Hi,
I need to get a Tdap (tetanus, diphtheria, and whooping cough) vaccine as my daughter just had a baby. To date, I've had no issues
with many COVID vaccines, the flu or shingles, but EPGuy mentioned a concern with Besremi and the flu vaccine and his reaction.
Anyone had any issues with vaccines (no anti covid comments please) while on Besremi?
I was considering getting the vaccine the week after my injection.
Thanks!
Hi, I have had 6 Pfizer vaccines, last one about a month ago. No problems with any of them, slightly sore arm each time. We are all different. I am 73 with PV. Best to you in your decision.
I had no issue with flu vaccines while on Besremi. Doing flu at the same time as pneumonia was not fun. I had the "flu" for 24 hours.
Note I did mage an issue with the TDAP and Medicare. Apparently Medicare considers the tetanus vaccine to not be "medically necessary." They did not pay a penny for the whole TDAP combined vaccine as a result. Was to bust at the time to fight it so I just paid the $156.00 out-of-pocket.
I believe that TDAP is covered by Medicare Part D when given at a pharmacy.
Good info. Medicare has very strange rules.
My adverse reaction is incredibly rare, but it has continued to deteriorate. I'm in very bad shape physically and emotionally.
I am now on a Sjogren's forum, (a different host, the ones here are sparse) it's a most unhappy and hopeless place, by contrast this forum is a nice place to be.
I don't think there is any way to predict such adverse reaction. IFN alone can do it, vax can do it, combined it makes sense is the highest risk. When an autoimmune or any neuro issues seem likely, stopping IFN immediately is critical.
My best guess is to have a full rheumatogical panel before vaxes if on IFN. But some autoimmunes don't show in bloods.
My covid booster went ok, the follow up flu vax didn't. Luckily I got the Shingles vax while on HU.
Sjogren's seems to most often require a propensity to it and then a trigger to release it. My trigger was the vax, a virus can also do it. The propensity likely was biased by the IFN. I've learned that IFN-a, the one we take, is a big element of this evil condition; it's much elevated in Sjogren's. Some of the treatments in trials intentionally target reducing IFN levels. Sjogren's is one of the nastiest autoimmunes, it's way more than just dry eyes.
My husband is incredibly supportive but I feel terrible the burden he has.
At least I suggest not doing the sequence I did, spacing the vaxes 1 week apart. Same time or way more spaced should be better.
For the IFN timing, probably less critical, esp with Bes since its level is fairly constant.
In the Covid vaxes, one can select low or high dose, with likely risk being in proportion. The Pfizer does is 30mcg, Moderna is 50. Moderna does tend to have a stronger useful effect so it's part of the trade off.
For some possible specific thoughts, if in the day or few weeks after the vax:
-If you feel any unusual neuro effects (tingling, numbness, nerve pain, not necessarily where the needle went in)
-Unusual joint pain (I had a never-before pain in my right knee joint minutes after the vax)
-Any weird sensation whole body right after the vax that you never had before
These were my warnings.
If so laying off the IFN for a while might be considered.
These symptoms are not the usual flu like malaise nor allergic reactions that are listed.
I can’t comment on Besremi but am on Pegasys, which is also a form of interferon alfa, and have had Covid, influenza and pneumonia jabs and the Tdap one with no issues.
Best check with your doctor if you have any concerns.
Tdap is not a live vaccine so I would think it would be ok. Most of these drugs just recommend to avoid live vaccines, but your doctor should be able to tell you
The risk of live vaccine is real, but it's a separate risk category:
(In immune compromised) "A live, attenuated vaccine may cause severe or fatal infections as a result of uncontrolled replication of the vaccine virus or bacteria."
cdc.gov/vaccines/pubs/pinkb...
Essentially one can catch the disease the vax is supposed to prevent. But a secondary effect of this, or any, virus infection can cause autoimmune reaction.
--
I suspect Drs will know little of this area since these worst case reactions are so rare, while they are listed on the IFN labels.
Just be really careful. When I was on a really low dose of PEG 22.5, I had the Covid booster and within an hour my whole body was hot and then both knees where extremely in pain to the point I had ice packs on both! I've learned that I'm really sensitive to vaccines especially when on INF. I had the first two Pfizer shots when I wasn't on INF and only had a slight headache. I also had the flu vax years ago and had a bad reaction being on no INF's so I know better than to ever get that vaccine. Both my legs below knees swelled up.......really weird and unusual. Had the tetIf I were you and you know your sensitive to drugs and vaccines......go off the INF for a week during the Vaccines or space out these shots. Just my own experience and thoughts. Kerry
We've discussed before. Interesting you also experienced knee pain after the vax. Suggests this is a red flag.
You were forced off IFN from liver counts, is that right? My numbers were all perfect so it seems that may not predict autoimmune reaction.
Do you currently have any chronic autoimmune condition?
I was on 22.5mcg PEG when I had the 1st pfizer booster shot. The PEG in my opinion definitely had something to do with the painful knee reaction because the previous 2 pfizer shots I had no reaction and was not on PEG. I quit PEG due to high liver enzymes and depression like symptoms. My body did not like this drug even on that low dose. My Mayo MPN specialist took me off of PEG immediately. No, I do not have any autoimmune conditions that I know of. Have a left knee that has osteoarthritis and just had gel injection.
As I mentioned in earlier posts, I had a flu shot in my 40's and was on aspirin only. This flu vax definitely caused a weird reaction as both my legs below the knees became super swollen. Went to ER and had ultra sound and everything else done to figure out what is was. The doctors were baffled and said it couldn't be the flu shot. The only thing I did different was get that shot and was certain I had a bad reaction. This is a shot I'll never get again. Had the tetanus shot last year and had no problems. Perhaps my high platelets & inflammation react with certain vaccines like the flu shot? My immune system I know is very strong.....rarely sick and no covid yet! Perhaps we both have overly strong immune systems! Best to you......Kerry
Mmm. Saturday before last I had my covid booster and on the following Sunday (next day) I had my first pneumococcal vaccine. Ended up with a septic arm, temperature of 39 degrees and all joints very painful. Specialist nurse sorted out some oral antibiotics, nearly needed i.v. antibiotics but managed to swerve that. I am now well Not sure exactly what happened!
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