (Killed Bacterium or Virus)

Anthrax (not available to the general public)
Cholera
Hepatitis A
Hepatitis B*
Influenza, injected
Plague
Polio
Rabies
Typhoid

Unsafe for Immunosuppressed People (Attenuated Live Virus)

Influenza, nasal spray (FluMist)+
Measles
Mumps
Rubella (German measles)

Most Unsafe for Immunosuppressed People (Live Bacterium)

BCG (tuberculosis)
Smallpox (not available to the general public)
Varicella (chickenpox)
Yellow fever
*Available in two forms: protein and killed virus.
+Not for use in people with RA or lupus.
Content last updated: 5/2/06




This is from an article about SLE and RA

http://www.usnews.com/usnews/health/bones/rheumatoid_arthritis/ra.treat.vacc.htm

which was written with the help of Johns Hopkins, a leading Hospital and major US Health Information source.

You need to contact your specialist for his opinion, individualised advice, to estimate the risks v the benefits in your daughter's case.

Advice and info given here shouldn't be used to replace medical advice.

Let us know what he says please.


All the best
Clare

[laura72]

Thanks for that, Will make sure she's not given it at school one day, i'm sure you have to give permission anyway.
Thanks again

Laura.
:)

[Raglet]

Laura, please make sure that your decision is based on what her doctor says, not something you read on the net (as Clare herself has already mentioned).

Rubella can do dreadful things to the unborn child eg. blindness, deafness, mental retardation etc) making it particularly important for young women to receive this if at all possible.

Your daughter may not necessarily be immunosupressed, this will depend entirely on what drugs she is currently on. If she does have to miss it on these grounds, then she may well be able to catch up with it at a later stage when she is not immunosupressed.

hth, and good luck with it all

raglet

[laura72]

Hi,
Thanks, No, don't worry i will definately check with her consultant, we go on the 15th May anyway.

Best wishes to all

Laura
x:)

[Clare.T]

Morning Laura :)

Another thought - I didn't know if I had had rubella or not when I was pregnant 30 years ago and my mother said not, despite me being of a generation that got everything going around - but a blood test showed I had already had it.

Cheers
Clare

[jane1]

Hi laura..:overhere:...my daughter and i have been told that they dont do a lot of the injections at school now....no TB anymore..ruebella......depending on the area you live in...hope this helps....jane

[jltntl]

Hi Laura. My 13yo dd was dx Lupus today. I've seen your post re the rubella. I thought they got the rubella as infants. Do they still give this to the teenagers.
I think my daughter's Lupus' symptoms were triggered by the Hep B and Meningococcal immunisations she had last year in year 7. Days after the Hep B - I don't know the dates exactly - I was called to the school to collect her as she was nauseous and she vomitted on the way home. She was cranky and her hair was falling out - which had started to fall out after the 1st jab the year before. Then in May she had the Meningococcal and about 2 weeks later she had vomitting with unconciousness and seizures. Since then her symptoms escalated with eye blurring, migraines, dizzy on standing, eye pain, cold on hot days, etc. etc. So she wont be lining up for any more immunisations. They about to do her school with the cervical cancer... she'll have to take her chances with that one.
Did your daughter have those hep b and men vaccines?

[ping]

You might want to keep in mind too on what meds you're currently on when getting certain vaccines. Prednisone/steroids, some immunosuppresants could keep your body from responding to the vaccines.
I had the Heb B series THREE times and my titer still came out negative.
That was because I did not know that the meds (prednisone and imuran) I was on would effect it and by the time I figured it out, I had already went through the series several times.
It should have been caught by my doc's clinic, but it wasn't. So just let the person GIVING the shot know of your concerns about your meds.

