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DEE
10-05-2010, 04:14 AM
how long have you been taking it or been told that you will have to take it for ?
Just been reading notes i made at my last wg consult just checking i heard him right before i talk to him again
dont know if i can blame preds for brain malfuction as im lowering them at the moment:confused1:

Jack
10-05-2010, 04:51 AM
It may be different today, but the treatment plan that I was on 20 years ago switched me from Cyclophosphamide, then on to Imuran (Azathioprine) for about 6 months and then to Neoral (later changed to Cellcept) for maintenance. I believe that some patients these days stay on Imuran and don't make the last move. This may be because there is an intention to withdraw the drug altogether whereas in my own case, I need continuing treatment due to transplant.

DEE
10-05-2010, 05:09 AM
thanks Jack that makes sense.i tried Cellcept after ctx but had problems with it
symptoms started to appear again within a few days hoping Imuran works because mxt did not work either
fingers crossed

julia
10-05-2010, 09:36 AM
I have been on Imuran for about 6 months. I have no problems with it. The doctor said I will be on for 1-2 years.

Best of luck.

andrew
10-05-2010, 10:06 AM
I've been on Imuran for about....wow...must be getting on for five or six years now. No ill effects that I know of! My ANCA bobs up and down but on average stays the same.

pberggren1
10-05-2010, 10:09 AM
I've been on Imuran for about....wow...must be getting on for five or six years now. No ill effects that I know of! My ANCA bobs up and down but on average stays the same.

Why so long on Imuran? Is it because everytime you try and wean off of it symptoms come back and ANCA rises?

andrew
10-05-2010, 10:17 AM
Haven't ever been weaned off it to know (except for when I forget to take it!). When I don't take it I do notice symptoms coming back but that's a sudden stop rather than a tapered one and ANCA has never been measured in the process. To be honest I've never even considered asking about weaning off it. I have an appointment with my WG doc this month some time so might ask him.

pberggren1
10-05-2010, 03:21 PM
Haven't ever been weaned off it to know (except for when I forget to take it!). When I don't take it I do notice symptoms coming back but that's a sudden stop rather than a tapered one and ANCA has never been measured in the process. To be honest I've never even considered asking about weaning off it. I have an appointment with my WG doc this month some time so might ask him.

That down right scares me Andrew.

My doc said that he would induce remission with ctx for 3 months and then switch to a maintenance drug like Imuran for another 12 and if things looked good taper down over the next 2 to 3 months to nothing. He said there is no point staying on stuff like Imuran or Cellcept long term if it does not warrant it, like increased ANCA and increased Wegs symptoms. He said long term use just jeopardizes the patient in the long run.

DEE
10-05-2010, 06:46 PM
hi Phil never say never as we are all so different
i was on mxt for 8mths ,cxt for 12mths and cellcept for two weeks !!
ive started Imuran two weeks ago and was told i would be on for two years a the least possiably more if needed to keep symptoms at bay
thanks Andrew you have put my mind at rest as i thought i had not heard him properly but now i understaand
at the moment still having problem with joint pain but i think its due to tappering preds too and it been early days for new drug i hope:rolleyes1:
thanks again DEEx

elephant
10-05-2010, 09:26 PM
I had a kidney transplant over 20 years ago and I will never be off immunsupressants. I don't know if I will get off cellcept anytime soon, what I keep hearing...is that I am a different breed/complicated case...ect...but I think everyone is different. When I went to see my WG specialist in June, she didn't know when I would be off cellcept...I am taking four meds to keep WG in remission. I know the dangers of being on all these meds long term, my hope is to get off one of these meds next year.

Jack
10-06-2010, 12:02 AM
As you know, I've had a transplant too and it is normal to then take Cellcept and Pred for life. You would not want a rejection episode would you! :ohmy:

JanW
10-06-2010, 12:05 AM
I think it's interesting when you look at Jack and then when you look at some of the more recently diagnosed patients -- the thinking seems to be more conservative meds in the beginning (which may or may not be a good thing -- what if you don't knock the disease quickly into remission), with a view towards getting rid of all meds in the 'uncomplicated' cases within a year to 18 months. My rheumy certainly said at the beginning that while I could be at a low dose of mtx for years, the goal with would be to start weaning after as little as six months at a theurapeutic dose.

