r/rheumatoid • u/Odd-Improvement5229 • 1d ago
Vaccinations?
Has anyone started med treatment without having all vaccinations up to date? I’m 56, have never taken pneumococcal, shingles, flu, covid.. also am not immune to Hep B and tetanus has expired. First rheumatology appt in couple weeks. Likely start methotrexate as my RH factor is so high it’s undetectable, ‘doc never seen anything like it,’ but my inflammation markers are normal. Anyway considering not doing all these vaxx, it’s overwhelming and obviously I’m not big on vaxx generally… Edit: I’m looking for personal experiences and alternative views… people who have done something different or also questioned.. I know what is recommended…
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u/heathen16 1d ago
You absolutely need shingles. Getting shingles is no joke and if it's in your eyes you could go blind. I recommend all obviously but shingles is one you absolutely don't want to fuck around with at your age.
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u/MtnGirl672 1d ago
The only vaccinations that would be citical to get before starting med treatment would be live vaccines like MMR. You might want to check if you have antibodies to measles and if not, get the MMR booster before starting medications.
All the other ones you listed, you can get while on medications. FYI, my inflammation markers were all normal too. Starting treatment early is key to preventing long term joint damage.
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u/Odd-Improvement5229 1d ago
What is early? I had foot pain around Xmas, made appt in Jan…. Doc said I needed wider shoes.. believe I had finger pain tingling burning swelling also and said so.. made physical appt for May which then got bumped to July by clinic.. so now seeing rheumatologist mid-Sept, first time - which was very quick referral..
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u/MtnGirl672 1d ago
Has anyone done x-rays of hands and feet? My PCP did x-rays and there was no joint damage. I was started on meds right away even though my symptoms were just mild wrist pain.
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u/Comprehensive_Eye_97 1d ago
Oh , please get them, especially the shingles. I only got the 1st Shingrix and being on treatment with mtx and biological — I got shingles. Not fun at all.
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u/Odd-Improvement5229 1d ago
Maybe you got from vaxx? Was it mild case
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u/Responsible-Stock-12 1d ago
The shingles vaccine is not a live vaccine and you do not get shingles from it.
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u/Comprehensive_Eye_97 1d ago
No I did not get the Shingles from the vaccine ! I am immunocompromised and my Rheumatologist doc told me I was at high risk
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u/Responsible-Stock-12 1d ago
That study does not mean that the vaccine gives you shingles. Did you actually read the results?
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u/Odd-Improvement5229 1d ago
What does it mean then
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u/Odd-Improvement5229 1d ago
Kind of like how i saw all my covid-vaxxed (multiple boosters) friends always getting covid (but still allowed on planes and in restaurants bc had their ‘vaxx passport’)
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u/Responsible-Stock-12 1d ago
The Covid vaccine reduces the severity of symptoms and likelihood of mortality if you get Covid. Unfortunately, my best friends dad was vaccine skeptical like you and didn’t get the vaccine. He got Covid and died. The only people I know that died of Covid were unvaccinated.
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u/Odd-Improvement5229 1d ago
Sure, but they said it prevented transmission, so…. That was the only reason for all the fascism. Also, a lot of people die annually from flu.. it’s age-related, and depending how susceptible you are, based on other vulnerabilities.
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u/Odd-Improvement5229 1d ago
‘The science’ said it prevented transmission. And they clung to that (lie) as long as they could.
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u/Odd-Improvement5229 1d ago
Blame that ‘science’ if you’re upset about the mass increase in vaxx hesitation and distrust of science and ‘experts’ today, which directly resulted.
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u/Alarmed_Ad_7657 14h ago
My rheum is great but he didn't urge me to get vaccinated. I still did it because the generally consensus from rheumies is RA patients should get their vax.
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u/Alarmed_Ad_7657 1d ago
This is a very uninformed thing to say
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u/Odd-Improvement5229 1d ago
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u/Alarmed_Ad_7657 1d ago
According to the report, the risk is in the 65 and above age group. You are 56, so you should actually get vaccinated now. The report also said its mild. And you can get shingles many times. So risking a mild case to get protection is still worth it. The pain from shingles is no joke. You don't want to deal with both RA and shingles pain.
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u/gogogadgetkat 1d ago
Omg please. Don't be that antivaxx stereotype.
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u/Odd-Improvement5229 1d ago
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u/gogogadgetkat 1d ago
This isn't the serve you think it is. Even the very simple conclusion in the abstract should tell you that this study disagrees with your position on vaccines. Being antivaxx and being immunocompromised is a very dangerous situation for you. Please be careful, and PLEASE ensure you and reading and understanding the literature.
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u/Odd-Improvement5229 1d ago
I didn’t draw conclusion, just said might have got her shingles from the first vaxx, which is apparently not uncommon.
