Family fun day getting flu shot 🙄🙄then noticed a probelm ☹️

[weathervane]

I have Sjögrens and my son has lupus profundus , both got our flu jabs today , fun family trip !!! Has anyone had any reactions to the under 65 jab ? Ive just noticed the start of a possible new lesion on my sons arm , he has been on methotrexate since the beginning of September , will this stop it getting worse, if not should i push for him to see dermatologist, next appointment not till September. He has lost quite a bit of tissue on his other arm . Grateful for any advice 🌸🌸

[suzannah16]

I had the under 65 jab and almost immediately got flu symptoms mainly affected my throat and ears also got a temperature. my mother had the over 75 jab and felt really chilly and generally under the weather

[weathervane in reply to suzannah16]

Ooh , suzannah , that’s not good . I hope you and your mum are feeling better now. I have been fine in the past , I think this is a new strain so i hope it won’t cause problems this time. I will top up on vitamin C .

[spzgirl51]

Hello weathervane ,

If you are worried the methotrexate is not controlling your sons symptoms well? Why not contact his lupus consultant to see what they advise about skin lesions? Do they have a patient advice line? My hospitals rheumatology dept does.

Best wishes xx

[weathervane in reply to spzgirl51]

Thanks spzgirl , i have tried to get the rheumys secretary but no answer. He wasn’t given a rheumy nurse number, though i was when I started on rituximab so I might call it if necessary. He is shared care with dermatology so hard to know who to contact , his shoulder is very sore at the moment so i thought the rheumy . If the methotrexate is not working they did mention a steroid infusion. Thanks for your reply xx

[misty14]

Hi weathervane

Sorry you both are suffering after the flu jab. I too had a reaction to it , it's generally flared my CTD giving me strong aches and awful tiredness and I go hot. The strength of these symptoms is improving as I've been allowed to stay on 7.5mg steroids for six months!. It's a tough jab as it has four strains !. It sounds like a coincedence about your son's new lesion and a good idea to seek Consuktant advice. September is too long to wait!. Hope you feel better soon. Xx

[weathervane in reply to misty14]

Hi there misty, I just feel a bit tired and have a sore arm at the moment following jab . I hope you are coping ok with the steroid, I get awful flushs after a steroid injection which last for days , does this happen on 6 month dose ? ☹️. I hadn’t noticed the lesion on my son as it was under his good arm , hes not good at checking himself, so it may have been there a while. His other shoulder is giving him alot of pain at the moment, hes taking naproxen but its not helping much so i was wondering if a steroid injection would help, if i can get the rheumy I will ask . Ooops he is due at dermatology again in January, not September, my bad . Hope you are feeling better now you are on treatment , best wishes xxxx

[misty14 in reply to weathervane]

Hi weathervane

Glad your not suffering too much after the jab!. I'd definitely seek advice about your son before Jan as he's getting symptoms despite the methotrexate!. That should be working by now!. I don't get face flushing only if malar rash cos I'm taking the tablets at 7.5 mg for six months!. The steroid jab is much stronger . I am improving slowly and have found out my strong backache and nausea is my gut as buscopan really helps. Nice to get some progress. All the best to you both. Keep us posted. Xx

[weathervane in reply to misty14]

Thanks misty , he just got a call to go and see gp Monday about his bloods so im a bit worried, ive phoned my rheumy nurse as he is under same consultant as me . He is meant to be starting a new job first week of December, i hope all will be well . Sorry to prattle on , fretting a bit ☹️☹️

[misty14 in reply to weathervane]

So sorry weathervane it's one worry after another so no need to apologise!. It's cruel when your son will be starting a new job soon but your GP phoning could be a blessing in disguise as MTX may not be the right drug for him and it will be changed as you were bothered about these new lesions. Good luck for mon. Fingers tightly crossed and let me know. It's good you have same Consultant too and you can ask the nurses. Take care Xx

[weathervane in reply to misty14]

Thanks misty, you are very supportive, I hope you continue to do well xx

[weathervane in reply to misty14]

Well misty, all they did at gp was to repeat his fbc . The rheumy nurse contacted the consultant who is going to look into injecting his shoulder and will look at new lesion , hopefully that will happen soon , xx

[misty14 in reply to weathervane]

That all sounds very positive weathervane. Do hope he gets the injection soon and good he'll look at the lesion. They usually look at three months worth of blood tests to see if a trend so good GP is repeating his FBc!. Hope your not worrying so much now weathervane and you have a better week. Xx

[weathervane in reply to misty14]

Relief it wasn’t problem with liver function. My son had taken the message and thought it was for something bad , had him worried as well . 🤞🏻For a good week for all of us xxx

[Flueby]

Hi. I am having a signuficant lupus flare up. 5 days after my flu jab. My Rheumatologist said it can trigger it. Hope u feel better soon

[weathervane in reply to Flueby]

Sorry to hear that Flueny , i just had jab yesterday hope no reaction. Look after yourself and rest as much as you can , ive had a really bad flu once whch took months to get over so hope the jab works . Best wishes, feel better soon 🌸🌸🌸

[Poshcards in reply to Flueby]

Yes, I had the over 65's jab, and was really ill for 2 weeks this time, normally, no reaction x

[weathervane in reply to Poshcards]

Hi Posh , my reply last night must not have got posted ! My sisters and in laws had the over 65jab without a problem , it most affect those with autoimmune conditions in some cases . I hope you are feeling better now and it protects you against the flu. 🌸🌸

[overnighthearingloss]

Maybe some doctors are giving out incorrect advice with regards to vaccinations.

