Bleh

[Psyborg]

For my 5th anniversary of getting sick I appear to have gotten a flare. GPA the gift that keeps on giving :p We tried to increase Pred to head things off...and that seemed to work for about 2 days then things got worse again. Starting to wonder if there is somethign weird in the environment this time of year. :)

[Pete]

It seems that with the abrupt transition from early April to late June, every plant in the area has thrown off immense amounts of pollen. Could be an allergy symptom.

Is everything ok with you, otherwise?

[NikkiNicole]

I am approaching my second year anniversary and hoping that this is not a flare. Prednisone seemed to be helping a little so my doctor is hopeful it was just some sort of wicked infection. I hope that things get better for you. I've heard everyone complaining about how horrible their allergies are this year. In California, our weather has been extremely messed up so it's out of control!!
Big hugs to you!

[annekat]

So sorry, Bob. I tend to get minor flares in the winter and then have allergy issues starting in late winter and early spring, and going through mid summer. Prednisone can definitely help allergy symptoms as well as flares, so it might be hard to tell which it is helping most or how much you might need to take care of both. As for other stuff in the air..... could be, too.

[BookNut]

Bob....I was just thinking ... I haven't seen anything from Psyborg in awhile....and here you are! Hope it is not a fkare and that you are better very soon!!

[JeanMarie]

double Bleh!!! Hope it goes away & you are better soon.

[mishb]

Bob, I'm just catching up with this one.

I too hope that it is not a full blown flare and that the little white pill (pred) gets things under control quickly.

I'm just back from the USA, and yes, that pollen was flying around nice and freely and the sneezing people were everywhere.

Get well soon mate

[Psyborg]

Sorry been out of it :) I'm pretty sure its a flare. Up to 10 and the symptoms came back, then up to 20 and 4 days later the symptoms are back. It's the wicked fatigue mainly and some random pains. I'll be giving the Doc a call on Monday.

Sorry I've been a bit MIA. Work has been a little stressful and have been doing brainless activities in my off time :)

[vdub]

You have been MIA, Bob! And, you were missed!

I had to go back on pred, too, but nothing at the levels you are on. I went to 10, but was way to wired, so backed off to 7.5 and doing very well.

Do you think you'll have to go higher than 20? Sure hope not! Keep us informed on your progress. I hope you can get it under control.

[Psyborg]

I'm pretty sure this is my first serious flare up. For the first time in a while I can feel something not right in my airway. No idea on ye olde prednisone dosage. I'm probably going up to see the doctor next week, but hoping she can get started ordering RTX before then.

Previous flare ups have mostly been pain and minor fatigue. With one time having a rash. This actually feels more like the first time again. My personal doctor said she'd increase my Citralopram if I felt like the stress caused this....which I know it did. That said I really am reluctant to take more of anything :(

[annekat]

Bob, I know from personal experience how the stress of work can contribute to flares. I'm glad you are doing brainless activities during your time off, if that is what feels comfortable and stress-relieving. I hope you can get this sorted out soon and back on an even keel.

[Psyborg]

Thanks for you concern folks :)

[Psyborg]

Spent today at CC. I'm going to be set up for RTX infusions. They are now only doing 4 insusions 1 week apart as opposed to the previous times I did 2 2 weeks apart. I guess that Medicare demanded the change and all the insurers followed suit, even though the cost is actually higher. Weirdos.

[Pete]

Hope they make you better!!

[annekat]

Best wishes for successful treatment, Bob! I so envy you people who live in Ohio. Except for the winters and maybe the summer humidity....

[Psyborg]

Winters do suck. :)

[Alysia]

Praying for you. get well soon.

[Psyborg]

Thanks Alysia, still praying for you as well.

CT Scan set for tomorrow morning. No idea how long I'll be waiting for the insurance to approve the RTX.

Couple things that i forgot after my CC run. They are now doing more RTX with just Prednisone in between. Previous times they didn't take me off of my other meds, this time they are taking me off Cellcept, which is a bit disappointing.

She listened to my chest when I mentioned the pain, and she thought the opposite side sounded "Moist". Weird because now I feel like somehting over there might be going on, hopefully that is just in my head :)

[annekat]

We will all be waiting to hear the results of your CT scan, so be sure to let us know as soon as you know!

