Pfizer Mar. 3921 & April 3021. Most severe flare I’ve ever had. After 2nd started prednisone 5mg day but did not control. My son started school in England & planned a family visit for Sept but unable due to flare. Started methotrexate injections which are healing, have been increasing dose monthly from 7.5 to 15 to find relief. Doctors wanted a 3rd in July & 4th in Oct. I cannot do this so haven’t.
I might consider an old style Covid Vzine if they ever become available in US but right now no.
Typo for date on Vzines should be 2021 didn’t see how to edit
So sorry for your flare after vaccine. Some of us seem to respond badly. Are you having better days now? I hope so. Best, Titters
Mimi, I don't want you to think I don't care, but I'm in Australia, I was lucky in that my vaccinations didn't make my lupus any worse. I have been in a lupus flare since February 2021. I've been on pred at fluctuating doses since then, I got lupus vasculitis in March, which also involved my lungs, I was diagnosed with pneumonitis, pred dose went up to 60mg/day. Weaned it back to 10mg had my Pfizer Covid vaccinations and my flu jab over several months after I waited out the weeks between jabs. Then went on to have my very delayed doses of rituximab. All the while suffering from severe pain in my right hip, right elbow - which is "tennis elbow" and I've had cortisone injected into it twice with some improvement, that wears off after 6-8 weeks. Also in my small joints - fingers, wrists, toes, ankles, neck and ribs. Ongoing chest pain and breathlessness from the pneumonitis. My mental health is always a big issue and along the way I've continued to try and participate in the activities suggested by my community mental health support worker. I've had surgery recently, ended up in hospital with a dangerously low potassium level in my blood and having black outs. I've previously had a stroke, so was terrified these were mini strokes. Thankfully not. All the way through I have been on methotrexate 20mg by weekly injections. I have been taking methotrexate since 2015, it was 25mg per week taking tablets, which because they gave me awful nausea, I took part of the dose Monday morning and the other part Thursday morning, this helped a bit with the nausea. In March we changed to 1 injection a week, much better as no nausea. If your doctor wants you to take methotrexate longer term, you need to have a proper discussion with them. It's not a cure but it can help keep the lupus better controlled, which usually sees a reduction in the amount of pain. It also has other effects that your doctor needs to tell you about. It's generally not given for short periods, and it takes a while to kick in. It's usually introduced after you have tried Plaquenil, or is added to the regime with the Plaquenil as well. Both help to dampen down the over active immune response that is largely what lupus is. By doing this the pain is less because the joints aren't as stiff and swollen. I can't take Plaquenil anymore so rely more on methotrexate, prednisolone and rituximab. When you first start taking methotrexate, as with most drugs, you start on a low dose and build the dose up until you reach the dose that works for you, the recommended optimal dose or the highest dose given. This is determined by your doctor. It would seem to me that you need to have a proper, in depth discussion with your lupus doctor so you are better informed of what their plan is to treat your lupus and so you understand what drugs they're using, why, how, for how long and what they expect them to do for you and what the possible downsides might be. You need to ask questions, especially if you don't understand something. I was told by a Uni Professor many, many years ago, that there is no such thing as a stupid question. Only a stupid person who didn't ask the question they needed to, when they needed to and so went on in blind missing the vital answer that they did need! I would also look into non drug ways to help with pain. Heat packs, cool or cold packs, massage of the area, physio rollers, tennis balls, spiky balls all offer a way to home massage areas, at pressures you can tolerate as they are created by your body weight. Also biofeedback, meditation and mindfulness help. Improving your sleep, diet and exercise all help. Seeing a psychologist to help with reducing stress in your life and to learn CBT will definitely help you to tolerate some lupus pain. Lupus thrives on stress!!! Unfortunately pain is a part of lupus, the biggest thing is learning to live with a constant level of pain, the psychologist will help with this too. It is a journey having lupus, you are never sure where you will be going next. Best wishes Kat
Hello Kat136. Your post is a journey of courage. What resilience you have for timing all of your procedures despite flares,Pain, hospital, and mental health problems.
You write very straightforward coping of all that has happened to you. ( I know there is more). I hope you post more. Your resilience and experience of the tough road are stories we all need to hear. Extra hugs to you. ♥️🌺Titters
Also may I ask why you can’t take plaqunil anymore? Thx.
I take methoprednisalone 4 mg a day and the doctor just added azepine. The spelling may be wrong. He says that the Medrol or a chemical name is not helping enough and he is worried what the Plaquenil is doing to my eyes. I give up trying to figure out the doctors. Then getting someone from an office to call you back is a real joke. I believe the US health system is messed up.
If a mRNA vaccine causes such a flare just imagine how much worse of a flare or even death catching covid will cause. Get a third dose.
Metofill Injections (methotrexate)
Methotrexate, steroids, COVID-19
Methotrexate and Covid jab
Doctors will not prescribe my Methotrexate Injections!
Covid, antivirals & methotrexate help please