Yehuda Shoenfield is a heavyweight in the field so his views should carry some weight.

Attacking Ourselves: Top Doctors Reveal Vaccines Turn Our Immune

greenmedinfo.com/blog/attac...

[weathervane in reply to overnighthearingloss]

Interesting read overnight , thanks you.

[Paul_Howard Partner LUPUS UK in reply to overnighthearingloss]

Hi overnighthearingloss,

The advice of all lupus specialist clinicians is to have the influenza vaccine, unless you have a noted contraindication or have previously experienced a flare due to the vaccine - in which case you should discuss the potential risks and benefits with your consultant.

lupusuk.org.uk/flu-vaccinat...

[overnighthearingloss in reply to Paul_Howard]

Would those options perhaps include homeophropylaxis as an alternative form of protection to having the flu jab?

[Paul_Howard Partner LUPUS UK in reply to overnighthearingloss]

Hi overnighthearingloss ,

Homeoprophylaxis is not recommended as an alternative for conventional vaccines. The Society of Homeopaths have a position statement regarding this;

"The Society of Homeopaths has a clear policy on ‘homeoprophylaxis’ – it does not endorse the use of homeopathic medicines as an alternative to vaccination for the prevention of serious infectious diseases.

The Society recommends that members of the public seek the advice of their GP, and/or relevant Department of Health guidelines, concerning vaccination and protection against disease whilst travelling.

Currently there is no homeopathic alternative to vaccination or anti-malarial drugs which has been proven beyond doubt to be clinically effective. It is therefore unethical for a homeopath to advise a patient against the use of conventional vaccines or anti-malarial drugs.

The Society acknowledges that homeoprophylaxis is a controversial area of homeopathy which differs significantly from usual homeopathic practice and that the current level of scientific evidence on homeoprophylaxis (including historical clinical experience and contemporary research) is insufficient to make definitive claims of efficacy or effectiveness.

There is sufficient research evidence to suggest that homeoprophylaxis may be effective in certain circumstances and the Society therefore supports further rigorous, ethical research to its use.

Vaccination

The Society supports informed decision making in regard to vaccination. We recommend that patients seek advice from their GP, as well as organisations that specialise in providing information about this complex issue, so they can make an informed choice for themselves and their children."

homeopathy-soh.org/about-us...

[weathervane]

Thanks evelinb , will check that out .

[CJT37]

I’ve had Lupus Profundus for 10 years. New discoids appear when I have a flare up usually stress related.

I get the under 65 Flu jab every winter and other than feeling under the weather I don’t believe it causes additional flare ups of the disease.

However I’ve found that my body becomes immune to medications after awhile. So I’m continuously on hydroxychloroquine. But have had years of being on Methotrexate, it stops working, my dermatologist looks at new medications to keep it under control. I’ve had steroids, thalidomide, I’m on Dapsone currently. Unfortunately my Lupus Profundus continues but I’ll try new medications for it to work for a year then it’s back to the drawing board.

I think it’s more dangerous for us not to have the Flu Jab our immune systems are too busy attacking us and won’t work again Flu

[weathervane in reply to CJT37]

Hi there , thanks for your reply 😀. My son was just at dermatologist yesterday , he had a skin infection ( now cleared ) and a bit more pitting of skin so rheumy brought appointment forward. He is pleased with how he responded to methotrexate despite slight set back and was happy to see methotrexate was upped by rheumy 4 weeks ago as it what he would have done . There is no skin discolouration on new pitting. He is also on hydroxy which was reduced to 1 a day .

Im sorry meds are not working so well for you , did you have a reaction or were bloods a problem? Its worrying that this can happen. I have been on rituximab for over 2 years now for Sjögrens and im worried it hasn’t worked so well this time , im not sure if there are different meds for this condition. I just hope medical science will come up with new drug to benefit us . We did get the flu injection, i also worry about low immune system. I hope you are keeping as well as possible and surviving this warm weather , best wishes 🌸

[Montysmum1]

Hi

I am new to the chat and have had lupus profundus for 13 years and get no meds from the doctor. I lost the tissue in my upper arms and ended up getting plastic surgery. The discoids have appeared on my face now and I had to beg at the doctor to see a dermatologist. She gave me protopic gel.....did nothing. Dont know what to do next ?

[weathervane in reply to Montysmum1]

Im so sorry to hear this Montysmum . It took a while for my son to get referred to dermatology and rheumatology, he is under their joint care . He had blood tests , scans and biopsys and they came up with diagnosis of Lupus Profundus. He was then stared on plaquenil and methotrexate, these drugs appear to have halted the discoids progress , he still is very fatigued and very sore at times , he had to leave his job because of this .

I hope this is of help as i can understand your distress, do you think asking for a second opinion would help ? I hope you are able to make some progress as it has made a difference for my son xx

[Montysmum1]

Thank you for your reply. I have gone through the last 10 years with different aches and pains and weird symptoms and the doctors have to idea what to do with me. A dermatologist gave me the diagnosis 13 years ago that I had profundus and nothing happened. When I was covered in a rash for 3 months the doctor just signed me off work....to treatment. It like they do not know what to do ?

I have had more biopsies done because I demanded it and I am waiting on their response this time.

[weathervane]

Good luck , i have Sjögrens and have a great rheumy so i was so relieved that my son was referred to her as well , she does joint clinics with the dermatologist which is a great system. He still has bad pains at times and is taking naproxen, having difficulty getting that under control.

Please let me know how you get on , I really hope you can get started on treatment, its not a common type of Lupus.

Best wishes xxx

[Montysmum1]

Thank you....