[laura72]

Hi Julia,

I completely sympathise with you about your daughter, she's really had it rough, it's the worst thing to see your kids suffer. And i think it's a horrible age to deal with it, especially when they're getting used to all the other changes in their bodies and starting to explore life independantly.... Now you've got a dx you should be able to move forward....hopefully. My daughter Hannah has 'flared' just recently and is back on steroids, i've kept her on her paquenil. She must have had immunisations as a baby and before pre-school i will have to find out what she has had, but she hasn't had any since about 4yrs old and Lupus started when she was 12ish!

I am having a really hard time coming to terms with this disease, although I'm glad to say Hannah is amazing and copes wonderfully, I don't smother her, but encourage her, it's just when i'm alone i could scream and cry etc, because I hate seeing her in pain and soooo tired. I dream of the past when she ran around carefree and worry about her future, jobs, boyfriends etc, I know we'll get through it but......I still wish for her back to normal.

Sorry to ramble.
How does your daughter feel about it? Does she know anyone else with Lupus? (Hannah doesn't) Does the sun effect her at all?

Hope you get lots from this forum...I have!

Wishing you strength and happiness:wink2:
Laura
UK
Mum of lupie daughter:)

[jltntl]

Hi Laura. I know what you mean....my daughter used to have so much energy...in fact she used to run hotter than others. The sun has always affected her since 5yo. I used to go mad at her for not putting the sunscreen on properly. She would come back from Nippers (surf life saving) with a "burnt" face and I was always surprised how it was gone the next day. She had no other symptoms until the Hep B and then fell in a heap after the Meningococcal vax. I thought a lot of the symptoms were suspiciously like Hashimoto's which I have and had her tested for that and she has that too. Then one day I stumbled across Lupus and realised her red face was the malar rash and had her tested. So now I'm waiting for my ANA result (due this week) as I used to get a discoid rash for years and years. I was told it was discoid eczema. mmm. But I think we will be the lucky ones with only mild Lupus.

I have been thinking of her future ... and discrimination, boyfriends, reluctant prospective husbands etc. (I have in the back of my head my mother-in-law's questioning when I was pregnant - asking if there were any medical conditions in my family. She never really had much of an opinion on anything and so I was taken aback with this - and a little resentful...so I asked her if there was anything on her side!) Now I feel guilty that I have given her this; but I was only dx with autoimmune Hashimoto's in 2005 and am only just getting on top of things and realising connections with other a/i diseases.

My daughter's behaviour has deteriorated and I've wondered if I should explain to the school....but am hesitant to go there.

I asked her if she told her school mates yesterday and she said she told them about her thyroid. She hadn't mentioned the Lupus and she couldn't remember what it was called. I don't think she really has much of an idea about Lupus yet. This morning she asked why she wasn't normal when she took the pills...

How does your daughter cope with it and her friends? Has she been diagnosed for long? Has the medication helped yet with the fatigue?

...Julia

[jltntl]

Hello again Laura.

Our kids get the measles/mumps/ruebella at 12 & 15 months and dd was ok (except for being a hot kid with boundless energy).

At 5yo she got the next lot of MMR and DTPa (triple antigen) again before starting school. It was the following summer that she first got the malar rash.

Coincidence that she gets symptoms in the weeks and months following the injections? I think not now.

I see that she is due MMR again between 10-15 years and also ADT (whatever that one is). I must say I would be very reluctant for her to have anything again any time soon.

Maybe checking to see if they still have immunity to ruebella would be the best step and then maybe she wouldn't need it again. I remember being checked when I was about 30 and I was still immune from my 15 yo immunisation.

[laura72]

Hi Julia,

Ive never heard of Hashimoto... what is it...and I can't believe yourwaiting for your bloods for Lupus, I went to my Doctors yesterday because I feel so down and helpless, but mainly because i ache sooo much my feet are incrediably painful to walk, but it ease's through the day if 'keep going', once i sit for half hour they seize up again, I suffer with my back and wrists, and the tiredness is awful, I have suffered with ache's on and off for years and remember my parents always putting it down to growing pains, my brother and father both have crohns disease and as you know my daughter Hannah has Lupus, but the doctors don't seem to listen when I tell them how I feel. I'm ashamed to admit he has put me on anti-depressants, and i'm reluctant to take them today. i'm going back in 2weeks, do you know what tests your doctor has done? ANA? etc?

