covid vaccine: So here I am... - Hughes Syndrome A...

Hughes Syndrome APS Forum

10,002 members10,207 posts

covid vaccine

mully profile image

So here I am unvaccinated (I'm not antivax at all just terrified)I have had excruciating facial pain Trigeminal neuralgia So severe lost 3 stone Having continual attacks all day of searing electrical shock type pain Now having exhausted all other medication I'm on full dose gabapentin which keeps the pain at bay The reason I haven't had the jab is if it brings back the pain I have no other drugs to relieve it I know peoples opinion would be 'well just think what covid would do' but so far I have hidden from covid but I couldn't hide from the vaccine I am completely happy to live down a hole for as long as it takes haha I am a total coward ! I have now finally seen a Rheumatologist and Neurologist who have both agreed it is Central nervous system inflammation and I will need immune suppression and as I previously mentioned I have an appointment with Proff D'cruz in March It doesn't help that close family member is an immunologist and is absolutely anti covid vax (although she can't say this publicly as she would lose her job) I'm aware its only one persons opinion and there is a huge chorus of people pro vaccine I feel so worn down with it all I know were I to get ill after the vaccine with my GP there would be no help available so I will talk it through with Proff D'cruz Again Thank you all for your support You've been so kind to me it's made me cry HaHa

The ability to reply to this post has been turned off.

37 Replies
lupus-support1 profile image

First, get yourself sorted with Prof Hughes.Second, talk to him about it.

I am very vulnerable and have had 4 shots without any problems. My husband & children, my elderly mother, we are OK.

Do you have annual flu vaccines?

I have had the lot plus pneumovax every 3-5 years.

With good wishes,


mully profile image
mully in reply to lupus-support1

Thank you for your reply Ros that's reassuring to hear

MaryF profile image

I had the vaccine, I was unwell as I have many conditions including Steven's Johnson etc, however I did take allergy pills before during and after and it was done at the hospital. Be aware as you sort yourself out with your next chat with consultant, be aware that many of us become low in B12 with an autoimmune disease, worth checking out just in case, so you can rule it out. there is a link with low b12 and Trigeminal neuralgia. MaryF

mully profile image
mully in reply to MaryF

Hi Mary Thank you for your reply I discovered I had Steven's Johnsons syndrome too about 3mths ago when I was prescribed carbamazepine for my Trigeminal Neuralgia I ended up in hospital with hyponatraemia so no more Sodium channel blockers for me!

Hi mully,

We talked 3 months ago. As I understand it you did not have a Specialist at that time which is the most important thing for us to have as we need a correct anticoagulation. It is our thick blood that bothers us all the time. So glad you have got prof D´Cruz in March. I know he knows APS very well.

Probably you need Warfarin or something like that. It is up to him to decide. Try to wait for him. Which date in March?

mully profile image
mully in reply to Lure2

Hi Lure Thank you for your reply I am back on warfarin now but unfortunately we don't have an APS specialist in the county that's why I am so relieved to be back in touch with Proff D'cruz

Lure2 profile image
Lure2 in reply to mully

Good. Do you feel better after you started Warfarin. What INR is your therapeutic value? Who put you back on Warfarin?

It can be important that we are well anticoagulated when and if we get the Covid-19 when having APS or even take the Vaccination. Not too high INR exactly when taking the vaccination. I have a friend who got the Vaccination and he had some form of clot and got Eliquis (wrong spelling perhaps) for several months. Not 100 % that it was because of the vaccination. Very unusual.

mully profile image
mully in reply to Lure2

Thank you Lure the stroke clinic put me back on warfarin after finding I had established white matter disease I self test and have been discharged from the stroke clinic my range is 3-4 to prevent neurological symptoms However it fluctuates wildly My GP does not agree with the range and would not provide a prophylactic like Fragmin even when it was 1.9 for 3 months at the end of which my head was in agony I ended up at the TIA clinic the DR was 2 hrs late and gave me anti-sickness pills for trigeminal neuralgia no blood pressure was taken no scans despite having had a stoke 7mths earlier with the same symptoms ever since I've been falling to the right So yes extremely relieved I have a telephone appointment with DR D'cruz in march and he has arranged brain and spine MRI for March He's my God had 15yrs remission after his treatment and thank goodness he still remembers me

Lure2 profile image
Lure2 in reply to mully

I am so glad to hear that. It was March 24 I think. Hope he will give you Fragmin shots to take when the INR is too low and allow you to test often enough to not get those horrible different neurological symptoms from APS. We often need an INR at 3.5 - 4.0 to avoid symptoms.

