My Grim anniversary, Vaccine Type and Timing

[EPguy]

With multiple fall vaccines now in use it seems timely to share our experience and advice on the timing of them. This has been discussed briefly in various threads.

I invite comments on the below:

In the past there was just an annual flu shot and its timing was just "sometime in the fall". No other annual shots were specified in this time period. Now there are three, Flu, Covid, and RSV. So how to time them is suddenly important. Many pts already know how but most don't. The lack of overt public guidance on the issue hides its importance leaving much of the public in the dark. Advice is only "same day" or "not same day".

From the info I've gathered, the safest practice is same day, or a minimum of 2 weeks apart. The worst case is ~ 1 week apart. At one week the prior vax has amped the immune system to the max and introducing another vax at this point can overdo it, leading to higher risk of auto immune reaction.

Among the vaxes there are options on the strength, for Covid the Moderna at 50mcg is singif stronger than the Pfizer at 30mcg, both being of equivalent means of action. For flu there are regular and for seniors extra strength. Further there is "Flublok" an extra strength regular one. It's logical that stronger should provide more protection but at higher risk of reactions.

If one is on IFN, this risk is enhanced since IFN alone shares the very rare but severe risk of auto immune reactions.

--

In sum there is a way to take the highest possible risk in vaccine strategy:

Get the 50cg Moderna covid shot, wait a week, and get the powerful Flublok or extra strength senior, and keep taking IFN. This was my history. I got the flu shot Nov 3, 2022 and this is my grim anniversary to my path into aggressive Sjogren's autoimmune. Unfortunately for me all vaxes are contraindicated at least for now.

I feel there should be a black box FDA warning on vaccine timing as there already is for IFN induced auto-immunes. This new need derives from the new annual mutli-shot vax season. No matter how small this risk, it's completely unnecessary. What is actually best timing should be discoverable with proper searching of existing data, but I expect same day or 2+ weeks is close to it.

--

I'm currently fairly functional, a big change from my recent state. My posts of the last year have details of this journey.

I may be having good response to TCM (Chinese Medicine). I have a top TCM Dr assembling the potion and acupunctures. So far I've had only 3 weeks max at a time of decent function, hoping this up is for real.

We should feel fortunate that MPNs have various effective treatments for most pts, Sjogren's has none.

[Cja1956]

I didn’t know this happened to you. So sorry you’re going through this. Thanks so much for sharing your information.

[AnBee]

So glad you have found a good TCM Dr to help you. I have been a TCM Dr for the last 35 years.

[Spanelmad]

As I'm new to MPN and it's mistries Thank you for sharing again. Pleased you've found some alternative help now that's starting to ease your symptoms.

[mhos61]

Thanks for your thoughts on this.

I had my flu vaccine at the pharmacy and had my covid vaccine about four weeks later at the GPs. I purposely planned it this way, as I knew the GPs were offering both shots together. And it’s like you say, we have to make the best decision without much guidance, just gut instinct.

My 97 year old Mum is housebound and is still awaiting both shots. Last year the nurse said it would be wrong to give her both shots together due to her age. I discussed with the surgery recently about my Mum still waiting, and they mentioned they’d do both shots together. I have declined this, and asked for them to be given separately. So, I will definitely make sure it’s more than a week apart.

So sorry for what happened to you, it absolutely stinks. And the worst part is there is no effective treatment for sjogrens, I never knew this until your case, it’s pretty shocking.

It’s early days, but truly hoping the TCM is helping you. Fingers crossed!

Lovely to hear from you!

[EPguy in reply to mhos61]

Sjo is a couple decades behind other autoimmunes in treatments. It has been considered an inconvenience rather that the full body debilitation it really is.

A good thing is the same advances in medicine we see in MPN is at work here. After years of duds there are ~10 new agents in Phase 2, some are very promising. I hope to get on one of them via compassionate use. Sort of like discovering Jak2 etc, they now know better what to target in Sjo. There's one in Ph3 but I think it will be a mostly dud as it uses a discredited approach and Ph2 was just barely ok. This trial is near my house but I don't qualify anyway with my "Cancer" and use of Rux.

[lizzziep]

Hopefully the TCM will help 🙏🏻

[Mishie14]

Thank you for sharing and calling out this important topic. I have ET, taking INF. My doctor advised to get flu and Covid and to separate by at least two weeks and not in same arm. I first got senior flu from which very sore injection site resulted. It was a large patch, swollen, red and very painful for 3 days before starting to feel better. Two weeks and a day later got Moderna Covid which was new as I had only taken Pfizer before. Similar arm reaction but with all over malaise for a weekend and into Monday. spent time feeling no energy and no appetite. I have not signed up for RSV. My husband got that one for first time and had a horrible reaction without having any MPN. I am going to check with my doctor again as I fear taking RSV. As posted on this site frequently, the risk/reward has to be considered when making decisions. There’s a lot of unchartered MPN territory. Stay safe!

[EPguy in reply to Mishie14]

I am one of those who posted on risk/reward. My current thought is the flu vax does not meet the limit. It's not so effective most years, and the risk is rolled every year. Covid I feel is more worth it, but I can't get it anyway. RSV, too new to know.

Hoping newer tech will makes these shots more like measles, an easy yes on risk/benefit.

I wish my Drs had advised on timing, but as I noted this is a new concern starting only in the last two seasons. I got both shots at the same pharmacy, they could easily have warned me if FDA had issued guidance.

[Aldebaran25]

Dear EPguy, your insights are always most welcome and very helpful.

As it happens, six weeks ago I had the covid vaccine (Cominarty Pfizer/Biontech) and nine days later the flu vaccine plus a typhoid booster (I was about to travel to a critical area). Thankfully no out of the ordinary reactions (usual sore arm). I did ponder how long to wait between the two, and thought that a week should be ok, but will follow your indication from now on. At least two weeks. You are right that there is no point in running a risk if unnecessary.

I have been on Pegasys for over a year with good haematologic control, but having a history of cutaneous sarcoidosis, I try to keep argus-eyed! Your experience, which you kindly shared with us, is certainly a lesson.

You are right in saying that some chronic conditions are so overlooked compared to MPNs; as for Sjogren's, it is the same for sarcoidosis. I hope the TCM is of great support to you and that you will be able to give us positive news in the future.

[EPguy in reply to Aldebaran25]

A quick search on sarcoidosis has this result (among many):

"Symptoms vary, depending on the organs affected.

Sarcoidosis often goes away on its own. Minimal treatment is needed in most cases. For some, it may last for years and lead to organ damage."

No doubt you don't have the one that goes away. What troubles is the condition causing you? I see it shares with Sjo the lung risk.

Glad to be of help in teaching us to be watching for new or more autoimmunes. Another lesson I learned is to not think about Dr's reaction if I choose to hold the IFN upon a suspicious event, stop first and ask later. I suggest to discuss this plan with Dr before any event happens.

If I get thru a month + of being functional I will post on it.

[Aldebaran25 in reply to EPguy]

You are right about the lung risk for sarcoidosis and I did not know that it is the same for Sjogren's. When I was diagnosed with the cutaneous sarcoid (through biopsies and classed as granulomatous non-caseating dermatitis) ), I also had the lungs (Xray plus function test), heart (conventional ecg and echocardiogram) and eyes checked. Thankfully only the skin seems to be affected. In my case, it is definitely connected with the PV.

The skin sarcoidosis started about nine months after the PV diagnosis. A few innocent looking bumps that , over the following year, appeared in various places and became more numerous, bigger and more inflamed. Eventually a large part of my back was covered. At that point I was not taking any drug treatment for the PV (just aspirin and venesections). The dermatitis was high grade and so inflamed that I was prescribed oral corticosteroids for a total of seven weeks, clearing it only temporarily, as it all came back after stopping the oral treatment. I then resorted to corticosteroid creams to try and control it (partial success).

Interestingly, concomitantly with the worsening skin condition was the gradual increase in WBCs values (neutrophils in particular) to a max of 17.6. This induced me to go on hydroxycarbamide which worked to lower leukocytes and erythrocytes, but also partially controlled the skin sarcoidosis. This had been predicted by a dermatologist I had consulted who specialises in skin conditions connected with haematological conditions.

After 18 months on hydroxycarbamide, we started the gradual switch to Pegasys. A very gradual process indeed, which took six months.

Finally, since March, I am on Pegasys alone. So far, the skin sarcoidosis has not raised its head again and I would describe it as very low grade. As you know, I am very vigilant and I thank you for the care you express in stressing the importance of being very cautious, discontinuing Pegasys without delay should there be any sign of possible sarcoid resurgence.

People die of sarcoidosis, rarely, but it can happen. More commonly, its chronic form can make life a nightmare. I am aware of that and truly want to avoid having to deal with not one but two rare, debilitating and poorly understood conditions.

I admire your rational thinking and your discipline in your analyses and I sincerely hope that you are on the way to keeping your Sjogren's under control.

Sorry for the lengthy post. It is actually very useful for me to retrace all this!

[Exeter21]

I have passed on all of them this time . Too risky with all this guesswork for me . We are becoming Guinea pigs & lots are worse off after them 👌

[EPguy in reply to Exeter21]

I generally would like to be eligible for them. But I agree at least the FDA, NHS etc should issue fact based guidance on timing so we don't have to guess.

[KLCTJC]

I had my flu shot and I am on Besremi and other than a sore arm I did ok. I have different feelings on Covid Booster as the last one I took before I was on Besremi seemed to flare my diseases. This advice is really great. As I think spreading stuff out is important especially if sensitive. EP guy, hope all is well!!!! Good to hear from you!

[hunter5582]

I definitely agree about spacing out the vaccine, preferably by at least two weeks. I made the mistake of getting the flu and pneumonia vaccine at the same time last year. Big mistake!. Both arms hurt like the dickens and it knocked me out for 24 hours. i felt like I had the flu.

There are three flu vaccines approved for the 65+ set in the USA. Fluzone, Flublok, and Fluad. Fluzone for 65+ is just 4X the regular vaccine dose. Flublok has 3X the active ingredients. Fluad contains an an adjuvant, an ingredient added to a vaccine that helps create a stronger immune response to vaccination. I opted for the Fluad this year. No particular adverse reaction this time.

I agree that greater care should be taken with possible adverse effects related to vaccines in vulnerable populations. Ensuring that we space them out is just logical and prudent, particularly is you have an altered immune response. The convenience of doing them together is just not worth the risk.

TCM can most certainly work. I regularly use Dit Da Jow for bruises and joint pain. We made it ourselves in my Gung Fu / Qigong class. My sifu is also a Chinese Herbalist. Acupuncture and the related similar treatments can definitely help for some things. The important thing to remember with anything you are putting into your body is that if something is biologically active enough to help you, it can also hurt you and interact with things. Most doctors are not familiar with many TCM interventions. I consult with an Integrative/Functional Medicine doctor for that reason.

You have certainly been through the mill in the last year. I hope you find the current interventions will help in the long-term.

[EPguy in reply to hunter5582]

I think Flublok at 3x is available to all ages. I got it at age 63.

The adjuvant based types are called out specifically in some of the adverse reports. But as with all these, severe autoimmune reactions remain very rare.

As you note "same day" is likely riskier than many weeks. If there is a signif added risk for autoimmunes from same-day we are going to find out soon enough since a very many are getting these. This is a phase 4 experiment ongoing.

