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freakyschizogirl
10-14-2010, 04:21 AM
Why is it the NHS in Essex (especially where i am) cannot get their acts together?

Went to see my GP today to get a repeat perscription of my meds and get a referral to Addenbrooks.

Firstly no letter has been sent from my Rheumy to my GP in over a week to say that he's seen me, what meds i'm on and the fact that i can ask for a referral.

Secondly my GP wont give me a repeat prescription for Methotrexate "because its toxic" without a letter from the Rheumy.

She also wont refer me to Addenbrooks, again, without said letter because he has to say i'm allowed to go there (what?)

So now i'm gonna have to ring my Rheumy's secretary who is unhelpful at her best and complete waste of space vacuous cow when at her worst. She wont write down the right things in the bloomin letter and she'll most likely make me wait longer for it now. Grrr!!

Is it just me?? Please tell me others are having problems too!?

Jack
10-14-2010, 04:49 AM
I'm so sorry to hear that you are having all these bad experiences with your doctors, I've mentioned before that I always get really good service. Where are you finding these people? I can only advise you to keep bashing away and get yourself under the care of Addenbrooks. Hopefully things will change then.

It is not unusual for your GP to not have authority to prescribe certain drugs. My own Myfortic has to be prescribed by the hospital rather than my GP. Try to stay calm and just explain to the secretary that you urgently need your next prescription and this is dependant on the letter. Explain to here that you are worried about what may happen if you don't take it on time.

elephant
10-14-2010, 04:52 AM
Can you go over to your Rheumy and ask for a letter? In the meantime can any other doctor( Lung doc, ENT...ect) refer you to Addenbrooks? My immunologist refered me to a Rheumy and made an appointment for me.

freakyschizogirl
10-14-2010, 04:52 AM
She wont care Jack! hahaa! But i will try. I'll be calm and polite.

Must just be my local hospital cos many others get good treatment

freakyschizogirl
10-14-2010, 04:53 AM
In the meantime can any other doctor( Lung doc, ENT...ect) refer you to Addenbrooks?.

I'll have to try that, my Lung consultant's secretary is the most helpful woman!!

eileenv
10-14-2010, 05:09 AM
Oh Sam, what a mess !! i phoned up my gp to get an appointment which i can't get till monday. My last gp( i changed because they kept loosing letter and receptionist were horrible you had to get by them to get an appointment) said i would have to be discharged first before a referal can be made i have wrote a letter to him asking to be discharged. Before i post it i am going to ask to speak to a any docter at the praticew and ask, this terrible that you can't see who you want also Sam i am going to ring addenbrooks back and ask there advice. I remember her saying that you need a referal from gp or rheumy . Sam you said that you gp has not got a letter yet from your rheumy it took mine about three weeks to get to gp because i always ask for a copy too. After your appointment with rheumy they do a they dictate it to there secretary my rheumys sec is horrible too is not at all helpful i think he handpicked her!!.

Geoff
10-14-2010, 06:21 AM
Wow Eileen and Sam my heart goes out to you. I live probably less than 30 miles from you and yet have an altogether different experience with the NHS. No help to you I know but what I can say is that if and when you get to Addenbrookes I hope and pray that it signals a whole new world to you and that the frustration and anxiety are removed from the equation, lets face it, its a tough enough hand of cards we have been dealt with to start with.
On the positive side we can share the driving and the petrol costs!!:thumbsup:
All aboard the M11 flyer!

eileenv
10-14-2010, 06:33 AM
I know geoff you wouldn't beleive it, i just written a letter to the rheumy to ask if he could discharge me from his care as i was suppose to see him on the 19oct but i haven't posted it yet, i don't know what to do:unsure:

Geoff
10-14-2010, 06:58 AM
i don't know what to do:unsure:

I think you do! We cannot perscribe for each other as one thing is apparent with this illness is the variety of condition and severity but it would appear to me that you hav'nt really got any stability so far. There is a clinic I know on friday at Adds because I was supposed to go but thats been cancelled because of my recent attendance caused by my 'flare'. I would call Jane at the Vasculitus clinic and speak again to her and explain your dilemma. You've started the ball rolling, keep strong!!:thumbup:

elephant
10-14-2010, 08:15 AM
I agree with Geoff, you go girl!

Hammy8241
10-14-2010, 10:19 AM
Hey Sam, letters to Docs tend to take about 3 weeks from appointments.

Call secretary and request faxed 'fast tracked' letter to your GP as you need your meds. Naturally mention that you would be grateful if they would mention your referal on the letter too!

If the Sec. is realy a 'cow', leave a message for the rhumy to call you as you are having trouble with your meds.

Good luck.

DEE
10-14-2010, 03:55 PM
hi Sam
when i have appointment with wg consult he always e mails my gp yhe next day with treatment and meds etc changes so it can be done .
and yes you can to any consult i asked my gp for a refferal to a certain eye consult because i didnt want to go back to my original one i had the same problem with my first gp he did not know what he was doing and missing things i had no confidence in him so my husband and i had an appointment with the pratice management and now see the senior partner .
you deserve the best keep on asking
also i was only allowed to get my methrotrate from the hospital for quite awhile.,its something to do with a care plan between the hospital and gp
yes your right it is a battle but hopefully u will sort it out
good luck DEE :hug3:

freakyschizogirl
10-15-2010, 04:05 AM
wow so many replies!!

Phoned the secretary today and she bowled me over with kindness!! So i have to take back what i said (its gonna be a bitter pill to swallow!)

She said she's get on it right away, and write that i want a referral (though i hold my breath to whether this will get done) and about the meds. So all in all she did good!

And in Herts and Essex hosp letters from my Chest consultant to my gp took one week! I think it was even less. But like i said he has an excellent secretary. They really should do an awards or name and shame for some of these people.

As you say being diagnosed with wegs is a battle within its self. Shouldnt have to fight for the treatment you want.

eileenv
10-15-2010, 04:41 AM
WOW Sam what a turn around with the secretary, she must of swallowed a nice pill!!. I'm glad for you, iphoned addenbrooks and spoke to Dr Jayne's secretary and she i don't have to wair for to discharge me it's just like getting a second opinion, through i'm not seeing him again. I go to gp on monday to get mine. I got a letter saying come in on the 1st november for nose biopsy i phoned up and said no thanks!!

freakyschizogirl
10-15-2010, 04:42 AM
lol good one!!

elephant
10-15-2010, 04:59 AM
So nice that it worked out Freaky! Don't worry about that sec, we all need to vent , heck were humane for peetssake! Good docs on their way to take care of you soon!

freakyschizogirl
10-15-2010, 05:01 AM
i hope so elephant!! hahaa!

I'm still waiting for those keys and gloves you said i would find with my nose irrigation! None as yet. Was hoping i'd get a cuddly toy at some point!!

Oooh and check out the pic of my new tattoo now on my profile, Got it tues and it looks sooooooo cool!

elephant
10-15-2010, 05:04 AM
That is a very nice tattoo!

freakyschizogirl
10-15-2010, 05:05 AM
thanks, so pleased with it. Looks awesome. Cant stop looking at it. Means a lot to me now...coming a week after starting on my meds.

elephant
10-15-2010, 05:07 AM
:lol:Make sure you look up when walking don't need you bumping into something " cause you keep looking at your tattoo!"

freakyschizogirl
10-15-2010, 05:13 AM
Hahahaaa! Well its on my back but i do feel like people should be looking at me differently. Its all a ploy to get people looking at and touching my back!!

But yeah when i'm getting dressed or in front of a mirrored surface i do tend to look

Sangye
10-15-2010, 08:58 AM
Wow, it came out really well. It looks 3-D. Glad you made some progress with your doc's office, too. :thumbsup:

freakyschizogirl
10-15-2010, 09:44 PM
Thanks Sangye...Yeah things can only get better...can only get better. lol.

I'll keep ya updated!

Steroids have kicked in. I was wondering to myself how i would notice if they were working because as you know the Wegs is having a party in my nose for the moment. Well i know now. Been having lots of sinus pain over the past few days. I can feel my sinuses moving. Which should be a good thing after 3 years of them being blocked. Whooo!!

Geoff
10-15-2010, 10:49 PM
Good News Sam, Can't wait to see the next Tattoo celebrating your improvement!!

freakyschizogirl
10-16-2010, 12:24 AM
Oh dont Geoff...i'm already planning the next one!!

My mum said "what do ya want another one for. Its a waste of money. I thought ya wanted to start driving and get a car"

My response: Tattoos are cheaper!! lol And prettier and will last forever. I cuold wreck a car. And then where would i be??

freakyschizogirl
10-19-2010, 12:08 AM
Grrr.

Rheumy's secretary says i cant get referred to Addenbrroks until i go back and see my Rheumy in November. As he is confident with his treatment. Typical ay??

Been stabbed today for by blood test. The nurse i had is wasted in healthcare. She really did stab me!! It hurt more than my tattoo!!

Jack
10-19-2010, 12:25 AM
It is not really about his own confidence in his treatment is it? You have a right to choose which hospital you are treated at. See - Choosing a hospital (http://www.nhs.uk/choiceintheNHS/Yourchoices/hospitalchoice/Pages/Choosingahospital.aspx)

DEE
10-19-2010, 12:30 AM
beat me to it Jack i was going to say that :flapper:DEEx

Sangye
10-19-2010, 12:45 AM
I would imagine that you also have the right to fire your doctor if you feel s/he is not providing proper care.

elephant
10-19-2010, 02:27 AM
Good advice go with it Freaky!:hug3:

freakyschizogirl
10-19-2010, 05:05 AM
Yeah i know...i thought i had a choice too...funny ay??

I'll wait til i see him in November and then ask to refer me. And then i'll be free.

eileenv
10-19-2010, 05:40 AM
I went to my Gp and said she can't refer me as it is out of pct trust she said my rheumy could bot i don't hold on that one. I had written to him but good job i never posted it yet, i see him tomorrow. GP said he is a very goos rheumatologist but she knows how very rude he can be. Only other option is to write to the trust and see if they will fund me, all about money as usual:sad:

freakyschizogirl
10-19-2010, 06:00 AM
there's always St Thomases...but i suppose that would be out of the PCT too??

eileenv
10-19-2010, 06:57 AM
No Sam, i think i would be okay there but my heart was set on addenbrooks. I suppose now if i don't have the biopsy they will see it as not cooperating. because of the terrible weekend i had with pain as soon as i took an 10 of pred i was able to get about it's such a low dose i'm on.

freakyschizogirl
10-19-2010, 07:14 AM
Aww i know. i'm thinking they will say that to me now...

