Which way to go when its difficult to get someone to discuss anxieties about proposed treatment?

[sandyandtweed]

Has anyone some ideas about what I am letting myself in for, as they have found very few antibodies or immunity following Covid vaccinations. It has been suggested that I have immunoglobulin therapy, and tomorrow I am to have multiple vaccinations,pneumnococcus, haemophilus, meningitis, and Hib B (?)

I have been on prednisolone since May last years, starting at 60mg and slowly reducing to today 6mg as I developed giant cell arteritis. It is proposed to move me from the steriods to Azathioprine in order to help my kidneys, as I also have chronic kidney disease besides CLL. I am also type 2 diabetic. Added to all that I live alone and am aged 83. I obviously dont want to start something that would put me into a more difficult situation than I am in at present, eg not being able to look after myself owing to side effects of treatment.

[SofiaDeo]

We don't really know a lot with any certainty regarding the Covid vaccine. Scientists are currently doing longer term studies to see how measuring the antibodies known to appear Post Infection, correlates with Covid vaccine administration antibodies, as well as how it affects the population moving forward. Some people are producing antibodies we know show up in Covid infected people, but there may be other, different antibodies produced that we can't tell are there yet. As well as, we can't currently comment on any T cell production from the vaccine. It will take more time to know these things. Right now, we know Covid vaccination correlates with decreased severity of infection. The fact that many US areas are removing lockdowns and people are engaging in risky behavior confuses the issue, since hospitalizations continue to rise. Add to that people who refuse to be vaccinated, who could asymptomatically carry Covid to others in addition to getting sick themselves, and it's very confusing.

I needed treatment starting last year, and just did the best I could regarding my personal safety.

You have a complex medical case. It's hard to know exactly how treatments will affect you ahead of time. Follow your diet and take medications the best you can. Do you journal your daily health symptoms? This can alert you to any patterns or symptoms that crop up, to tell your doctors. Journaling also can help relieve anxieties. IDK what support groups you have locally, to discuss things with.

[Smith123456]

i saw my specialist yesterday. She says the results so far depend on what your doing. if your watch and wait taking no novel drugs it's about 40-50 percent at best. If your taking imbruvica ilike i am it's 10 percent at best-those are her words not mine. I also asked about tests to tell what level of immunity you've developed. she said there are a bunch of them that haven't even been proven they are correct. So my advice is-get all shots possible-dross your fingers-but continue to act like covid 19 is rampant and you have no immunity-although you might.

[guzzifan]

Your long-term prednisolone will have suppressed your immune system in addition to the suppression from CLL. I am not a doctor, but if it were me I would hold the vaccinations until I had been off prednisolone completely for a few weeks. That way you may get a better immune response.

Having several vaccinations on the same day would be too much for me, but then I'm a bit of a chicken when it comes to needles. If you have to drive home afterwards, make sure your arm will be operational.

[McBuster]

I would definitely ask the doctor if you could space out the vaccines a bit. I made the mistake of having the flu and Prevnar13 on the same day. Ended up in the ER with a reaction and my lymph nodes enlarged on my neck and under my ear a few days later. It took six weeks for them to go down and regain my energy. I had my second Pfizer shot 2 weeks ago, dealing with enlarged lymph nodes again and lack of energy. I am W&W still.