Best wishes

A friend with diabetes, fibromyalgia, random shooting pains in her extremities and (probably, but no official diagnosis,) APS spoke with me by phone many, many times about her fear of getting the shot due to her autoimmune issues. Her son and I fetched her groceries and left them on her porch. She hunkered down so she could not be exposed. But she had a serious diabetic issue and spent time in a hospital. Some days later she contracted and died from covid. So, I speak from personal experience: covid can kill and often ( usually?) leave the recovering patient with long covid. There is a much stronger connection between actually getting the disease and lingering, bizarre, autoimmune-like neurologic symptoms of long covid, then getting same results from getting the jab.

Early in the pandemic my now deceased friend and I had agreeded that the vaccine might be bad for us autoimmune patients. But, particularly since you'all in the UK got the shots before us in the US and I did not read post jab horror stories on this site, my position regarding vaccine safety changed from ... maybe? ,,, to being pro shot. I got the shot and had no side effects other that fatigue the next day. During subsequent long phone calls I put forth the argument that the shot certainly seems OK. Now I feel guilty that I did not stress vaccine safety strongly enough.

I will advance a side issue as well : contagion. You dont get the vaccine just to protect yourself. You get it to protect others as well. Private health in this instance equals public health. We're all in this together.

mully profile image
mully in reply to GinaD

Thank you Gina I'm so sorry to hear about your friend I have low blood pressure no diabetes No history of lung issues but I do clot clot and clot again which causes demyelination of my brain and spine It's been a long hard battle to get warfarin now a hard battle with my GP to keep it in range she's never heard of anyone having an INR of 3-4 she refuses to allow me Heparin when it falls bellow 2 feels its unnecessary even though I have clotted before whilst on Warfarin I read the importance of making sure your INR was in range when having the Jab However I have absolutely no support in the event that I have a bad reaction especially one that effects my INR

MaryF profile image
MaryFAdministrator in reply to GinaD

It was risky for me getting jabbed due to my allergies, but I persisted and had it at the hospital, I did take allergy pills, an ex administrator on here is no longer with us due to catching it before vaccines were available for her. MaryF

Please make the best decision for yourself. If you have doubts, listen to that. If you want to get it, get it. It should always be about choice. I wish you the best of luck.

mully profile image
mully in reply to ChristaBruno

Thank you Christa I'm scared if I don't get jabbed I don't get treatment

MaryF profile image
MaryFAdministrator in reply to mully

I was worried about getting it, but weighted it up, please talk to somebody you trust, I am high risk for drugs full stop, but I persisted with GP, specialist etc, I was ill, but not as ill as I would have been with no vaccine. MaryF

KellyInTexas profile image

Oh what a terrible predicament you are in!

You must feel so worn down…

You know I’m a gunna say it. Git yer dad gum shot!

Ok. Got my Texas outta the way! 😂

( sometimes it’s just such a good lead in I jist gotta do it!)

( I actually don’t have a strong Texas accent but I do say “y’all!” )

In all seriousness, I was very worried with APS and CVST, as I have that on my list of collected complications from APS, as well as “remote history of ITP.”

Except my ITP was near fatal. I was not expected to live. We now realize it was probably also CAPS.

But my rheumatologist said get the jab, you will probably have a stronger reaction because you are autoimmune-y. You over react. Expect headaches a little longer. Take Tylenol after headache started. Extra fluids. Watch movies. Get it on a Friday…. Stay in bed over the weekend and rest.

So I did- all was well.

But I honestly could not agree with Ros more.

mully profile image
mully in reply to KellyInTexas

The problem is Kelly I don't think if I was ill after the vaccine there would be much help The only person I would be able to get in touch with would be my GP who to be honest is neither use nor ornament and in the terrifying event that I ended up in hospital horribly understaffed and overworked and not a single consultant in the county who specialises or understands APS

KellyInTexas profile image
KellyInTexasAdministrator in reply to mully

Yes, I though of that for you also. I would be concerned, too.

Such a helpless position!

Good news is the Covid counts are coming down now.

Maybe this will allow for a chance for a consult when things settle.