Jack
10-06-2010, 12:32 AM
I think there are a couple of things to mention here - first is that my treatment started 25 years ago and the second is that I was going downhill fast and needed treating urgently and decisively. Since that time, Wegener's patients have lived longer and the long term consequences of the medication are starting to show that they can become a major problem and have to be taken into account at the start. It used to be enough if the patient could be kept alive!

I have posted in the past that I sometimes wonder if treatment is now a little too conservative. We hear reports on these pages of members with ongoing problems and I think to myself that I did better than that in the early days. My symptoms were knocked on the head with a big hammer at the time, but I suppose that I am now suffering for it.

Sangye
10-06-2010, 01:05 AM
I know I've mentioned this before, but according to Dr Seo kidney involvement (even severe) without lung or other major organ involvement is relatively easy to get into remission using ctx. So Jack, I think you may be comparing apples to oranges!

Jack
10-06-2010, 01:21 AM
Although my lung involvement came along much later, I had quite a collection of symptoms at the time of diagnosis. I agree that the kidney involvement seems to be relatively easy to stop (even if it may be too late :( ), but the cases that stand out for me are the ones reporting long standing sinus issues and arthritis.

Of course, it could just be that I am now suffering simply because I've been treated for 25 years. There is not so much information around concerning long term treatment and it has not really affected me until about five years ago. Maybe you have all got this crap to come! ;)

(Sorry, was that insensitive?)

Sangye
10-06-2010, 01:47 AM
LOL-- Not for me! You're a hoot, Jack. :laugh::laugh:

elephant
10-06-2010, 03:36 AM
I would love to just be on cyclosporine again before diagnosed with WG. I know it will take a while to wean off the other three. I keep thinking should I stay on cellcept and get off cyclosporine..which one is the better drug for my kidney transplant??? I know cellcept is better for the kidney, I have asked this question before but no one ( docs) don't have an answer.
Before I was diagnosed (2008 WG), I wanted to get off my transplant medicine cyclosporine...because I did some research and it stated that if you got a kidney that was a perfect match you would not need any medicine...but from what I heard ( other doctors) said that does not apply to everyone....yes the have seen a few get off their medicines and are doing great.
My Kidney doctors all told me that they didn't want me to get off the medicine because they don't know why my kidney's failed....remember this is before diagnosed with WG. I am thankful that I stayed on cyclosporine all those years....some of the docs think that it saved me from further complications ( WG).
Sorry, I had a rambling bug on me. :)

Jack
10-06-2010, 03:53 AM
I was having repeated Wegener's flares on Cyclosporin, but none after switching to Cellcept. Everyone is different, but that was my experience. I'm not sure that there is much to choose between them when it comes to side effects, but neither have anything like the same dangers as Cyclophosphamide.

Doug
10-06-2010, 05:35 AM
I had lung and kidney involvement at the same time when I was rushed in an ambulance to the hospital in December 2003. The combination of the toxic duo, Prednisone and Cytoxan + dialysis + more dialysis followed immediately after with plasmapheresis, in a very aggressive treatment brought me back to life, in a real sense. By April-May 2005, when I went on Cellcept + Bactrim for maintenance of remission, later to be Bactrim alone, I was left with some issues related to Prednisone, but have has relatively free ride since as far as my primarily medical issue of WG is concerned.

I'm like Jack in that it seems the less aggressive treatment, while well meaning and probably grounded in good medicine we don't understand, does result in unintended suffering and setbacks of its own.

Palmyra
10-06-2010, 12:54 PM
Yes, so add into this equation, an injection from the mom of a relative 'newbie'. My daughter was diagnosed with lung involvement in 2006, and was treated first by methotrexate and pred, which did not do the trick, then promoted directly to Rituxin. Her Rituxin infusions have been ongoing ever since, with a couple of flares in between.

She is graduating to adult status (currently 24 years old,) and Mom is releasing the reins. She chose to delay her most recent Rituxin infusion, and the result is now her sinuses are involved. Multiple recent surgeries, and possible septum involvement are resultant.

And YES Sange, she has been seen at a major Vasculits Center (diagnosed by Ulrich Specks at Mayo), and treated even recently. As you have noted, WG that is not limited to the kidney is more difficult to control. Her local ENT threatened today to correct a deviated septum, which made my hair stand on end. Surgery during a flare? By a non weg specialist? No way.

So now I question?....Yes, Cytoxan is the aggressive 'old school' drug, but does it bring about a more sustained remission? We do not know, do we? She has not been able to be off of the 6 month Rituxin schedule, and has suffered multiple varied infections resultant to the constant immunosuppression.

All comments welcome,
Palmyra, in Dallas, TX

pberggren1
10-06-2010, 01:14 PM
Yes, so add into this equation, an injection from the mom of a relative 'newbie'. My daughter was diagnosed with lung involvement in 2006, and was treated first by methotrexate and pred, which did not do the trick, then promoted directly to Rituxin. Her Rituxin infusions have been ongoing ever since, with a couple of flares in between.

She is graduating to adult status (currently 24 years old,) and Mom is releasing the reins. She chose to delay her most recent Rituxin infusion, and the result is now her sinuses are involved. Multiple recent surgeries, and possible septum involvement are resultant.

And YES Sange, she has been seen at a major Vasculits Center (diagnosed by Ulrich Specks at Mayo), and treated even recently. As you have noted, WG that is not limited to the kidney is more difficult to control. Her local ENT threatened today to correct a deviated septum, which made my hair stand on end. Surgery during a flare? By a non weg specialist? No way.

So now I question?....Yes, Cytoxan is the aggressive 'old school' drug, but does it bring about a more sustained remission? We do not know, do we? She has not been able to be off of the 6 month Rituxin schedule, and has suffered multiple varied infections resultant to the constant immunosuppression.

All comments welcome,
Palmyra, in Dallas, TX

I am sorry Allison is not doing well suffering with infections.

But it is the infections that is most likely to cause the most amount of grief or problems for Weggies because of immunosuppression.

My ENT told me that any surgery, especially sinus surgery, can easily trigger a Wegs flare. He will not do surgery on nose or sinus unless it is absolutely neccessary.

I hope Allison gets well soon. I am 34 and the last year and a half I have had an ongoing sinus infection along with a mild lung infection and now a very deadly lung infection. So I know what it is like to battle infections.

God Bless,
Phil Berggren

Sangye
10-06-2010, 02:04 PM
Palmyra, it must be so difficult to let Allison take over the decision-making. Even those of us much older are often tempted to skip the meds...

I'm wondering why she's getting so many infections. Does she take good precautions like using hand sanitizer and being very careful with touching stuff in public places? I've had to completely retrain myself, but it pays off. I rarely even get a cold. I've been on continual immunosuppressants for over 4 years. Also, does she take nutritional supplements for basic nutrients?

Jack
10-06-2010, 07:48 PM
Does she take daily Bactrim? This helped me a great deal with all the minor infections that I was getting.

elephant
10-06-2010, 10:14 PM
I take Bactrim 1 DS pill every other day and that has helped significantly.

DEE
11-05-2010, 04:50 PM
Had a phone call from my wg consult tonight ,after giving wegners presentation to doc at my local hospital using my case and then having a case conference with my otheer consultants thy came up with
ive had wg for at least four years of which 15 / 18 mths undiagnoised ,therefore are amazed that i have managed to survive without more damage than i have
they now know why it has taken cxt so long 10mths to bring wg under control
blood results looking better and agreed to up Imuran and reduce pred slowly
that getting cataract and dental work done safely was my next priority
he said the excess joint pain he thinks is from preds reduction but the all agreed that i need to get them lowered it made him laugh when i said the dentist said they would not be able to do the work on such low dose of preds as he knows how i want to be off them :ohmy:
had a wipeout day yesterday slept most of it so hoping for a better dsy today
take care of youselves DEE x

DEE
11-05-2010, 08:18 PM
ok scrap that idea made a cup of tea after writing last post knocked another tooth with my cup and another tooth came out minus the root again , still waiting for my urgent appointment for hospital dentist :crying:

elephant
11-05-2010, 09:58 PM
Dee, it sound like WG is attacking your gums. This is rare but it happens. I am glad you are being watched carefully, but if you continue to be tired and have joint pain, I am leaning that your WG is not being controlled. Thinking about you and we are here to get your through this. :hug1:

Sangye
11-05-2010, 11:57 PM
Ack! Dee, I am cringing.... Why are your teeth coming loose like that? I think Elephant is right about Wegs affecting your gums and also that it's not being controlled.

Your doc said the reason it's taking long to get your Wegs under control is because it's been going on for so long? That makes no sense to me. If the drugs work, they work fairly quickly. I had a lot of trouble getting it under control too, but it was because the drugs weren't the right ones. Rtx did it. I think they're pussyfooting around while you have smoldering Wegs.

JanW
11-06-2010, 12:53 AM
I'm cringing too. Teeth are strong - when they start coming out that's serious.

I'm on Sangye's bench with the drugs. I clearly had WG since 2005 (when I first started having problems with stenosis) and my case was brought under control within six weeks on mtx just because it happened to work for me. With close monitoring, when docs see a drug is not working, they need to change it. This is always a judgment call, however, but it seems to me from what I have read here and what I have experienced, when these drugs work, they work and you go into remission.

DEE
11-06-2010, 12:56 AM
dont know what to make about teeth ,saw dentist last week she said teeth could be sorted at the hospital best and that she needed them to look at sort patch on my palate aswell !
spoke to wg sec this morning and if i dont hear by mid week she said she would try to help me get it sorted ,rang dentist to tell what happened too
they want me to stay with Imuran foranother month
not going to let it get to me :rolleyes1:
inr test and flu injection to look forward to monday
life to exciting with wg :biggrin1:

DEE
11-06-2010, 01:06 AM
[QUOTE=JanW;28738]I'm cringing too. Teeth are strong - when they start coming out that's serious
I hear what your saying , i have problem with my teeth over last few years wha t with mouth ulcers and abcesses (sp)
i lost bottom two front teeth just before my daughters wedding three years ago luckily managed to grt a palate made in time
its more of a problem because of roots been left each time
reguards to drugs it was what came from case conference of my consultants its the first time they have admitted that ive had for four years just thankful there has not been more damage

elephant
11-06-2010, 01:31 AM
Dee, it sounds like your Wegeners attacked your teeth four years ago. I know this is hard time for you, and hope you have a relaxing weekend.

DEE
11-06-2010, 03:39 AM
fhanks Elephant will try to even planning on going to a charity fashion show tues night if all is well
you never know with me just lately :thumbup: enjoy your weekend

eileenv
11-06-2010, 04:39 AM
Would anybody know can a deviated septum be a result of wegs?. Very intresting posts in relationship to the medications used in treating wegs.

JanW
11-06-2010, 04:42 AM
Honestly a deviated septum is very common -- I think I read something about half of the population having one. I knew about mine years before the WG reared it's head.

Now if a doc is telling you that you are having a bunch of problems because of this -- when they are mostly benign -- that could be something worth looking into.

drz
11-07-2010, 06:29 AM
How about teeth problems from calcium shortage or becoming brittle from other meds. I started having problems with teeth falling apart a few years ago but never linked it with Wegener's disease. I thought it was just another symptom from my diabetes or meds I was taking for that disease that made them brittle. I know I am taking extra calcium and vitamins now as part of my treatment for Wegener's and also advised to see a dentist every three months for checkups.

Is this because of the Wegener's or meds we take for treatment like prednisone and Cytoxan?

DEE
11-07-2010, 07:02 AM
i wish i knew hopefully will get some answers from dentsal appoiny,mrnt at the hospital
i take calcium twice a day and only started having problem since wegners started:sad:

DEE
11-07-2010, 07:04 AM
will be glad when i get cataract done too
sorry about spelling above DEEx

elephant
11-07-2010, 07:45 AM
Drz, actually loose teeth/bone loss is listed as one of the symtoms for Wegeners Disease. I just think the docs don't really pay too much attention to it...they probably think it's a minor thing compared to a vital organ.

Jack
11-07-2010, 08:51 AM
I'd forgotten about that, but you are right. I remember being warned about looking after my tooth when first diagnosed.

Geoff
11-07-2010, 08:55 AM
OMG, is there no end to syptoms that can be attributed to this disease!!

I think Wegs needs a better press agent.

drz
11-07-2010, 10:50 AM
OMG, is there no end to syptoms that can be attributed to this disease!!

I think Wegs needs a better press agent.


The good news for us here is that we can blame almost any problem on the Wegener's disease and have a good chance of being right. The bad news is that any other problems not related to Wegener's disease have a good chance of being missed and not getting treated correctly.

Sangye
11-07-2010, 10:57 AM
Wow, I've never heard that about teeth and Wegs. Are you sure it's actually due to Wegs and not just the bone loss caused by pred?

flana
11-07-2010, 02:48 PM
Do we have to take Imuran until the next flare up?

DEE
11-07-2010, 07:24 PM
Sangye my major teeth problems have been since diagnoised with wg and eye problems since preds !!
ive been told Imuran would be for at least two years if not more

elephant
11-08-2010, 12:59 AM
Sangye, it is listed as one of the symtoms of wegeners disease, rare...but it happens. Since WG is vasculitis it can affect us head to toe....that is my assumption.

DEE
11-08-2010, 01:03 AM
ive have defiantely(sp) read it can affect the palate cant remember were though :confused1:

Sangye
11-08-2010, 01:18 AM
Before I was dx'ed, I would occasionally get severe pain in a tooth that would last several hours. It literally felt like the tooth was going to explode, not a normal aching pain. Like the joint pain, it would affect different teeth and they'd be perfectly fine when it was over. I never had any sinus issues. Once I was dx'ed I knew it was Wegs but had no idea how it worked.

Palmyra
11-08-2010, 03:42 AM
Hey there, again away from the forum for a long while due to a death in the immediate family. We are mending and have great family support.

But, regarding teeth...complex, and usually dependent on what kind of condition your mouth was in prior to Weg, rather than an area of damage due to Weg. Yes, some of the meds Weggies take can affect the oral cavity and occasionally the disease itself (ie, mouth ulcerations, especially common with Bechet's vasculitis,). And a class of drugs to prevent bone loss (bisphosphonates,) can eventually and only VERY rarely have an effect on jaw bone that supports teeth...(separate issue, and complicated).

But that said, remember, teeth are largely avascular and are more like 'rocks' with minimal blood supply. If you have decay issues or gum disease, very likely that was a pre-existing condition that progressed, rather than having any direct correlation to Weg. Prednisone and other inhaled steroids can contribute to oral fungal infection, but that is very easily addressed.

If on many immunosuppressive meds, wise to think of yourself as diabetic, and treat your feet and mouth with respect due to impaired peripheral blood supply.

So simple suggestion. Get thorough cleanings (hard to do in Europe, and not always easy in the US), don't eat hard candy or drink sugary drinks (decay is an infection, caused by bacteria feeding off of simple sugars, and gum disease is one of the most common chronic bacterial infections in the US) Keep your mouth clean as you can.....brush 2x's daily and floss once daily.

Sent with love from your friendly dental professional,
Palmyra, mom of Alison

PS, I missed the post regarding imuran and any potential oral side effects...would you mind sending me that reference? Thanks!

elephant
11-08-2010, 09:32 AM
So sorry to hear about your loss, and thanks for the information Palmyra.

DEE
11-19-2010, 03:17 AM
Just had session with wg consult
happy with progress bloods looking good , lowering preds 15mg to 12/2.5 for six weeks liver results better than last results
agreed about not stopping warfarin without more details writing to consult who put me on ,he agreed also strange to be asked to stop taking when still having bloods every two weeks and taking 9mg still !! will ring when he gets a reply
thinks joint pain more my os -athritis problem showing through now on lower preds
he suggested swimming but ive always been abit weary about swimming pools from the infection point of view any thoughts !!
leaving everything the same to give time to get eyes sorted and teeth hopefuly and progressed to seeing him in six weeks instead of four
said he is at the end of phone if need him
no work to risky was the reply so onward and upwards fingers crosed etc :smile1:

Sangye
11-19-2010, 03:43 AM
That's good news, Dee. Regarding your joint pain, are you having pain in the same joints as you were pre-Wegs? Many docs (even the Wegs specialists) are quick to attribute joint pain to osteoarthritis. OA doesn't develop overnight--it increases slowly over years-- and the quality of pain is quite different from Wegs pain.

Regarding swimming and infections.... You are not more prone to things like skin infections from being in a pool since it's chlorinated, unless you already have a wound (in which case you should not be going to a public pool anyway!). If you have ear involvement, you might be affected by immersing your head. I do all my exercises keeping my head above water because of the ongoing vertigo issue. I'm very careful about wearing sandals when walking around outside the pool and in the locker room-- all kinds of nasty stuff on the floor of public gyms. Also, I go when there aren't tons of people (esp kids) using the pool and locker rooms. The high humidity and shower air can carry germs easier. I haven't gotten sick at all since going and it does help me greatly. You just won't believe how much more you can do in water, Dee.

DEE
11-19-2010, 04:38 AM
Thanks Sangye for your advice I was diagnoised with OA well before WG and the joints im having problems with are the usual ones !!
will give the swimming some thought
he said he would talk to rhuemy about joint pain too .

elephant
11-19-2010, 09:29 AM
Hi Dee, I was diagnosed with RA three years before I landed in the hospital with kidney failure secondary to WG. But the docs had no clue it was wegeners ...diagnosed with unknown autoimmune disease. Just hope it's not wg being sneaky with you. Looking forward to you getting better!

Sangye
11-19-2010, 03:29 PM
Dee, then at least it's clear that it's OA. That's good, sort of!

julia
11-20-2010, 04:47 AM
Water arobics is great I always feel great after. On the few occasions I had to push myself to go I was very happy I did. I go now about 2 times a week. In the spring and summer it was 3 or 4 times a week. I do notice the water is alot!!! clearer since the summer camp ended. (gross)

DEE
11-21-2010, 02:23 AM
ok working on one brain cell today and just received more benefit forms to fill in
question is : Imuran/Azathropine is a chemotheray drug used for used to supress the immunine system the point im making is it drug dippy DEE X

DEE
11-21-2010, 02:23 AM
Opps made a chemo drug

Sangye
11-21-2010, 02:42 AM
I don't understand the question, Dee.

DEE
11-21-2010, 02:48 AM
OK JUST WANT TO KNOW AZATHRIOPRINE IS A CHEMOTHERAPY DRUG TOLD YOU I WAS HAVING BAD DAY SORRY SANGYE :ohmy: DEE X

Sangye
11-21-2010, 02:52 AM
Yes, it is a chemo drug. I hope you feel better as the day goes by. :smile1:

DEE
11-21-2010, 03:22 AM
Thanks Sangye its been odd day for some reason can think straight today everything i have done has taken twice as long :confused1:
giving in now just finished roasting some gammon think i need food too
:smile1:

elephant
11-21-2010, 08:14 AM
Yes it is Dee. Hope you feel better.

DEE
11-21-2010, 05:56 PM
Thanks Elephant cant put finger on what wrong at moment dont know if i feel off because of flu injection , lowering steroids and OA playing up
just going to go slow and steady for awhile will give gp a ring if things dont get better :smile1:

elephant
11-22-2010, 12:44 AM
Dee, if your feeling like your going down hill..just hint of it ...yes, call your GP asap. Keep your chin up and a hug to you.:hug3:

drz
12-29-2010, 07:14 AM
How long does it take for generic Imuran (Azathioprine) to start working? I am waiting for results of TPMT testing and they say that will take two weeks to get the results. I have been off Cytoxan for a week and my WBC has recovered to normal range.

Sangye
12-29-2010, 01:31 PM
I think all the immunosuppressants take at least 4 weeks to really kick in but I'm not 100% sure about imuran. For some drugs they taper you on to them so it can take a couple weeks longer.

How are you feeling, drz?

drz
12-29-2010, 02:31 PM
I think all the immunosuppressants take at least 4 weeks to really kick in but I'm not 100% sure about imuran. For some drugs they taper you on to them so it can take a couple weeks longer.

How are you feeling, drz?

My markers are up as are symptoms of Wegener's like joint pain is starting, more fatigue, mucous in my throat, so doctor decided the risk of going untreated is worse than risk of toxic reaction to the Azathioprine so they started me today on half dosage till TPMT test results come back from Mayo in two weeks.

DEE
12-31-2010, 05:41 AM
Good news
been to see wg consult really pleased says im now what he calls at the stable stage !! i have been on imuran three months now bloods ok for me !! but hopes will get better in the future
no more warfarin:thumbup:
he is also extending next appointment to three months unless i need to see him before as i have telephone access to him on a daily basis if needed
still got to have full blood screen every fourth week
so seeing eye consult about the eye he has just done and to make appointment for the other one to be done , last appointment tomorrow morning
so onward and upwards oh !! prends going down to 10mg for four weeks and then 7,5mg :thumbsup:

Sangye
12-31-2010, 05:46 AM
That's great news, Dee!!! :thumbsup::hug3:

I do think a jump from 10mg pred to 7.5 mg might be too fast though since you've been on pred for awhile.

DEE
12-31-2010, 07:21 AM
Thanks Sangye
I will take care with preds tapper have been on 10mg ever other day for the last six weeks and if going lower does not work i will let them know as i dont want to go backwards after the year ive just had
thamks again for your concern hope you are feeling better
speaking to most of my friends today they are full of colds etc and the tirst question wg consuly asked today was had i my flu /swine flu injection answer was yes
take care of you :smile1:

Jack
12-31-2010, 07:25 AM
Sounds like some good progress is being made.
I used to be able to drop from 10 to 7.5 without trouble, but as Sangye says, it could be a problem so be aware of it and don't be afraid to quickly step back up if things feel wrong. You can always try again at a slower rate.

DEE
12-31-2010, 07:42 AM
thanks Jack im hoping so too
he said whatever ive been doing to carry on doing it
i think learning to live with my new normal .resting when needed and he thought removing myself trom what can be. stressful job and risk from picking up infection on a daily basis
wotking in scgool with 5/11 yr olds was a good move
also from alll the good advice and support ive had from you guys on the forum
little miss mouse has gone reguards to my own health if i dont understand i ask if they say no i say why
thanks to everyone here for giving mr the strength to do it :hug1::thumbsup:

DEE
12-31-2010, 07:46 AM
oops sorry about spelling mistakes will be better when both eyes work:flapper:

Sangye
12-31-2010, 08:03 AM
LOL Miss Mouse is one of the nicknames I have for my dog Lotus. Not because she's meek (quite the opposite--oy) but because she's little (relatively) and can get into anything.

drz
12-31-2010, 08:06 AM
Sounds like some good progress is being made.
I used to be able to drop from 10 to 7.5 without trouble, but as Sangye says, it could be a problem so be aware of it and don't be afraid to quickly step back up if things feel wrong. You can always try again at a slower rate.

I am at 10 and tapering down to see how far I can safely go. My next next step will be 8 3/4 since I will take 3 and 1/2 2.5 mg tablets. Did you make changes in your prednisone without consulting your prescribing physician? I can do that with my insulin since I have the blessing of my endocrinologist and diabetic educator to adjust insulin as needed and have years of experience doing so. I am afraid though to adjust prednisone levels with out my rheumatologist directions and blessing but he responds to my statements on how I am feeling and functioning and seems responsive to my medical needs.

Jack
12-31-2010, 09:12 AM
No, I would never make changes without consultation and full monitoring. The only time I go "off prescription" is the very rare occasion when I take extra to get me through a bad spot. I did it once during Christmas when I had to go visiting relatives and did not feel well, an extra dose of Pred just for the day made me feel much better. I was not that good again next day so perhaps I had to pay for it. :(

Sangye
12-31-2010, 09:18 AM
How are you feeling, Jack? Did you figure out what was off?

elephant
12-31-2010, 01:54 PM
Dee, happy to hear things are going well. Keep up the good work!

Jack
12-31-2010, 10:29 PM
Sangye - I'm doing sort of OK again now. I had a few off days which I think stemmed from my ears being worse than usual, perhaps some sort of bug upset them? It gave me vertigo which I have not really suffered from before so now I can empathise better with your recent problems! ;)

Jaha
01-01-2011, 01:42 AM
My Rheumy just changed my medication from MTX to Imuran 2wks ago. I guess I was having side effects from the MTX that I just thought was normal. I'm hoping that this change will be good, I'm down to 15mg preds a day and Bactrium everyother day. I seem to be having alot more pain in the joints than I normally do, would that be something I need to report? I'm fairly new to this and need to learn what is to be exepected with medication changes.
Jaha

Jack
01-01-2011, 01:51 AM
After a significant change of medication you should have a follow up appointment within a couple of weeks and you should then report every reaction you can think of. If things seem to be going wrong before your appointment is due, get in touch with them. These things need careful monitoring.

Jaha
01-01-2011, 02:08 AM
Jack,
Thank-you for your advice, I guess I need to report everything. I still have a bit of denial about this disease and what it can do, even after a very ruff year with it. I'll call my dr and report it.
Jaha

JanW
01-01-2011, 06:52 AM
Personally I think there's never a bad reason to call the rheumy. I had (what turned out to be) a quiet minor rash about four months ago -- he wanted to see me the very next morning.

drz
01-19-2011, 07:20 AM
Has any one had to stop azathioprine or Imuran because it drove their white blood count too low?

I have been on 100 mg now for a week and my WBC dropped from 6.2 to 5.0. I had to stop the Cytoxan because it kept driving my WBC too low. I hope the azathioprine won't do the same thing.

flana
01-19-2011, 02:26 PM
Yes my WBC started declining when Imuran was introduced. Had to remove CTX, and they came back up to thier normal range.