Discussion in 'Rituximab: News and Research' started by Jacque, Aug 27, 2012.
PS what is AFAIK??? duh
I can't believe I detailed my OWN...so you are pushing GracieJ!!! Usually it is all I have to just get the trash out...yest I was literally scrubbing the upholstery..vacuumed...cleaned all inside of windows... hummmm wonder what is in store for me today.. Got up at NOON...geeeeez...but I slept sooo good.
As Far As I Know
very useful, along with IIRC = If I Recall Correctly
Thank you for those words of wisdom... siggggghhhhhhh Ihave been like this my whole life as you know... when you feel the slightest bit good you have to get everything cleaned ... cuz you know the crash is coming... I understand what you are saying tho...and need to take it easy....THANK YOU ... for your words of advice...
Too... funny... I did look at the gutters yesterday and saw they were full of leaves...and that did cross ... I say CROSS .. my mind... lol
Girl... you are KILLIN me with your sign!!!! The other day my GF texted me (while drinking wine with a bunch of my GFs) and asked the name of my disease again... I replied "CLUSTER F**K DISEASE", except I spelled it out...cuz I just keep it real...(afraid I will get in trouble here) lol I just can't believe someone else calls it that cuz it is really what it is!!! GRRRRRRR
Funny I have been feelin Fall in the air for about 3 weeks now...and it my FAV time of year too!!!! Lets get our out yellow, brown, and green pom poms and do that happy dance!
Ahhhhhhhhhhhhh I'm so dumb when it comes to all those abbreviations... my daughter makes fun of me all the time for it... lol
retentionish is not a word, but blumpy is... your good mood is contagious.
Hey, Jac, maybe you can create a sales campaign for rituximab. Dd you see the thread talking about the version from India called Reditux? There is even a discount Canadian pharmacy selling it: http://www.saverxcanada.com/search.php?search=reditux vial Now, if you end up doing tv commercials and getting Oscars, don't forget to say hello to your friends here
[edit: it's listed there, I don't know if they actually sell it: http://www.saverxcanada.com/search.php?search=R I assume it'll never be let into the U.S. legally]
During my worst OI (which didn't last long), I would sit my way down the stairs in fear of pitching forward and falling headfirst down the steps. But now I walk on walls and fences... things like that, no problem. Yep, I hope to graduate from here soon I think the last symptom to disappear would be my temperature dysregulation.
Oh yeah, about the Florinef/fludracortisone for OI: I'd think twice about that. As a corticosteroid, it's also somewhat of an anti-inflammatory and a (weak) immune suppressor -- so whatever effects you get from the new drug could get all jumbled up with effects from the rituximab and you couldn't tell which is giving whatever benefit. OTOH, they might make an ideal combination. I guess you never know until you try. Inester7 has been posting that she can exercise well after only 2 days on Florinef. (http://forums.phoenixrising.me/inde...uced-in-cfs-newton-11.9324/page-3#post-294886)
[OTOH = On The Other Hand]
Hey I figured out the OTOH allll on my own... Ilol Will talk to Dr. K about Florinef (thank you)duh... Yah I have seen some knock offs... I am getting it for free now bc I am in the pilot study...but in the future...those may be what I have to do...
Ok...so if I was walking on walls and fences...I would not be HERE... so you are AMAZING... to be hanging around here helping all of us out....XO
Wow....what a great response your having. Thank you for posting about your experiences, you r giving the CFS/ME world such hope. I cannot imagine having this horrible disease for 35 years. I'm crossing my fingers (and toes) that your recovery will b ongoing. BUT PLEASE DON'T OVERDO IT!!!!!!!!
Meeee Too.... Been takin it easy today... slept till noon...and just putzn around the house n made a good dinner...pretty achey from overdoin every muscle in my body yesterday....HATE that....
I am especially pleased to hear that someone who has been ill longer than I have (26 years) is improving. It give me new hope.
Please keep in mind that you have been ill so long that disordered may feel normal to you and normal may feel fat. Since this 'water retention' has come along with you feeling much better it might be wiser to buy bigger pants than to mess with your fluids.