I saw an integrative med Dr last Apr. They are not all created equal, he Rx for me sub-lingual Glutathione. Horrible reaction that stepped up my disease. He even suggested IV gluta, most likely that would have ended my misery. They just want to sell bottles. I'm now intolerant of any gluta variant incl NAC. No doubt you have one more like my TCM, well targeted treatment just for you

[Manouche]

Hi EPguy,

It’s nice to hear you’re getting better.

« The worst case is ~ 1 week apart« 

Do you have any data to backup your claim, besides anecdotal evidence ?

[EPguy in reply to Manouche]

None at all except my complex sequence with n=1. I had an immediate and way-not-right reaction that wasn't allergic or any other normal event.

But deep searching does find this theme. this should not require deep searching. FDA should order this research. And it is intuitively reasonable at some point after the shot, a certain part of the immune response is maximum. Is that 1 week, 1 day, etc?

One indirectly related item is the min spacing for early Covid shots was 3 weeks. So there is some basis for min spacing whether that is for best effect, lowest risk, not sure .

[WRLM]

I appreciate this post, EPguy. I’m starting a clinical trial for IFN (assuming I’m accepted) and have madly been getting my vaccines done first because I recalled your story. I have been wondering how I’ll approach this situation next year when I’m on Besremi, so this was very helpful. Thank you!

Also really happy to hear you’re feeling a bit better and that TCM may help. Fingers and toes crossed for you!

[Planti]

Good to hear from you, and I am sorry to know the reason but I thought it might be that. I dearly hope that your temporary relief becomes longstanding.

Thank you for the suggestion. I never opt to get both flu and covid vaccines close together. This time the regular flu shot (the seniors versions are not available where I am) has given me a swollen, sore and blotchy red area which is unusual.

I have been having flu shots for many years as I worked in hospitals and I can't recall such a reaction. It has lasted 4 days now. I will not get the covid shot for perhaps 4 weeks as I usually am fluey for several days with a very swollen arm. I am on INF but about to take a breather.

Thank you for thinking of us all as you do. Best wishes.

[EPguy in reply to Planti]

You may have the best approach, if there are concerns, hold the IFN thru the vax season and monitor CBC. If counts are controlled there is normally plenty of margin with IFN. Would be interesting to hear Dr's opinion.

4 weeks should be nicely conservative. Hoping for some real data someday. Problem last year was the high publicity that it was going to be a real bad flu season, authorities implied we should rush.

[Planti in reply to EPguy]

I had another BMB in September as we can't get allele burden done here with ET. It showed normal marrow in contrast to typical ET marrow when last done shortly after diagnosis. In light of CHR for 2.5 years and that we caught my MPN early she said I could go off of INFa for a time and be monitored. It is tolerable but makes me very fatigued and might be the cause of some of my muscle aches.

Arm less sore today. Good to 'hear your voice'.

[EPguy in reply to Planti]

So your marrow histology has normalized. That is not so common on IFN from my recollection, esp so rapidly, but is great news. I recall it's not necessarily correlated to VAF reductions, and as always less is better but the implications of either are still under study.

I had regular malaise on IFN which is a flavor of fatigue. In hindsight I believe it was a signal of too high a dose. Maybe if you don't go off entirely you could discuss tapering the dose, might help with the fatigue and reduce any risks.

I was quite ready for tapering when it blew up.

[Planti in reply to EPguy]

Yeah, I wonder and have always supposed (as a prescribing physician) that side effects might mean that a person is somehow seeing a higher dose than the "standard patient" (whoever that is?).

Malaise is something I also feel, just that something is not right, like my body is talking about how it feels all the time rather than me just living.

I am a bit hesitant to stay off for long though and may try to get on 30ug after I see if coming off entirely actually does make me feel better or I need my head examined.

[EPguy in reply to Planti]

My evidence for a best dose was during my titration. At 70-100mcg (Besremi dosing) I felt good and well in CHR. But at 140, my steady Rx for many months, I felt not so good. Dr wanted to go to 200, but low Lymphs forced the limit.