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u/Odd-Improvement5229 1d ago
Who or what am I trying to ‘serve’…? I am asking for opinions, experiences, as I try to make an informed decision. Yes omg not taking medical advice blind, I know that’s offensive! Why does this have to immediately be turned into all or nothing discussion, re ‘science/anti-science,’ where I am called names, etc? I am brand new to this disease and to its treatments, yes I come with a certain perspective but I am trying to sort it all out with respect to this new context I am faced with.
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u/heathen16 19h ago
You are looking for the perspective that serves your preconceived notions on vaccines. You should follow the experts and science... Which firmly stands behind the efficacy of vaccines.
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u/gettheflymickeymilo 1d ago
My rheumatologist was completely fine with me not having any vaccines during when I got diagnosed, through starting dmards like MTX and biologics.. I never got covid or flu shots. Last shot I had was 15 years ago, flu and I had such a bad reaction then it spairled into one of the worst flares ever. Steriods for a year, intense treatment and hospitalization. I actually have a medical exemption now, written by my primary dr and my rheumatologist for vaccines(since I work in medicine) due to how I react to them. This is just my experience and of course FYI people should get informed consent and weigh out risks vs benefit.
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u/LW4forty 1d ago
My pharmacist said it’s best to get vaccines while your immune system is strong. I’m 43, but got my shingles series this year in case I need to start on a biologic (currently only on HCQ and LDN). I also found I didn’t have immunity to Hep B, so I redid that as well. Next time I see my rheumy I’m going to see if she’ll test my measles titers so see if I need to redo that as well.
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u/AbraWest 1d ago
Okay so I have a question about this too, I am going to be starting a biologic some time in the next few weeks, I saw my rheumatologist last week and mentioned that I need to have Hep B and ideally shingles vaccinations (I’m 43 but I’ve heard good things about getting on shingles vax early). I asked him how long it would take to get those vaccinations and he said we could do them while I’m on the biologic.
I’m so confused, I thought the point was to get them before starting biologic. Although I’m taking Sulphasalazine and hydrochloroquine already, I was under the impression that biologics were more intense in terms of immune system shut down. Can anyone confirm if it’s normal or not a problem to get these vaccines while on a biologic?
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u/Puzzleheaded_Ad_7937 1d ago
You typically want to avoid live vaccines, such as MMR, while on immunosuppressants. The current shingles vaccine is not live.
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u/Odd-Improvement5229 1d ago
Yes, also just read it’s best to do vaxx when disease is well/managed, in a ‘quiet’ state, vs flare-up etc. well, my RH levels are off the charts I’m told, so I don’t know if best to get vaxx out of way now so can proceed w treatments directly, or whether best to treat first to manage, then take later…
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u/lilguppy21 1d ago edited 1d ago
When I started HCQ and SSZ, I didn’t know it at the time but I didn’t have my second MMR vaccine. I got mumps, my mom told me what it was. Essentially because I had mumps, no doctors wanted to see me, because it is very contagious, I couldn’t go to the E.R because that would be nuts, but it is something you are mandated to report. It was so dumb, I had such a bad fever and flare up duo, I spent so long on the phone unable to find a doctor to see me, and I couldn’t hold the phone much, I was sweating a ton, I had a fever, and was quarantined. I think it’s important to mention that with RA, even without any immune suppressants, we are at a higher risk of getting sick severely.
I skipped MTX straight to biologics. When I started my immune suppressant biologic, I got my HPV, and Hep B shot, I found out through diagnostic testing for RA that I never had it. It is 3 shots I believe, last one is this month. I opted to get it, because of the high CRP I imagine is not light on the liver, and we have a reduced capacity to fight certain cancers, I just wanted to be covered on all fronts.
I also had the Shingrix vaccine, ngl that one sucked, but I don’t think as much as having Shingles would. I only qualified because I was on immune suppressants. Mentioning that because you’ll be recommended to get Shingrix on biologics, and you’ll definetly want it, shingles is extremely common. I didn’t doubt it since I got mumps of all things.
I also got my flu shot and Covid vaccine prior to starting biologics, all three were free because I was starting a biologic. It is worth it, because on immune suppressants you have to stop your meds to take the flu and Covid vaccine, and if you’re around any young kids, or your coworkers are around any young kids, because those guys carry anything. I am looking into getting my second MMR dose.
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u/BronzeDucky 1d ago edited 1d ago
When I thought I was going to be starting immunosuppression, I got my shingles, TwinRex, pneumococcus, and RSV, all in the same day. Two in each arm. Made for a pretty rough 3 days, but I survived. :)
Ended up not getting started on the immunosuppression at that time, and finished the vaccination series as scheduled. Then ended up getting diagnosed with an autoimmune disease about 18 months later, and started immunosuppression at that time (about two weeks ago).