So sorry again about your predicament.

Hi Mully I am so very sorry to hear you are suffering from this condition. Two of my best girlfriends, have Trigeminal Neralgia, (they have no other conditions), and from what they tell me, it sounds brutal!

I too live like a hermit, as I’ve chosen for 2 reasons not to get a vaccine as well. I’m not anti vax! Just this vaccine. I’m just not comfortable with this TYPE of vaccine. Until time has passed, and there are data on the long term affects, if any, on those who have been vaccinated, I’m not feeling a strong urge, to rush out to get 2, 3 or 4 jabs that seem to be ineffective at some point. I know of at least 15 double vaccinated people in my small town, who have contracted Covid since their jabs! The people I know, and there are many, who are unvaccinated, haven’t contracted Covid. Not to say they won’t, but I don’t know of any. Most likely, because they too are living life pretty low keyed.

Secondly, the efficacy of the vaccine drops significantly, if on prednisone, even on a dose as low as 5 mg. I was told, I’d most likely have to continue living as I am, vaxxed or unvaxxed! You can only do what you feel comfortable with, and people will judge, despite, you’re being very responsible. I learned a long time ago, if you want peace with yourself, and in your life, never let those who judge, berate, bully, present bad attitudes, and negative remarks get under your skin. They don’t live your life and you don’t live theirs, therefore, it’s nobody’s business either way! All the best at your Doctors appointment, and your decision on the vaccine. 💕

mully profile image
mully in reply to hihannula

Thank you so much for your post The fact is I am under so much pressure to be vaccinated I don't know if I will be allowed immune suppression if I am not vaccinated

Ray46 profile image
Ray46 in reply to hihannula

Just out of interest, what is the "TYPE of vaccine" you refer to, is it something in the production or the administration method or? There are many covid vaccines, I think they are all (at least for UK approved) currently IM injection, is that what you want to avoid?

hihannula profile image
hihannula in reply to Ray46


Ray46 profile image
Ray46 in reply to hihannula

Maybe good news then - AZ / "oxford" covid vax at least is already in trials for nasal administration..

MaryF profile image
MaryFAdministrator in reply to Ray46

Perhaps the GP could advise on the nasal version. MaryF

MaryF profile image
MaryFAdministrator in reply to hihannula

Let us hope that the GP gives the correct advice with supportive back up should a few days of feeling unwell come about. Everyone in my household certainly felt they had been a bit ill as they had the vaccine, but it did not last. MaryF

Are you saying, your Doctor might with hold medication from you, unless you get vaccinated? I just want to understand if I’m getting what you are saying.

mully profile image
mully in reply to hihannula

That's my fear yes I worry that they will refuse immune suppression medication if I am unvaccinated The NHS are so pro-vaccination I would feel better if I could at least read the alternative Data but it gets removed as not in the public interest

hihannula profile image
hihannula in reply to mully

Dear Mully. I too, have been trying to get the full data, and specific questions answered, but it’s impossible. I really do not think that legally or morally that any Doctor in his/her right mind would even suggest such a unethical ultimatum, in suggesting, no vaccine, no medication! 😡 I’d definitely be lining up an excellent criminal lawyer, if that were to happen. I don’t see any reason why you cannot be prescribed your immunosuppressive medications, and continue to be responsible like you have been all along. Try not to worry, as I do not think, you will be forced to get these vaccines in exchange for medication, but I really do understand your concern. Keep me posted. Hugs Holly

Ray46 profile image
Ray46 in reply to hihannula

Doctors also have a duty to balance risk of treatment and they can, and do, insist that treatments are done in a certain order if they cross-react - and in this case I can see clinical argument that they would.

If, for example, you are a smoker, you will struggle to get oxygen treatment from any doctor - quite simply the risk of blowing yourself up (or near enough) is too great. If (and this is the point where I'd say your lawyer comes in) oxygen is immediately necessary to save your life (if you have covid for instance), then that is different, and in all likelihood you'll get it (but you won't get any fags or lighters). If it is merely to improve your life, you will be told to stop smoking first.