I have a post with a picture of our camper van ~May 2022, it tells the story of Dr unhappiness with my temp dose reduction. I think if I'd stayed at 70 I might have slipped past Sjogren's. I actually needed only 50-70 for just enough CHR based on titration numbers.

So you might have a same idea, some min dose to just hold CHR.

[Planti in reply to EPguy]

There are so many 'if/onlies' in medicine and I guess in life too.

Did you see the video posted by Monarch with the experts talking about MPNs. Lower doses of INFa seemed to be a suggestion. At least that was my take from the first run through. Though from new study in Canada it seems as though they are upping Besremi dose fairly quickly. People need to take what their body is telling them, perhaps there would not be so many 'drop outs' in the studies.

Just holding CHR was all I could tolerate. And the doc was listening.

[EPguy in reply to Planti]

I have a big if only anniversary coming up in Jan.

The debate on dose aggressiveness is familiar. My Dr felt pounding it hard as possible was the best way to get the VAF down. Gentle would not get the same long term effect he felt. In my opinion whether that's correct is 2ndary to controlling risk that our bodies are (maybe discreetly) informing us. I'd gladly trade some VAF points to stay safe.

Possibly unfortunately I tolerated all doses perfectly per the CMP numbers (CBC/CMPs couldn't even tell I was on meds nor had MPN, similar on Rux), so that limiting feedback didn't happen. My 1/million ordeal I hope is helping to weigh these ideas.

Feb 2022 (my IFN start date) is a real long time ago in MPN experience with IFN. Both PEG and Bes are now common therapies and getting a large phase 4 trial among all of us whereby these dosing/risk answers will come out.

I'm familiar with that fast titration trial on Bes. My opinion, what are they thinking? I think some arms have it starting at 250! See right here how many get by and tolerate just low doses.

[Solyesh]

So glad to hear that you have found a good TCM Dr - hope the good days continue!

[ritaandscooter1]

Thanks for sharing your experience with vaccines. This will no doubt help others navigate this confusing time of year for vaccines especially since there are multiple ones suggested. I believe there is a strong reaction when one is on an IFN as I've experienced first hand. My first shot of Pfizer had no reactions and I was not on Pegasy's yet. My booster shot was taken while being on Pegasy's. I had a horrible reaction and could hardly walk from the swelling and pain in my knees. It was pretty horrible. As I've discussed earlier, I'll never get a flu shot again. This was 15 years ago and was not on any INF or other medicines and both my legs swelled up below the knees. Weird how my vaccine reactions go to my knees and legs!

Somehow I still have not contracted Covid as of yet!! Strangely I' rarely ever get sick with the cold or flu......maybe it's my high WBC's. I do not plan to get any vaccines from here on out as my individual experience has not been good. Timing of vaccines is important but so is making a calculated decision based on reliable information/experience with possible reactions between INF or other treatments and a vaccine. Perhaps some of us should not being getting any of these vaccines based on their own experience.

Thanks again for sharing your journey and I wish you the very best outcomes. Kerry

[EPguy in reply to ritaandscooter1]

I recall your trouble with the flu vax. I got a short lasting painful right knee joint just after. Most strange for me and a foreshadow of the coming horror show.

IFN can actually potentiate auto immunes in the right conditions, at least the natural internal sort is a known bad actor. Some auto immune treatments specifically propose reducing IFN-1, the sort we take. Must be when conditions align IFN fuels the fire, I can attest to that.

[Hopetohelp]

Thank you so much for explaining that to us in detail. I am sure it will help a lot of us to take sensible precautions next time.

[Elizka]

Thank you for sharing this valuable information. I never got two vaccines at the same time or advised my children to do so. I felt that one vaccine at a time was best to give your immune system time to deal with it. After you shared your experience, I did space out my recent Covid booster with my Besremi injection a full 14 days. I'm hesitant to get the flu shot after hearing what happened to you (doesn't meet my risk/rewards), but I will probably get RSV as I now have a grand baby, Shingles was an easy yes. I haven't decided on Pneumonia.