Immunology has reported I have low antibodies to pneumococcus and instructed me to have the pneumovax vaccine, so am booked to do so on Saturday at my surgery. In 4 weeks, immunology will test to see if I've made a response to the vaccine. last time I had the flu vaccine I didn't tolerate it v well (got flu-like symptoms & a flare of one-sided sinusitis + osteomyelitis of the upper jaw bone associated with that sinus). Am ok about having this vaccine on Saturday...I know I need to do this...but am interested how others have coped with it...especially others on mycophenolate cellcept (I'm on 1000mg daily)
How did you tolerate the pneumococcus vaccine? - LUPUS UK
Hi Barnclown, I'm on cellcept 750mg twice daily and this vaccine knocks me for six! One year it hit me so bad I ended up in hospital with a flare up, when I said to my rheumatologist maybe I shouldn't get the vaccine anymore he said well I would much rather be treating you for a flare up than for flu. So now I look on it as a necessary evil, and prepare myself for a week or two of doing absolutely nothing after getting it. Hope this helps.
Sorry should have said 'pneumonia ' not flu 😀
Thanks bronagh! This is exactly what I hoped to hear. BUT am vvvv sorry you've had to cope with this kind of thing!
Am not wishing for the worst, and am feeling quite positive, but with my track record I need to be prepared + help my husband be ready should I need assistance. I've checked out the vaccine manufacturer's information on line, so will give him that too. And will discuss this with the nurse practitioner.
How often do you have the vaccine? Online they mention every 4-5 years....
Oh you're very wise Barnclown to research and prepare, with these illnesses we have to do that or we pay the price. I get it every 5 years and honestly it takes me about 6 weeks to get back on track. It's only the thought of pneumonia or meningitis that makes me get it and we just have to put our trust in our Drs and believe that they know best. Please keep us posted on how you get on, good luck.
Hmmm, exactly...sepsis is something a close family member died from & I've had a lifetime of bad infections....I do rally, responding well to antibiotics, so far, though...am vv glad to be looked at closely by immunology, but every time a dept gets hold of me there are such challenges to deal with alongside the benefits...am vvv grateful for your comments & advice....and vvvv glad you're here. Take care🌻
Be interested to find out how you are after the injection, I had mine 10 years ago when I was first really ill and I got an awful chest infection afterwards felt lousy was in bed for a couple of weeks this was put down to multiple problems rather than the injection at the time I wasn't on ant treatment. I was told I needed it every ten years so I am due a booster this year, I am now on mycophenolate and steroids so hopefully I won't react as I did last time. Hope you get on OK keep us updated.
The arm hurt badly for about 2 days and I felt a bit flu-ey for about 3 but then all was ok. And yes, it isn't done each year.
You certainly find out what state your immune system is in when you have these vaccines!. I think I had a slight flare when I had it and I was on Myco at the time. Having pneumonia would be more catastrophic!. Good luck for Saturday, lots of tlc afterwards!. X
Many thanks misty: now, you've got the balance of replies even! Am vvv much hoping & feeling positive that my tolerance will be as relatively easy going as yours & purpletop's...I'll never say never to that...but my track record means I need to be ready for a problematic reaction, so Branagh & Tracy's experiences are helping me prepare for that too. I'm a libra, and, yet again, this wonderful forum is helping me feel as balanced as I need. I thank goodness for you guys! xo🌹
It's such a worry doing these things when we've had problems in the past!. It's good you could have an appointment quickly, no thinking time!. Glad your replies have been helpful. Good luck. X
So true! Just enough time to orientate myself and reassure my husband who went pale at the thought of another vaccination excitement & asked a bunch of precise questions about how he'd get help over the weekend if I react badly. Of course, typical me, his anxiety helps me brave-up even more...I just assured him that before Saturday's appt I'd have time to get advice here on forum, and to go online to print off the pneumovax info leaflet so we're both "reading off the same page". Plus I'll get the surgery nurse practioner's advice tomorrow. He seems quite ok about it all now (he read the pneumovax info over breakfast).
Our surgery is going through a big shift this summer...it's advised patients that we'll be down from 6 GPs to only 2 with several skilled practitioners (my husband calls them the health plumbers). All this when the population in our area has increased due to several new housing estates. Today on radio 4 news there was lots of talk about the problems re lack of gps + delayed surgery appts....hmmmm: we certainly have these problems here! E.g. On Weds morning when the surgery phoned to tell me about immunology's report + the vaccination instructions, I immediately tried to book the vaccination appt. the receptionist said they're so booked up that i'd have to wait until later in July....I said: gosh, that's when I have a urology operation etc etc + I'm sure immunology will hope to test me for pneumococcus antibodies in mid July at my next appt...and the letter says this testing has to be 4 weeks after the vaccination. This receptionist is one of the more helpful in the team - and she's aware of my immune dysfunction status etc. well, suddenly she said: oh, yippee, I see we've had to add an extra nurse session this Saturday, can you come in v early? Of course I said: hooray, yes! Am thinking: getting timely non emergency care is going to increasingly be about building good relationships within my surgery and being prepared to negotiate...hmmmmm: all very well when we're actually feeling strong enough to negotiate.....
I had this vaccine while still on methotrexate injections in 2013. It lasts for ten years. Unlike the flu jab it gave me no repercussions with bad pain in my arm really but this year I've had Influenza A and mild pneumonia (one lung) and I'm not on Methotrexate anymore which makes me wonder if it's worthwhile.
However when in hospital I met a woman recovering from double pneumonia. She has Scleroderma with kidney disease, had a heart attack at 40 and has ulcerative colitis too. She said this recent pneumonia had nearly killed her. She takes Myco and Leflunomide but hadn't been given the pneumacoccus vaccine.
That's vvv interesting. Thanks twitchy! Am glad to know this. Despite my loooong history of chest infections etc I'm sure I'd not have been told to have this vaccine if my head of rheumatology hadn't spotted my hypogammaglobulinaemia and referred me to immunology where the consultant has just tested a range of my vaccination antibodies inc the pneumococcus. In his first report, those particular antibody test results are the only test results listed....but he does specify a long list of the other immune system tests he is awaiting results for (these aren't the standard tests I have as monthly myco monitoring). This process of being investigated by immunology is v interesting. Am v glad, though, that right now I have this vaccination thing to get on with...otherwise I'd be sitting here feeling rather frustrated by the slowness of this process....but after a lifetime of multisystem illness making me hang around waiting for these sort of things to play out, I'm reasonably good at coping....sort of!
You are more patient than me in many ways BC. Glad to be able to help you a little for once. I'm really not sure why I was pushed to have this vaccine as have no history of chest infections bar whooping cough as a kid and dry, ticklish cough when I was still eating wheat. I didn't really want it to be honest but my GP insisted because of the methotrexate.
As you know I wrote to my rheumy recently asking for decisions to be made about further options. Zilch back. Then had a day where all pain went but my face went numb so saw GP again as wanted to make sure no kind of stroke. He says TMJ once more again but I looked this up and it is pretty unusual to have numbness and tingling as part of TMJ and actually the type of pain doesn't correspond with mine either. I feel as if I'm wearing some kind of strange desensitising face mask. Honestly sense of bring in a John Wyndham novel increases daily!
Saw anaesthetist earlier and he was a lovely man - very sympathetic and reassuring. Says we can go ahead with my cholecystectomy in a few weeks time and my heart and oxygen will be closely monitored and if I have to stay on 10mg Prednisolone then so be it.
Am glad about the anaesthetist feedback! This is reassuring. The numbness is weird...I admit: I've kind of resigned myself to my facial etc etc numbness...I can totally relate to your 'desensitising face mask descrip'. On my face, it's a half-face mask covering everything from a mid-line down forehead-nose-chin & extending back to include jaw & ear. over decades now, the Drs have all been made well aware of it...they seem to simply think it's reasonable to have this numbness...so, I accept & compensate for it....but I feel I must force myself not to take it for granted, because, you're right, it has significance & it's levels need to be monitored...my impression is that because mine damps down enough to be tolerable in response to my oral lupus meds, I kind of bear with it...but in February when rheumatology told me to stop hydroxy & the numbness went up several notches, I decided to start using a megaphone when I tell the Drs my numbness levels across my bod...my next opportunity is in rheumatology clinic at the end of this month...cannot wait!
