Flu Vaccine

[Middlesista]

I understand there is some conflicting thought on the Flu Vaccine. It was suggested to me to have an "Xtra strength" vaccine and I was wondering if anyone has ever heard of this?

[drz]

They have given me the vaccine for "high risk" cases when there is more than one choice.

[Middlesista]

They have given me the vaccine for "high risk" cases when there is more than one choice.

So the higher potency dose - were you on meds such as prednisone or MTX at the time and did you have any problems with the higher dose drz?

[Alias]

The higher dose is designed for people at least 65 years old, supposedly because they need greater protection due to weakening of the immune system associated with aging. My doctor has not mentioned or recommended it, so I have stuck with the regular dose. I already got mine this year, but I intend to ask my doc about it for future reference.

[LisaD1]

I'm on prednisone 5 mg and got the high dose flu shot sept 1 - no side effects at all for me.

Correction: It is not "high dose" - actually it is greater coverage - 4 strains instead of three I was told by pharmacicst.

[Alias]

The Fluzone high dose formula, which is what it is called on their website, contains four times the amount of antigen than the regular formula. (Lisa, perhaps we're not talking about the same thing?) I happened to have an appointment with my GP today. She said she does not think it's indicated for younger people (under 65) including and perhaps especially those who are immune compromised. It triggers a stronger immune response than the regular formula, which is not necessarily something we want, right? She also mentioned that there is a higher incidence of side effects with the high dose formula. I'm guessing that if you're not 65, you would need a doctor's order to get it anyway, so you'd have a chance to discuss it and how it would affect your particular situation.

[LisaD1]

The Fluzone high dose formula, which is what it is called on their website, contains four times the amount of antigen than the regular formula. (Lisa, perhaps we're not talking about the same thing?) I happened to have an appointment with my GP today. She said she does not think it's indicated for younger people (under 65) including and perhaps especially those who are immune compromised. It triggers a stronger immune response than the regular formula, which is not necessarily something we want, right? She also mentioned that there is a higher incidence of side effects with the high dose formula. I'm guessing that if you're not 65, you would need a doctor's order to get it anyway, so you'd have a chance to discuss it and how it would affect your particular situation.

oh thanks I must have misunderstood -
it is 4 times the antigen not 4 strains of flu. Or maybe my pharmacist was sloppy in describing it......I'm over 65 and I don't think 5 mg prednisone is considered immuno compromised though. In any case I survived! On reflection I felt very tired the next day but otherwise ok. I should have googled it first before just saying yes.

[Alias]

No, sounds like you're good. My doc said she would still recommend it if I was 65, depending on the level of immuno-suppresion I am dealing with then. I got the regular dose, and as usual no side effects, except this time the pharmacist hit a little blood vessel and I had a golf ball sized bruise and quite a lot of soreness for at least a week!

[LisaD1]

No, sounds like you're good. My doc said she would still recommend it if I was 65, depending on the level of immuno-suppresion I am dealing with then. I got the regular dose, and as usual no side effects, except this time the pharmacist hit a little blood vessel and I had a golf ball sized bruise and quite a lot of soreness for at least a week!

wow! how about the shingles vaccine? I didn't get it because of the prednisone 5 mg - it's a live vaccine I was told. I wonder if 5 mg is ok for the shingles vaccine? I'll ask the rhum next week.

[Alias]

There have been some sort of heated threads on here about vaccines in general. All I can say is I follow the advice of my doctors who know my particular circumstances. I was told to get the shingles vaccine as soon as I was below 20 mg of prednisone, so I did. In general it's recommended for people age 60 and over, but I got an order to have it at age 58 because my rheumatologist recommended it.

[LisaD1]

great news because I have been worried about shingles. I'll ask my rhum next week to see what he says. did you have any reaction? thanks for the discussion.

[Alias]

No. Since diagnosis I have had the flu vaccine, the pneumovax, and the shingles vax, all on the schedule prescribed by the rheumatologist. The schedule has to do with your level of other meds, etc. You may have individual circumstances that would cause your doc to recommend for or against a vaccine.