[Debbie C]

Bob ,sorry to hear you had an unexpected anniversary "gift" Hopefully it won't take to long for the ins to approve the rtx. I was wondering what a "moist" chest sounds like !! Like Anne said let us know the ct results..hope all is well there.
And a note for allergy sufferers, I learned from this girl when I was in Fl. that her dr. told her to get honey that was made from a 25-50 mile radius.And take a few teaspoons a day. I guess it works kinda like a vaccine ,since you are ingesting the same pollen that is in the air around you ??!! It helped her,they sell it at most health food stores.

[MikeG-2012]

And a note for allergy sufferers, I learned from this girl when I was in Fl. that her dr. told her to get honey that was made from a 25-50 mile radius.And take a few teaspoons a day. I guess it works kinda like a vaccine ,since you are ingesting the same pollen that is in the air around you ??!! It helped her,they sell it at most health food stores.

I do this now too Debra, but I heard the magic honey number was 17 miles from your home. Maybe in the city, the bees go farther? (-8 Ever since I started eating more honey, my outdoor/seasonal allergies are all but gone.

[annekat]

I do this now too Debra, but I heard the magic honey number was 17 miles from your home. Maybe in the city, the bees go farther? (-8 Ever since I started eating more honey, my outdoor/seasonal allergies are all but gone. It's cool that you've gotten those results, Mike. I'd heard this about honey and allergies for years and sort of discounted it, thinking it was just a theory that made some sense but doubting that it would make that much difference in practice. I do have access to local honey, probably within 17 miles, though I'd have to check. The local stuff is pretty expensive, but probably no more so than allergy meds and more pleasant to ingest! I'll have to give this some thought, for sure.

[Psyborg]

Well the CT showed nothing substantial in changes...though that makes me think the way I feel doesn't make much sense. My spleen was slightly enlarged which was new. Probably from the drugs we are on. Technically it can be Wegeners Affected but I'd think that would be more pronounced. Waiting to hear back from the doctor /shrug.

[Debbie C]

Well Bob that's good that the ct showed nothing. Hope you can figure it out soon.

[Jaha]

Bob,
I'm glad that your lungs look pretty good. We have the same Doc and I went off of Cellcept in Feb and seem to be doing ok on just Preds and Bactrim will have my 1st Rtx maint. at the end of June. I had always still been on Cellcept when I had my other infusions. She had stated to me that based on a study, we could be receiving to much Tx and that is a bad thing too. I had wanted to go off of Cellcept, because I had felt like I was being poisoned on it, so I was a happy camper. She told me about the 4 verses the 2 also and it seems very inconvenient and expensive for us too. Wishing you all the best!

[Psyborg]

So they had me stop CellCept in preparation for my upcoming infusion. ANyone stopped cellcept cold turkey. I almost feel like i'm having a bit of withdrawl as the amount of fatigue has spiked since going off. Not stopped anything without starting something else in a while ;)

[Pete]

Did Dr VF take you off cellcept? I stayed on mtx while getting infusions and had no problems.

[Jaha]

Bob,
I stopped taking Cellcept in Feb (my choice), and don't recall any extra fatigue or side effects. The reason I stopped taking it was because I felt like I was having side effects from taking it for so long. Dr. VF agreed to let me try to just take Rtx infusions every 6mos and see how that would do for me. In the past I always took the Cellcept along with the Rtx. When the Doc and I were discussed this she mentioned a study that showed that some patients were getting to much treatment, and that it was causing problems like to many infections. It is so individual for all of us and she said that the study shows that sometimes less is best. I am wishing you all the best, you may be more fatigued because you are flaring.

[Psyborg]

She did take me off. Evidently Cellcept and RTX don't play nice together. Though I didn't ask for details.

You are probably right Jaha, it's probably a combination of the flare along with the change of meds making it seem more noticeable :)

[gilders]

I had to stop Azathioprine just before I started RTX, so I guess it makes sense to stop cellcept.
I'm also on 4 infusions of RTX (2 so far) rather than the 2 doses that previously seemed the norm.

Hope things improve as soon as possible for you. Am I right in thinking RTX takes a while to show it's benefits?

[Pete]

Am I right in thinking RTX takes a while to show it's benefits?

Yes - 4-6 weeks to get full effect, then good for 6+ months.