Although I have yet seen my Immunologist, since recently diagnosed (see him next month), so I have not been given any Medication for Lupus. After 2 admission to ICU with Pneumonia, Septicaemia, Respiratory failure, organ failure, ect. When Immunologist checked my Bloods, showed that I was @ Risk to repeated Pneumonia!
He advised me to have the Pneumonia Jab, (Pneumovax II) which I had last November 14, before Winter set in!! I was absolutely fine (unusual for me!!). Also to have the Pneuovax II every 5 years!
I have an array of complex illnesses/syndromes, EDS like yourself!
Apologies for such a late response, my husband (my Carer has been layed up in bed with Lumbar Spinal Stenosis for past 5 weeks, so I am struggling to cope, looking after myself & son, who also has EDS & many complex Syndromes!)
I hope your Vaccine goes well for you, please check that you have the correct Pneumonia Vaccine as my Immunologist was insistent that I had the Pneumovax II. I don"t know why in all honesty but guessing it has something to do with the type of Pneumonia I had the last twice?!
Good luck to you!
Sending positive, healing, comforting vibes your way.
Thanks so much lynn...means a grrreat deal to hear from you...
before the vaccine I looked into it online & discovered the various types...so on Saturday morning I made sure I did get pneumovax...but, blast it, I forgot to check whether it was l or ll...will have to find out at the surgery before I see immunology in mid July...THANKS for this prompt.
Yes, we do have important stuff in common...I'm so glad you're here. I've had so many chest & throat etc infections over the years, and always been amazed pneumonia hadn't turned up...so sorry to imagine you having to tough out living through all this..and your son too. Am hoping your carer is back soon!!!!!
So far am doing ok...the vaccine got me feeling quite odd at first, so I stayed at the surgery for an hour. But then I got on with things....feeling more achy & even more tired than I had been feeling before the vaccine, but otherwise: so far so good....am basically watchfully waiting on an infection surfacing (most likely: the osteomyelitis & sinusitis) but am thinking positive. Immunology intends to check for pneumonia antibodies 4 weeks after the vaccine, so am figuring it's during those 4 weeks that I need to watch out for some kind of reaction. I am feeling I've got off lightly but am not counting any chickens quite yet....
take care....am wishing you all the v best 🌻 xo
Sorry for late reply, hav"nt looked @ Lap-top for a while! My husband who cares for myself & son is still very unwell, in tremendous pain ect. (men make the worse patients!!).
Glad you had the Pneumovax. I did same as you as I was unaware that I had to have the specific Pneumovax II, so I did"nt ask when the Nurse gave it to me? In all honesty she refused first of all to give it to me, after my GP ordering the Vaccine in for me, she told me that I could only have another Vaccine if I did"nt have a Spleen! So I just could"nt wait to get out of there!!
When I had letter off Immunologist, stating that I should have the Pneuovax II, I went back to see my GP to check to make sure that I had the right one. I would advise you to do the same, just to make sure that you did have the correct Vaccine?
I felt a bit like Flu symptoms for a couple of days after but otherwise just the normal pain & sorry to say recurrent UTI & Lung Infections!
Although thankfully when I had my bloods done 4 weeks later, my levels for Pneumonia had improved, not in normal range but improved, so I may likely have Pneumonia again, than goodness it is summer! Although the one bout I had a real bad one when on Life-support in Intensive Care was in July!! So just can"t seem to win!!
I hope your Vaccine is successful? Also hope/pray that your Infections are not so frequent?!
Lovely to hear from you.
Lynn, thank you so so much for this: vvvvv helpful. Am wishing you & your family all the vvvv best as you manage this phenomenally tough stuff....XO☺️
Im on mmf the pneumococcal vaccine was tereible for me. Got ccills fever malaise for two days, then afterward got a lupus flare. However i never had problems with regular flu vaccines so im obviously different that you. I think i react much worse to bacterial vaccines than viral ones
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