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stikker
03-26-2010, 09:36 AM
I am currently debating with Nephrologist regargding presdnisone taper.

Wegeners doc that I see Quarterly sent a letter saying, that I have signs of toxicity. He wants me down to 20 mg in a month( down from 50 mg.)
Nephr. says she will make decision based on my urine testing.
Weg Doc says urine may get worse even under effective treatment.
I feel like I am running put of fight. I want to do what weg doc says. Can I make them do it? I donít want to drive the 1.25 hours to boston weekly but I will if I have to.
How was everone else tapered? Is 20 in a month too fast? What does anyone think?
stikker1

Sangye
03-26-2010, 09:47 AM
Follow your Wegs doc. (Who is it again? I forgot)

I think it's best to get to Boston at least until this gets sorted out. You shouldn't have to go weekly, but if you do it's well worth it. They will keep you safe and alive, able to fight.

What did s/he mean by signs of toxicity?

elephant
03-26-2010, 10:10 AM
Yes agree with Sangye. I was wondering the same thing toxicity. I have heard prednisone can be hard on the kidneys. So was wondering if that was the case? Or liver?

stikker
03-26-2010, 10:18 AM
I am not sure what he meant by toxicity but I feel horrible so it made me feel justified. Kidney and lung are my problem areas.
I see Dr Merkel at Boston Medical Center. I think I will call him tomorrow and switch to him. I can't fight every day. I am worn out.
Thanks for your input. I knew you guys would clear it up.
stikker

Sangye
03-26-2010, 10:25 AM
That's right--Dr Merkel. You're safe in his care. He should be overseeing your treatment and advising the other specialists, not the other way around. That's routine-- rheumy in charge.

I know what it's like to be overwhelmed and ready to give up. Dr Merkel will get things under control and you'll be on the other side of this very soon. Take care, Stikker. You'll be okay.

JanW
03-26-2010, 11:54 PM
I've seen Merkel speak on the VF website and he's definitely knowledgeable and also seems like a very nice guy. Sangye is right -- the rheumy is the team leader, as my rheumy made very clear to me, and that's just the way it has to work with a rare disease like this. You've got one of the top guys in the business, that's for sure, and the neph should just be following his lead and respecting Merkel's advice. There should be no argument, or, if there is, it should be between the two docs, without you in the middle...but I guarantee you that your neph isn't going to know as much about this disease as Merkel. I am just in the earlier days of treatment (one surgery, no therapeutic dose of meds as of yet) and I'm at the rheumy's every other week (granted it takes me only about 45 minutes to get there, but it's a 45 minute visit, not including bloods each time)...sometimes it's just what we have to do to fight this disease.

pberggren1
03-27-2010, 01:40 AM
Well said Jan!

Doug
03-28-2010, 03:16 PM
Me, too, stikker. You know how wearing it is to deal with occasional communication issues between doctors. That's why you need to get it across to your nephrologist that WG isn't a kid's game, that while s/he no doubt is seriously qualified to deal with most diseases of the kidneys, WG requires a rheumatologist in charge of the overall treatment because of the rapid changes and potential mortality that comes with it when treatments are too far off base. (Please and thank you! )

Note that you have a world-class doctor (rheumatologist) caring for your WG, and that you'd like her/him (Ithe nephrologist) to gain WG experience by reviewing her/his findings and judgements with this world-class WG doctor before talking with you about it. Note that the stress having discordant information on what needs to be done for your WG is wearing you down. Note that if she/he is unable to defer to the rheumatologist's knowledge of WG treatment and your particular variations on the disease, you have no course of action but to find a doctor who will work with the world-class WG doctor.

You might even give her/him the link to the Vasculitis Foundation and your rheumatologist's cellphone telephone number, e-mail address, any other means of communication if you can (and with his permission, as a courtesy to him).

Jack
03-28-2010, 07:17 PM
I feel so lucky that both my Nephrologist and Rheumatologist jointly headed a world class Vasculitis research group. I think that must be about as good as it gets. :)

stikker
03-28-2010, 08:55 PM
Me, too, stikker. You know how wearing it is to deal with occasional communication issues between doctors. That's why you need to get it across to your nephrologist that WG isn't a kid's game, that while s/he no doubt is seriously qualified to deal with most diseases of the kidneys, WG requires a rheumatologist in charge of the overall treatment because of the rapid changes and potential mortality that comes with it when treatments are too far off base. (Please and thank you! )

Note that you have a world-class doctor (rheumatologist) caring for your WG, and that you'd like her/him (Ithe nephrologist) to gain WG experience by reviewing her/his findings and judgements with this world-class WG doctor before talking with you about it. Note that the stress having discordant information on what needs to be done for your WG is wearing you down. Note that if she/he is unable to defer to the rheumatologist's knowledge of WG treatment and your particular variations on the disease, you have no course of action but to find a doctor who will work with the world-class WG doctor.

You might even give her/him the link to the Vasculitis Foundation and your rheumatologist's cellphone telephone number, e-mail address, any other means of communication if you can (and with his permission, as a courtesy to him).

Wow Doug. Would you come on my appointment with me??? I printed out you e mail and I'll review before I go in. It said everything I need to say!!!! Thank you

Doug
03-28-2010, 09:08 PM
Wow Doug. Would you come on my appointment with me??? I printed out you e mail and I'll review before I go in. It said everything I need to say!!!! Thank you

My pleasure! Remember to be nice. Ha! No one likes confrontation, few like to confront. In your case, resolving this communication issue with your nephrologist is too important to put off until you need a transplant, say, or an obituary for the local paper. Some of the doctors mentioned in this forum seem dense enough not to realize how serious our disease can be. So many doctors to train, and we do not have the time.

Sangye
04-24-2010, 11:35 AM
I know that tapering pred can cause joint and muscle pain. When I first tapered off it in '07, I got severe pain that was really active Wegs. My lousy rheumy at the time kept saying it was just the taper, but I knew it was the exact same type of pain and stiffness I had when I was dx'ed.

I'm down to 3 mg pred (took me 3 wks to get down from 4mg!) and I'm getting a lot of random, major jabs of joint pain. It doesn't feel like the Wegs joint pain at all, but it's pretty intense. Some jabs of pain are in weird places. Just now it was in the middle of my forearm--very sudden, deep pain. And aside from the jabs of pain, most of my joints feel very arthritic, achy.

Anyone else experience this?

elephant
04-24-2010, 11:41 AM
My jabs are mild, and I just think as long as it does not get swollen or worse or come with the other signs of Wegeners, then I will not freak out.
My pain is sometimes in the left upper arm, and left wrist. I even had left ankle pain yesterday, mild though.
Sangye, I know you will keep an eye on it. Can you email your Weg specialist?

Sangye
04-24-2010, 11:45 AM
Yeah, if it's still going on by Monday I'll email him. I don't have other symptoms of Wegs and this pain is so weird I think it has to be from the pred. But man, some of the jabs have taken my breath away for a second!

jola57
04-24-2010, 03:21 PM
Sangye, you are brave. I have been tapering 1mg every 1 1/2 month at least and that is with alternating 8/7, 7/6. after a month I am ready for 5/6 but also scared this is when last year i flared and had to go back on cyclo. Pain is not that bad just feeling arthritic but berable. I know what you mean about the jabs, its like someone is sticking an ice pick into that spot. Good luck with the taper. Go slow.

stikker
04-24-2010, 10:45 PM
OMG!!!!!!! I am down to 20MG prednisone and I am human again. Oh don't get me wrong. I still have a hump and a huge face, but I feel human. I can breath. I am comfortable in my body again. I have more energy. I was afraid I would never be normal again. I didn't know what was Wegs and what was drugs. Turns out it was all drugs. The treatment will kill you if the disease doesn't.
Met this week with wegs Dr(Merkel, I love him) He said he thinks I am in remissison. First time I have heard that word. I like it.
One more month on cytoxan and and then Azo. He wants me on no prednisone. Nephr wants 7.5. Another battle Dr Merkel will win.
Once I switch to azo I am going with just Dr Merkel unless I flare. It will be nice to only have 1 dr. These appointnemts are killing me. Tough to keep a job.
stikker1

Sangye
04-24-2010, 11:00 PM
Jolanta-- I'm comforted that the taper is probably what's causing the pain. Not comforted that you have pain too, but you know what I mean. I'm lowering by 0.25mg a week. It's impossible to go slower than that! Dr Seo said to lower by 1mg a month--no faster. I stay on each new dose until any symptoms calm down, so I might stay on this 3.0 mg several more days.

Stikker-- (LOL--nice to meet you! Doesn't it feel like you have a different personality once you taper pred some?) I agree that you should definitely go with Dr Merkel's opinion on the pred. Ask him how often you should see your neph. It might be every few months for follow-up. Meanwhile, I'm glad you have a lot more energy. Be careful though-- this is where a lot of Weggies get in trouble and start overdoing it. Your body is still on major drugs and is trying to deal with them while recovering from Wegs. That takes a lot of energy! Make sure that whatever else you do leaves enough energy for that to happen or the Wegs can flare. The 20 mg pred is still a lot-- it's giving you a huge energy boost each day. That's borrowed energy. So take it easier than you think you should, okay?

elephant
04-25-2010, 02:49 AM
Congrats Stikker for feeling human! Even at 20 mg I felt better too. Just think you will feel super duper human when you get down to 10 mg of Prednisone.. Sounds like a party to me!

Lightwarrior
04-25-2010, 04:16 AM
I'm still at 40mg pred. You mean there is a point where you feel human??

Sangye
04-25-2010, 04:28 AM
Pred or not, 4 years into Wegs and I still have yet to feel human. I hope it happens soon for you, Lightwarrior.

stikker
04-25-2010, 05:34 AM
Lightwarrior keep the faith. Right before I felt better I sank to my absolute worst. I could barely function. I slept all day. I felt miserable. Next day presto! I was better. It was that quick.

pberggren1
04-25-2010, 06:57 AM
HUMAN?

Come on now!!! What's that?

elephant
04-25-2010, 08:04 AM
Hey Sangye, your 4 feels like 40 mg of prednisone. When you get to 1 mg, will "break dance" and even do the " moon walk"! Yea! Yahoo!
Human is possible. I wasn't human last year. Feeling more human....by next year I will have a cape and fly around and visit you all. :)

jola57
04-26-2010, 04:45 PM
Oh to feel human again, alas not for me, I will never be human again. But then it is the better me version, one that is happy just to be.

Col 23
04-28-2010, 01:59 AM
Feeling really bad today. Trying so hard not to be depressed. I think it has really hit me again. Ive had enought. Went for CT and bone density scan today. Dizzy on and off all day. Aches in the body especially legs. Pain in my head been there for 2 weeks on and off. Cant function without diet coke. 3-4 a day at the mo. (Yes, I know its not good for me but I need something to function). Eyes have deteriorated. Memory is shot to pieces. Moody, depressed, anxious. Got to take the mtx tonight and decided I just dont want to so going to take Ativan to relax if I can. I think what set me off is its nearly 4 and 1/2 months since dx, they put me on the scales and 10 kilos over weight. I cant walk long distances with the pain in my back and with this weight on image by Christmas Ill probably be 30 kilos overweight and in a wheelchair or dead of a heart attack. I see my GP on Thursday and my Rheumy next week. I have to have blood test tomorrow also. Im going to get in early to the eye doc this week also. I cant seem to see any bright future. I think you guys are all so brave and courageous and I think Im just weak and pathetic. Im really having a down day. It was great to hear stikker is going so well. Gave me a bit of hope. I never thought of myself as a negative person but today I just am. So I just wrote this and Im going to bed and see if I can sleep. Im never taking pred again. What else is out there.
Sorry guys
Col 23

elephant
04-28-2010, 02:18 AM
Sorry Col, and am sad just reading this, but glad you are sharing and you need to get out your feelings and how you feel.
First of all Don't worry about your weight, you are sick and need to heal and get rid of this WG! Take your medicines for your Wegeners. I know they suck, but you need to take them.
Can you call your Rhuemy and tell him that you feel like you are going down hill. I said those same exact words and guess what, one week later I was in the hospital with lung nodules, sore and could hardly walk and then passed out. You sense something and go by your instincts. We are here to help and thanks for sharing.

Sangye
04-28-2010, 03:14 AM
Oh Col, don't think you're the only one who feels hopeless! I spend MANY a day in my therapist's office weeping because I feel that way, too. You're neither weak nor pathetic. It takes incredible courage to get up every day and deal with Wegs!

I can tell you this-- pred causes depression. It creates imbalances in your brain hormones that directly cause depression. In 2006 when I was at 5 mg pred (had tapered from original 1,000 mg), one doc asked me to take 20 mg for 2 days to see if a cough I had was Wegs. I took it one day and was nearly suicidal. My therapist in Arizona and the one here in Maryland emphasize how powerful pred is. When I was off it I could look back and see it. Now that I'm tapering, I can see it. But when you're on it, it's hard to see.

I suggest seeing a therapist as you travel the road of Wegs. I sure couldn't do it without that. I've gone once a week for 4 years. Meanwhile, don't let your mind wander into the future. You're not 30 kilos overweight now, you're not dead of a heart attack now. Only look at right now. Take care of yourself. :)

jola57
04-28-2010, 05:11 PM
Col, nothing we say will make a difference if you don't listen. We have all been there and are there. The weight is on every thread out there, it is one of the worst very visible side effects.
As hard as it may be you have to listen and get yourself turned around and let the blue feeling go. We are all here for you and each other. So smile, look up the funny thread, lie down, put your feet up, get a good book, magazine, watch some TV - anything to take your mind away for a little while. Good luck.

Sangye
04-28-2010, 11:14 PM
Jolanta, I think that's good advice when it's truly just the blues. But actual depression is very different. When I've been depressed in the past (I never was before Wegs), it was hard to hear someone tell me to just cheer up, count my blessings, look on the bright side, etc.... Depression is a profound state. When one is in it, there is a sense of utter hopelessness and an inability to see that anything can be different. Being a generally cheerful person, I never appreciated it until I experienced it. I have chronic depression since Wegs but have only been in the deep dark pit a couple times--all pred-induced.

Col 23
04-29-2010, 02:54 AM
Hi everyone.
Thanks for your kind words. I do see a Psychologist every week but missed out last week. I am also seeing my GP tomorrow. It does help that Im not doing this alone ,Thank you so much I just hit the wall yesterday. I ended up taking my MTX tonight and the the ##@%% (thats name calling for me) Pred. Just reading all the threads just seems like we are on a merry go round and playing snakes and ladders. It stinks. I think its the medication and all the appointments Ive had this week and the weight gain that just hit me. I dont think I have faith in any of my medical team that they know what they are doing. I like my GP as I can relate to him and he is helpful. Im going to have a long chat with him tomorrow. Im so sorry reading all your stories just made me burst in to tears, we all suffer so much. I just cant believe how this has turned our lives up side down. I dont even know who I am anymore. My poor husband I think Im stressing him out, he has been so patient and listened to me going off at least I gave the shop assistances a rest. He has been so wonderful, caring and supportive. Had a awful morning and broke down so I went and did some retail therapy with my husband who had the day off so that cheered me up.I didnt do any dizzy spells today and was able to walk a bit further, (had a lot of head pain for the past week and half),Bank balance suffered but it got me through. I also had heaps of friends call today. What ever it takes....Thanks again for listening to me vent. Im all over the place at the moment. I dont think I want to know the results of my CT, blood test, and Bone density, when I see the doc tomorrow I know he is going to send me off for a head scan and refer to ENT. When do we rest.. I have a very supportive friend network and and supportive husband and lots of family if requried but he problem is I dont always want to vent with them.
Andrew- do you have a Weg Specialist in Australia? Reason Im asking as I may also need one. Also your symptoms sound similiar, I found that swimming when you have the energy or a spa is very helpful also good for the back. I think I mentioned that in previous thread. I too find it hard to walk long distances, I went for a walk on the beach on the weekend and walked too far I had to tell my daughter and cousin not to wait and to go ahead without me. I had to breathe through the pain and keep stopping to make it back to the 4wd. I hate realising my incapabilities.

Just one more thing for everyone's info. I recently went to get some dental work done and the numbing needles didnt work. first time ever. I have been advised that I will need to go under for any work to be done. Has anyone else experienced this. And and and one more thing. Has everyone got a medic alert, my daughter made me get one.

Gone crazy be back soon Col 23

Sangye
04-29-2010, 03:14 AM
Col, I'm so sorry you're feeling low. Believe me when I say I understand and empathize. Even with the best support networks, Wegs is still so isolating. I'm glad you see a therapist. It helps me to have someone outside this experience see me objectively.

I first had a problem with getting teeth numbed about 20 years ago. It was a nightmare. MANY shots-- some right into the jaw bone-- and even gas, nothing worked. I had a tooth drilled down for a cap and felt the whole thing. It happened with several other teeth,too. Since then, I'm completely terrified of the dentist. I broke a molar a few months before I got dx'ed and went to a dentist a friend recommended. You know how the chair is shaped like a V? I was so terrified I was like a wooden plank on it. He got it numb, but I was hysterical the whole time. I'm not normally like that-- I can take a ton of pain and stress and still laugh. But I was truly hysterical.

Col 23
04-29-2010, 03:36 AM
Thanks Sange. Im fearful of dentist as it is. Hopefully they can just knock me out and get it all done at once. Was your hysterical over the top... I had 5 needles I couldnt believe it wouldnt work.
All that effort for nought.
Gone crazy be back soon Col 23

Sangye
04-29-2010, 04:35 AM
I was hysterical to a degree that I'd never been before. It took everything I had to remain in that chair. The dentist was the kindest guy and so patient. He'd count to 10 and drill and then stop so I could breathe. Even though it didn't hurt a bit, I just couldn't come down off the ceiling, waiting for pain. (That's what had happened in the past-- most of the tooth was numb, but then they'd hit a spot without warning and BAM!) It took MUCH longer than it should have because he had to keep waiting for me. But he was totally sweet about it and never made me feel like it was an inconvenience.

elephant
04-29-2010, 05:42 AM
Wow Sangye that is a nightmare. What a wonderful denist, to be so kind. I had many teeth issues...lots of dental visits....lucky I too have a nice Denist.

Col 23
04-29-2010, 12:20 PM
That you were able to go through with so much pain shows how much you probably have suffered with the Wegs to tolerate it. Its great to have such an understanding dentist.
Col 23

Sangye
04-29-2010, 11:38 PM
When it happened, none of us knew my lungs were hemorrhaging or why I was in crippling pain. I could barely breathe and was white as a sheet (literally, even my gums were white like a corpse). Wegs got dx'ed 1.5 months later. I really don't know how I did it. I wish I had that dentist here-- he was in Arizona.

elephant
04-30-2010, 02:34 AM
Sangye, if my denist is not sweet as pie, then I move on. Hope you have a good one.

Col 23
04-30-2010, 03:07 AM
Hi Elephant and Sanye
What do you think. I stuffed up the appointment with my GP today so going tomorrow morning. I have made a decision to request that I continue to taper the pred and to never go back on it
unless I am hospitalized and they tell me I will die without it. My bloods will be in tomorrow so if they are going well, then I see no reason to
not continue to taper. I know the overall picture with all the test will be all back next week when I see the Rheumy. I have been on 25mg Mtx since Xmas and have tapered to 25mg pred from 80mg.
Lungs were clear last CT and I just had another CT early this week. If they werent clear Im sure they would have rung me by now. I am now getting alot of sweating, nausea and overall pain in joints and legs and feet. Am also getting blurred vision and pain in my head which I believe are all side affects. The GP will probably ring the Rheumy so Im hoping this is how it will go. I am also trying to track down a Weg Specialist in Australia. This is wrong that Im having to make the call on my health as I dont have faith in my team. However I have learnt that from this group about taking control as no one seems to have much experience with Wegs and they just throw the big gun medication at you to get you into remission and it appears they are not worried about the side affects or possible long term affects. What are your thoughts.
By the way feeling less down in last 24 hours. Thanks for the support when I hit the wall.
Cheers Col 23

Sangye
04-30-2010, 03:27 AM
Col, I couldn't tell you not to take pred except for life-threatening crisis. Only a Wegs specialist can determine when you need it and how much you need. Sometimes taking pred while a flare is brewing can prevent it from reaching a crisis. Often going on a low dose (or very low in my case) keeps you from having to go on the high doses. And, if you wait for it to be life-threatening, any damage can be permanent.

I think you're on the right track with tracking down a Wegs doc. They seem to be the only ones who really appreciate and consider the long-term effects of pred and know how to use the immunosuppressant as the main engine instead of the pred.

I'm glad you're feeling less down. Glad to see you're transforming feeling of helplessness and hopelessness into taking action. You go, girl. :)

Col 23
04-30-2010, 03:39 AM
Thanks Sangye good point about keeping it low and a reminder about the damage. Is your tapering going okay still and how have your days been this week?
Just another thought if they keep the mtx at the same rate or upped the mtx and keep tapering Pred what do you think could be the worst? By that Im meaning what further side affects could I have from the Mtx. Sorry early morn again..
cheers Col.

Sangye
04-30-2010, 04:01 AM
I just don't know. Maybe others who've been on mtx can help? My main concern is that you're having to figure out which drugs and which doses. There's no way you can do that.

Tapering is going okay. I was really concerned a few days ago with the major jabs of pain I was getting. But I've stayed at 3 mg and they've disappeared. The past few days I was also feeling very arthritic in many joints. Not Wegs joint pain, but like my joints were 90 yrs old. That's eased up, too. I'm heading for 2.75 mg starting tomorrow. My Wegs dx anniversary (4 yrs) is June 26. I'm determined to celebrate it by being off pred.

elephant
04-30-2010, 04:08 AM
Hi Col, I am glad you are taking control of your health and getting a Wegeners specialist. It is vital. I know methotrexate causes nausea. I think 25 mg of methotrexate is a good amount. If your lab work is not good or if you are having WG symptoms then you need a different medicine. So that is why it is so important to have a Wegeners specialist so that they can decipher all this. I am gald you are feeling better. Thanks for sharing. :)

JanW
04-30-2010, 04:11 AM
What does of mtx did you start on, Col? Did you eventually go up to 25 after being at 10,15,20?

I don't think anyone but your rheumy reviewing your case can comment on the pred though. Mine is extremely conservative and said that he wouldn't use unless/until something radically changed in my case. I remember when I first came on this boards it seemed like everyone did both steroids and immunosuppressants, and I think that is still true for the vast majority of cases...but I have been heartened by people now saying that their docs are taking the risk of pred very seriously. Sometimes, if you are not flaring seriously, or getting rapidly worse, it's ok to let the immunosuppressants do their work, which of course goes much more slowly than it does with pred, but likely with less downside risk.