The covid situation is still in flux, but it does now look as though we are headed for a "plan" to let it go endemic, currently flattening at around 100k per day, maybe 1% of people infected at any one time - and the plan (allegedly) is to soon have NO widespread testing. In that scenario the disease is going to become increasingly difficult to avoid, sooner or later you are going to get it, so any doctor must be looking at the risk to the patient _when_ they get it, not the risk of _if_ they get it. Being unvaccinated and immunosuppressed is quite possibly the highest risk category, I can see doctors being increasingly reluctant to put patients into that situation unless lack of treatment would be immediately life threatening. There is also the issue that vaccination is significantly less effective and longer program/more shots if done after immunosuppression rather than before.

Interestingly, this sort of issue has come up in my treatment since APS diagnosis. I had some minor surgery done before I went on warfarin, I rushed into it a bit because I was worried it would be a problem on warfarin. It wasn't without problems, it didn't save my life, but it did improve it in some areas, did remove a source of pain/discomfort/anxiety and in hindsight (after 5 yrs) it was the right decision.

Here's the thing: I was told later, after I went on warfarin, that they wouldn't have done that surgery if I'd been on it. Not "it would have been extra hassle", not "you'd have needed bridging on/off" (which is what I'd though), but "you wouldn't have got the surgery", period. In my case, the specialists said that that treatment would have been withheld if I'd been on warfarin, because the risk (bridging etc.) would have been deemed to outweigh the benefit - I'd have had to have lived with the problem unless/until it got a lot worse / life-threatening.

I can easily see similar risk calculation being done with vaccination and immunosuppression (unless after solid-organ transplant or similar where lack of immunosuppression is immediately life-threatening).

mully profile image
mully in reply to Ray46

Hi Ray Thank you for your reply I am not at all antivax just anti pain I am terrified of anything making this pain worse than it is already (they don't call it the suicide pain for nothing ) where as there is a chance I can hide from covid there would be no chance I could hide from the effects of the vaccine (although there may be none) I know that my risks of dying from covid are pretty small 70 million people in the UK and 150 thousand deaths in 3 years which would be the main reason for me to have the vaccination ( although all deaths are heart breaking of course)I'm just scared that's all

mully profile image
mully in reply to mully

30 thousand people die a year of Flu and pneumonia but because it wasn't on the news every night it passed me by without fear Life was so much easier when I lived my life in blissful ignorance I do feel that the pharmaceutical companies must feel like they've hit the jackpot with every man woman and child over 12 being vaccinated all over the world

MaryF profile image
MaryFAdministrator in reply to mully

Please do have a chat to your GP to get some reassurance. MaryF

Hi Mully. I know where you are coming from. I have had problems, and don’t want the jab. As an NHS worker I am expected to have it. I am 100% sure my APS was trigged by my HPV vaccines about 10 years ago, and am reluctant to have a vaccine with no long term side effects data. It took 3 years before I was diagnosed at 17, and the anticoagulants gave me back my life. I know people have died from having this jab...not many, but it is a recognised fact. People should not be pressurised, and certainly not forced, into having it. There are antiviral drugs available. You have done your research. And yes, doctors are certainly discouraged from speaking up against this jab. However, I am not anti vax, and think it is wonderful for the old and the vulnerable, and for those that want it. Best wishes. N xx

mully profile image
mully in reply to niamhathome

Hi Thank you for your reply I hope you don't lose your job over this Surely if everybody will at some point have had covid or the vaccine then you can't be at risk of passing it on to anyone? I was reading that the reason the hospitals are so overwhelmed is beds are blocked as they cannot return older people to their nursing home as they are so horribly short staffed so many staff left after covid and they have been unable to recruit new staff

I was so so scared to. I haven’t experienced the exact pain you talk about but still understand your fear. I have had so many issues. I am not advising I am just saying I have had 3 vaccines which I was scared about but I got through without to much hassle. I was advise to have my third shot before I started immuno therapy. As advised from my neurologist and my immunologist. We had no other choice but to have this therapy which is on going. It won’t heal me just hopefully slow down the symptoms of APS SLE and MS

I wish you luck in what ever you decide.

We are all learning. Keep messaging and help others where you can

Regards Linda


I’m in the same situation - scared to get the vax and isolating. I do have frontline dr medications on hand in case, taking supplements to boost my immune system. The vax is not effective against omnicron so getting it at this point seems not useful. I’ve recently read nasal and mouth rinses are proving effective to killing virus. Idk.. Good hygiene can’t hurt. Wishing you the best.

Hi Mully, has your relative said why she's against these vaccines in particular?

The ability to reply to this post has been turned off.

You may also like...