[drz]

My doctors asked me if I had any negative reaction to flu shots in the past. I haven't. But if I have had then they would advise me to skip it as the flu shots tend to be lot less effective with older people but they are also the ones most at risk from dying from the flu. So far the risk benefit ratio generally favors me getting the flu shot but I ask my doctors each time. The odds of the flu shot helping me are low but the risks of having a serous reaction to it are thought to be even lower and the odds of having problems from the flu are thought to be rather high so I expect I will get it next week again.

Some times they guess wrong and put in the wrong strains into the vaccine and then it doesn't do much good. That has happened a couple times in recent years.

[darl-p]

During a recent hospital stay for DVT I was given the high dose flu vaccine and was offered the shingles vaccine, but I had already had it. I am on 5 mg Prednisone
and 50 mg Imuran. Neither seemed to be a concern.

[Alias]

There seem to be a lot of "experts" on vaccines. I am not one of them. I didn't think this forum was supposed to be about giving overt medical advice, but rather sharing experiences and offering support.

I tend to follow the advice of my doctors, but try to ask educated questions of them to make sure things are going in the right direction. I got the vaccines my physicians recommended and have not had any problems.

Draw your own conclusions from what you read and the qualified medical advice you receive. This illness has different features for different patients.

Also, every patient has unique preexisting issues that could influence a decision regarding vaccines or other treatment.

[gilders]

As far as the should we shouldn't we get the flu jab debate goes, I'm of the thinking that it must do more good than harm. The reason being, the NHS would not encourage their own staff to have the vaccine (at the NHS expense). It would mean the NHS are spending a lot of money to make their work force sick and cause themselves a massive headache in sick pay costs and managing cover at a time when they are already short staffed.
Plus the NHS pays for a huge amount of vaccines for the elderly and other groups at risk.

I am always advised to have my flu shot 2 weeks before my next Rituximab infusion. This is the point when my RTX "levels" will be at there lowest, whilst still giving my immune system a 2 week window to make antibodies.
I need a Hepatitis B vaccine course for dialysis and transplant. I was told today that I should follow a similar regeigm as the flu jab, but if the dialysis/transplant team want it to be 100% effective, I should wait 6 months after my last RTX infusion (pedicted to be Jan 2017 if no flare).

[Gab122]

I happened to have an appointment with my GP today. She said she does not think it's indicated for younger people (under 65) including and perhaps especially those who are immune compromised. It triggers a stronger immune response than the regular formula, which is not necessarily something we want, right?

Tom, Do you know... If the high dose is not for the immune suppressed.... Might the lower dose not be for the immune suppressed too? I had 2 ritux infusions in Aug (8th and 25th) and my next is Dec 13. I was on 60 mg pred and as of 2 weeks ago I am on 40 mg now. So I think i'm considered immune suppressed.

I did talk with my Primary care Provider a week ago about a flu shot and she thought it didn't make much sense since I don't have B cells. Which I didn't fully understand what that meant. Can anyone explain that to me? Our conversation moved on and I didn't get a chance to ask her. She later suggested I wait until early Oct. Can't recall for sure but I think she thought i'd have more immune system function by then.... and so it would do me good. Does the Flu vac not work if you don't have B cells?

[Gab122]

I am always advised to have my flu shot 2 weeks before my next Rituximab infusion. This is the point when my RTX "levels" will be at there lowest, whilst still giving my immune system a 2 week window to make antibodies.

Gilders, Can you explain more about this 2 week window before your next ritux.... when you are to get the flu shot? If you are making antibodies during that time - are they wiped out w/ the next ritux infusion? Please see my post above this one also - in case you can help w/ that question too.

[Alysia]

I found the thread I was talking about: here on page 2, please read marta's posts:

http://www.wegeners-granulomatosis.com/forum/medication/3513-pneumonia-vaccine-who-gets-2.html


P.s. alaskatom, hopefully each one of us is an expert for his own case :)

[Alias]

I think that's right, Alysia: Know the particular features of your illness and make decisions with your trusted health care providers accordingly, but don't assume that your decisions are right for others.