DEE
10-19-2010, 07:43 AM
Eileenv i was in the same situation with ENT consult , my first one was not willing to do anything because he got a negative biopsy even though there was obviously something weong .kuckily i had gp support and we looked into ent consults at the same hospital which he got an emergency appoinyment with
he was much better and supportive i guess what im trying to say dont give up on what you want . i spent nearly eighteen months listening to medical profesionals (sp)saying we dont know but since ive been comming on here i now stand up for myself and ask more questions
if any one says i dont know now , i always say what are you going to do about it then
it stems from an earlier stay in hospital may 09 when a ward sister said i dont know why there keeping you here my daughter suffers from nose bleeds and she does not make a fuss !!
recently went back on same ward when i i had blood clots in my lung had a room on my which she never came near !! even when the other staff who knew me all came to say hi :unsure:
so now with diary in hand and Sangye Elephants etc advice ringng in my ears i ask for answers more often
thanks guys DEEx

freakyschizogirl
10-19-2010, 07:52 AM
it stems from an earlier stay in hospital may 09 when a ward sister said i dont know why there keeping you here my daughter suffers from nose bleeds and she does not make a fuss !!


OMG!! i had that when i had my first ever major nose bleed. When i was just calmly eating my breakfast before work and then flowing river of blood. I was terrorfied. Even tho all the docs said it was nothing, probably high blood pressure (i've never had high blood pressure).

They did make me feel like i was making a fuss about nothing. Whats a little blood??

DEE
10-19-2010, 08:06 AM
hard not to make a fuss !! when your bed is covered in blood when you wake up during the night took more notice the next night !!! even transported there and back to another hospital to find out what was happening:rolleyes1:

freakyschizogirl
10-19-2010, 08:15 AM
blimey Dee. That sounds awful. How can they say you're making a fuss when your bed is covered in blood. I normally wake up if i have a nose bleed in my sleep.

eileenv
10-20-2010, 05:44 AM
Thank you Dee and Sam, well of i goes for the rheumy's appointment and took a friend with me, i won't go into details as it is to much to say, but it became rather heated. My anca has always been weak poswith the pr3 at 32 and today it came back neg, but the crp and esr are still at 50. I played to much on how many phone calls i had to make to the admin staff 10 in all becauce they lost the urgent referal it was when he said i can't help with what goes on there it becauce of 15 years of a labour gov so i gave to him saying there no comunication between the two of you he blew a gasget saying you always get a copy of my letters i said i know i do but no one else does!!. Then i asked if i could have a referal to Addenbrooks, he said there's no need to go there we have perfectly good vasculitis team at Queens (thats our main hospital i see him ar a local community hospital i see the ent at Queens) He is the clincal directer of queens and can be quite overpowering, i asked how many weggies he see's and he said 30.He examined me really well and done an ecg as my pulse was132 but my pulse has been high ie over 100 for a few weeks. So the crunch is he want's me to have the biopsy as me said he will be treating me blind and how toxic some of the meds can be.

freakyschizogirl
10-20-2010, 05:48 AM
Blimey eileenv!! What a fight.

And i thought mine were bad.

What is your thought on the biopsy. And he's hardly treating ya blind!!

eileenv
10-20-2010, 06:01 AM
I think when he mentioned treatin me blind is that he want to start me on immun and increase the pred. He saw my hands were fingers were swollen and i said how pain pain my jiont are and he said when the pain is bad instead of 7.5 take 15 for a week, He said to my friend before he came in to examine me she is one unhappy lady. He is always more pleasent when someone is with me. I had to laugh when he said i was taking to much pred just because i told him i took an extra ten when my hand were so bad i couldn't do anything with them and they have become very weak i have no strength not even to unscrew a top or carrry anything remotly heavy. If i do increase the pred i will taper it back down to 7.5 but i don't feel happy regulating this myself.

freakyschizogirl
10-20-2010, 06:31 AM
well you shouldnt be regulating it yourself...thats what specialists are for!!

elephant
10-20-2010, 06:54 AM
I don't like the sound of this Rheumy! You got to go somewhere else Eileenv...you hands are swollen because..I think WG is still active. I am sorry that you are going through this.

Sangye
10-20-2010, 01:30 PM
Eileen, it's extremely dangerous to bounce your pred all over the place like that. You should not be doubling it for a week whenever the pain is bad, as opposed to treating the active Wegs properly. He's making a typical uninformed doc mistake-- using pred as the main engine to control symptoms instead of the immunosuppressant drug. It's ok to do that occasionally, but he's suggesting it on a regular basis.

It's dangerous to your adrenal glands to double and halve the pred dose like that. I agree with Elephant that you've got to go somewhere else.

Jack
10-20-2010, 07:45 PM
It really worries me too. Pred can not be treated like Asprin!

I like to think that I am fairly familiar with the drug after all these years, but it is a very rare occasion if I resort to increasing my dose and then only for a few days. Remember that pred does not cure anything, it just suppresses the symptoms.

eileenv
10-21-2010, 01:18 AM
Thank you all for your replies, i really feel at a loss at knowing what to do as i handle the consultation yesterday not very well ie not really having it out the most important issues, even when he said all he had to go on was jiont pain and some sinus issues i should have said what about the skin lesions which he urgently reffered me about also the mouth ulcers which althrough i never had any when i saw him the dermatologist saw them and documented it in her letter to him. No i am very angry and i know what you are all saying is so true, i feel like not getting any medical help at all but then of course i know that is silly and would be playing right into his hands saying it is my behaviour. No wonder that my pulse was 132 but as he is clinical director of this area if i got reffered to another rheumy they won't go against him. I've had a few tears but now i must pick my self up and try to think of something else, i have rung addenbrooks and ask them to get back to me and my daughter might be able to pay for a private consultation with Dr David Jayne at Addenbrooks just for his opion. I won't increase the pred not without proper guidelines and if any of you have any other ways i could go about it i would greatly appreciate your help.

malin
10-21-2010, 02:47 AM
Eileen, please read through these links:

Hospital complaints (http://www.nhs.uk/choiceintheNHS/Yourchoices/hospitalchoice/Pages/Hospitalcomplaints.aspx)

Patient choice in the NHS (http://www.nhs.uk/choiceintheNHS/Yourchoices/Pages/Yourchoices.aspx)

Addenbrookes is a NHS hospital, so you should def. not have to pay to be seen by them!

Take a look at this link as well: http://www.cuh.org.uk/addenbrookes/patients/patient_choice/patient_choice_index.html

You have a LEGAL right to choose which hospital you want to go to and you GP can refer you just as well as the rheumy can. Please don't let them walk all over you, this is too important!

elephant
10-21-2010, 02:54 AM
Eileen, I know it is tough to find a WG consultant, if it weren't for this forum ....I would be in big dododododooooo! I am so thankful that people on this forum really pushed to get to a WG specialist or a good rheumatologist. We are here for you and when your ready start making the necessary calls.

Jack
10-21-2010, 02:59 AM
The problem you will have if you go private is that the whole of the treatment then has to be done on this basis and if you want to return to being treated by the NHS you will have to start again with a fresh referral. I did this when I first had symptoms because they were unbearable and I could see a specialist on the following day if I paid for private treatment. I did not know my way around the system at that time or I would never have taken this route.

eileenv
10-21-2010, 04:18 AM
Thank You Malin Jack and elephant, I ring those numbers and no way ccould i pay privatly as i haven't been able to work since i left nursing with arthritis i was only going to go for one private consultation Jack. AS it is after five pm here i won't be able to ring till tommorow, but i will do it first thing in the morning and will get back to you as soon as i have made the calls, my gp said write and see if the pct will fund you, but i will ring them and then put it in writing, thanks again, it gives me hope that i will eventually get there.

eileenv
10-21-2010, 04:34 AM
Malin, i have just looked up patient choice in the nhs and yes as far as i can see you CAN choose what hospital you want to be seen at. I have been straight on the phone to gp but they are not answering the phone for appoitments so i will phone first thing in the am. I am really mad when i have already been there and asked for this. I thought it was funny when i ask the rheumy yesterday about referal to addenbrooks he didn't say NO he said you don't need to go there we have a perfectly adeqate vasculitis facilities here ie him and the ent, he then went on to be really mellow and said to fight this disease you have to stay calm!!. :angry:

elephant
10-21-2010, 05:14 AM
So so so so glad you are going somewhere else. In the meantime just enjoy and have a good ring tomorrow!

freakyschizogirl
10-21-2010, 05:16 AM
he then went on to be really mellow and said to fight this disease you have to stay calm!!. :angry:

Well he's really helping with that then isnt he? lol.

Well next time they say i need a referral i will remind them a patient has choice of where they are treated. People really dont like you knowing your rights so they??

Oh and i got my flu jab booked for the 2 Nov....tho everyone around me has colds and i dont think my nose will save me this year. Previously i had attributed me not getting regular colds down to my nose being so blocked but now the old sinuses are moving i think i could really be in for it this year!

eileenv
10-21-2010, 06:31 AM
No you are right Sam they don't, hope you don't get any colds or coughs, you will have to go around wearing a mask!!

berylj
10-21-2010, 07:58 AM
hi eileenv
wow felt so angry how you have been treated!!i attend dr jaynes clinic & i know he has patients from all over uk,i thought it is your right to ask for a referral, i wonder if some docs think they have failed if patients ask for one, your health is more important than there egos!!
good luck berylj:mad1:

Sangye
10-21-2010, 01:26 PM
he then went on to be really mellow and said to fight this disease you have to stay calm!!. :angry:
To survive Wegs you have to stand up for yourself, advocate for yourself, and get yourself to the best docs possible. You don't have to be aggressive about it, but if a doctor's ego is standing in your way, you might have to push him/her aside. Wegs waits for no one.

freakyschizogirl
10-21-2010, 11:08 PM
[QUOTE=berylj;27767]i attend dr jaynes clinic & i know he has patients from all over ukQUOTE]

Oooh another Weggie going to Addenbrooks!

Looks like me and eileenv arnt in the right postcode??

Jack
10-21-2010, 11:47 PM
Not sure how the system works between different areas, but I get treated by two different health authorities. One handles my kidney and Wegener's stuff and the other all the routine day to day stuff (and breaking bones! ;) ). There are patients at the renal clinic who come all the way from Wales!

eileenv
10-22-2010, 12:44 AM
Hi all, Just giving you an update on things. I got in touch with pals( for weggies outside uk they deal with events when things don't go according to plan) A very nice lady told yes we do have a choice but if we are outside our area then we have to write to a department called diffulcult decisions and state the reasons why, they then sit and make decisions every wednesday. Also have to get a referal from gp stating the clinical reasons for referal. I have a good idea on how to word but any ideas that you think might would be gladly appreciated.

elephant
10-22-2010, 03:36 AM
JanW is the writer on this forum, but ideas...hmmm. I would list all your symtoms, disease status, medicines your on, activity level, how the disease is progressing. That is all I can think of right now.

JanW
10-22-2010, 06:25 AM
I always think that the best thing to do is tell your own story in your own words, and why you feel as though you life may be on the line if you do not get seen by a specialist (sorry to be so blunt).

Geoff
10-22-2010, 06:48 AM
I agree Jan, and there's also the 'mental' aspect to consider. If you believe that you are seeing a top specialist, the fear and associated worry that can always lurk at the back of the mind, and possibly hinder your recovery or treatment, can be eliminated. Go with your gut feelings Eileen and pour it out there.

eileenv
10-29-2010, 04:19 AM
I thought i would let you know the update, saw my gp this morning for a letter for the decision panal who decide if i go to Adenbrooks or not. He didn't want to refer me said it is best that your rheumy refers you, to which i replied he dosen't think there's any need to. I then went on to tell him about patients choices in the nhs he then reluctantly said he would fax them saying i wanted a second opinion. I've already sent my letter PHEW, while i was asking him i kept thinking about cindy's poor mum, and how maybe it could have been prevented.

freakyschizogirl
10-29-2010, 05:15 AM
Good to know Eileen...keep up the fight. I'll be there in december! Rheumy wants to see me before referring me.

elephant
10-29-2010, 05:51 AM
Glad you told your doctor about your rights! It is a fight isn't it??

freakyschizogirl
10-29-2010, 05:53 AM
I was just thinking how apt the title of this thread was! Dunno why me and Eileen seem to be getting the short end of the stick

freakyschizogirl
11-05-2010, 08:48 AM
Saw my chest consultant on tues. He gave me a 30 min lecture about losing weight. I said to him i had always been overweight. not once in my life have i ever complied to a BMI chart and i cant see that changing anytime soon. He's gonna do a cholesterol check (and i said why doesnt he check for diabetes if he's gonna take the piss...i've never had any health issues because of my weight)
He is also gonna prescribe me some Vitamin D and Calcium tabs to help protect my bones. He is also gonna write to my Gp that i should have a referral to Addenbrooks (as you may remember my Rheumy wont refer me til i see him in december and we talk about it) I told my chest consultant i was entitled to a second opinion and i dont have a lot of confidence in my Rheumy considering that he left me for 3 years with an active disease (either wegs or lupus and they were pretty sure it was lupus back then). He said i was right and he would do the same in my position although he did say he thought my Rheumy was one of the best about and takes his wife to see him for Arthritis. And that i was unfortunate to have slipped through the net. i said well i'm not taking the risk of slipping through again.
He gave me my blood test results and i finally know what my PR3 is 18.3. He also showed me the results of my echocardiogram and underneath he has written "This is a normal Echo!" i said well at least something is normal. Lung function test is all good and normal too so no lung involvement! Tho he did say he would retest me in 6 months.

Saw my GP to get my perscriptions done and dusted and also had my swine flu jab...and i am feeling hot and cold flushes today because of it. Not to mention it is sore and red. Ouch!!

Been having some headaches and sinus pain in my nose and above my eye. Hard to tell if its cos the steroids have kickstarted my sinuses again or from the Methotrexate...

elephant
11-05-2010, 09:44 AM
First of all your kidneys are not in good shape, you are going to retain fluid. I could see if he wants to send you to a dietitian because of low calcium, high potassium...ect . You are trying to get well and I think that it's inappropriate for a doctor to say that to a patient. If a patient is relatively healthy then send them to a dietitian, but just don't tell a patient to "lose weight!" I am so glad you are going to Addenbrooks. I am happy to hear your Echo was normal and good news about your lungs. Keep an eye on the sinus and headache it could be a flare.

freakyschizogirl
11-05-2010, 09:46 AM
Oh i now elephant. i did say send me to a dietician thena dn he said well i don think he could tell you anymore than you already know. And in his experience no one ever lost weight from seeing one!
I'm a stress eater...and lately i have been reaching for the food more often than i should and i know this. But i walk my dog for at least 40mins a night now...And i have been the same weight give or take about 5 pounds for at least 3 years now...so ok i'm not losing any but i'm not putting on any either

elephant
11-05-2010, 09:52 AM
Your doing really good walking with the dog. This is a stressful time for you and don't beat yourself over it. You have not gained much weight. Most important thing is getting yourself in remission and taking good care of yourself.

freakyschizogirl
11-05-2010, 09:56 AM
Ya thanks elephant...its actually thanks to the pred i'm doing the walking. When i was on 60mg i felt like i could walk for miles and miles. Although i am now down to 10mg and have lost that high feeling i still walk him as far as i can. Which as i say is at least 40 mins...if not more. He comes back knackered and for a Lercher that says something!

To be honest elephant i dont know if i would notice if i was flaring...being that my only sign of active wegs is my nose. And i've had various pains in my nose for years now! Hard to tell which is which. I also find it hard describing my pain.

eileenv
11-05-2010, 10:37 PM
Sam, i'm glad that you got the refferal, My GP sec rang me and said he's sent a letter of refferal to Addenbrooks, so maybe i will be seeing you there after all!!.

Geoff
11-05-2010, 11:54 PM
Hi Girls, Just come down the M11 and I can report there was just light traffic. Wore my new 'Pred Rage' Hoodie to Addenbrookes today but it was so flaming hot in there I had to take it off!! :blushing:

eileenv
11-06-2010, 03:26 AM
How did you get on Geoff, How long does it take you Geoff? Did you show your hoodie to Dr Jayne!!, Stripping eh, do hope you stoped at the hoodie Geoff, it's a respectable place!!

freakyschizogirl
11-06-2010, 05:55 AM
Had to giggle. Eileen and Geoff you're too funny.

I can just imagine Geoff doing a strip tease for Dr Jayne.

Geoff
11-06-2010, 07:19 AM
Didn't you recognise me from 'The Full Monty' Sam? - You are right tho' it pays to have a sense of humour!!

I was talking to Dr Jayne today about my eyes, i.e affected by bright light etc and he asked me if I had seen the Optician at Addenbrookes.....wait for it,..... I said no, my eyes wernt up to it, Boom Boom. :lol:

freakyschizogirl
11-06-2010, 09:07 AM
very funny Geoff... Was the doctor impressed??

I think we've all got a good sense of humour on this forum...it definately helps. Have to laugh at yourself.

eileenv
11-07-2010, 02:54 AM
Glad you got on okay Geoff With your appointment with Dr Jayne, so he see's 250 with wegener's. It's good that you can see an evt specialist all in one day, it took me over three months to see one on both occaisions i was reffered urgently, a lot of difference wouldn't you say. Did you see the optician as well? of course once your eyes recovered!!.

Geoff
11-07-2010, 08:59 AM
No Eileen, but I will get an appointment with my general optician. Dr Jayne tells me that the steroids will affect my eyes and 'change' the shape, thereby altering the focal plane etc. I gues we all know that the drugs we take come with a price.

eileenv
11-08-2010, 03:22 AM
Yes i found out that steroids effect your eyes, i have been on alow dose 7.5 for over ayear now why he's tries to find the what's wrong, they have effected mine. Roll on Addenbrooks, maybe i will hear next week.

Geoff
11-08-2010, 09:21 PM
Let me know when you hear Eileen and I'll give you a few tips about getting there, parking etc. Fingers crossed for you and some good news for Christmas!!

eileenv
11-09-2010, 12:26 AM
Thanks Geoff, I will keep in touch, i got a letter to go for my 24 tape next thursdayand see what they make of the tacycardia. So i will be all wired up and i have got to keep a diary of what i'm doing when i get the palpitations. Now Geoff, just don't say nothing:rolleyes1:

Geoff
11-09-2010, 02:13 AM
My lips are sealed Eileen and I promise not to start stripping again! :ohmy:

Doug
11-09-2010, 03:07 AM
...He said i was right and he would do the same in my position although he did say he thought my Rheumy was one of the best about and takes his wife to see him for Arthritis. And that i was unfortunate to have slipped through the net. i said well i'm not taking the risk of slipping through again....


Considering "slipping through the net" can kill us, I hope your excellent Rheumatologist understands his professional standing means nothing if he doesn't have your confidence.

freakyschizogirl
11-09-2010, 05:10 AM
Considering "slipping through the net" can kill us, I hope your excellent Rheumatologist understands his professional standing means nothing if he doesn't have your confidence.

Couldnt have said it better myself Doug. I told him i had no confidence and i wouldnt let myself slip through the net again.
He left me with an active disease, untreated, for 3 years. Thats not good in anyone's books. I'm lucky i havent got lung involvement or any other serious symptoms other than my sinuses

berylj
11-09-2010, 06:35 AM
Hi geoff
see you have recently been to dr jaynes clinic,did he mean for you to see dr meyer who is the optician who works with dr jayne at the hosp. is your wg back under control ? im now stable & have to take 5 mg pred & 100mg azathioprine to stay that way! but its th e best i can hope for,so i now visit the clinic every 3 mths, so its not too bad, at this stage i usually see one of dr jaynes asistants,
:scared:in fact i now get worried when i see dr jayne!( FLARE) ( flare)
a new road has just opened direct to addenbrooks from trumpington tho i dont know if it would help you on your journey on m11
good luck from berylj

elephant
11-09-2010, 06:50 AM
Berylj, so good to hear you are doing great on 5mg of PREDNISONE!!! YAHOOO!!!

Geoff
11-09-2010, 07:12 AM
in fact i now get worried when i see dr jayne!( FLARE) ( flare)

Hi Beryl, I know what you mean!! I was glad to touch base with Dr Jayne as he answers all those tricky little questions with that certain confidence. Congratulations on getting to 5mg and hopefully some ongoing stability. I am due to go back in the middle of January so maybe I'll see you somtime!!

freakyschizogirl
11-09-2010, 08:03 AM
Hey Geoff dont forget me Eileen and Malin!! We're all coming!! lol

eileenv
11-09-2010, 09:16 AM
What's that Geoff, oh you have decided to go to a local Rheumy, i wonder why:w00t:

eileenv
11-09-2010, 08:30 PM
Hi Geoff, I thought i'd let you know, on the Stuart Strange site, Dr David Jayne is giving a four hour talk on vasculitis. This is being given at at a hotel in cambridge on sunday 26th. they have only sixty tickets.

berylj
11-10-2010, 08:30 AM
thanks elephant & geoff
its been a 4 yr rocky road to get to my 'new normal 'as they say! have to take each day as it comes
i hope that freakyschizogirl, eileen & malin soon gets good news from dr jaynes clinic
:love: for me that man walks on water!! berylj

eileenv
11-11-2010, 03:55 AM
Hi Berylj, Thanks for the mention, my gp sec rang last week to say that my gp is reffering me to Addenbrooks. It's good your gp was so supportive in reffering you. Was your second biopsy positive? Have you any other organ involement? Hope i'm not being to nosey.

Geoff
11-11-2010, 05:06 AM
Hi Geoff, I thought i'd let you know, on the Stuart Strange site, Dr David Jayne is giving a four hour talk on vasculitis. This is being given at at a hotel in cambridge on sunday 14th. they have only sixty tickets.
Thanks for that info Eileen. I have booked my seat and so its back up the M11 again but strangely this time on a 'social' visit.

I'll pass on your sentiments Berylj and see if I can make him blush!!

eileenv
11-11-2010, 05:37 AM
Yes Geoff really disappointed to have to miss this gathering and talk, that nice you get to ask a question and Dr Jayne answers. don't even get that with my appointment with Rheumy!!

freakyschizogirl
11-11-2010, 10:19 PM
Indeed Eileen.

You have to let us know what is said Geoff. I'd be really interested.

Have to think of some questions for Dr Jayne!!

berylj
11-12-2010, 07:20 AM
Hi eileen
i was lucky that at the time addenbrookes was my local hosp. kidneys were worst affected now have 35pc function, also have most of the other probs that goes with wg, biopsy was thought to be too risky for already damaged kidneys,
i moved here (midlands) to be near my family 2 yrs ago, as i would be 70 miles away made sure i could still attend dr jaynes clinic, otherwise i would have stayed where i was!
dont worry about being nosey, ive got medals for it! berylj:smile1:

eileenv
11-12-2010, 09:28 AM
Hi berylj, sorry to hear about your kidneys, Glad despite the move you are still able to attend addenbrooks. My gp reffered me last week but when i phoned addenbrooks they haden't received it, but the secretary was good she said she was going to ring my gp and then get back to me. I won't let it go as the gp was told by the pct to refer me always got to fight just to get what your entitled to.:mad1:

Jack
11-12-2010, 08:48 PM
If you live in the Midlands, are you anywhere near the QE Hospital in Birmingham. It is one of the countries leading Vasculitis research centres. (And it is the one that I go to)

eileenv
11-13-2010, 02:44 AM
No Jack, i live in Romford, essex, but thank you for asking. I spoke to the nurse again this pm who attends Dr Jayne clinic and she Phoned my gp and ask them to fax the refferal, still she received nothing and after several phones calls had to call it a day. I got a copy of the refferal this am and the nurse has ask me to send a copy of the letter in.

eileenv
11-14-2010, 06:30 AM
Today i recieved a letter from my rheumatologist he has heard that i wanted a second opinion and he has now has reffered me to Addenbrooks, also stating in the refferal that he looks forward to hearing what the experts at addenbrooks has to say:thumbup:

elephant
11-14-2010, 07:48 AM
That is great Eillnv, so glad you are going to get that second opinion. We are all moving forward!

Geoff
11-14-2010, 08:13 AM
Well Done Eileen for all your tenacity, how true the title of this thread rings....'Always A Fight'. I hope you get the answers you are looking for.

Sangye
11-14-2010, 12:49 PM
Yay for you, Eileen! Glad you hung in there. :smile1:

DEE
11-14-2010, 08:34 PM
thats great news Eileen DEEx

DEE
11-15-2010, 11:54 PM
Just rang hospital to see how long my URGENT referral to the dental unit would take before i got an appointment
answer within the next twelve weeks and arrange treat after that !!!!!!!
i explianed that i had lost another tooth last week she said that would be the earliest :w00t:
will see if wg consult can help on thursday

elephant
11-15-2010, 11:56 PM
Oh Dee, I hope they can get you in sooner! Hope your visit with the WG doctor goes well.

Sangye
11-16-2010, 12:37 AM
Yikes. I hope your Wegs doc can pull some strings for you. Does your tooth hurt? Did the roots come out? I'm still cringing...

freakyschizogirl
11-16-2010, 12:52 AM
Just rang hospital to see how long my URGENT referral to the dental unit would take before i got an appointment
answer within the next twelve weeks and arrange treat after that !!!!!!!
i explianed that i had lost another tooth last week she said that would be the earliest :w00t:
will see if wg consult can help on thursday

According to my Rheumy a urgent appointment is 12 weeks. I'd hate to know how long a routine one would take!! Good luck Dee

DEE
11-16-2010, 01:10 AM
did well with eye consult waited only four weeks and firsf op four weeks later :thumbsup:
Thanks guys
Sangye no both roots still in gum plus two others need to come out as cant be saved but my dentist says it to risky to do at the dental surgery
it made choosing from a fantastic buffet at a party i went to on saturday night very interesting :ohmy:

Sangye
11-16-2010, 01:36 AM
I hope your Wegs doc can push it faster. From a Wegs perspective, having untreated tooth issues like that stress the immune system and also raise the chances of developing infection. I wonder if that's part of the trouble they're having getting your Wegs under control, actually.

DEE
11-16-2010, 02:01 AM
nothing would suprise me Sangye , will let you know after thurs
i hear what you are saying and im worried about picking up any kind of infection before i get my cataract done

freakyschizogirl
11-22-2010, 11:09 PM
Hey
Update from me...i have an appointment with Addenbrooks!!
For January 2011 but hey its better than nothing. lol

Dunno whats wrong with me this week. Feeling very fatigued. Lost all my zest. Have to push myself to do the littlest things. Hoping its just a winter thing and not the Wegs. But it most likely is.

Anyone got some tips on boosting my energy levels without resorting to sugar, lol.

malin
11-22-2010, 11:15 PM
That's great news! :)

I have the same problem with the fatigue, it's horrible! The only thing I can suggest is to make sure you eat good meals and good snacks. Make sure you get a good, filling, slow-energy releasing brekkie, lunch and dinner! :p I have porrige in the morning, salad with ham or chicken for lunch with some nuts and stuff for snacks and then a nice dinner :p
Other than that, try to have a mid-day nap is possible, although it doesn't work for me (makes me feel even more tired) I know it works for others.

Take care!

(ps. I havn't abandoned the forum, just busy with work and sorting things out for x-mas!) :)

Jack
11-22-2010, 11:31 PM
Great news about the appointment. Perhaps you will now receive the treatment you need.

A sudden lack of energy worries me a little. Perhaps you should ask your GP to test urine for Protein and Creatinine just to make sure. It is only a dip test and you could even do it yourself.

malin
11-22-2010, 11:34 PM
A sudden lack of energy worries me a little. Perhaps you should ask your GP to test urine for Protein and Creatinine just to make sure. It is only a dip test and you could even do it yourself.

Interesting... what could/does a dip test show?

Geoff
11-22-2010, 11:45 PM
Hey
Update from me...i have an appointment with Addenbrooks!!
Great News Sam!!

Jack
11-23-2010, 12:34 AM
The tests I was referring to are to check for kidney problems. Because of my own background it is something I always worry about and they are so simple that there is little reason not to do them.
Kidney problems show very few symptoms, but lack of energy is one of them. However, with Wegener's, lack of energy is always a problem anyway.
I'm about to take an hour's nap myself now! ;)

Sangye
11-23-2010, 01:17 AM
Sam, I agree with Jack. A sudden dip in energy has always indicated trouble for me. I suggest routine blood work with comparison to your prior reports, in addition to the urine dip.

Glad to hear you're going to Addenbrooke's. Hooray for THAT! :w00t:

elephant
11-23-2010, 03:49 AM
Wonderful that your going to Addenbrookes in Jan.
Yes Sam need to check on your low energy...it is a sign that something is not right.

freakyschizogirl
11-23-2010, 07:17 AM
lol thanks guys...so happy i finally got my way. And it only took a week from my chest consultant writing to my GP to ask her to refer me, to her doing the referral and getting the appointment in the post!! Amazing after the weeks its taken to get to this point.

I'm hoping the low energy is just a monday thing and that i feel better tomorrow. I've felt like this before tho and my GP dismissed it as anaemia. I survived that. lol and that was before diagnosis. But i was ever so low. Really dont wanna go back there again.

freakyschizogirl
11-27-2010, 08:56 AM
Hey all...
Just wanted to ask a quick question if anyone has heard of or is taking Adcal D3. My mum says she's remembers me saying to her not to take her Calcium pills for health reasons...must be the pred working on my brain cos i dont remember this at all!!

My bones are definately feeling different. My back clicks every day now...many times. Never been an issue with my back before.

So started the Adcal this evening. Hope they ease off this clicking.

Was showing my mum my new drug this evening as she had got calcium on her perscription too. She said "how comes i get JUST calcium and you get Calcium plus Vitamin D??" I said its cos i'm seeing all the best Doctors. lol.

pberggren1
11-27-2010, 09:15 AM
I remember reading recently that eggshell calcium is the best source for supplemental calcium. What do you think Sangye?

Jack
11-27-2010, 09:18 AM
If you are taking Pred you should also be taking Calcium and Vit D, but there are potential health risks even with this (it has been linked with heart problems). Nothing comes for free! :wink1:

Sangye
11-27-2010, 10:42 AM
You need both calcium and vitamin D if you're taking pred (or have taken it). Sam, your bones aren't the problem, it's your joints. That's caused by the pred's effects on the adrenals-- makes all the ligaments more stretchy so joints are looser.

Phil, unless you can digest eggshells you can't digest eggshell calcium. The best form is calcium lactate, the second best is calcium citrate. Calcium requires stomach acid to absorb so take your calcium away from your acid-blocker. Calcium lactate and citrate forms are slightly acidic to help in their absorption.

As far as vitamin D, most of us likely need far more than in a typical OTC supplement. Most OTC brands contain 400 IU. I need 8,000 IUs to stay in the optimal range. Your docs should do blood tests for vitamin D levels at least twice a year (though Dr Seo has ordered them much more often for me). I suggest you avoid the prescription form of D-- ergocalciferol. It's an artificial form of D and while it may get your blood levels into normal range it won't give you all the benefits of true D.

freakyschizogirl
11-28-2010, 04:25 AM
Nothing comes for free! :wink1:

truer words have not been spoken jack!! Especially with the drugs and this disease. Thanks for clearing that up Sangye

freakyschizogirl
01-06-2011, 05:46 AM
Update on me.

Trying to get copies of letters from my Rheumy to my GP. Another fight i dont want to fight.

Rheumy's secretary says she cant give me the letters cos it has to go through the medical/legal department. I said thats rubbish cos Chest consultants secretary and ENT secretary both send me copies of letters without requesting permission. She sais its the way she always does it and wont budge.

So i ring Medical Records department. They said Rheumy's sec is right and it has to go through them. And that there is a charge for going through my records. I said i dont want you to go through my records i just want copies of letters as they go out and the Rheumy has said i am allowed copies. She said email us with your request and we'll get back to you. So i emailed them this afternoon and noting back yet.

Arrrrgh! Sick of fighting for what i know is my right to have!

On a plus note i see the big boys at Addenbrookes next week!

Hammy8241
01-06-2011, 06:32 AM
Just another one of lifes great games!!

You could contact the rheumy by post (snail mail) explaining the 'blockage in the system' and ask they include you in the distribution list.
Mine sends me a copy every time so it can be done without pain.

Good luck

freakyschizogirl
01-06-2011, 06:41 AM
Well i'll see what my email does. If i get nothing back i'm considering complaining about this secretary cos she really is the worst i've come across...and she's had some good competition!

Geoff
01-06-2011, 11:06 PM
Good Luck Sam in Cambridge next week, my next visit is the following friday (I'll catch up with you one day!!)

Geoff
01-07-2011, 03:58 AM
Good Luck next week Sam when you get to Cambridge. My next visit is the following week (I'll catch up with you one day!!)

freakyschizogirl
02-19-2011, 07:08 AM
Another update from me.
Finally got those letters i was fighting for and my Rheumy's tone and overall arrogance in the letters has really hurt me. :crying:

Although you'd have to read the whole letter to get a sense of the arrogance here is an example, "...previously seen in the Rheumatology clinic by myself in 2007 when diagnosis of Limited Wegeners was entertained. At the time she presented with epitaxis. Blood tests at the time were also positive for ANA and Anticardiolipin antibodies and hence possibility of Lupus was entertained. At subsequent (3 month) review her nasal symptoms had improved and her ANCA became negative(screen positive but Pr3 negative)."

Also they say in my current CT of sinuses i have a "granulomatous lesion in septum in addition to perforation." I was NEVER told this! Isnt this something they should be discussing with me? And more inportantly what is it?

And finally the following is a short bit from the most recent letter, "...tests done previously showed raised ESR but more recent blood tests showed normal ESR. I note recently checked ANCA positive (C ANACA Pr3 positive) ANA negative anticardiolipin antibodies negative."

Cant anyone help me with this language...i've never heard of a granulomatous lesion (my mum its just a scratch with a scab on it, love her sense of humour!:w00t:) and not completely sure what all the results mean...generally i know i am getting better but still puzzled by the blood tests. Please let me know if i'm fussing about nothing.

Jack
02-19-2011, 08:27 AM
Nothing to worry about in any of that, it is just a description of you first presenting with nose bleeds and because of your blood test result they thought that it might be a disease called Lupus (very nasty in itself!).

"granulomatous lesion in septum in addition to perforation." Just means that you were showing a lot of inflammation and even a perforation to your nose lining. ie. it was in a right mess!

ESR and ANCA are blood tests that indicate the level of inflammation taking place within the body. One normal, one positive and one negative is typical of the confusing picture that Wegener's can produce.

I'm simplifying it a little, but there is nothing there to be surprised by.

freakyschizogirl
02-19-2011, 09:03 AM
Thanks Jack, my Rheumy tends to just brush stuff away and not tell me about it. I knew there wasnt anything sinister there but i like to be well informed for when i go back!:thumbsup:

Just funny how he doesnt mention the fact he didnt keep me under review and left me out in the Weg wilderness for 3 years. :w00t:

Jeez, i've got so cynical in the last 10 months!

Sangye
02-19-2011, 03:20 PM
I don't see anything in the bit you quoted that was arrogant, etc... That's normal language for a doctor's report, including the word "entertained." Not that your doc isn't arrogant--he may be-- but the letter doesn't reflect it.

A granulomatous lesion is an inflammatory lesion--sort of like a crusty scab that bleeds easily.

freakyschizogirl
02-20-2011, 12:38 AM
I think you would have to read the whole letter to get a sense of the arrogance, those bits i typed out are just some that i wasnt fully sure i understood.

"A granulomatous lesion is an inflammatory lesion--sort of like a crusty scab that bleeds easily. "
I'm so ignorant but is this something that will heal??

Jack
02-20-2011, 01:45 AM
My nose was in a terrible state too, but it rapidly improved when my Wegener's symptoms were brought under control. It is now no worse than the sort of thing I could expect with a mild cold.

Sangye
02-20-2011, 02:52 AM
Yes, with proper treatment the lesions heal, but I don't know about what kind of scar tissue might remain. That's a question for a Wegs doc. If the lesions are on the septum, they will gradually erode holes in it unless the disease process is halted.

An interesting bit of info-- Dr Seo told me once that Weggies generally tend to either make granulomas or have vasculitis (inflammation and bleeding). He said the granuloma-types are easier to treat. I'm a vasculitis-type, which means my lungs like to hemorrhage. It's the hardest to treat. Rtx has been shown to be as effective as ctx, and is particularly good at getting vasculitis-types into remission.

freakyschizogirl
02-20-2011, 10:28 PM
An interesting bit of info-- Dr Seo told me once that Weggies generally tend to either make granulomas or have vasculitis (inflammation and bleeding). He said the granuloma-types are easier to treat. I'm a vasculitis-type, which means my lungs like to hemorrhage. It's the hardest to treat. Rtx has been shown to be as effective as ctx, and is particularly good at getting vasculitis-types into remission.

That is rather interesting Sangye. I know i complain too much when infact i am rather lucky with my Limited Wegs.

My moods are all over the shop at the moment, down to 7.5mg of Pred now, didnt think it would affect me at such a low dose, and i havent really had mood swings while i was tapering down, until now. :mad1:

I've had sinus pain alll week which started over my right eye and slowly went across my forehead. Add into that mix my nose is sore and crusty and my ever worsening post nasal drip.

Thanks for continuing to put up with me! :thumbsup:

Sangye
02-21-2011, 01:53 AM
Aww, you're not complaining, Wegs is tough stuff. :hug1:

When did you drop the pred to 7.5mg, and from what dose? If I've dropped too low I get very depressed and tearful. Your sinus and nose symptoms also make me wonder if the pred is too low or was tapered too fast.

freakyschizogirl
02-21-2011, 02:41 AM
Aww, you're not complaining, Wegs is tough stuff. :hug1:

When did you drop the pred to 7.5mg, and from what dose? If I've dropped too low I get very depressed and tearful. Your sinus and nose symptoms also make me wonder if the pred is too low or was tapered too fast.

I dropped from 10mg to 7.5 by alternating days of 10 one day to 7.5 the next for a month. Now i've been on 7.5 for well over a month. And until this week i've been fine. Apart from my mood swings which come and go with really high highs and then very low lows. I can be fine and then something will make me snap and lose my temper. My poor sis is normally on the brunt of this. And been very tearful over little silly things. My Rheumy's letter is probably a good example! :crying:

My nose symptoms are worrying me today, i've not felt this bad in months. Even after irrigation i've got no relief from the stuffyness and sinus pain. Gah! I see my Rheumy in 2 weeks. So i will see what he says. :confused1:

Sangye
02-21-2011, 02:44 AM
Well, that taper sounds okay. Have you been under more stress the past 2 weeks? That creates more demand on the adrenals, and the pred might not be able to keep up.

freakyschizogirl
02-21-2011, 02:56 AM
Not overly stressed...have had a few hiccups. And work is sometimes challenging but not more than i can handle. I was naughty and had my tattoos touched up last week. I think this week i will have to find time to chill out.

elephant
02-21-2011, 12:19 PM
About 18 months ago I dropped my prednisone down to 7 and my sinuses were not happy, so I had to increase it back up to 10 mg and it helped my sinuses tremendously. All the docs were ok with this. I waited about three to four months to slowly drop down by 1/2mg every 4 weeks. I am down to 4 1/2 mg today. I think some months I even decided to stay on longer, but so far so good.

Jack
02-21-2011, 09:37 PM
My problems start when I get below 10mg but for many years I was OK at 5mg. Unfortunately I can't get that low any more.

Hammy8241
02-22-2011, 04:06 AM
I've tried twice to get below 10mg but have had to increase both times.

freakyschizogirl
02-22-2011, 04:47 AM
Oh dear :sad:

Wasn't expecting it to affect me like this, i was thinking, somewhat naively, that i was gonna come off the pred and be ok....really hope this is just a hiccup and goes away. Fingers crossed. :thumbup:

DEE
02-22-2011, 05:01 AM
ok just come back from gp for same reason as soon as i get to 10mg everything does pear shape :w00t: going back on 12mg waiting for blood results to come back so i can consult wg consult
preds not keeping me awake :confused1:if anything all im doing is sleeping my days away !!
Hoping bloods will give an answer

elephant
02-22-2011, 08:20 AM
Oh Dee sorry your so tired, hope the docs can figure this out. How are your eye's?

freakyschizogirl
02-22-2011, 10:24 AM
My mum is down to 10mg too...blooming pred beast! :predrage:
2 weeks til i see my Rheumy. Hoping the sinus pain goes away til then.
I really, really dont wanna have to go back up on the pred, was dreaming of being off it by summer :sad:

DEE
02-22-2011, 07:14 PM
Oh Dee sorry your so tired, hope the docs can figure this out. How are your eye's?

Eyes doing fine back on friday for check up at hospital
Its my sinuses etc that are playing up i think i have a reason pain threashold but when down at 10mg :w00t:
at the minute i only have to keep still and im off to sleep again and if i try to push through it i just sleep longer :confused1:

chrisTIn@
02-22-2011, 08:35 PM
2 weeks til i see my Rheumy. Hoping the sinus pain goes away til then.
I really, really dont wanna have to go back up on the pred, was dreaming of being off it by summer :sad:

I'm keeping my fingers crossed for you Freaky.
Hope your sinus pain will go away...
Take good care of yourself!

Sangye
02-23-2011, 01:45 AM
Dee, I don't like that you're that tired. I still think the Wegs is smoldering.

DEE
02-23-2011, 02:27 AM
Sangye im beginning to think so to , full bloods will be back soon and then will get back intouch with wg consult putting up preds today has helped abit but i know its know answer
its the kind of sleep that you need now no matter what
was wondering if it might be blood count low as it had gone down last month and people keep telling me i look pale and tired :confused1:

Sangye
02-23-2011, 02:32 AM
My labs looked fine for a full 2 years while the Wegs continued to smolder. I knew it wasn't under control. Even Dr Seo thought it was under control, because my labs looked fine. Wegs docs can miss it, especially when the only evidence is symptoms.

I think if your blood count is low, there's a reason. That is to say, a low blood count is a symptom of a problem, not the problem itself.

DEE
02-23-2011, 04:24 AM
Understand what you are saying Sangye . cant remember if Imuran could be the cause
maybe just know im out of sorts a the moment :rolleyes1:

freakyschizogirl
02-23-2011, 05:07 AM
I'm keeping my fingers crossed for you Freaky.
Hope your sinus pain will go away...
Take good care of yourself!

Thanks christTIna. See Rheumy next tues. See what he has to say, been poked today for my blood test.

coffeelover
02-23-2011, 01:07 PM
Ditto! You go girl!

drz
02-24-2011, 01:41 PM
For those people who report problems going below 10 mg of Prednisone, when do or did the problems appear?

What problems did you experience?

I had been at 10 mg for couple months and went down to 9 mg a few days ago and haven't noticed any changes yet?

freakyschizogirl
02-24-2011, 09:25 PM
i went down to 7.5 form ten and have been fine for over a month, until now. Fingers cross the sinus pain seems to be going away again...

renidrag
02-24-2011, 10:52 PM
"Wasn't expecting it to affect me like this, i was thinking, somewhat naively, that i was gonna come off the pred and be ok....really hope this is just a hiccup and goes away. Fingers crossed. " (obviously didn't cite the quote properly)

It does happen, I am still in remission since June of 2010 and drug free except for Calcium,Vit 'D' and Coumadin. I had a DVT and embolism. I also know we have to be vigilant in listening to our bodies. I do still have bad days but am sooooo much better.
Dale

Geoff
02-25-2011, 02:15 AM
i went down to 7.5 form ten and have been fine for over a month, until now. Fingers cross the sinus pain seems to be going away again... Keep a diary as to the days affected and other syptoms...It could be just a cold or something? Make sure you uncross those fingers before you get joint pain!!

chrisTIn@
02-25-2011, 04:09 AM
i went down to 7.5 form ten and have been fine for over a month, until now.

Seems like a good idea, what Geoff says.
Keep a diary, so maybe you can see a pattern in the way you feel.

Good luck again, Freaky! :smile1:

freakyschizogirl
02-25-2011, 05:44 AM
Keep a diary as to the days affected and other syptoms...It could be just a cold or something? Make sure you uncross those fingers before you get joint pain!!

Its not a cold as i dont have any other symptoms. Feeling better today. Really should keep a diary but until this week it would've been empty! lol.
Was thinking of ya earlier Geoff, had to ring Stella Burns and rearrange a Adds appointment, such a lovely woman.
And thanks renidrag and chrisTIna. I seem to be more postive these last few days. I think its because i am trying to resist the fact that i could be on drugs for life. But had a heart to heart with someone at work who is on meds for life and it lifted me up again. Honestly dont know what i would do without my friends!

Geoff
02-25-2011, 07:33 PM
I seem to be more postive these last few days. I think its because i am trying to resist the fact that i could be on drugs for life. Its a Roller Coaster ride Freaky, some times when it gets to be a bit too much bare knuckle, just remember we are all in the same car holding on for grim death! Now that would be a picture to hang on the wall!!!!:biggrin1:

freakyschizogirl
02-25-2011, 10:05 PM
Its a Roller Coaster ride Freaky, some times when it gets to be a bit too much bare knuckle, just remember we are all in the same car holding on for grim death! Now that would be a picture to hang on the wall!!!!:biggrin1:

Yeah quite a picture...not a very uplifting one! lol

Geoff
02-26-2011, 12:24 AM
No offence Sam, just my sense of humour and vivid imagination. I can see you and Eileen in the front with your arms up waving with maybe Jack and Jadene just behind. Stop me someone before I lose it completley!

freakyschizogirl
02-26-2011, 05:41 AM
No offence taken Geoff...you keep going! Thats quite an imagination you have there!

gurinbasra
02-26-2011, 06:18 AM
Last year I began coming down from 10mg Pred which I had been on for a year. I found that about 4-5 days after, I felt very sick and unwell - enough to not go into work for a day or maybe two, but then after that, I bounced right back. Of course, since coming down was causing a relapse, I'm back at 10mg and since I've just had a Rituxan treatment, I am going to start the Pred decrease again in a few weeks. I'll see how I do this time, last time I made it down to 2mg before increasing again!

freakyschizogirl
02-26-2011, 07:59 AM
Right, we'll have a race then, whoever gets off Pred first wins....anyone else wanna join in? I'll think of a reward for the winner...

elephant
02-27-2011, 10:39 AM
Today I am down to 4 mg and my sinuses are not happy! I think I am going to have to increase it to 5 mg tomorrow and see how I feel. UGGGG!!

DEE
02-27-2011, 07:31 PM
Today I am down to 4 mg and my sinuses are not happy! I think I am going to have to increase it to 5 mg tomorrow and see how I feel. UGGGG!!

Sorry to hear about preds stuff had the same problem last weekend with my sinuses back on 12mg from 10 mg again !

Sangye
02-28-2011, 02:02 AM
Oh Elephant, I know how discouraging that is. It might take a lot longer to taper once you get below 5mg. I think you're tapering by 1/2 mg, but you might want to try 1/4 mg. I had to do that last year.

As badly as you want off pred (totally understandable!), remember that you've already cut it down by 50%. That's enormous, and is something you never thought possible. Hang in there! :hug2:

Hammy8241
02-28-2011, 05:59 AM
For those people who report problems going below 10 mg of Prednisone, when do or did the problems appear?

What problems did you experience?

I had been at 10 mg for couple months and went down to 9 mg a few days ago and haven't noticed any changes yet?


My experiences are that when ever I reduce my pred I have a week to 10 days of increased symptoms. For me this means increased sinus activity, dry eyes, sensitivity around the nose/scalp and reduced energy. If these symptoms fade then i feel confident that I can maintain the dosage - if not then I consider increasing again.

elephant
02-28-2011, 12:19 PM
Thanks Sangye, I think I will have to do that. I will start cutting the 1 mg pill into fours.

oaktreehill
02-28-2011, 08:52 PM
Ive recently been trying to come down from 7.5 mg per day to 5mg/7.5mg on alternate days... Did 2 doses of going down to 5mg and gave up! Felt awful.. too scared now to reduce any further !

malin
02-28-2011, 11:36 PM
When I've been trying to cut down it's always been a real struggle, I've gone down a few mg and then got a cold, felt worse in term of sinus pain/extreme fatigue or something else and then had to go back up again...

I seem to do alright on 10 mg n higher, going down from 10 mg is the real tricky bit. Although I'm doing fairly well at the moment, tomorrow I'm going down to 4mg!!!!!!!! Yahooo! It will be the lowest I've been on for over a year now! :w00t:

When I get down to 10 mg though I only reduce down by 1 mg a month, so its a loooooooong slooooooow process, and its not easy, but soooo worth it taking it slow, rushing a reduction of pred just doesn't work.

oaktreehill
03-01-2011, 01:08 AM
Ive just given up trying to reduce completly now ! "You'll find a point where you can't reduce any further" my rhumy said.... Think i'm taking her advice too literally now

malin
03-01-2011, 01:19 AM
Of course you should be able to reduce all the way down to nothing! You just need to let it take its time and reduce very very slowly!
Don't give up! I've been on and off pred ever since I was first diagnosed 7 years ago! The longest I was ever off pred was for 1 1/2 - 2 years, then I had to go back on because of a flare. But now I'm finally getting closer to being off pred completely.

As I said, you just need to take baby steps and reduce by 1 mg or even 1/2 mg per month!

LisaMarie
03-01-2011, 01:53 AM
Ok Mayo has a plan I will be down to 10 mg a day by May 19th...sooner if I can tolerate their plan....10 mg by april 3rd...so wish me luck...Dr Specks asked me to deal with the side effects of withdrawal and hopefully my adrenals kick in...then back up to Mayo for more test..Lucky Me..
Hey has any one had their CRP increase from 8 - 21 in 1 week on 40 mg of pred ...just wondering?

pberggren1
03-01-2011, 02:33 AM
I had my CRP jump from about 20 to 120 in a week or less, but I think I was on 10 or 20mg of Pred.

There are some of us on here that will never get off pred.

Sangye
03-01-2011, 03:52 AM
Malin, not everyone can get off pred. Dr Seo said people with bad sinus involvement have the hardest time getting below 10mg and many cannot get off pred completely. Having said that, everyone should definitely try with careful supervision by a doc who REALLY knows both pred and Wegs. Dr Seo has taught me a lot about what to look for and how important it is to go extremely slowly. And I've also learned a lot about my body's signs for "You're going too fast" as well as "You're going too slow."

Dr Seo also stresses that if you have Wegs that is not completely under control, you should not continue tapering off pred when you get to a certain point. That point is different for us all. The past few months I've been stuck at 2.5 mg because the Wegs was starting to wake up. He told me not to lower it any further until the rtx is fully kicking in.

coffeelover
03-01-2011, 08:18 AM
I agree with Sangye. Getting off pred has to be very gradual. I made the mistake of getting off, but it was only a matter of a few days and I was back up to 10 mgs. Now, I do not see an end in sight. I think I am one of those who will be on 10 or around there for a very long time.
LIsa

freakyschizogirl
03-02-2011, 02:56 AM
Saw my Rheumy today, what a waste of time.:glare:
30 mins after my appointment time i get called in by one of his lackies, who says hows this going and points to his nose. I ask him why am i seeing him i thought i'd be seeing my Rheumy. He says no, now that i'm stable and having routine check ups i'll be seeing him from now on. I say sorry and no offence but i want to see the Consultant. He lets me back into the waiting room and i wait another 30 mins. :ohmy:
I get called in by my Rheumy. I tell him about the sinus pains i've been having but i'm pretty sure its sinusitis. He tells me that in my blood tests shows some signs of "grumbling" wegs activity but not a flare. I said i know i'm not flaring i think its sinusitis. He then asks to have my blood pressure taken, although my blood pressure is ALWAYS normal. He then listens to my lungs and presses my face. Following this i got a 20 min lecture about how Methotrexate is a drug that maintains remission and if that wasnt working more aggressive therapies will be introduced, like Cyclophosphamide. And talks about upping the pred back to 10mg, something i say i dont wanna do unless completely necessary.
After this i asked him would my nose still have collapsed if i had been under observation. And he back paddles for all his worth and basically blamed it on the ENT. Saying that if the ENT had seen any disease activity he should've sent me back to him. I said there wasnt any obvious disease activity until my nose perforated and collapsed. :mad1:
I see the ENT in 2 weeks, i will be asking him the same questions. I guess i am still at the "why me?" phase. And i'm on a quest for answers. :confused1:

Anways i walk outta there with a perscription in my hand to go back up to 10mg of pred and up the Methotrexate from 15mg to 17.5 then 20mg. I'm still pretty sure the sinus pains are being caused by sinusitis. And i'm relectuant to go back up on the pred if its unnecessary. What do you guys think? I value your opinions.

Sangye
03-02-2011, 03:26 AM
I think if your labs are showing grumbling Wegs you have to go with that. I had that for 2.5 years and couldn't make any progress. I lost a lot of time and strength. A smoldering fire still burns the forest down, you know?

He is right about mtx. It isn't strong enough to get Wegs under control unless you have pretty mild involvement. Many times with grumbling Wegs you need to induce remission with ctx or rtx and then mtx will be strong enough to maintain control. Increasing the mtx dosage is good. If it's still not able to contain the Wegs, then you know you have to use something stronger.

I sense you are very frustrated with your rheumy. I can understand why, if you think he mistreated you and that resulted in a collapsed nose. It might be good to step back and assess whether you should stay with him or not. If you feel he has the skills to treat you, then you'll need to find a way to clean up your relationship with him. (I had to do that recently with Dr Seo, as we had gotten into a weird loop.) Sometimes our docs get frustrated with us when they give us their best advice and we give them a million reasons why they're wrong. LOL I've sure done that. Hang in there, Sam.

malin
03-02-2011, 03:27 AM
I can't say much about MTX, I've pretty much always been on 20-25 mg a week but as for going back up on preds... I know you really don't want to but if you do and then your sinuses gets better, then I think that might be a sign Wegs is poking around in there again?

As for your test results and what your Rheumy said about them, you should ask him more specifically about them. My Rheumy always shows me my results on her computer and she shows me how they have gone up and down over the year as well. If your ANCA, CRP and ESR tests are high, that could very well indicate Wegs "rumbling" or even a flare.

I've always been on MTX but my Rheumy is always vary about it, she monitors me very very closely so that if something did show up that is Wegs related, I would be put on ctx or something similar straight away.

My Rheumy explained that MTX doesn't really provide enough "cover" if wegs would spread to other organs, like kidneys etc, but for sinus/ears it is ok.

malin
03-02-2011, 03:29 AM
Haha just realised I started my message saying "I can't say much about MTX" and then about half my bloody message is about MTX anyway! LOL

Sangye
03-02-2011, 03:31 AM
ROTFL :lol::lol:

freakyschizogirl
03-02-2011, 05:36 AM
Cant i start by saying you two crack me up!! :laugh:


I sense you are very frustrated with your rheumy. I can understand why, if you think he mistreated you and that resulted in a collapsed nose. It might be good to step back and assess whether you should stay with him or not. If you feel he has the skills to treat you, then you'll need to find a way to clean up your relationship with him. (I had to do that recently with Dr Seo, as we had gotten into a weird loop.) Sometimes our docs get frustrated with us when they give us their best advice and we give them a million reasons why they're wrong. LOL I've sure done that. Hang in there, Sam.
Your sense are strong Obi Wan-Sangye. lol. I am debating whether or not to discharge myself, now that i'm with Addenbrookes. Funny how you can have a love-hate relationship with your doctor. I dont think he has the skills to treat Wegs, he deals with an awful lot of Arthritis patients and has seen several Wegs partients, i've no doubt he's a competent doctor, but just not the one for me.
I think its good to challenge your Doctors, just because they THINK they're right doesnt meant someone with a different perspective is wrong.

I cant say much at MTX either Malin. lol. My Rheumy is never very forthcoming about test results as he thinks i wont understand them, i had to ask him for my PR3 results at my last consultation and he looked shocked that i knew what it was.
I'd rather take the chance and see if its sinusitis, i've had it numerous times and thats what it feels like. I've had mucus on my chest for a while now and was getting concerned, but that would make sense if it was sinusitis. Rheumy listened to my chest today and couldnt hear anything sinister.
I see Addenbrooks in 2 weeks....i'll see what they suggest.

marta
03-02-2011, 05:48 AM
Hey Freaky,

Not sure how it works in England, but in Canada all patients have a right to have access to their labwork. All I had to do was get permission from the doctor to get my lab results, and because I know they're busy folks, I ended up writing the letter giving me permission and just had them sign it. Since then (I always get my labwork done at the same place) I just go in the day after the labwork and get a copy of it. I have all my results charted in a spreadsheet and can definitely see associations with my bloodwork and when I have either felt bad/off or when I had a flare.

As an aside... I am squealing with delight as my typing just got interrupted by the hospital calling me to let me know that the Rituximab infussion is on. Woooo hooooo... I'll find out in a few minutes when I go in.

JanW
03-02-2011, 06:08 AM
Good idea about Addenbrooks, Sam.

As one who also has a collaspsed nose, I will say that nothing in my health at the time would even have led me to have a seen a doctor, so there would have been nothing that could have been done about it. Once the bridge starts collapsing, it will pretty much fully collapse, and no one should fix it until your disease is well under control. It's a rare complication of a rare disease, so I wouldn't blame a doc too much. Honestly, at the Symposium the biggest gathering of people like this had maybe 25 in the room -- the vast majority of WG patients had normal noses.

DEE
03-02-2011, 07:00 AM
Sam
I have all my bloods at local GP ,they send copies to the consultants that need them and give me a paper copy , Which wg consult explianed too me so i can ring to ask about anything or incase he does not recieve them
I had to change GP awhile back I kept telling him something was wrong he kept telling me to try and lose weight and exercise more He missed the fact i was in the early stage of a major flare
So took Sangye s advice ask everything stand up for youself if you know things are not right and say if changes are not right for you
Hope you get sorted at Addenbrook takecare of you DEEx

drz
03-02-2011, 10:48 AM
Hey Freaky,

Not sure how it works in England, but in Canada all patients have a right to have access to their labwork. All I had to do was get permission from the doctor to get my lab results, and because I know they're busy folks, I ended up writing the letter giving me permission and just had them sign it. Since then (I always get my labwork done at the same place) I just go in the day after the labwork and get a copy of it. I have all my results charted in a spreadsheet and can definitely see associations with my bloodwork and when I have either felt bad/off or when I had a flare.

As an aside... I am squealing with delight as my typing just got interrupted by the hospital calling me to let me know that the Rituximab infussion is on. Woooo hooooo... I'll find out in a few minutes when I go in.

Congrats. They wouldn't dare turn down a big celebrity.:wink1:

Sangye
03-02-2011, 02:23 PM
Sam, I think that's a great plan. You'll know if you need to find a different local doc. :smile1:

Marta, hooray for getting rtx soon! Yeehaw! :w00t:

freakyschizogirl
03-03-2011, 12:16 AM
Thanks for all the replies guys, it has really put me in a positive empowered mood. :thumbsup:

You know i've just realised i'm happier at work at the moment than i am at home, i think its because at work i have a sense of purpose and things there are well regimented and "safe". I have a good routine there...

chrisTIn@
03-03-2011, 03:53 AM
That's good news!
You go, Freaky! :smile1:

drz
03-03-2011, 01:06 PM
Thanks for all the replies guys, it has really put me in a positive empowered mood. :thumbsup:

You know i've just realised i'm happier at work at the moment than i am at home, i think its because at work i have a sense of purpose and things there are well regimented and "safe". I have a good routine there...

See, already are getting better! Keep it up, girl:thumbsup:

It is nice that work feels safe for you.
A comfortable routine is very helpful.

Sangye
03-04-2011, 02:51 AM
That's good to hear, Sam. :smile1:

freakyschizogirl
03-04-2011, 04:46 AM
Still up today, 2 days in a row! Do i get a gold star now??:thumbup:

drz
03-05-2011, 03:43 PM
Still up today, 2 days in a row! Do i get a gold star now??:thumbup:

Yep, you earned two!! **:biggrin1::biggrin1:

freakyschizogirl
03-05-2011, 10:28 PM
lol thanks drz! i will wear them proudly!:thumbsup:

Geoff
03-06-2011, 08:23 AM
Great News Sam, just loving your POSITIVE Vibe.:thumbup:

marta
03-08-2011, 01:19 PM
Congrats. They wouldn't dare turn down a big celebrity.:wink1:

.... in my own mind. lol

freakyschizogirl
03-09-2011, 06:49 AM
Great News Sam, just loving your POSITIVE Vibe.:thumbup:

Hey Geoff, where ya been? lol

Still going good, see the team at Adds on friday, probably why i am feeling high! :hug3:

Geoff
03-09-2011, 07:35 PM
Right Behind you Sam!!! I'm off to Adds in 2 weeks and flying so high at the moment I've strapped a parachute on.

Good Luck on Friday and warn Stella that I will be bringing cakes up on my next visit as its so close to my birthday!! :drool:

freakyschizogirl
03-10-2011, 12:29 AM
lol ok you better leave one for me and Eileen!!

freakyschizogirl
03-12-2011, 01:17 AM
Hi All, just a quick note to say that Adds were all very happy with me, no sign of disease activity in my nose:thumbsup:
Vasculitis team disagreed with my local Rheumy about upping the pred and instead said to continue to lower it. So hopefully in a months time i will reach the 5mg mark! Got a steroid spray from the ENT and they will recalculate my mtx to my bmi - anyone heard of that before?
So all in all its good good good! Bloods look good, PR3 is at 3.3. :thumbup:
Next visit is in 2 months time.

renidrag
03-12-2011, 02:04 AM
Just wanted to say congratulations, what a wonderful day. Yeah for you!
Dale

DEE
03-12-2011, 02:49 AM
Wekk done Sam :thumbup::hug3::thumbsup: think bmi is body mass index ,which in turn means making sure your mxt does is the right amount for your weight etc sure someone will tell you if im wrong DEE x

DEE
03-12-2011, 02:51 AM
OPPS SORRY ABOUT SPELLING MISTAKE GETTING READING GLASSES TOMORROW :flapper:

freakyschizogirl
03-12-2011, 03:23 AM
Yeah i'm on such a high today...its just the news i was after. Even tho they wont entertain the idea or even slightly talk about reconstructive surgery on my hooter just yet it feels good. Adds said dont go back to my local Rheumy and i couldnt agree more! :thumbsup::hug3::hug1::blushing:

drz
03-12-2011, 04:29 AM
Hi All, just a quick note to say that Adds were all very happy with me, no sign of disease activity in my nose:thumbsup:
Vasculitis team disagreed with my local Rheumy about upping the pred and instead said to continue to lower it. So hopefully in a months time i will reach the 5mg mark! Got a steroid spray from the ENT and they will recalculate my mtx to my bmi - anyone heard of that before?
So all in all its good good good! Bloods look good, PR3 is at 3.3. :thumbup:
Next visit is in 2 months time.
Nice to hear some good news. Thanks for sharing this. i know they often base your meds on your body weight but didn't know they used your weight and height to calculate a BMI, but that might be the way it is done.

Daggar
03-12-2011, 04:56 AM
good news..... lucky you had a "2nd opnion" so to speak...

I believe that body mass index was used in Holly's case.... as she gained some needed weight from the time of diagnosis the numbers changed.

freakyschizogirl
03-12-2011, 08:24 AM
good news..... lucky you had a "2nd opnion" so to speak...

I believe that body mass index was used in Holly's case.... as she gained some needed weight from the time of diagnosis the numbers changed.

So glad i fought so hard for my second opinion now. It priceless. And reassuring to find Doctors who genuinely seem to care for you and your wellbeing. Not to mention how kind and curteous they all are, even down to receptionists and secretaries who i seem to have the most issues with. Big thumbs up for me! :thumbsup:

Geoff
03-13-2011, 06:03 AM
Great News Sam, I'm feeling the buzz that you are generating. Hope you behaved yourself and let Jonny get a good look at that likkle nose!!

Sangye
03-13-2011, 02:10 PM
It makes all the difference in the world to have confidence in your docs. Glad you persisted, Sam.

freakyschizogirl
03-13-2011, 11:53 PM
Great News Sam, I'm feeling the buzz that you are generating. Hope you behaved yourself and let Jonny get a good look at that likkle nose!!

I did Geoff, tho he went in without numbing it so my eyes welled up. Not the nicest experience! Eurgh! Well worth the 60 mile round trip!

freakyschizogirl
03-23-2011, 01:52 AM
Just another upate from me...

Saw my local ENT who admitted i had been failed by the hospital. He said the administration and communication between departments had been very poor in the past and the pressue of having to meet government targets had taken its toll. So that was nice, was expecting him to dodge the questions like the Rheumy did. He also said he'd refer me to see a Rhinoplasty specialist at Adds even though he is trained in Rhinoplasty himself he said i should see his colleague as he thought my collapsed bridge might need several operations as well as a graft. Lovely.
I asked him the biggest question and its the one that repeats itself round and round in my head, Would i still have a collapsed bridge now if i had been diagnosed earlier? He said he honestly couldnt say but felt sure i would've had some sort of collapse requiring surgery, but maybe wouldnt have been as bad as it is today. So overall quite impressed with his reponse tho i will never see Rheumatology in my local hospital again.

Chris G
03-23-2011, 03:44 AM
It sounds like you've had more than your share of frustrations with docs in the past. It must feel good to find docs you can feel confident with, and who will be honest with you. Thumbs up! :thumbsup:

drz
03-23-2011, 12:20 PM
Just another upate from me...

Saw my local ENT who admitted i had been failed by the hospital. He said the administration and communication between departments had been very poor in the past and the pressue of having to meet government targets had taken its toll. So that was nice, was expecting him to dodge the questions like the Rheumy did. He also said he'd refer me to see a Rhinoplasty specialist at Adds even though he is trained in Rhinoplasty himself he said i should see his colleague as he thought my collapsed bridge might need several operations as well as a graft. Lovely.
I asked him the biggest question and its the one that repeats itself round and round in my head, Would i still have a collapsed bridge now if i had been diagnosed earlier? He said he honestly couldnt say but felt sure i would've had some sort of collapse requiring surgery, but maybe wouldnt have been as bad as it is today. So overall quite impressed with his reponse tho i will never see Rheumatology in my local hospital again.

It sounds like you finally got a good hearing with a good doctor so things should get better from here on in. Good luck as it doesn't sound like an easy road with several operations likely.

freakyschizogirl
03-24-2011, 01:12 AM
Thanks drz. Yeah, a few ops doesnt sound very enticing! And to be honest i'd rather not but then again its getting to the point where i cant look at recent photos of me because all i see is that lovely indent where the cartelidge meets the bone. Looks like i've got a bruise in certain lights and if i've been wearing sunglasses people tend to pass it off as that (which happened to me today!).

JanW
03-24-2011, 03:42 AM
It may not be so bad, freaky. My doc says that the operation doesn't hurt very much (hurts more where they take the cartilage) and the wound is very small (tip of nose). You don't even get the black eyes or anything because they don't break bones or do anything that can interrupt the blood supply.

Just (obviously) make sure you get someone who REALLY knows what they are doing. My doc's fixed plenty of horrible jobs done by ENT/plastics guys who thought that our bodies worked like everyone elses and used artificial fillers, interrupted blood flow, etc. The key is that we have vasculitis, and the tissue that died once can easily die again....that's how we got the noses to begin with!

freakyschizogirl
03-24-2011, 05:34 AM
Food for thought JanW, thanks i will definately consider that, i'm not gonna let any old surgeon butcher me! lol. Gonna be very selective.

With my little hooter tho its not just saddle nose - its the hole in my septum and the collapse, plus Wegs. Dont i feel special!

DEE
03-31-2011, 11:29 PM
Feeling fed up . Started tappering preds again Sunday .Had to have extra bloods done this week and just to add to things mobility of right leg rubbish already just had a shower turned awardely sp getting out of the shower pulled something in left thigh aint life grand:rolleyes1:

Sangye
04-01-2011, 01:39 AM
Hang in there, Dee. :hug2:

DEE
04-01-2011, 02:19 AM
Thanks Sangye posted because it was just like you said so easy to do .I just turned to pick up my towel and felt something pull
gone through should I cry or laugh moment
Alright if i stand up ,just getting up from sitting postion interesting :ohmy:

Jack
04-01-2011, 02:35 AM
I can really empathise with you on this one! You think you are being careful with yourself and then the slightest thing you do awkwardly pulls something or causes some damage. I now try to concentrate on every movement I make, but still sometimes get it wrong.

Never mind. So long as you have not broken anything it is just a matter of time before you will recover. Hang in there and try to look after yourself. :thumbup:

DEE
04-01-2011, 02:53 AM
Thanks Jack just been laughing about it . I look like ive just got off a long ride on a horse when i walk :laugh: not a pretty sight

drz
04-01-2011, 08:49 AM
I can really empathise with you on this one! You think you are being careful with yourself and then the slightest thing you do awkwardly pulls something or causes some damage. I now try to concentrate on every movement I make, but still sometimes get it wrong.

Never mind. So long as you have not broken anything it is just a matter of time before you will recover. Hang in there and try to look after yourself. :thumbup:

The fact we need to concentrate on everything , even simple things like walking ten feet, or getting into a car, --Is that part of why we feel so fatigue so much of the time.

vdub
04-01-2011, 01:07 PM
3 nose operations in 3 years. Each was a pain both literally and figurativly, but each was worth the effort....

BrianR
04-01-2011, 02:26 PM
3 nose operations in 3 years. Each was a pain both literally and figurativly, but each was worth the effort....

"When the going gets tough, the tough get going". I don't know who said that originally but it describes the whole lot of you.

pberggren1
04-01-2011, 04:18 PM
That was Joe Kennedy that originally said that Brian.

DEE
04-01-2011, 06:36 PM
"When the going gets tough, the tough get going". I don't know who said that originally but it describes the whole lot of you. Know were you are coming from but its hard to be tough sometimes , laughter usually works for me but not this time think ive lost sense of humour at the moment . Had mega mood swing last night hubby tried to laugh me out of the situation but it didnt work this time. which made me feel worse and him also as it usually works so made him feel bad that he could not help if you know what i mean :predrage: