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freakyschizogirl
07-23-2011, 12:45 AM
I am coming off Methotrexate, which i've been on for nearly a year now as the top bloke Dr Jayne says i'm still smouldering and need a better drug. His choice is Rituximab over Cyclo for obvious reasons and hopes to give me 2 (i think) infusions as soon as the funding comes through and hopefully off the steroids within 6 months.

He told me surgery wasn't even an option for me at the moment for my saddle nose and to put me off for at least 9 months if not 18:sad:. But did tell me a stern NO to fillers as they are just plastic and from a wegs point of view its a really bad idea. Bit deflated by that but i know they are only doing whats best.

Back again in 2 months and hopefully start the Rituximab as soon as funding is done. Whoop Whoop!

Oh and vdub, if you're reading this i took a few photos of Duxford as we drove past this morning, i'll put them on my profile page laters. x

DEE
07-23-2011, 12:55 AM
Good News Sam, glad things are been sorted out for you .I had the plastic fillers put in twice before dxt no bother having in but did nothing for my nose . As soon as they came out everthing started again !! DEEx

freakyschizogirl
07-23-2011, 12:57 AM
Thanks Dee, shame the fillers didnt work for you.

vdub
07-23-2011, 02:30 AM
Oh and vdub, if you're reading this
Of course, I'm reading this! And, thanks for thinking of me. Duxford is definitely on my bucket list and now, with you there, I have an additional reason to see it.

freakyschizogirl
07-23-2011, 02:43 AM
Of course, I'm reading this! And, thanks for thinking of me. Duxford is definitely on my bucket list and now, with you there, I have an additional reason to see it.

Oh you flatterer!! :blushing:

marta
07-23-2011, 03:19 AM
Yeah Sam

When I was an 'athlete' (in my own mind) in my past life (a year and some ago) I'd take a long run or a long bike ride or a long cross country ski in a similar fashion to what you've been dealt with at the docs. Small incremental goals. You have a couple of great ones before the nose issue and once you get them it will definitely be time for celebration. So you have great news. Three big reasons to celebrate before you get to celebrate the nose job. For any person that is great, but for a WegHead it's even better. I'm happy for you! Very happy for you!

freakyschizogirl
07-23-2011, 06:55 AM
Thanks Marta...for me its too easy to dwell on the bad stuff but you've just shown me i should be really happy as the end of Pred is looming in the distance.

And hopefully weight loss will follow, i've never been thin but hopefully thinner will happen for me.

Sangye
07-23-2011, 07:53 AM
I'm very relieved to hear all this, Sam. It can be really tricky to tell when Wegs is smoldering, even for the Wegs specialists. Kudos to Dr Jayne for changing your treatment and giving you great advice.

And "Hot diggety" about getting off pred in 6 months. We'll have to celebrate that! :thumbsup:

freakyschizogirl
07-23-2011, 08:25 AM
And "Hot diggety" about getting off pred in 6 months. We'll have to celebrate that! :thumbsup:

Yes indeed, drinks and nibbles on me!

Feel so privileged to have met Dr Jayne (finally) Hope i get to see him again next time but i doubt it.
The last two times i have been they have asked me if i've had any infections (i havent), i take it my markers must be high again but they didnt tell me, suppose i should've asked!

Was completely awestruck i saw the top guy. I came home and googled how much 2 Rituximab infusions are...3000!! Blimey. Fingers crossed the funding comes through quickish...Dr Jayne said they have a lot more last sucess with Rituximab...? Cant wait to lessen my drugs...i really will end the year with a bang if i do!

freakyschizogirl
07-24-2011, 04:57 AM
Photos up vdub x

vdub
07-24-2011, 10:41 AM
Where would that photo be?

freakyschizogirl
07-24-2011, 08:53 PM
on my profile page....have a lookie

vdub
07-25-2011, 12:55 AM
Well that's way cool. We just need to find the time now. We've always wanted to go see the place. My father-in-law made it back there several times for reunions.

freakyschizogirl
07-25-2011, 03:36 AM
That sounds soo cool. As we were driving back the had a plane out, which i presume they were about to fly but didnt see. Did see several jumbo's landing at Stansted tho!

JanW
07-26-2011, 12:43 AM
Glad you got the advice you did about the fillers. And it would be a shame to have the surgery only to have it collapse again because of active disease, you know?

freakyschizogirl
07-26-2011, 02:37 AM
Yeah JanW, i was very reassure by Dr Jayne's "NO" simple and to the point. And he said when the time comes he would tell to the surgeon to use cartilige from the rib and not ear like he was originally suggesting.

JanW
07-27-2011, 12:18 AM
Dr. Lebovics does takes it from the rib as well, because then they can get bone as well as cartilage, which makes it stronger. In the past, they have taken it from all over the body (even the skull), but with the ribs in women anyway, your scar will be under your breast so invisible.

freakyschizogirl
07-27-2011, 02:14 AM
Thumbs up for invisible!!

freakyschizogirl
09-27-2011, 06:11 AM
Hey all, just a mini update and a bit of good news for me...My funding has been approved by the primary care trust and i can finally start my Rituximab infusions! No date booked as yet but very soon, hopefully, and could be withing the next 2 weeks if i'm lucky!


On a side note, i just wondered if anyone else suffers with Neuralgia in the face? mine is always across my forehead. I've been on Amitriptyline for a few years now which numbs the pain, every now and then i slip and forget to take it and end up with pain which feels like a headache but wont go away no matter how many drugs i take, like tonight.
I've read a few bits online about Neuralgia and it seems some forms of neuralgia can be treated with certain proceedures etc...thinking i should ask Addenbrookes to look into this for me. As i just accepted Neuralgia as a diagnosis and didnt really think about the cause or long term relief.

Anyways...thanks for reading. x

Geoff
09-27-2011, 06:18 AM
Hey Sam, great news about getting your funding. Did you get a call from Stella?

freakyschizogirl
09-27-2011, 06:28 AM
I did get a call from Stella, she said to expect a call about the appointment.

I am so happy, i'd be out celebrating if i wasn't at work this evening!!

Sangye
09-27-2011, 08:11 AM
Hey all, just a mini update and a bit of good news for me...My funding has been approved by the primary care trust and i can finally start my Rituximab infusions! No date booked as yet but very soon, hopefully, and could be withing the next 2 weeks if i'm lucky!


On a side note, i just wondered if anyone else suffers with Neuralgia in the face? mine is always across my forehead. I've been on Amitriptyline for a few years now which numbs the pain, every now and then i slip and forget to take it and end up with pain which feels like a headache but wont go away no matter how many drugs i take, like tonight.
I've read a few bits online about Neuralgia and it seems some forms of neuralgia can be treated with certain proceedures etc...thinking i should ask Addenbrookes to look into this for me. As i just accepted Neuralgia as a diagnosis and didnt really think about the cause or long term relief.

Anyways...thanks for reading. x
Sam, I had mild to moderate facial neuralgia last year for a bit. After a couple treatments by my chiropractor it resolved completely. The nerves that supply the face originate in the upper cervical region of the neck and are easily compressed by any misalignment.

Hammy8241
09-27-2011, 10:35 AM
How long have you waited to hear about your funding Sam?

freakyschizogirl
09-27-2011, 04:16 PM
Thanks for that Sangye...will look into a chiropractor..my forehead is even worse this morning!

Hammy i've waiting just over 3 months. Nothing moves quick in this country with the PCT. Stella said to me its very much about where you live as to how long it takes and they treat people all over the country.

Hopefully not long now.

pberggren1
09-28-2011, 12:07 PM
It took my government 3 months to approve the rtx. If I had 15 grand I could have got it right away. I have many friends and relatives that have this sort of cash just laying around. Oh well, can't change the past.

freakyschizogirl
10-06-2011, 09:31 AM
Just thought i'd update ya all again. Rituximab infusion is all booked for next friday, eek!! And my new boyfriend INSISTED on coming with me, which relieved my sis who always moans about the drive to Addenbrookes and the waits for doctors.

pberggren1
10-06-2011, 10:23 AM
Party time!!!!!

Psyborg
10-06-2011, 10:32 AM
Awesome news Freaky :)

Sangye
10-06-2011, 02:32 PM
That's great! Your boyfriend sounds like a very supportive guy.

freakyschizogirl
10-06-2011, 05:24 PM
Thanks bob and phil, party time indeed!

And yes Sangye he is, he's not getting away from me now.

Hammy8241
10-06-2011, 05:33 PM
Just thought i'd update ya all again. Rituximab infusion is all booked for next friday, eek!! And my new boyfriend INSISTED on coming with me, which relieved my sis who always moans about the drive to Addenbrookes and the waits for doctors.

He's only going to oggle the nurses:thumbup: Fingers crossed that it all goes well for you Sam, do let us know.

Geoff
10-06-2011, 06:00 PM
Great news Sam!! We'll be thinking of you on the 14th. Are you an outpatient or in for a couple of days?

freakyschizogirl
10-07-2011, 03:25 AM
Thanks Hammy, if he does i will kill him.

And Geoff i'll be a day patient on one of the wards under Dr Jayne...who knows may see him, may not.