[Gab122]

I found the thread I was talking about: here on page 2, please read marta's posts:

http://www.wegeners-granulomatosis.com/forum/medication/3513-pneumonia-vaccine-who-gets-2.html


P.s. alaskatom, hopefully each one of us is an expert for his own case :)

Thank you Alycia for the link to the previous thread about flu vaccines. I read the whole thing!!!

I still am not sure if I'll get the vaccine or not. Or if it's useful for me since in B cell depleted. I think Anne was right when she said (paraphrasing) we had to decide which we thought was worse for us a vaccine reaction/flare or getting the flu or pneumonia.

Some of you have spoken about Ritux's compounded ineffectiveness of treatment (after repeated treatment) for flares. I really don't know anything about that. Has there been studies showing that ritux is less effective with repeated use? Can any of you address that for me?

For those of you who feel like a flare happened after a vaccine, how do you know it was related to the vaccine?

This may be an ignorant question but why is it bad to stimulate our immune system with a vaccine while the immune system is depleted. Does it cause ANCA to increase?

Last question - if I get a vaccine in Oct or Nov, and then get a ritux infusion in mid Dec, does that wipe out any benefit to getting the flu vaccine?

Thx
Gab

[gilders]

Gilders, Can you explain more about this 2 week window before your next ritux.... when you are to get the flu shot? If you are making antibodies during that time - are they wiped out w/ the next ritux infusion? Please see my post above this one also - in case you can help w/ that question too.

Hi Gab, the converstion wasn't very technical, but was explained that the flu jab given while you have a large dose of RTX in your body would not be very effective. The reason being (without getting in to details of B cells, etc) that your immune system is so suppressed that it wouldn't create enough antibodies against the flu virus. Therefore the vaccine needs to be given when you have the least amount of RTX in you. This would be the day before your next dose of RTX, but obviously your body would not be able to produced enough antibodies the day before your next infusion. That's where the 2 week window comes in - the lowest amount of RTX in your body, but still enough time to create antibodies.
The specialist did not say that when I had the next RTX infusion that it would wipe out my antibodies. I suspect that it wouldn't, otherwise there would be no point in me having the flu jab and he wants me to have it.
I haven't timed my flu jab well this year. I am due my next RTX infusion at the end of Jan'17, so will get the flu jab in the middle of Jan'17, which is a little later than ideal.
Ideally vaccines should be given 6 months after your last infusion, but if that's not possible due to frequency of infusions, then 2 weeks before an infusion is the best time.

[Gab122]

Thank you Gilders!
~ Gab

[Alysia]

Thank you Alycia for the link to the previous thread about flu vaccines. I read the whole thing!!!

I still am not sure if I'll get the vaccine or not. Or if it's useful for me since in B cell depleted. I think Anne was right when she said (paraphrasing) we had to decide which we thought was worse for us a vaccine reaction/flare or getting the flu or pneumonia.

Some of you have spoken about Ritux's compounded ineffectiveness of treatment (after repeated treatment) for flares. I really don't know anything about that. Has there been studies showing that ritux is less effective with repeated use? Can any of you address that for me?

For those of you who feel like a flare happened after a vaccine, how do you know it was related to the vaccine?

This may be an ignorant question but why is it bad to stimulate our immune system with a vaccine while the immune system is depleted. Does it cause ANCA to increase?

Last question - if I get a vaccine in Oct or Nov, and then get a ritux infusion in mid Dec, does that wipe out any benefit to getting the flu vaccine?

Thx
Gab

Good questions...

I have only practical suggestions...

maybe you can try to ask them on the thread that I attached with quotes of those who wrote there...

Thats about vaccins.

You also ask about the possibility of reduced effectivity of rtx, a subject that came on Sam's thread. We can try a new thread asking about this.........

[vdub]

For those of you who feel like a flare happened after a vaccine, how do you know it was related to the vaccine?
Be careful here, guys. Enough has been said in previous posts about this subject. Please keep it civil.


