How do you Do on High Dose Pred?

Hello everyone, wishing you all the very best with everything. I have a question about the high does prednisone. I am so miserably sick and not sure why or if I should be calling my Hemo.
I have done pred for ever from 7.5 daily to maybe 15 mg in short bursts ifin a flare or something but never this high of a dose and this long of a high dose and taper. I started on 50 mg and am now at 20 mg. Decreasing by 5 mg per week until I reach 10 mg where I have ben asked to stay.
But I have had sinus and bronchial and UTI infections for two weeks. I did norfloxicine 400mg once a day for 5 days and asked my GP if I should stay on a bit longer because of the prednisone dose. She said no, as she did not want it to challenge the good bacteria I would have left. The antibiotic and prednisone were a nightmare together on my stomach so I was kind of glad. But here I am still with the sinus thing and a terrible rumbly cough, but no fever. My puffy little round punkin' face has a bright red butterfly across my nose and cheeks....what a sight :huh: LOL!
I am so unfamiliar with high dose pred side effects so at this point I wonder, is it the pred, is it the lupus, is it a stubborn bacterial infection or could it be ITP? My symptoms also are, burning inside my mouth and tongue no matter how I rinse and brush and a bitter taste, and I'm achie, and my poor head there is so much pressure in my head, I find it hard to lay down. plus the brain fog, all I can do is sleep. I can't seem to get myself going there is just nothing to build on. I am all in with what ever this is. I also have a punkin' tummy that is I know, fluid, I had to go buy bigger pants!
I got sick like this after two weeks this time and about the same amount of time on the first high dose in the spring. I did get feeling better for a tiny window before it all started again so I guess I am thinking it's just the pred. But how does one really know with so much going on?

It seems like your symptoms are caused by different things. It sounds like you have thrush from Prednisone which accounts for the burning mouth and tongue. It's quite common from steroids and is easily treated. You need to call your GP.

The infections might take a while to go away. I've been there with UTI's and sinus infections. I've had a cough for three months that won't go away...it's happened before. Use as many natural treatments as you can or you'll end up with more side effects. Saline nasal sprays, nasal rinses, cough suppressants, etc.

Sometimes it's hard to figure out what is causing what when you have so many things going on. Just tackle one thing at a time. You'll get there.

It may well be the antibiotics causing thrush

True - that too! Both can cause thrush so you've been double whammied.

So finally I have found what I am looking for. I researched Selective IgA deficiency. I know I was told that I have a problem with IgA and a subclass of the IgG4 immunoglobulin. What I was not sure of was if "selective IgA" was the same thing. It is.
According to the Immune Deficiency Foundation and Baxter pharma who make Gammagard. It is absolutely what happened to me with regard to my IVIG reaction in 2014.
I did not research to pin blame although I am angry that I was not told the truth when I asked many, many times. It is irresponsible. It is not only about what happened that day but my future, and future treatment decisions. Lack of clarity in this situation has kept me in a place of ignorance and confusion. Not cool.
So now I can form a question, "Does my IgA and IgG (subclass IgG4) have any barring with regard to the second line treatment drugs?"
Have you ever been tested for immunoglobulin Sandi? You and I sound an awful lot alike. Too alike for me to ignore. And considering that you have had such reactions to some of the second line drug treatments I cannot ignore that maybe we are more alike than we know?
I respect your thought processes about your health situation immensely, and thank you for sharing your experiences. I am saddened though that you have gone through the serum sickness in order to share that information. Wouldn't it at least be great to find out that the immunoglobulin problem is possibly why? I think at least now that my doctors are going to have to try very hard to give me an answer this very difficult question that is very possibly the reason for the worst reactions with the second line drugs and IVIG.
Then all that will be my responsibility is to decide to take the risk or not. That's all... :laugh: too funny!
I have posted on my Lupus forum and was encouraged about t he Rituximab as another lupus patient has bee forced into the use of it for her out of control situation. The drug arrested the immune attack on her body and with fairly minimal side effects. But she has had to repeat the treatments several times. I do not know if the doseages are the same for lupus as it is for ITP and I have re-posted her. It will be interesting and helpful to find that out.
I am very interested in any information of anyone else who has tested positive for IgA and IgG deficiency and has had the sever reactions to the second line treatment option of ITP. thanks, Sandy Too

I'm not Sandi, I've not had at this time a severe reaction to prednisone or WinRho [treatments for ITP I've had], my IgA is in normal range but at the low end, my IgG is low & almost low enough to treat. I did not know this until a couple years ago - had a new hematologist & he sent me to a specialist who determined I do not have CVID, keeping an eye on those levels, and that I could have rituxan if necessary. The treatment for low IgG is IVIg - hope I don't get to the point of having to treat the low IgG as it is believed gamma globulin triggered my ITP.

Sandy - I think I have had the levels tested but it was a long time ago. I should have them tested again. I'll get to it eventually.

I think your doctors didn't tell you because they didn't know. You'd be surprised at the lack of information sometimes. Also, since IVIG is a treatment for low levels, they probably wouldn't think a reaction would be related.

My Hemo diagnosed serum sickness the second time I had it. The first time, I was told that it was a virus. A year later, he handed me a list of drugs that can cause serum sickness. Rituxan wasn't on the list, so he told me that I never had serum sickness. I nearly fell out of my chair. It was obvious to me that it was simply an incomplete list because serum sickness is a well known side effect and is listed all over the internet.