I understand what you are saying...but I have had this fluid problem forever... even in HS when i was a cheerleader...I have not been able to wear shorts or a dress for years now. This is not a new thing... The new wt just came on SO fast after my 2nd infusion of Rituxan along with the sugar cravings and a ramp up of my appetite... I had gotten down to 123 before Rituxan but only bc I was so ill and could hardly eat.... Now I am on a SEE FOOD diet...and up to 132... I'd rather be 132 annnny day and water retention feeling ... so guess more than a 5 lbs...lol lol Had fun doin it tho...now I have to diet again... DAMN... Great prob to have tho!!! I will take dieting anyday over no appetite...
Soooo Sherlock....what have you done to get so much better??? To be able to run, jump, lift and play??? Do tell!! Were you ever bedridden?
And in regard to Retentionish and blumpy... bloated, swollen, none of the words were doin it for me...lol lol
Thanks, Jaq. I don't know how much I'm helping anyone - but I figure that if I've spent the time learning something, it makes sense to pass it on and contribute to the general knowledge pool just as others are doing, including you.
Btw, Florinef makes a person retain more water. That's why people taking corticosteroids often also take a diuretic. But you probably knew that
Well, Jaq, the worst I'd had was being in bed for two days straight. I'd sit my way down the stairs once or twice per day. That would be followed by days on the couch. Then I'd be okay enough to get to the supermarket to not starve That repeated for a few weeks.
When I was mobile, I'd exercise at home with the weights for a minute or so. Then I'd pay the price for a day or two; then when I knew that I was ready I'd start the cycle again. A fixed schedule would have been very wrong. I was doing the exercise because after each cycle I was a little better, more capable. Plus, I really love it - life was boring without it. Gradually, things got better. Taking magnesium was probably the only supplement that I was adding regularly - though I'd always been health conscious previously.
There was a bout of possible viral myocarditis, but I won't go into that.
Things went up and down, but always the trend was up. I've been exercising almost like normal for a year and a half at least. And oh yeah, I haven't had much fatigue or brain fog or whey allergy anymore since taking the (sulfur containing) MSM. I've still got temp and BP dysregulation, swollen nodes still, sometimes mild headaches and always that feeling of something wrong in my head - plus the histamine effects. Never pain.
Are you still zooming along today?
Wow....you are the luckiest person ever without the PAIN...that is the worst part for me... Sometimes I feel like a buzzard has landed on my neck and is sitting there with his talons just dug in... it is horrible...and the rest of my spine burns and hurts too ... as well as knees...and and and... I have always been a healthy conscious/ endorphin exercise junkie as well... Taught aerobics for years and owned part of a fitness center 8 yrs ago... Now I am doing good to take the 10 lb wt here on the floor and do a few reps on my flabby ol 51 yr old arms...and then next day they hurt like hell... I cannot take walks like I used to.. My trend has been to get worse over the years unfortunately... part of which was livin in a place that had a lot of mold and I found out I have the "dreaded" genetic profile for that! So I moved..but that didn't help any... Havin Neck surgery for the Chiari Malformation is what really started the HUGE downfall... Helped a little with migraines but lit a match that I can't put out... Had a 5 level laminectomy - OUCH...and they still say I need the brain decompression...well that ain't a happenin... I would DIE....
I used to take a lot of magnesium until I found out it is BAD if you have Lyme bc it uses it to build its biofilms...and then found out I have the Protomyxoia and that builds its bio films with FAT... Jesus....where does it END... and I am so brain scrambled that I can't remember half of what I need to do....
So how much MSM are you taking?
Not still zooming... getting up soooo dang late NOON... but then again I don't go to bed till 2 or 3. Havin Horrific spine pain today.... I am on a rollercoaster that is sharp zig zag shaped vs S shaped.... But am cooking and have a project daily...not just watching Netflix dramas all day...
I think you would really benefit from a Rife Machine... have you ever looked at them... I got mine for $500 and on Sunday I ran the 10k setting (wellbeing/energy) for about 30 min... wonder if that is why I was so zoomey? Gonna do that again in the next few days...See what happens.
I am gonna get back on MSM...thanks for the nudge...have a whole bottle of it... How much do you take?
Maybe we should communicate privately as not to BORE everyone else...lol
How about starting a thread about Chiari Malformation surgery and giving your experience. It is scary how many people are told to get this surgery and it turns out to be the beginning of a slide downwards.
People need to be educated about how tricky this surgery is and how it is not a panacea!
You can also try a Google Site Search
Separate names with a comma.