Geoff
10-10-2011, 06:41 PM
Fingers crossed that this will be another big step along the road to remission for you Sam.

Watch out for the tea from the drinks trolley, it was so weak I could see the bottom of the cup!!

Hammy8241
10-10-2011, 08:31 PM
Watch out for the tea from the drinks trolley, it was so weak I could see the bottom of the cup!!

Moan, moan moan!! Some people! I know you are still paying for the wedding but don't be so tight. Bring along one of those used T-bags you have drying over your sink and help save the NHS:laugh:...... or was it one of your donations they made the tea from?


Is the world ready for a fully fit Sam?? That IS the question? Answers on a postcard to..........

Geoff
10-10-2011, 11:01 PM
Ha Ha Paul, you sussed me out!!....or are you getting a bit tetchy with your daughters wedding looming on the horizon??!!!!

Hammy8241
10-11-2011, 01:43 AM
I know what I'm doing with my daughters wedding....... I offered them a ladder and one way tickets to Gretna Green!!

Gretna Green weddings history (http://www.gretnamarriages.co.uk/gretna_marriages/Gretna_Green_History.html)

For those who don't know what the heck I'm refering to.:ohmy:

Chris G
10-12-2011, 03:00 AM
Good luck with the rtx Sam!! I hope it works wonders for you.

freakyschizogirl
10-12-2011, 07:24 AM
Is the world ready for a fully fit Sam?? That IS the question? Answers on a postcard to..........


Good question Hammy (almost didnt recognise your avatar!)

Sad news, i have developed a cold over the weekend...i'm guessing they wont do the infusion now.

Sangye
10-12-2011, 01:58 PM
When I was doing the last round of rtx I got a cold before we began. Dr Seo said it was safe to proceed as long as it wasn't a severe infection, or becoming pneumonia.

freakyschizogirl
10-12-2011, 07:48 PM
Really sangye? I think you've just made my morning!
I will ring Adds now to double check!

freakyschizogirl
10-12-2011, 08:41 PM
Just rang them and yes, i can still have my treatment!!

mishb
10-12-2011, 10:22 PM
That's great news Sam. Hopefully your cold doesn't linger for too long.
Good luck on Friday and I hope you will then start to enjoy the benefits that it may bring your way...as some others have.

Until then, take care and ....

LisaMarie
10-13-2011, 12:04 AM
Good luck Sam with your RTX.....and may remission come quickly....be thankful for your supportive boyfriend.....and if he does oggle the nurses there is a tender spot right behind the ear lobe on that bone that with the right amount of pressure will bring him to his knees...lol...i t is an important bit of info that few men know about and it leaves no marks...so men stop reading this so our secret does not get out...lol...hope your cold resolves soon...keep us posted and again congrats on getting approved...
are you on bactrim ds for prophayltic for infections???? if not you may want to start once the RTX is given

Sangye
10-13-2011, 03:16 AM
Yay for you, Sam!! :thumbsup: (Makes me glad I had that cold because I wouldn't have known it otherwise)

freakyschizogirl
10-13-2011, 08:55 PM
Thanks Michelle and LisaMarie. And i am sooooo grateful for my boyfriend, he doesnt even realise how amazing he is. I am not on Bactrim and it hasnt been discussed with any of my doctors but will ask at my next appointment.



Yay for you, Sam!! :thumbsup: (Makes me glad I had that cold because I wouldn't have known it otherwise)

Indeed about the cold Sangye. Huge relief for me.

I will most likely be posting while in the hospital bed tomorrow, i will be so bored for 6 hours with nothing to do!!

ScreaminMeanie
10-14-2011, 03:33 AM
Fingers crossed for you, Sam! I had rtx almost six months ago, and it was pretty much a non-event. I took books with me to stave off the boredom.

freakyschizogirl
10-14-2011, 05:52 AM
I got one book, my ipod and my boyfriend - and i think he's bringing his laptop so it should be an interesting day!

drz
10-14-2011, 08:11 AM
E books are great for such events.

Sangye
10-14-2011, 09:46 AM
I always wind up sleeping for at least half the treatment. The benadryl really knocks me out.

freakyschizogirl
10-14-2011, 05:30 PM
Fingers crossed it knocks me out too! I will post later on. x

jola57
10-14-2011, 05:51 PM
Good luck, hope it goes smoothely

freakyschizogirl
10-14-2011, 11:36 PM
Thanks Jolanta.

Reached the half way point with no side effects apart from boredom!

freakyschizogirl
10-14-2011, 11:36 PM
Thanks Jolanta.

Reached the half way point with no side effects apart from boredom!

Hammy8241
10-14-2011, 11:51 PM
Thanks Jolanta.

Reached the half way point with no side effects apart from boredom!

and the side affect of double posting:flapper:

delorisdoe
10-15-2011, 12:12 AM
That is funny

delorisdoe
10-15-2011, 12:12 AM
that is funny

freakyschizogirl
10-15-2011, 07:26 AM
lol Leigh!!

Well i'm all done! Took 5 hours amd no side affects or reactions. My boyfriend was excellent and only left my side once to go to the loo and get himself something to eat. I have given my cold as a thank you to him, bless.

Feeling some ache in my thighs tonight which i presume is the biggie dose of steroids. Cant wait to see how i wake up tomorrow.

Nursing staff were, as ever, brilliant at Addenbrookes. Just feel sorry to the ward i was on as my lovely mucus cough is still hanging on, i did get some looks!

Thanks everyone for your messages. x :hug1::thumbsup:

drz
10-15-2011, 07:51 AM
Glad it went all right for you. I just did some reading on these nice drugs we get to take and was horrified to read about some of the risks and potential side effects. Now I understand why one person advised me to not read that stuff if you have to take the drug (or die), just to report any new symptoms or feelings so doctors can sort out if it is serious and requires any action.

freakyschizogirl
10-15-2011, 07:53 AM
Oh, i know drz...and its such a new drug too, they dont really know what the long term health implications are...but if it keeps me in remission its ok by me!

Sangye
10-15-2011, 02:14 PM
Glad you made it through and are feeling fine!

mishb
10-15-2011, 08:10 PM
I'm glad everything went well Sam.
I hope you start feeling better and better with each day.

Take it one step at a time and you will be dancing a jig with your new man in no time.

Trudy
10-16-2011, 12:37 AM
Hope this treatment is the answer! I'm happy it went well for you, and that you have such a great guy to be with.

Is this your last treatment or were you to have the 4 series?

Stay well
Trudy

freakyschizogirl
10-16-2011, 08:47 PM
Hi Trudy, I'm having 2 and then a follow up dose in 6 months.

Geoff
10-17-2011, 01:03 AM
Nice one Sam, now enjoy this beautiful Autumn weather and get rid of that cold!!

freakyschizogirl
10-17-2011, 04:45 AM
Cold is almost gone Geoff, enjoy your time in the sun!

pwc51
10-17-2011, 05:00 AM
Hi Freakysg - Do they plan to do it every 6 months or is it simply a second dose at 6 months? I had the 2 infusion process back in March this year but nothing else is currently scheduled although I was told it would be the 4 dose process next time, whenever that is!

I cannot determine the criteria whereby they dose me again - does anyone have any information / views etc?

vdub
10-17-2011, 05:22 AM
I'm glad things worked out! I hope the rtx does it's job....

freakyschizogirl
10-17-2011, 07:39 AM
Pwc51 I'm not sure. I know I'm getting the 2 then follow up dose in 6 months. Not talked about what comes next.

Hey vdub, think of you now everytime I go past Duxford on my way to Adds

Sangye
10-17-2011, 11:16 AM
I cannot determine the criteria whereby they dose me again - does anyone have any information / views etc?
It's very--wait for it-- individual. HA! Don't you get tired of hearing that? :laugh:

pberggren1
10-17-2011, 11:21 AM
It's very--wait for it-- individual. HA! Don't you get tired of hearing that? :laugh:

Damn you.....lol.....don't make me laugh like that, it hurts......lol.

Sangye
10-17-2011, 11:44 AM
Ouch! I've had pneumonia many times and remember that! :ohmy:

LisaMarie
10-18-2011, 11:31 AM
Sam
Glad treatment went well .....I think I got your cold......Fever 101 nasal congestion and chest congestion......fever gone saw doctor today labs done wbc ok but CRP up so they are thinking it may be a flare ...chest xray tomorrow if I am not any better....good luck with your next treatment of RTX......and ditto on your great support system...have a great week

elephant
10-18-2011, 11:38 AM
Lisa Marie, feel better soon.

Chris G
10-19-2011, 02:53 AM
Glad it went well Sam. I will have a second round of rtx at the 6 month mark too - in November. Hoping to get a phone call any day to schedule it!

Sorry you've caught a cold though - that sucks. I'm just getting over one myself. The weird thing is, that it seemed really mild, and I did not get the usual cough that accompanies every cold I've ever had in my ENTIRE life!! I believe that my history of weeks of coughing after a cold, was little wg flare ups, each and every time. Does anyone else notice any differences similar to this, since their wg treatment has begun?

freakyschizogirl
10-22-2011, 11:49 PM
Sad news for me, my mum who has RA and been on MTX and a host of other drugs is now being offered Rituximab. The waiting list at my local hospital is quite long and my mum wouldnt be confortable for the 30min ride to Addenbrookes.

Did make me laugh as i said, "HAHAHA! I got it before you!" We are constantly in a state of competition over AI diseases.

She's back on the MTX this week in preparation for the Riruximab. Fingers crossed this does this business for her, as well as me, havent seen her pain free or less stiff for nearly 2 years. Losing her independance was the hardest thing for her, wishing she can get back to work one day...while she is still young enough to do so.

I'm back for my second infusion on Friday...

DEE
10-23-2011, 01:28 AM
HI Sam
Wishing you all the best for Friday in advance as my laptop decided to it does not want to play anymore . So having to uses hubby's when he is not using it. Hope our mum gets sorted too.
Not been on much this week ,had flu shot last saturday was alright sunday but by monday !!!!. went to doc tues and in bed while friday.Taken etc anti b to sort me out . Was suppose to have pnuemonia next week ,dont think so just now :}. Take care of you DEE x

Sangye
10-23-2011, 02:03 AM
Sam, how sad that your mom has to wait like that! Unlike Wegs joint pain, RA pain means joint destruction. :sad: Is there no way to fix up a comfortable spot in a backseat for her to get to Addenbrooke's? I'm sure you've thought about all the options.

Dee, was that a seasonal flu shot or a combo flu/ H1N1 shot? I'm sorry you had that reaction but I can't say I'm surprised. :glare:

DEE
10-23-2011, 04:06 AM
Combined ,have had it the last two years no problem !!

freakyschizogirl
10-23-2011, 11:19 AM
She won't even consider going to Addenbrookes because of the journey and discomfort even tho I strongly believe she would get treated better and faster there.

freakyschizogirl
10-27-2011, 09:54 AM
Hey all.

Feeling a little outta control tonight. Its easy to blame to steroids but i had moods swings i couldnt control and unfortunately my boyfriend got the brunt of it. It was a silly little squabble that just escalated as my mood flared. I feel so awful, even tho i did warn him what the steroids could do, he's still being amazing and telling me i'm not alone and he's there for me. Doesnt stop my guilt at bringing this on him. And hoping that i'm not at the top of another downhill spiral...i hate not feeling in control of my mind, i'll never control my body and i've accpeted that.

Guess its a good thing my counselling sessions have started this week and i'll have something to talk about next time. Hopefully i can get a handle on this before it gets too outta control.

BrianR
10-27-2011, 10:44 AM
Hey all.

Feeling a little outta control tonight. Its easy to blame to steroids but i had moods swings i couldnt control and unfortunately my boyfriend got the brunt of it. It was a silly little squabble that just escalated as my mood flared. I feel so awful, even tho i did warn him what the steroids could do, he's still being amazing and telling me i'm not alone and he's there for me. Doesnt stop my guilt at bringing this on him. And hoping that i'm not at the top of another downhill spiral...i hate not feeling in control of my mind, i'll never control my body and i've accpeted that.

Guess its a good thing my counselling sessions have started this week and i'll have something to talk about next time. Hopefully i can get a handle on this before it gets too outta control.

I am sure you will handle everything just fine. As for your boyfriend, just put a pint of beer and the TV remote in his hand and he'll be happy as a clam. And remember, men do not posess any sort of memory. :w00t:

freakyschizogirl
10-27-2011, 10:48 AM
I am sure you will handle everything just fine. As for your boyfriend, just put a pint of beer and the TV remote in his hand and he'll be happy as a clam. And remember, men do not posess any sort of memory. :w00t:

lol this made me laugh Brian! And i hope your right and he forgets this as soon as possible. He's still taking me to Addenbrookes this week for that second infusion, so i guess i better be ncie to him!

Shannon
10-27-2011, 12:24 PM
OMG! Prednisone, no one should be held accountable for anything while on this drug. :) Did you get the full menu of side-effects? The docs spoon fed me the info on side-effects and something new would happen and I remember my nurse friend saying, 'oh that's the Prednisone'. After being on a 60 mg daily dose for a long time I think I just turned round all over. I am SO happy to hear you are being weened off. It's a day to certainly circle in red on your calendar and celebrate.

drz
10-27-2011, 02:10 PM
OMG! Prednisone, no one should be held accountable for anything while on this drug. :) Did you get the full menu of side-effects? The docs spoon fed me the info on side-effects and something new would happen and I remember my nurse friend saying, 'oh that's the Prednisone'. After being on a 60 mg daily dose for a long time I think I just turned round all over. I am SO happy to hear you are being weened off. It's a day to certainly circle in red on your calendar and celebrate.

I keep learning about new side effects from the prednisone (Pregnantzone stupid pills) and unfortunately am gaining new insight into what Jack meant about prednisone wrecking his body. Like the doctors all say it is horrible stuff, BUT without it you would be dead now! There are mental health diagnoses you can get from prednisone but don't know if they will qualify you for either disability or "insanity defense" in court. I think it will work though with an understanding friend and we can give you a good reference if needed.

drz
10-27-2011, 02:11 PM
OMG! Prednisone, no one should be held accountable for anything while on this drug. :) Did you get the full menu of side-effects? The docs spoon fed me the info on side-effects and something new would happen and I remember my nurse friend saying, 'oh that's the Prednisone'. After being on a 60 mg daily dose for a long time I think I just turned round all over. I am SO happy to hear you are being weened off. It's a day to certainly circle in red on your calendar and celebrate.

I keep learning about new side effects from the prednisone (Pregnantzone stupid pills) and unfortunately am gaining new insight into what Jack meant about prednisone wrecking his body. Like the doctors all say it is horrible stuff, BUT without it you would be dead now! There are mental health diagnoses you can get from prednisone but don't know if they will qualify you for either disability or "insanity defense" in court. I think it will work though with an understanding friend and we can give you a good reference if needed.

freakyschizogirl
10-27-2011, 09:46 PM
lol thanks drz.

Still feeling like super bitch this morning.

Shannon, i am aware of the Pred side affects, doesnt help me feel any less horrible about biting my boyfriends head off. Though he was well and truely told before i had my infusion what pred could do...i dont think he was prepared for it! Bless him. He's gonna be getting a certificate and medal by the end of this.

Sangye
10-28-2011, 02:04 AM
I know what you mean, Sam. It's really hard to bite my tongue when every cell in my body is telling me to get angry. Therapy has helped a lot, though. One of the best strategies I've developed is to just not say anything when I'm feeling pred-icated. I tell others that's what is going on, and to please not push me to talk, etc.... Hugs to you.

freakyschizogirl
10-28-2011, 05:24 AM
Thanks Sangye, i didnt even realise it was Pred induced until i'd calmed down.
Told my boyfriend to google pred and its side effects so maybe he'll be able to spot it next time.

Feeling a bit better this evening (chocolate helped, lol.)

Infusion day tomorrow, wahoo!

Psyborg
10-29-2011, 12:31 AM
Sam, I had to go on Citralopram to help with the anger issues I was having on Prednisone. I was having uncontrollable anger outbursts. It was strange because I could see through the entire episode that I was being completely irrational but was incapable of stopping the actions.

delorisdoe
10-29-2011, 12:34 AM
I am sure you will handle everything just fine. As for your boyfriend, just put a pint of beer and the TV remote in his hand and he'll be happy as a clam. And remember, men do not posess any sort of memory. :w00t:


lol nor do they listen so chances are he is unaware of what was said.

delorisdoe
10-29-2011, 12:37 AM
Sam, I had to go on Citralopram to help with the anger issues I was having on Prednisone. I was having uncontrollable anger outbursts. It was strange because I could see through the entire episode that I was being completely irrational but was incapable of stopping the actions.

I ran a business on 100mg of prednisone daily for months. It was NOT pretty. My boss does not remember those days without laughing. According to her I took care of a few of those employees that you always wish theyd just quit.

freakyschizogirl
11-01-2011, 08:04 AM
Hi all, just a quick query...

How long after a Rituximab infusion can you have a flu jab? In my handy little leaflet it says it will still be effective if you take it but just wondered if I should wait a few weeks?

Second infusion wewnt without any trouble - tho I was ITCHING to get outta there after the last hour.

drz
11-01-2011, 11:41 AM
Hi all, just a quick query...

How long after a Rituximab infusion can you have a flu jab? In my handy little leaflet it says it will still be effective if you take it but just wondered if I should wait a few weeks?

Second infusion wewnt without any trouble - tho I was ITCHING to get outta there after the last hour.

I read recently that flue shots were far less effective than previously thought. Because of our poor immune system it is more uncertain that we WEG patients will benefit from it. My last Wegs expert and other doctors I saw this Fall all agree though that I should take it even if the chance of it helping is only small since any thing that reduces our health risk is recommended. The research on bad side effects is considerable inconclusive so far but some people say they had bad reactions to flu shots and won't take them anymore.

freakyschizogirl
11-05-2011, 05:25 AM
I am now saying goodbye to Methotrexate...stopping from today! Goodbye and good riddance.

I know have a 2 month follow up appointment where they will see how well the RTX is working for me...and hopefully decrease the pred from then.

ScreaminMeanie
11-05-2011, 05:41 AM
I'm so happy for you.......and so jealous!!! I wanna say goodbye to mtx, too!

(Especially since there is apparently a nationwide shortage of mtx injectable and I have to go back to taking the pills, which seem to cause a lot more side effects for me. :sad: )

Chris G
11-05-2011, 10:29 AM
Sam - If I had to guess.......and this is just a guess......I'd say get the flu shot asap. Here's my reasoning...........if you just finished your 2nd round of rtx, your immune systems may still have some life left in it - enough to learn how to fight the flu. If you wait a few weeks to get the flu shot, your immune system will be further supressed, and might be less likely to create antibodies against the flu. Sounds like a reasonable theory to me! But, guess what.........I'm not a doctor. :ohmy:

I just got my flu shot on Wednesday. Had rtx in May, and am having another round of rtx in December. Hoping my freaky body will stop fighting itself, and start fighting invisible flu germs!

Glad to hear your rtx went well, AND that you've kicked the nasty mtx habit!!! I hated it too.

freakyschizogirl
11-05-2011, 08:14 PM
lol thanks for the advice female chris!

I have booked a week off work as i seem to be really fatigued and my get up and go has got up and left. I will book my flu jab for this coming week.

Thanks ScreaminMeanie - so happy to get rid of the MTX too, tho i barely suffered any side effects from taking the pills (a few episodes of nausea but that was it)

Sangye
11-06-2011, 01:13 PM
It makes absolutely no sense to get a vaccine while rtx is still working. Rtx wipes out all your B cells--the very cells that make antibodies. So not only are you not likely to make any new ones, but you're also losing your antibody history that you've acquired since you were born.

Al
11-06-2011, 02:13 PM
It makes absolutely no sense to get a vaccine while rtx is still working. Rtx wipes out all your B cells--the very cells that make antibodies. So not only are you not likely to make any new ones, but you're also losing your antibody history that you've acquired since you were born.

Sangye is right: Vaccines are for those who still have intact major components of their immune systems. This is not to mention that the research is pretty sketchy regarding the efficacy even for healthy people.

Al

elephant
11-07-2011, 03:50 AM
I was never immunzided for MMR shots because back then the docs thought I had Rhuematoid arthritis. Since the Measles, Mumps and Rubella shot is a live One, anyone who is on immunosuppresant drugs cannot get the MMR vaccine. I was watching CNN a couple of weeks ago and they were saying that the CDC and other organizatons have seen increase in measle cases. That is concerning because it could kill you.

freakyschizogirl
11-07-2011, 04:47 AM
In my handy Rituximab leaflet it says and recommends you should still have your flu vaccination even after you've had the infusions.

pberggren1
11-07-2011, 04:57 AM
In my handy Rituximab leaflet it says and recommends you should still have your flu vaccination even after you've had the infusions.

The leaflet is sadly mistaken........lol

Al
11-07-2011, 05:04 AM
In my handy Rituximab leaflet it says and recommends you should still have your flu vaccination even after you've had the infusions.

In theory, since te flue shot is not a live-virus deal, it should be okay. This doesn't meant that many folks don't have adverse reactions. Be sure to report feeling even just a bit crummy.

Al

freakyschizogirl
11-07-2011, 05:58 AM
Think i will call Addenbrookes for a difinitive answer tomorrow - just to be sure. But thanks for all your info guys.

drz
11-07-2011, 11:56 AM
I was advised to get the flu injection even though I was told they are uncertain if it does much good given our poor immune system. They said they still think the chances are better it will help you than harm you, but more research on this question seems to be underway I guess.

Chris G
11-08-2011, 03:59 AM
I was advised to get the flu injection even though I was told they are uncertain if it does much good given our poor immune system. They said they still think the chances are better it will help you than harm you, but more research on this question seems to be underway I guess.

My docs highly recommended that I get the flu shot. I did ask about the effectiveness while my immune system is supressed, and each person I asked said that while it may not offer me as much protection as it would a person with a normal immune system, some coverage is better than none. I have 2 school age boys who bring home germs by the truckload! I decided that I have to protect myself in any way possible. Worse, I'm having another round of rtx next month - going into the winter months with my immune system crippled, scares me!!

freakyschizogirl
02-13-2012, 09:02 PM
Hi all

Not back from Adds but going back tomorrow (hope to see Geoff too)

When i go back i will find out if i am in remission thanks to the RTX. I'm so so nervous! What if i'm not? What if i am!

mishb
02-13-2012, 10:23 PM
How exciting.

I hope it's fantastic news. :thumbsup:
Do you feel good?? Surely that would be a telltale sign.

My fingers are crossed for you

Psyborg
02-13-2012, 11:38 PM
Good luck, I hope you get good news :)

KathyB
02-14-2012, 03:26 AM
Hope you hear good news!!

KB

Geoff
02-14-2012, 06:54 AM
Good Luck Sam, and fingers crossed for good news!!

Are you taking the 'Panther' up the M11??

Hope to catch up with you there for a coffee.

Al
02-14-2012, 07:01 AM
Do well, Sam. We are rooting for you!

Al

freakyschizogirl
02-14-2012, 11:35 PM
"Clinically in remission"

I have questions, but will save them for later.

Was lovely to see Geoff and Linda too xx

pberggren1
02-15-2012, 01:47 AM
Totally Awesome!!!

Looking forward to questions and details.

Geoff
02-15-2012, 01:55 AM
Great news Sam! and likewise good to meet up with you and Stuart.
1542

Weggies United!!!

freakyschizogirl
02-15-2012, 10:06 AM
Great news Sam! and likewise good to meet up with you and Stuart.
1542

Weggies United!!!

Brilliant photo Geoff - eagle-eyed people will notice Dr Jayne's name behind us!

Yep, Remission.

So mixed about this! Been given the remission status before only to have it taken back when Wegs was smouldering. I think when i go back in May and the remission is holding i will believe it.

I expected to feel different in some way, i dunno how eactly, but like i said to Stu when i was sitting there having my infusions you'd think i'd feel differently with a litre of RTX coarsing through my body.

Typical of me i come out and think of questions i wish i'd asked!

My very helpful Doctor gave me a print out of my last 4 blood tests taken since July last year. What exactly am i meant to be looking at here? - In July 2011 my PR3 was 35, it went up to 69 and as of last Novemeber its back down to 50. What a "normal" person's PR3?
I'm still positive for ANCA but that didnt surprise me. Doctor thinks i'm slightly anaemic too - no surprises here either. What else should i be looking at on blood test results?

My next RTX is booked in for April and back to Adds in May. Doc says 6 monthly RTX for 2 years.

I can also now taper my pred too, so relieved about this. Been sitting at 5mg for a very long time now. Will start tapering tomorrow!
The doctor was also very cunning, she said that now she had said i can taper my preds that i needed to lose weight. She wants me to lose 7lbs by my next appointment. :sneaky::rolleyes1: She said i'd feel much better if i did. We'll see.

I will probably think of more things i want to know and ask more questions tomorrow. Thanks guys for being there with me!

pberggren1
02-15-2012, 10:57 AM
My PR3 right now is 0. But it has been as high as 40 when I am flaring. So maybe your PR3 is just not reliable.

Other blood tests that I follow are CRP, ESR, CBC, WCC, Creatinine, and Urinalysis.

What is your BMI Sam? If it is really high then I can see your docs concern. Do you have a blood pressure monitor at home? Good idea to get one to monitor ones BP. Do you have your lipids tested as well?

Al
02-15-2012, 12:33 PM
Good report, Sam!

Phil, why do you monitor WCC? I thought your were not lon CTX....

Al

pberggren1
02-15-2012, 02:29 PM
WCC is always good to monitor.

freakyschizogirl
02-15-2012, 08:34 PM
What exactly does PR3 count? And how is it relevant?

delorisdoe
02-15-2012, 09:41 PM
especially for someone like you who catches every strange infection that exists

Sangye
02-16-2012, 02:39 AM
Congratulations, Sam! I hope this remission sticks for you. :smile1:

pberggren1
02-16-2012, 06:32 AM
PR3 is your C-ANCA Sam. It is very relevant. But maybe it is not a reliable marker for you. Gotta discuss this with your doc and look over past labs to see.

Hammy8241
02-16-2012, 09:51 PM
Well Sam , congrats on achieving remission but that was the easy bit - now loseing weight...................thats another story:w00t:

Psyborg
02-17-2012, 02:58 AM
I'm in the same boat Sam, I was in remission then flared, in retrospect I don't think I was ever in remission the first time. I do think that next week when I go up they'll tell me I'm officially there, I feel better than I have in about 2 years. Good luck with the continued tapering. And I'm very happy for you :)

freakyschizogirl
02-17-2012, 05:56 AM
Well Sam , congrats on achieving remission but that was the easy bit - now loseing weight...................thats another story:w00t:

Thanks Hammy - i'm not so sure myself.

I'm really quite stubborn, if i lose weight i want it to be for me because i decided too - not because i've been told to by a doctor. And i'm not even interested in how much weight i lose i just wanna be healthier and fit into nicer clothes. When i feel comfortable in a certain dress size then i will think i have achieved something. I never will conform to a bmi chart, I've been fat all my life and dont expect that to change. If i did lose a hefty amount of weight it would leave me looking gaunt and i dont want that!


We'll see tho ay? :thumbsup:

Thanks Bob, hoping we can share this experience together! Living in remission land is odd - not quite sure of the territory!

rif
02-17-2012, 06:24 AM
Hi Sam

Hope the funding comes through fairly soon so you can start the Ritux. Here in Derby there is no delay as Ritux has already been approved. The Renal Department who authorise the usage were already using it to treat several different AI dissorders and they were the ones who gave the go ahead for infusions when my son was initially diagnosed in March 2009. They also mentioned recently that the actual cost of the drug had actually gone down. :smile1:

Rif

freakyschizogirl
02-17-2012, 08:48 PM
Rif when i researched it, the apparent cost to the NHS was 3000 for 2 infusions.

rif
02-18-2012, 12:50 AM
HI Sam

Think it is now slightly less according to Consultant, this may be due to becoming a drug of choice and being used on trials for WG usage.

Rif

freakyschizogirl
02-18-2012, 02:25 AM
Oh...i feel slightly more cheap now...lol

Psyborg
02-23-2012, 12:14 PM
Sam, just went to Cleveland yesterday and I'm officially in remission again as well. I think I believe it more this time as I feel the best I have in a good long time. Let's keep our fingers crossed :)

elephant
02-23-2012, 12:41 PM
Great new you two that your in remission!

freakyschizogirl
02-23-2012, 06:25 PM
Fantastic news bob! Was thinking of you yesterday. How do ya feel?

Psyborg
02-24-2012, 01:36 AM
I feel great...it's weird. I'm amazed at what i got used to, and at the same time I'm wondering if I'm even remembering it accurately. But this time I have no doubt that I do feel better. Going to have to turn up excercising again...I'm in deplorable physical shape from an endurance perspective.

Al
02-24-2012, 06:40 AM
These are great reports from both of you! Now, get back to work...!

Al

freakyschizogirl
02-24-2012, 09:32 AM
These are great reports from both of you! Now, get back to work...!

Al


No :flapper:

pberggren1
02-24-2012, 12:32 PM
Gotta love the R word.

Sangye
02-24-2012, 03:09 PM
Sam, just went to Cleveland yesterday and I'm officially in remission again as well. I think I believe it more this time as I feel the best I have in a good long time. Let's keep our fingers crossed :)

That's fantastic, Bob!! :thumbsup::hug3:

freakyschizogirl
03-12-2012, 10:39 PM
Hi all, just a quick question...

I seem to be getting increased mucus in my wind pipe and its causing me to cough to clear. When i breath in you can hear the obstruction.

Should i be worried and get this checked out or could it just be complications from my sinus involvement (i have pretty moderate post nasal drip)

Sangye
03-13-2012, 03:09 AM
I think it's always good to get changes checked out. It's most likely from your post nasal drip but lung issues have to be ruled out.

freakyschizogirl
03-13-2012, 10:55 AM
I think it's always good to get changes checked out. It's most likely from your post nasal drip but lung issues have to be ruled out.

Thanks Sangye, its not new but does seem to be getting worse. Tho a hot drink does help.

freakyschizogirl
04-27-2012, 06:08 AM
Hi all, just to let you know i am back down the road to Addenbrookes tomorrow for my first 6 monthly dose of RTX.

Have to say i'm really not looking forward to this one for several reasons - hope i'm worrying over nothing!

Stu is coming with me to keep me sane (i hope) and we are then going out for a meal after, if i feel awake enough to do so!

Will post and let ya know how it goes.

pberggren1
04-27-2012, 07:07 AM
Sam, what are the reasons?

I forget how you did last time with the rtx?

Sangye
04-27-2012, 10:14 AM
You'll be fine, Sam!

Al
04-27-2012, 10:36 AM
Yes, Sam, please post. But don't interrupt your hot post-RTX date to do so--we can wait!

Al

Dryhill
04-27-2012, 11:24 AM
I hope all goes well for you Sam, and that you can enjoy your meal afterwards. Oh do remember you are supposed to try and lose weight so only lettuce leaves for your meal. :razz:

Jim

Geoff
04-27-2012, 08:12 PM
WIshing you all the very best Sam. Are you and Stu eating out in the Cambridge area? Any recommendations gratefully received as Linda and I are going up next tuesday!:razz:

Hammy8241
04-28-2012, 12:40 AM
WIshing you all the very best Sam. Are you and Stu eating out in the Cambridge area? Any recommendations gratefully received as Linda and I are going up next tuesday!:razz:


You mean Linda and you are STILL talking Geoff?? You married an Angel:rolleyes1: !

freakyschizogirl
04-28-2012, 10:32 PM
Hi all.

Treatment went ok but i am taking the opportunity to rest up.

Had trouble getting a vein to cannulate me and when she did finally get one it didnt want to offer up any blood!


Seemed like it took forever for them to get started but Stu was great company, as ever.


My blood pressure dropped a lot this time - i dont recall it doing that last time but maybe its because the nurses didnt fuss whereas this time one nurse was asking if i had drunk enough water and had me a little worried.


No Geoff, me and Stu ate out in Hertfordshire somewhere called the Anchor, twas very nice. And i'm afraid i had more than lettuce leaves!

Geoff i am back at Adds on Tues too so maybe, hopefully, we'll see you again. I did briefly see Stella during my infusion and was as polite as ever. She really deserves some sort of recognition for the hard work she does.

I seem to be fine and my worries were all for nothing. Will post again in a few days.

pberggren1
04-28-2012, 11:40 PM
Glad to hear everything went well Sam. I hope this protocol works well for you and you can stay in remission for many years to come.

freakyschizogirl
04-29-2012, 07:25 AM
Me too Phil. Fingers crossed!

Al
04-29-2012, 02:15 PM
Thanks for the report, Sam. And I am glad you got your dinner out of it!

Al

freakyschizogirl
04-29-2012, 08:25 PM
Thanks for the report, Sam. And I am glad you got your dinner out of it!

Al

As am i Al! Was very nice and i had dessert too, oops!

Sangye
04-30-2012, 12:29 PM
That's great, Sam! You have one more infusion in 2 more weeks, right?

My bp drops during rtx, too. It doesn't get dangerously low though.

freakyschizogirl
04-30-2012, 08:00 PM
No Sangye, my next infusion is in 6 months. I had the 2 two weeks apart 6 months ago. Following that i am having 1 every 6 months for 2 years.

Seems everyone is on a different maintenance regime!

Psyborg
05-01-2012, 12:40 AM
Hmm wonder if that is my problem. Mine was 7 months ago...felt great until about a week ago.


Glad things are going well for ya Freaky:)

Al
05-01-2012, 04:55 AM
Hmm wonder if that is my problem. Mine was 7 months ago...felt great until about a week ago.


Glad things are going well for ya Freaky:) Could be, Bob--sort of like those fancy gadgets (cars, computers, etc.) who's warranties are monitored by an internal timer. The day after the warranty expires, the timing belt (or something) goes....

Al

Psyborg
05-01-2012, 05:03 AM
Could be, Bob--sort of like those fancy gadgets (cars, computers, etc.) who's warranties are monitored by an internal timer. The day after the warranty expires, the timing belt (or something) goes....

Al

I'm blaming my timing belt from here on out :)

pberggren1
05-01-2012, 08:48 AM
I can do timing belts on most makes and models.

Sangye
05-01-2012, 09:41 AM
It's great that you're all done, Sam!

Bob, it may be. I start to feel lousy around the 7-month mark even though my labs look fine. I feel lousier each month as I try to make it to a year.

freakyschizogirl
05-01-2012, 05:10 PM
Bob when is your next infusion?

I felt lousy in the 2 weeks leading up to the infusion - was tired and had aches and pains that I don't normally get. My back is still giving me grief. Very stiff and creaky down my spine. Back to Adds today for a check up so I will be mentioning it again.

Psyborg
05-02-2012, 12:21 AM
They were attempting just the single infusion with me changing to Immuran.

Naturally I do feel better today with the Pred being boosted way back up. Wonder drug that works blunders... :) I'm thinking I was starting to have some airway issues that I just started noticing yesterday. Obviously the doctor wants me to keep a close eye on it now and come up to Cleveland for testing if needed.

freakyschizogirl
05-21-2012, 08:04 PM
I'll be down to 3mg of pred on Wednesday - yay! I am starting to notice the crusting is coming back with a vengeance..is this to be expected do you think? Its not very bad but its coming back quicker after i clean it out. So probably not worse, just gaining speed.

Dirty Don
05-22-2012, 12:35 AM
I'll be down to 3mg of pred on Wednesday - yay! I am starting to notice the crusting is coming back with a vengeance..is this to be expected do you think? Its not very bad but its coming back quicker after i clean it out. So probably not worse, just gaining speed.

I'm right behind ya at 5 mg of pred...will see on next appt if I go further. Have experienced a couple of nosebleeds and some crusting, but not as bad as before. Too hard to tell, just keep an eye out I guess.

Psyborg
05-22-2012, 03:39 AM
Doctor appointment is Wednesday. I have my customary list of questions/symptoms. I've actually felt marginally better since the beginning of last week, though my sinuses and airway seem to be having issues. I'm wondering it it might all just be an infection. I think I've got Thrush...again...my tongue is burning like crazy in the back.

pberggren1
05-22-2012, 06:14 AM
Thrush again Bob?! Yuck.

I remember Dr. Hoffman saying many years ago that it will not be the disease that gets us in the end but an infection of some sort.

freakyschizogirl
05-22-2012, 08:19 AM
Thank you. Keep up and good luck at your appointment!

Have had the odd bit of blood but not a full blown bleed so will definately keep an eye on it.

Debbie C
05-22-2012, 10:49 AM
I too am glad you are doing well Sam and that yr infusion went good.Are you going to be dropping 1 pred every 2 weeks now or staying on it until your next infusion ? Hope you can enjoy yr summer drug free !!

freakyschizogirl
05-23-2012, 09:52 PM
I'm dropping by tapering 4mg one day and 3mg the next for a month and then staying at 3mg for a month. then move down like that so wont be drug free for the summer. But a reduction is still just as nice

Al
05-24-2012, 05:35 AM
By the way, Sam, it is great that you and Jim are Blake freaks. Hmmm....WG Dead Poets' Society....

Al

freakyschizogirl
05-24-2012, 09:04 AM
By the way, Sam, it is great that you and Jim are Blake freaks. Hmmm....WG Dead Poets' Society....

Al

I've actually just replied to this and didnt save it, damn! Over tired.

I like Blake cos he talks a lot of sense to me, plus he was an eccentric who didnt conform to the norm. Shame he wasnt really celebrate in his own time. At college i studied Songs of Innocence and Songs of Experience - well worth a read and very thought provoking stuff.

Thinking of getting the quote in my signature as a tattoo for my birthday in June as its something i have felt and can relate too. PLus i had my corset tattoo just after starting on the pred, would have a nice symmatery to it to finish my run with pred with another tattoo.

Debbie C
05-24-2012, 09:24 AM
Hey Sam my birthday is in June also ,the 10th, what about yrs ? I read somewhere it's not a good idea to get tats since we have a higher risk of getting Hep. C. I don't know if thats true or not.I like yr saying though.

freakyschizogirl
05-24-2012, 09:55 PM
Hi Debra, mines the 24th. and i'll be 27 :sad:.

I've kinda ignored the tattoo/ Hep c thing as i've had 2 tattoos since being diagnosed. As long as you go to a good tattooist and keep the wound clean while its healing everything should be ok. My tattoo artist has everything sterilised and uses a new needle every time. Little cups for the ink and so on. The wound is covered with cling film until it starts to heal and cleaned at least twice daily and put some bepanthen on it.

There isnt a great deal of evidence that you're at a higher risk of Hep C from tattoo's and there's also anecdotal evidence that having a tattoo could trigger an auto immune disease - but this hasnt been proven.

Dryhill
05-25-2012, 11:21 AM
By the way, Sam, it is great that you and Jim are Blake freaks. Hmmm....WG Dead Poets' Society....

Al

Al, I am not a freak, I'm just eccentric.


Hi Debra, mines the 24th. and i'll be 27 :sad:.

Sam, I am 25 for the third time. When I got to 40 I decided that I was not going to get any older, so the next birthday I was 39 again and then when I got down to 21 again I started going back up. It is great to confuse people by insisting I am really 25, they look at me and I just say I have lived a very hard life.

Jim

Al
05-25-2012, 02:29 PM
Sam, I just read a report that--forget the tattoos and such--just being in your 20s makes the risk of Hep C higher. The report recommended everyone in that age group be tested. I can't vouch for the accuracy of the research (I'm a long way out of that demographic; I can identify a lot more with Songs of Experience!)--just passing it on.

Al

Al
05-25-2012, 02:31 PM
Al, I am not a freak, I'm just eccentric.
Okay, I appreciate, and can identify with, off-centerdom.

Al

freakyschizogirl
05-25-2012, 04:56 PM
Jim, as always, you crack me up. My dad does the same thing, he's now 21.

Al, why does being in your 20's give you a higher risk of Hep C?

And i liked innocence and experience as i can identify with both!

Al
05-26-2012, 02:08 PM
Al, why does being in your 20's give you a higher risk of Hep C? And i liked innocence and experience as i can identify with both! Dunno, Sam. The story I read was a newspaper item, which was not too specific. The term they used was "millennials", which I took to mean those in their 20s. I have since looked for the original paper the story was based on. I haven't found it yet, though I did find several older stories recommending that all "baby-boomers" get tested for hep c. I'll keep you informed...!

Al

delorisdoe
06-01-2012, 02:30 AM
.

Al, why does being in your 20's give you a higher risk of Hep C?

!

Lifestyle maybe????>???

Debbie C
06-01-2012, 05:21 AM
yea that was the era of drugs,sex and rock and roll and they said not many people have ever thought about being checked for Hep C.

Al
06-01-2012, 02:33 PM
...drugs,sex and rock and roll....? What is them stuff...?

Al

Debbie C
06-02-2012, 12:27 AM
? What is them stuff...?

Al
DAH- I don't know man !

freakyschizogirl
06-02-2012, 02:37 AM
With my work i am more at risk of Hep B, sod Hep C!

Today i've found out we have a Threadworm outbreak, nice.

freakyschizogirl
06-02-2012, 02:38 AM
Lifestyle maybe????>???

I'm a homebody these days :sad:

Dryhill
06-02-2012, 10:05 AM
yea that was the era of drugs,sex and rock and roll and they said not many people have ever thought about being checked for Hep C.

Luckily I never got into drugs, so I do clearly remember enjoying the other two. The trouble is with advancing age and WG fatigue setting in, I can only enjoy rock and roll these days ...... sob, sob. :crying:


With my work i am more at risk of Hep B, sod Hep C!

Today i've found out we have a Threadworm outbreak, nice.

Take care no hepatitis is good, as for threadworm I thought that was a thing of the past. By the way what do you mean your a "homebody these days"? Come on you are an Essex Girl, that means you are out clubbing every night. :razz:

Jim

freakyschizogirl
06-02-2012, 05:23 PM
Luckily I never got into drugs, so I do clearly remember enjoying the other two. The trouble is with advancing age and WG fatigue setting in, I can only enjoy rock and roll these days ...... sob, sob. :crying:



Take care no hepatitis is good, as for threadworm I thought that was a thing of the past. By the way what do you mean your a "homebody these days"? Come on you are an Essex Girl, that means you are out clubbing every night. :razz:

Jim


I think you watch too much TOWIE. I dont speak with an Essex accent either and was teased a lot for talking "posh" at college.

Dryhill
06-02-2012, 07:36 PM
I think you watch too much TOWIE. I dont speak with an Essex accent either and was teased a lot for talking "posh" at college.

I clearly will have to revise my understanding of Essex Girls. My maternal grandfather was born in Essex, and by the dates of his mariage and becoming a dad, I would say he really was an Essex Boy!

Jim

freakyschizogirl
06-03-2012, 09:18 AM
I clearly will have to revise my understanding of Essex Girls. My maternal grandfather was born in Essex, and by the dates of his mariage and becoming a dad, I would say he really was an Essex Boy!

Jim



Where i live we have the highest teen pregnancy in the UK... oh, and the most roundabouts!
I've always said my mum is probably the only mother of 2 daughters who HAVENT had children in their teens (or even mid twenties)

Dryhill
06-03-2012, 10:18 AM
Hmmm that is interesting Sam, we can prove statistically that roundabouts are the direct cause of teenage pregnancy. I can just imagine a town council meeting trying to weigh up the advantages of better traffic flow by building a new roundabout against an increase in pregnant teenagers. By the way I thought Hull was the teenage pregnancy capital of the UK, there it was clearly due to the smell of fish.

Jim

Al
06-03-2012, 03:08 PM
Where i live we have the highest teen pregnancy in the UK... oh, and the most roundabouts!
I've always said my mum is probably the only mother of 2 daughters who HAVENT had children in their teens (or even mid twenties)I have to ask, Sam: What is the relationship between roundabouts and teen pregnancy? I can think of a few jokes, but maybe it is that just an Essex sort of thing?

Al

Al
06-03-2012, 03:10 PM
Hmmm that is interesting Sam, we can prove statistically that roundabouts are the direct cause of teenage pregnancy. I can just imagine a town council meeting trying to weigh up the advantages of better traffic flow by building a new roundabout against an increase in pregnant teenagers. By the way I thought Hull was the teenage pregnancy capital of the UK, there it was clearly due to the smell of fish.

JimNow, Jim, no need to go all Monty Python about this....

Al

freakyschizogirl
06-03-2012, 09:51 PM
Al i dont think there is a connection just a coincidence and Jim maybe we're the teen capital of Essex then? Who knows.

freakyschizogirl
06-14-2012, 06:22 AM
This is gonna get a mixed review but i got my latest tattoo this past saturday! And it is in the style of the original artwork by William Blake with the original spelling of 'Excefs of Sorrow Laughs, Excefs of Joy Weeps' I will post a pic asap so please browse my photo album

Dryhill
06-14-2012, 11:38 AM
This is gonna get a mixed review but i got my latest tattoo this past saturday! And it is in the style of the original artwork by William Blake with the original spelling of 'Excefs of Sorrow Laughs, Excefs of Joy Weeps' I will post a pic asap so please browse my photo album

Sam, that is going to make people think. Did you have to explain it to the tattooist?

Jim

freakyschizogirl
06-16-2012, 06:21 PM
Sam, that is going to make people think. Did you have to explain it to the tattooist?

Jim


Nah, she got it. My sister had a tattoo at the same time but it was some weird quote: Falling awake from the walking sleep. I dont get it personally but means something to my sis.

Everyone so far loves my tattoo and do so i'm happy. Feel like i've come full circle from having the corset on my back a few weeks after diagnosis and now this one while in remission and low does of pred - feels good.

Debbie C
06-17-2012, 12:07 PM
Good for you Sam on your new tat..I like that quote but I to don't understand yor sisters,maybe she can explain it. I wanna see the pix. I've always wanted to get a small tatoo but could never decide on what and I'm too chicken (the pain thing ) plus with my luck I would get Hep C. What is your other tatoo?

Dirty Don
06-17-2012, 01:17 PM
' Falling awake from the walking sleep'

Coming into realization kind of quote...you know: sleepwalking thru life, the coming awake, maybe by accident?? Perhaps...just the old poet/teacher in me!!! LOL...not really any different than weeping joy and sorrowful laughing...hmmmmm

freakyschizogirl
06-18-2012, 01:26 AM
' Falling awake from the walking sleep'

Coming into realization kind of quote...you know: sleepwalking thru life, the coming awake, maybe by accident?? Perhaps...just the old poet/teacher in me!!! LOL...not really any different than weeping joy and sorrowful laughing...hmmmmm

Don i told my sister what you said and she's very happy that someone other than her understands what it means!

Debra C as long as you go to a good tattooist you shouldnt fear Hep C. I've got 4 tattoos now. On my left wrist i have 3 star shaped flowers, on my right wrist i have a 'S' and on my back i have corset laces - as well as my new one that is on the inside of my upper arm on my left.

Debbie C
06-18-2012, 03:49 AM
Wow Don,I'm impressed..I would have never of thought of that !

drz
06-18-2012, 05:25 AM
' Falling awake from the walking sleep'

Coming into realization kind of quote...you know: sleepwalking thru life, the coming awake, maybe by accident?? Perhaps...just the old poet/teacher in me!!! LOL...not really any different than weeping joy and sorrowful laughing...hmmmmm

I think my surviving Wegs, and the whole 9-11 experience for our country, were a couple of those moments for me--sort of a big AHA--this is what is really important in life, not the piddly stuff I was worrying about before.

freakyschizogirl
06-18-2012, 06:08 AM
I think surviving Wegs and 9-11 were a couple of those moments for me--sort of a big AHA--this is what is really important in life, not the piddly stuff I was worrying about before.

You survived 9/11 - wow. Very life affirming i should think.

drz
06-18-2012, 08:14 AM
No, I was not at WTC or in any direct danger at that time, but my daughter and son-in-law worked at WTC and had planned to be at WTC early that morning along with my oldest grandson. When I heard about the first plane hitting it when I arrived at work it was a very tense moment until I learned they had slept in and were still at home a few blocks away watching the second plane hit the WTC. Another co-worker also had a relative working at the Pentagon so we had some anxious moments till we learned our relatives were physically OK. So in that way 9-11 was a big wake up call for me and many other people too I think. For a few hours I felt the fear of possibly losing what really mattered most in life and its not the stuff in the garage or how much money in the bank that just burned up. I think 9-11 also changed our general sense of security and the whole American psyche and our outlook on life and the world. It was sort of our Pearl Harbor and a world changing event.


You survived 9/11 - wow. Very life affirming i should think.

pberggren1
06-18-2012, 09:04 AM
That would be very scary drz. And you are right. Family is most important. Money and material things don't even come close.

Debbie C
06-18-2012, 09:26 AM
I was sitting at home watching Good morining America and talking on the phone to my mom when I saw the planes hit the WTC in the background of them talking. I was shocked (as all of America ) .How lucky for your family that your daughter and her family slept in.God was with them that day. Have to gone to the Memorial ? I have never been to the city ..just JFK airport several times. I want to come there over the holidays to see the decorations and shop and try to find the cash cab!
There are so many things I have on my bucket list but I not getting any of them done..I need someone with there own personal plane..anyone on here have one ????

drz
06-18-2012, 03:00 PM
For Japan 3-11 was a big AHA moment when the tsunami killed thousands and wiped out some coastal cities. Most countries have had some such disaster experience or other event that seemed to wound their whole nation. Often these can be defined as a day where everyone can remember what they were doing and where they were when they heard the news like Pearl harbor, 9-11, JFK's assassination etc. Maybe we should start another thread on what events made us " fall awake from our walking sleep"?

Sangye
06-19-2012, 01:20 AM
I wish I could agree that 9/11 changed our nation's perspective on things, that it made us all appreciate the things which are truly important in life. For a handful of people whose lives continue to be altered by that day, yes. But on a larger scale I think we have become an angrier, more bitter nation and much more self-absorbed, if that is even possible.

Lightwarrior
06-21-2012, 08:20 AM
I wish I could agree that 9/11 changed our nation's perspective on things, that it made us all appreciate the things which are truly important in life. For a handful of people whose lives continue to be altered by that day, yes. But on a larger scale I think we have become an angrier, more bitter nation and much more self-absorbed, if that is even possible.

Sangye, it makes me so sad to agree with you :sad:

freakyschizogirl
06-27-2012, 07:02 AM
Hi all!

Back from Addenbrookes and on a massive high as i saw David Jayne! Wasnt even suppose to see him as he wasnt supposed to be in clinic but for some reason he was and i got him - yay!

Firstly he told me to keep tapering preds by 1mg a month and stop the Omeprazole. Second he tells me i can go ahead with surgery to correct my nose when i see the surgeon later this year. Then he said the reason i get problems with my chest is probably because some people with Wegs get a thinning of their wind pipe and he will either do a CT or Bronchoscopy to look at it and will consult with the chest consultant first.

We then had a little chat and he said he could see from my notes that i had been educating his staff (i have no idea what he means as he didnt elaborate) and i said i like to be well informed, google and am a member on a wegs forum where i get lots of information.
He asked me what the hot topics on the blogsphere (his words) and i told him about a few of the topics i had read recently on here. He then asked me what everyone thought of the name change - i said it was a mixed reaction but i was against it cos it feels like its taking something away from Dr Wegener just because he was associated with the Nazi's. Dr Jayne agreed with me and said he had been to a seminar given my Dr Wegener in 1989 (i think) in Germany and remembers listening to the lecture when Dr Wegener made a joke and all the germans were laughing and Dr Jayne had no idea what was being said. I said i thought that was amazing to have met the finder of the disease.

He said his personal thoughts were that Dr Wegener was reportedly a nice man other than being associated by the Nazi's and agreed with me that changing the name was confusing to both patients and doctors. He said he was keen to get the name vasculitis out there and i showed him my 3 wristbands from Vasculitis Foundation, Vasculitis UK and the Lauren Currie Twilight Foundation. I mentioned i had seen him on a recent clip and he told me he thought it was awful (i presume he means himself in it) and was talking about the other Dr interviewed called Lars something and said it was odd he had an accent on the film as he didnt speak with an accent usually.

Lastly Dr Jayne spoke about surgery on ym nose and said he knows of a doctor from America called Lebowitz who takes bone from the elbow to rebuild the nose and he's recently watched a 40min video of a surgery being performed.

So all in all a very good visit, he doesnt wanna see me again until October when i have my next RTX infusion. Yay!

There is probably more that was said and i will remember later but this is all for now...

freakyschizogirl
06-27-2012, 07:03 AM
He also said they see mostly young people with 'localised' wegs and older people tend to have it in multiple places....odd

mishb
06-27-2012, 09:05 AM
That is excellent news and fantastic that you saw the head guru and he had time to sit and speak to you.
I also had a fantastic Rheumy app't on Monday but will put up a post about it later.

Keep up the good work ..... there are some great things for you..... looking forward :thumbsup:

Dryhill
06-27-2012, 10:31 AM
Sam, that is great news especially about getting your nose sorted out. :hug3:

Jim

pberggren1
06-27-2012, 11:07 AM
That sounds very good Sam.

Dave sounds like a nice guy.

So why go off the Omeprazole?

The ENT doc he mentioned is Dr. Robert Lebovics. He is in NY and considered to be the best ENT when it comes to nose surgery with Wegs.

Fran
06-27-2012, 04:26 PM
Sam, What a brilliant consult with Dr Jayne - He sounds as if he has a great personality (wish he was my doc!)
Very pleased for you about the go-ahead for the nose 'op. :thumbup:

Fran

freakyschizogirl
06-27-2012, 08:24 PM
Thanks Guys

My fiance Stu was amazed at how nice and funny Dr Jayne. Stu was laughing cos both Stu and Dr Jayne have the same build and hair.

Phil coming off the Omeprazole as i'm on 20mg and now going down to 2mg pred.

Good news i've got the go ahead for the op but scared as hell now about having it!

Sangye
06-28-2012, 07:15 AM
That's great news, Sam!

I wasn't able to go off acid-blockers until I got to 10mg. 20mg pred is still hard on the stomach. See how it goes but check back with him if you get ANY stomach pain.

pberggren1
06-28-2012, 09:16 AM
I think Sam means 20mg of Omemprzole. And 2 mg of pred.

freakyschizogirl
06-29-2012, 04:08 AM
I think Sam means 20mg of Omemprzole. And 2 mg of pred.

I did Phil, thanks for translating!

Sangye
07-01-2012, 12:55 PM
Oh, very good. I was pretty shocked at it, otherwise!

Debbie C
07-01-2012, 10:17 PM
Hey Sam, I haven't been on lately, was in the hosp last week. But read yr story and glad to hear all the great news u got ! Don't be afraid about yr nose surgery,u have been looking forward to this for so long and I'm sure all will go well. By the way I also like your new picture....u will have to post another after your nose job !!! I don't know how to upload pics so you guys will probably never know what I look like ..I am a computer dummy. Well I have to get ready for church..I'll say a pray for all of us. Take care and keep getting better:thumbsup:

freakyschizogirl
07-02-2012, 07:53 AM
Thanks Debra C

I am looking forward to talking with the ENT surgeon but also pretty scared about it too.

Was talking to my Fiance Stu today about it and said as much as i want it done i dont want the pain and bruising that goes with it, or the anaesthectic which i had a bad reaction too last time - felt sick and dizzy for a week. Plus i'm very cautious that i am messing with my face and i dont want anything to go wrong with that. I'm sure i'll feel better after talking with the surgeon but til then i will worry - such is my nature!


Stu was amazing, as ever, and said that i could talk to him all i wanted to about it. And that i'll always be beautiful to him. I think i'm kinda content that Stu doesnt see me as a monster but in ever photo and ever mirror that shadowy bump always waves back at me and i hate it passionately.

Dirty Don
07-02-2012, 09:56 AM
Stu was amazing, as ever, and said that i could talk to him all i wanted to about it. And that i'll always be beautiful to him. I think i'm kinda content that Stu doesnt see me as a monster but in ever photo and ever mirror that shadowy bump always waves back at me and i hate it passionately.

Aaaah, Sam, you have forgotten that beauty truly is in the eyes of the beholders, not mere pictures and mirrors which are only reflections of YOUR mind...displace that passion you have for your mirrored profile, YOUR monster...put it into Stu, your family, your life...by taking passionate care of those parts of your life, you take care of YOU...bodies come and go, souls are forever though...

Fran
07-02-2012, 07:06 PM
Sam, Love your new pic !!

Fran

drz
07-02-2012, 10:16 PM
Sam, Love your new pic !!

Fran

I think the new pix reflects your inner beauty well and that is how Stu sees you.

Lightwarrior
07-03-2012, 03:54 AM
Thanks Debra C
Stu was amazing, as ever, and said that i could talk to him all i wanted to about it. And that i'll always be beautiful to him. I think i'm kinda content that Stu doesnt see me as a monster but in ever photo and ever mirror that shadowy bump always waves back at me and i hate it passionately.

When I see your picture I don't see a monster either, your posts most assuredly are note those of a monster. Stu strikes me as intelligent enough to see you with his heart. The more I hear of this Stu the more impressed I am and the happier I am for your future.

freakyschizogirl
07-04-2012, 06:02 AM
Thanks guys, you know how to make a girl smile and blush!

Stu is awesome and i will always sing his praises - even tho he thinks a lot of what he says or does is nothing. I wish sometimes he could read my posts on here so he knew how amazing he really is. He sat with me through my first infusion 2 months into our relationship and we're still together and have been for 10 months now.

Al
07-06-2012, 02:30 PM
Thanks guys, you know how to make a girl smile and blush!

Stu is awesome and i will always sing his praises - even tho he thinks a lot of what he says or does is nothing. I wish sometimes he could read my posts on here so he knew how amazing he really is. He sat with me through my first infusion 2 months into our relationship and we're still together and have been for 10 months now.

Sam, not all guys are worth much. You found one who is.

Al

freakyschizogirl
07-09-2012, 10:09 PM
I couldnt agree more Al. I am one lucky lady!

freakyschizogirl
09-28-2012, 02:21 AM
Hi All

Wanting some advice.

I usually get dizziness when i start my period but today it is more extremem than usual.

I am very dizy when moving my eyes and or head and feeling sick. It started at about 1pm and its now 5pm and i dont feel much better. I drove to work but am starting to freak out. I'm feverish going between hot and cold too.

I'm talking iron tablets so i dont think its that and it could be dehydration but i've been drinking steadily since 2.30pm and as i say dont feel any better. Should i be worried?

freakyschizogirl
09-28-2012, 06:51 AM
Been told by a Doc that its fluid inbalance in my ears... Not convinced.

jola57
09-28-2012, 02:38 PM
Did he suggest a remedy? How are you feeling this evening. Take good care.

freakyschizogirl
09-28-2012, 04:21 PM
He's given me a script for something I can't read! Haven't taken then but feel better this morning but still not right

Sangye
09-29-2012, 01:57 AM
It could be viral labryinthitis-- basically an inner ear infection. That's what I had in 2010. Make sure you get to an ENT immediately if your hearing diminishes at all. They would need to put you on high dose steroids for a week or two to prevent permanent hearing loss.

freakyschizogirl
09-29-2012, 07:04 PM
Will do Sangye, it seems better but I will keep an eye on it

freakyschizogirl
12-13-2012, 08:49 AM
Hi All

Just wanted to share the good news that i offically am Pred free, as of today.

Just wanna say a massive thanks to everyone who has helped me along the way.

Lightwarrior
12-13-2012, 09:40 AM
Hi All

Just wanted to share the good news that i offically am Pred free, as of today.

Just wanna say a massive thanks to everyone who has helped me along the way.

Happy Dance Time!!! :hug3::hug3::hug3:

marta
12-13-2012, 10:37 AM
If I could give you the biggest bear hug in the world I would right this minute. I'm so so happy for you buddy. So cool! What an amazing milestone.

Here's to pred free life until you're 100.

drz
12-13-2012, 04:08 PM
Hi All

Just wanted to share the good news that i offically am Pred free, as of today.

Just wanna say a massive thanks to everyone who has helped me along the way.

WOW!!!!! That is a big deal.

mishb
12-13-2012, 08:44 PM
I'll join Lightwarrior in the happy dance :hug3::lol::lol: (I'm still yet to see her do cartwheels)

Fantastic news Sam.

Please don't be a stranger from here but most of all
.........GO OUT, GO OUT NOW......and have the best time of your life.

Have a wonderful Christmas with your new found freedom (so to speak)

Dirty Don
12-14-2012, 01:37 AM
Hi All

Just wanted to share the good news that i offically am Pred free, as of today.

Just wanna say a massive thanks to everyone who has helped me along the way.

First of all, congrats! Nice goal to reach! Just stay aware...it's only another step in getting back to 'normal'. I'm right behind you now, am tapered to 4mg/day, dropping 1mg every 3-4 weeks...we'll see! I wanna be like Sam!!!! Oh, btw, just to be the devil's advocate...thanks for the thanks to all who have helped you (pats my own back just a bit!), but YOUR 'way' is just starting my young lady...shall we say it's 'Sam's way' for now?! Hehe, yes, I'm looking for my coffee...

Psyborg
12-14-2012, 04:40 AM
That's awesome! I hope you'll be able to stay Pred free for a good long time!

Debbie C
12-14-2012, 07:12 AM
Sam...That is Awesome news...I am so happy for you.I hope you continue to get better every day and stay that way. Have a great holiday....CHEERS !!!!:thumbsup:

pberggren1
12-14-2012, 07:23 AM
Let's get this party started!!!!!

Debbie C
12-14-2012, 07:24 AM
Don,I'm also glad to hear you are getting off pred :smile1:..good luck,I hope it doesn't give you any trouble. Hope you have a wonderful holiday along with all of our forum friends

HopeinTN
12-19-2012, 02:41 PM
That's great news!

jola57
12-20-2012, 04:29 PM
Oh happy happy girl. Stay off them for ever and ever. Big hug

Sangye
12-27-2012, 11:49 AM
Yay for no pred, Sam!! :hug3:

freakyschizogirl
01-12-2013, 04:23 AM
And now for another milestone: Sometime in the new 3-4 months i will be having my nose corrected. Scary Stuff!

Saw the consultant on the 20th Dec, he is taking cartalidge from the ear as he thinks going for the rib will be too envasive and worried about causing a flare.

Also Me and Stu are geting married in August!

Phew

And now to plan for it all!

DEE
01-12-2013, 04:32 AM
CONGRATULATIONS TO YOU BOTH....
and great news about your nose .....DEE :hug3::hug3::hug3:

Hammy8241
01-12-2013, 05:05 AM
'ear 'ear Dee. Our Sam nose best :)

Look forward to hearing all the arangements (for both) as they happen :)