But my taper was going so well...

[Nitrobunny]

When my kids would declare “Its not fair!” I used to tell them “Fair is what the weather is” “Fair is where you go to see a pig win a prize” “Fair is what a young lass is”. Well I want to scream “it’s not fair!!!” right now. This mega flare that came out of no where is really one of the worst I’ve ever had. I truly mean bad,bad, bad and I don’t know if it’s so terrible because I was down to a fairly low dose but I suspect that’s the case. I raised my dose to 15 because I was in agony and within hours was feeling much better. The flare is there but acting like it may subside in a few days. I usually will jump back down to 10 when it subsides and then down to 7 and then slowly taper down again from there.

Samson continues to be my zen puppy by my side offering love and support.

[PMRpro Ambassador]

You have had flares before? At what doses?

[Nitrobunny in reply to PMRpro]

It’s been probably a year - and I honestly don’t remember the dose but I’m guessing 12 or so. It’s only happened a couple of times.

[Nitrobunny in reply to Nitrobunny]

It was right after I was forced to stop the Actemra. That I do remember.

[PMRpro Ambassador in reply to Nitrobunny]

That makes sense! No - just wondered if they happened at similar doses.

[Nitrobunny in reply to PMRpro]

I was really sad I had to quit the Actemra but fortunate to be able to take it for the time I did.

[SheffieldJane]

So sorry Nitrobunny. Glad you’ve got Samson. What method of tapering are you using. There might be a clue as to why this happened.

[Nitrobunny in reply to SheffieldJane]

For the last year since having to quit Actemra I’ve gone dead slow, nearly stopped sometime even staying at a dosage an extra month just to be extra cautious. I’ve done super well. I went to my doctor this morning because I was just feeling so badly and it came on so suddenly. He’s suspecting a lupus flare and sent me for labs and a MRI tomorrow since I’m past due for that. It’s been quite a while since I’ve had a lupus flare but those usually manifest with pancreatitis and a whole lot more ugliness. Anytime I crash suddenly he goes to general quarters because of my complex history. He will rule out coming out of remission as well but I’m positive I’m okay in that regard. I know what that feels like. For now it feels like a really bad flu with a whole lot of muscle and joint pain. I was running a fever as well. He should have the lab results back in a couple of hours and we’ll go from there. He doesn’t think this is just a PMR flare.

[5lupins in reply to Nitrobunny]

I think with two major problems it will be hard to sort out without the tests you are having. What do you find is the best food to eat when you have pancreatitis as John is struggling to eat anything and is loosing weight fast. Take care Jen

[peace_lover]

Sorry you’re feeling so rough. Give Samson an extra cuddle from yourself and then add one from me. It’s always worse when things are going well, we get a bit complacent sometimes I think when tapers are going swimmingly, and then the glass bottom drops... x

[Nitrobunny]

Just got off the phone with the doctor who called in a Rx for antibiotics. My white count was insanely high and I have red blood cells in my urine so it seems my immune system is busy trying to fight an infection right now. I’m going back to bed...

[Hidden in reply to Nitrobunny]

Oh Dear Nitrobunny

You are having a hard time of it, glad your GP ran blood tests & you have Antibiotics to treat the infection. Hope these kick in quickly & you start to improve very soon.

Stay in bed & rest.

Get Well Soon 🌺🌺🌺

Best Wishes

Mrs N x

[5lupins in reply to Nitrobunny]

Go to A&E or get doc to come out if you don't feel better soon is my advice from our experience. Jen

[Omanain]

Sorry you are having such a bad time. I wonder if you would be interested in this? It is an article in Science Daily called "Drinking baking soda could be an inexpensive, safe way to combat autoimmune disease" If you google that it comes up. I'm not sure if I can send a link on this site.

The source is very reputable and properly tested and I am convinced enough to try it. I can't find a dose anywhere so I have been taking half a teaspoon in 200ml of water for 4 days now. I should be seeing an improvement after 2 weeks.

I am on 10mg med and am told I will start reducing by 1mg per month as from the end of next week. I am hoping the bi-carb will help.

See what you think.

[PMRpro Ambassador in reply to Omanain]

This has been discussed on the forums recently (not sure if it was here too) but the article I referenced then about this work quoted the lead author as saying "Don't try this at home yet."! This is very early and fairly basic science work. Bicarb is a commonly used household remedy for stomach problems but it is important to check with your doctor whether it is safe for you - as it is for any supplement.

And maybe this article

autoimmunewellness.com/is-b...

may make you question whether this "finding" really meant what the media represented it as being.

[Omanain in reply to PMRpro]

Thanks PMRpro. I have skimmed the article and will read it properly later. Maybe just another case of something sounding too good to be true?!

[PMRpro Ambassador in reply to Omanain]

Well you know what they say - if it sounds too good to be true...

piglette called me an old cynic the other day - she is probably right