There seem to be a lot of "experts" on vaccines.
You are correct, Tom. No one on this forum is qualified to give expert opinion on anything medically related to wegs. I'm pretty certain no one here is a doctor. All we can do is offer our own personal experiences. Even suspicions of something causing a particular issue or not is just that, a suspicion. Without proof or credible research from a credible source we need to keep it off the forum.

On edit: I'm thinking of closing this thread. Not because anyone has said anything wrong, but because so much has been dedicated to this topic in the past and there's a lot of potential for the thread to get out of hand. I'll keep it open for now and see where it goes. Nobody should be offended if I close it, though. This is such a hot topic that we need to keep an eye on it very closely.

[Gab122]

Vdub, I really meant no ill will in my post. I am a total newbie - just dx on 8/1/16. I have not gotten to remission yet and certainly not flared yet. So I am making these complicated vaccine decisions for the first time. I am not offended if you close the thread but apologize if my words were too ambiguous to see my true intent which was to understand how someone knows what causes a flare. I haven't lived thru that yet. I don't mean to offend anyone. Sorry if I did! Guess I need more emojis to convey intent. 😏😜 I feel anxious to make the right decision about vaccines and make it quickly. I'm on high pred and had a kidney biopsy this past week. Awaiting results. My stress probably leaked into my post. I'll be more mindful going forward. 👍

[vdub]

Your words were just fine... No one was offended. We have been down the vaccine trail so many times, I was just giving a word of caution -- not specifically to you, but to the group as a whole. You did nothing wrong... Carry on! :-)

[Alysia]

Sorry for being a criminal... I was not aware that this is a hot issue... in the thread that I attached the discussion was peaceful... it was in 2013... in retrospect, I think it was hot in the months after my sweetie passed, in which I only read the titles.... anyway thanks vdub for keeping the forum safe and peaceful. We sure need it.

[vdub]

Sorry for being a criminal...
Yeah, you're certainly a criminal, Alysia... I'm sure you are on the Interpol most wanted list. :biggrin1:

[Alysia]

Yeah, you're certainly a criminal, Alysia... I'm sure you are on the Interpol most wanted list. :biggrin1:


Oh my... you caught me....

2500

mmmmm ... what can I say ?

2501

[Lilly]

My PCP Dr. advised me to get the pnumococcyl flu vaccine....or pneumonia vaccine. I have received the flu vaccine each year, and this year I got both of the above. I just go along with his advice, share it with my other doctors. :-)

[Gab122]

Thanks for the chuckle Alycia! [emoji23][emoji23][emoji23][emoji106]

[Gab122]

So I've decided to follow my dr's recommendations since I see the merit of BOTH sides of this debate.

For those interested, or wanting to see another doctors opinion, this is the response I got from my MGH nephrology infusion center:

"We definitely recommend receiving both the pneumonia and flu vaccines, and in fact both Dr.Niles and Dr.Cortazar feel strongly about patients receiving them. Because of your treatment plan, the rituxan infusions, you are immunocompromised and therefore are at a higher risk of being infected with pneumonia and influenza. While your B cells are depleted, you still retain your T cells, another type of lymphocyte. The immunity acquired from your previous vaccinations therefore is still active. As for your question regarding treatment with rituxan, it is not used as a last chance treatment and does not become less effective with repeated use. We have patients who have been on this treatment for years with no flares and some who have not needed more infusions because of its efficacy. I hope this helps and please let us know if you have any more questions."

In a subsequent message they went on to say I Shd get the flu vaccine anytime but regarding the pneumonia vaccine they stated:
"We would recommend getting it when you are on 10 or 15 mg of prednisone and off of the cyclophosphamide for a couple of weeks."

(I'm not on cyclo)

I've decided to get vaccinated but like I said, I understand why some of you choose not to go that route.

[Alias]

I've not been on RTX (mtx and pred so far) but the advice you got regarding vaccinations is completely consistent with the advice I got, and followed, from my docs.