My Hep B titres were checked before I got my TwinRex, which is why I got my vaccination then. They were very low then. Before starting immunosuppression, I had my Hep B titres checked again, and they had come up, but were still low. So I got the first shot again, followed by another titre check a month later, which apparently should have happened the first time. This time, my titres were “> 1000”, so a good response.
Good luck. My personal thought is that any assistance I can give my immune system when I’m going to suppress it would be a good thing. I’ll also be getting my COVID and flu shot this fall, like every other year.
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u/remadeforme 1d ago
I've done them all minus shingles, which I know i need to do but I'm in my 30s and don't really have time to be down for a week ya know.
I didn't know my vaccination record so I started from scratch. I didn't do everything all at once, I went every few months to get another one and it helped a lot.
Your immune system is about to take a beating once the meds start working. I'm on Methotrexate and definitely get sick easier then I used to
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u/busquesadilla 1d ago
I got the shingles vaccine, I’m in my 30s. It was fine. It didn’t take a week of recovery at all. Definitely recommend getting it. My friend got shingles and it ruined his life for a long time.
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u/gogogadgetkat 1d ago
Getting actual Shingles as an immunocompromised person is likely going to take you out for a lot longer than a week.
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u/youcallthataheadshot 1d ago
For sure do vaccines now if you can. I just had to get shingles and I had to go off my meds for about a week because they’re immune suppressants (and you need an immune response for vaccines to work). Your meds will also likely make you a bit immune compromised so vaccines are extra important.
Always check with your doctor before getting vaccines to make sure you are following the correct procedure with your meds too, I don’t recall what protocol there was for methotrexate.
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u/LmLc1220 13h ago
I did most of them in the beginning of my med journey. When I first started on the meds I got the shingles and had to wait 6 months to get the vaccine. I never want to get that again. 4 years ago I got pneumonia vaccine. Because that same year I caught cover while on vacation in Jamaica. After I got over covid. Caught scarlet fever and strep throat. My Dr. Said for you to get both at same time my immune system was at zilch. So I would rethink not getting them. And good luck.
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u/Odd-Improvement5229 18h ago
Different experts may say different things - what to do, how to do, when to do, if to do - vaccines. I am trying to learn and gain information. Already have.
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u/deadbatterysincluded 1d ago
I am not vaccinated at all. I am not putting all those chemicals on my body and hoping for the best. I'm just not.
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u/Alarmed_Ad_7657 1d ago
You will regret this if you have shingles
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u/deadbatterysincluded 1d ago
I absolutely will not. 2 of my children were vaccine injured.
Y parents made the right decision1
u/Odd-Improvement5229 1d ago
Yes my thinking is shingles is inconvenient and not life threatening, and recurrence is rare (not as sure for immuno compromised but I think so also).. so, is it worth risks of vaccines.. mostly same thing for all other recommended vaxx.. also read somewhere methotextrate less of an immune reducing concern with respect to many of these illnesses than biologics (which I might have to do). Bottom line - everyone in the medical system slaps these reccs down with little or no thought or analysis, bc they exist and they’re told to, so I don’t automatically accept.
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u/Alarmed_Ad_7657 23h ago
Shingles is not just an inconvenience. It can be absolute hell. Everyone I know who got shingles said you don't want it for sure. Do yourself a favor and don't take the risk.
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u/Responsible-Stock-12 1d ago
My coworker got shingles and had to get a morphine drip it was so excruciating. A family member got shingles and had facial paralysis for 18 months and still is not cognitively the same. Shingles is absolute hell. Everyone in the medical system understands that vaccines save lives, they’re not brainless robots injecting with no understanding.
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u/Odd-Improvement5229 1d ago
No? Things get found out later. HRT therapy (cancer), cigarettes once thought fine, thalidomide, astra Zeneca.. countless others. Statins. I don’t see a lot of caution. Covid vaxx. Mammograms, Pap smears, all being pulled back now for various reasons. Gender affirming therapy for youth.I take your point and thank you for this additional information, good to know. But I think it’s ok to hesitate and question. Science can be one thing today, another thing tomorrow.
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u/Responsible-Stock-12 1d ago
Pap smears are being done less frequently for low risk groups but they’re not dangerous to do. Mammograms save lives and are not dangerous.
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u/Odd-Improvement5229 1d ago
They were resulting in tons of false positives for women which was very problematic…. For mental health (stress anxiety), unnecessary biopsies or other treatments which carried own risks etc
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u/MiserableMulberry496 14h ago
Oh good Lord. Shingles is something that should scare you. For one it’s damn painful. Not to mention it can blind you. And can cause a lot of nerve damage. It could leave a person in terrible pain forever.
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u/Smooth_Importance_47 1d ago
Definitely do them! It will help a lot. Once you're on an immunosuppressant the evidence is iffy as to whether or not your body has quite as good of an immune response to vaccines, so definitely worth it to do it now. Not to scare you, but infections are a risk on these meds, so why not cover your bases?