Anyway enough of me moaning.... Hannah understands loads about Lupus but doesn't always do what she should, We contacted our LUPUS UK group and they have Lupus days where people like us can raise awarnesss, Hannah was very brave and made a short speech in her assembly to raise awarenss, she had a stand at the school reception with balloons and bookmarks etc, her school has 1400pupils, her friends are good, infact last week she was bad and they could see she was looking ill sitting in the sun (she knows better than that). She creams up everyday and takes her pills without a moan or groan! She pushes herself forward all the time (sometimes too much). She just wants to be normal.

If your daughter wants someone to talk to let me know... Hannah hasn't come on here yet as a young member but she's going to soon, so maybe they could chat that way.

Knowledge is power.. thats what I think..
Thanks for listening again...Hope you here about your bloods soon...I eagerly await them too!!
Take care
Laura
:)

[jltntl]

Hi Laura

Hashimoto's hypothyroidism is another autoimmune disease. I was late diagnosis in 2005 but now I know about Lupus I think I had it first....discoid rash from 1986 onwards until I was pregnant then the Hashi's kicked in and my metabolism started to grind to a slow halt...that was 1994 and only got dx of hypothyroid 11 years later. Funny how once I started on thyroid med then the rash returned. Must not have had enough power behind it to push it out!
Good on your girl to put herself forward like that. Public speaking is difficult enough without laying yourself open like that. I must say I'm a bit concerned about dd "coming out" in this town.
Tonight I gave dd some good softer info on Lupus because she was saying she wasn't interested and she just wanted to be normal. So I said to her that she is a lucky that she has something that can be controlled (I hope) and she needs to stay on top of it so it doesn't slow her down. blah blah.
My dd is also a girl who loves to get up in front of the crowd and get into the public speaking. Maybe the girls can chat via email. My dd went to high school in Chorley, Lancashire and had a ball and was very sad to go home and leave England and her new friends, so I think she would be glad to have another English friend!!
My dd said staying out of the sun "well, that's not going to happen". mmm. It will be hard. I'd better be off...dinner is not happening.
Speak tomorrow.
Oh, I had positive ANA arrive in letterbox! So should get more done I suppose.
...Julia


x

[peonyprincess]

My undestanding is that anyone with an immune system that doesn't work properly should avoid "live" shots. With that being said, I think that here in the states, most vaccines no longer use "live" viruses. I know that there has been alot of discussion about "live" vaccines and Autism, but I do not know if there has been any research done on people with screwed up immune systems.

To be safe, contact your daughter's physician and see what they think. I know childrens shots and boosters can be quite scarey, however, the alternative isn't that great either. You judy have to weigh your options, study the facts and make an informed decision.


Nancy

[jltntl]

Hi Nancy
Would you know if the meningococcal C vaccine is a live virus?? This is the one that, in my opnion, triggered the huge Lupus flare in dd with the seizures, vomitting and fainting followed by migraines, fatigue etc etc.
...Julia

[Clare.T]

Hi Julia

It is not a 'live' vaccine.
See above for the list of vaccines and riskiness

I am sorry about your daughter.




Safest Vaccines (Protein or Sugar)

Diphtheria
Haemophilus influenza B (HIB)
Hepatitis B*
Meningococcus
Pertussis (whooping cough)
Pneumococcus
Tetanus

[Joandublin]

Hi Julia

I googled meningococcal C Vaccine and found this link which says
Meningococcal C vaccine is man-made. It does not contain any “blood products” or “living virus”

http://www.myhamilton.ca/myhamilton/CityandGovernment/HealthandSocialServices/PublicHealth/Immunization/MenC.htm

Hope this helps

Joan:rose: