Cleveland Clinic First Visit

[Marci]

Hi Fellow WG's, Had my first visit today with Dr. Alexandra Villa-Forte. Boy, am I impressed. Thank you Bob and Pete for recommending her. Thank you also to Jana for the hotel you suggested. It was very easy to fine and clean. Wanted to let you all know that having been able to be on this forum before my visit helped me a great deal to understand what she was talking about. Having information gives you power.

I have the start of a treatment plan. She has put me on 60mg prednisone each day and bactrim on Mon. Wed. and Fri. When she checked my urine is did show the beginning in my kidneys so had to get kidney function test done and haven't heard about that yet. She wants to put me on Methotrexate but has to wait on test. Have to get a cat scan very soon to check on lung involvment because she says a chest xray won't do. Need to call and get an appointment with an optomalgist to make sure my blood shot eyes are from WG and not something else. She also wants me to get a hearing test done after I've been on the meds for one month. Things are moving and I feel so relieved to be at the Cleveland Clinic.

She warned my husband to watch out for me on the 60mg prednisone and that he might want to put away all the knives. I'm curious to see how I react after a couple days on it. I've only been taking 20 mg up until now. It actually makes me very talkie and pretty happy.

I down loaded the patient information book from the Vasculitis Foundation and am learning alot from that.

Hope everyone had a good day today, Marci

[Pete]

Hi Marci,

I'm glad your appointment with Dr. Villa Forte went well. Hope your treatment regimen is effective and you get back to feeling well soon.

[Jaha]

Marci,

I knew you would have a great appt with her. I will be seeing her again on the 19th. I hope your kidney test comes back with good news. Keep us informed!

[rebekah]

So happy your appointment went great and you're on your way to feeling better! Hopefully your kidneys aren't too bad, but it's good you're getting the kidney function test done. I'm glad to hear another great thing about Dr. Villa-Forte, I'm thinking about making an appointment to see her this summer after I graduate.

[NikkiNicole]

I'm so glad things went well! I'm wondering at what point I should go see the specialists at either UCSF or Stanford. I know I want my biopsy back for sure. Then I can pay for that extra appt without wasting their time. I have a feeling it will be a much different experience than my doctor seeming to doubt me since I'm not "sick" enough. I'm sorry my kidneys aren't failing but damnit this isn't right!!!
thanks for the update!!!

[Dirty Don]

Doc appts are on an ASAP basis...don't wait if you don't have to!

[Debbie C]

Marci,I'm glad they got you on the right track but I don't think you'll be feeling too happy on the 60 mg. of preds in a couple of days !!!!!What showed up in the urine to show it was going to your kidneys ?? That is one of my biggest fears,right now it's only been in my lungs-it's hard to tell if my sinuses are getting it, since I've had sinus issues for a while but according to my ent it's not. Did you stay at the motel I told you about downtown or the one in Independence. I was wondering if you had any trouble with the shuttle bus? Keep in touch and take care (put away the knives !!!!)

[annekat]

Marci, I'm so glad to hear about your appointment with Dr. Villa-Forte. I wish I lived near there so I could see her too!

I'd just wait and see on the 60mg. pred.... she might be right, it could make you feel aggressive and cranky, but I don't think it affects everyone the same way. I didn't have that much of a problem with it, just occasional fleeting "pred rage", but usually on a pretty even keel. I've heard of people who stay up all night and clean the house while on it. I wish I could do that. But the Wegs had me so wiped out at that stage that I could sleep fine while on it... it could cause some insomnia, though, so try to take it early in the day... Another side effect is making you want to eat everything in sight! That happened to me... I'd sleep, get up, fix something to eat, sit at the computer a bit, go back to bed and sleep some more, get up and eat again... a continuing cycle. And then there's the moon face.... a whole other problem, but will likely go away as you taper down to lower amounts.

[annekat]

I'm so glad things went well! I'm wondering at what point I should go see the specialists at either UCSF or Stanford. I know I want my biopsy back for sure. Then I can pay for that extra appt without wasting their time. I have a feeling it will be a much different experience than my doctor seeming to doubt me since I'm not "sick" enough. I'm sorry my kidneys aren't failing but damnit this isn't right!!!
thanks for the update!!! I guess having the biopsy results would be ideal, but maybe you should make an appt. now since it might be awhile before you can get one! Since you are unhappy with your doc's attitude towards your sickness, I'd say seeing a specialist would be the best resolution to that problem.

[Alysia]

Hi Marci,
It seems you are in good hands. It makes things easier. good luck with your kidneys. even if there is something there, once you start treatment it can stop it. this was shown in my Creatinine level: it was a little bit high and after I strarted MTX it became normal.
about pred, it makes me a little bit "high", and it is good to feel that, because WG can cause depression if you think too much about having it...

[Pete]

I didn't seem to have any noticeable "'roid rage" while I was on high dose pred, but my appetite was insatiable. I gained back the 20 or so pounds I lost at disease onset plus about 15 more. Abs went from six pack to pony keg in about six weeks. Still there... Big sigh

[Psyborg]

Glad the appointment went well :) She's a good doctor.

I am guilty of being a roid rager at times :) I will buck the trend and say that 60mg of Pred made me feel like a million bucks physically, mentally not so much.

[Jaha]

Marci
The 60mg of preds will make you nervous. I didn't have any rages but like everyone else I ate everything in site. I have more problems when I'm tapering the preds with anger and bad thoughts. I seem to be in a very dark place right now don't know if it is the preds or just tired of being sick all the time. Good luck to you!

[Marci]

Thanks guys for the info on the Pred. I'll report in on what my mood is. She told me to make sure I took it all in the morning so it wouldn't effect my sleep maybe and if it does she can give me something to help. Won't do that unless I really need to. She warned me about the eating. Got my "My Chart" account all set up last night.

Debra I forgot to ask what the urine test showed. Lesson learned again. I was concentrating on what the kidney function test might show. Hope I hear today the results and what med she decides to use.

We stayed at the motel that was downtown and was very easy to get to the clinic from there and I was surprised how little traffic there was at that time of morning. My hubby decided to use the valet parking since he didn't want to have to return to the motel after my appt. It really was handy.

[Marci]

Just wondering if people notice that the Pred. effects men differently than women. All us girls know that mens brains aren't like ours.

[Pete]

Hey Marci,

if you have a computer, you may want to sign up for MyChart. Doc will post your lab results there. You can also see graphs showing trends. There are links that tell you what each test means.

[Marci]

I signed up for "My Chart" last night and have been on it many times today checking. No test results are showing up yet.
I've got my appt. to an optomalogist next Tues thanks to my PCP office. Still waiting to see if cat scan has been authorizied by insurance.

[drz]

I'm so glad things went well! I'm wondering at what point I should go see the specialists at either UCSF or Stanford. I know I want my biopsy back for sure. Then I can pay for that extra appt without wasting their time. I have a feeling it will be a much different experience than my doctor seeming to doubt me since I'm not "sick" enough. I'm sorry my kidneys aren't failing but damnit this isn't right!!!
thanks for the update!!!

Biopsies require expertise to interpret them correctly. Did you ask for a sample to be sent to one of recognized centers for a second opinion. I personally experienced a family member who had a biopsy done and local clinic said it was not cancer, but the Mayo Clinic said it was and they were correct. Think how much difficult it would be for some pathologist to recognize Wegs if they had never seen it before.

[annekat]

Biopsies require expertise to interpret them correctly. Did you ask for a sample to be sent to one of recognized centers for a second opinion. I personally experienced a family member who had a biopsy done and local clinic said it was not cancer, but the Mayo Clinic said it was and they were correct. Think how much difficult it would be for some pathologist to recognize Wegs if they had never seen it before. I agree with drz. You should get an appt. with a specialist ASAP, regardless of whether the biopsy is back yet, and make sure the the biopsy results are sent there. If the specialist wants to then send the results to the pathologist of their choice for a second opinion, they may.

[NikkiNicole]

My biopsy is currently at Stanford Medical Center. They are looking into Wegs specifically. My dad had a lung biopsy in 2000. They said it wasn't cancer ... But it was and they figured it out finally when the brain tumor sprouted. He died 6 months later so my family is on edge right now. I know it's not cancer. 100%!! But, I'd love the final, definitive, Weg's word just so I can start really kicking its ass.
My doc is hesitant to do CTX but I want this gone. Ill do whatever it takes. This prednisone isn't helping.
I'm gonna call Stanford and UcSF tomorrow.

[annekat]

My biopsy is currently at Stanford Medical Center. They are looking into Wegs specifically. My dad had a lung biopsy in 2000. They said it wasn't cancer ... But it was and they figured it out finally when the brain tumor sprouted. He died 6 months later so my family is on edge right now. I know it's not cancer. 100%!! But, I'd love the final, definitive, Weg's word just so I can start really kicking its ass.
My doc is hesitant to do CTX but I want this gone. Ill do whatever it takes. This prednisone isn't helping.
I'm gonna call Stanford and UcSF tomorrow.

From my experience with lung involvement, oral CTX, along with the high dose pred, did a pretty good job of "kicking its ass", and pretty quickly. Pred by itself would not be expected to do the trick.

[Pete]

I agree with Anne. Cytoxan plus pred will likely kick wegs' ass. Be aware of possible side effects involving the bladder. Your doc may also use rituxin instead of cytoxan. Both are good drugs to get you through disease onset and move toward remission. After a few months, your doc will probably change immunosuppressant to methotrexate or immuran, which are milder. Good luck.

[annekat]

I agree with Anne. Cytoxan plus pred will likely kick wegs' ass. Be aware of possible side effects involving the bladder. Your doc may also use rituxin instead of cytoxan. Both are good drugs to get you through disease onset and move toward remission. After a few months, your doc will probably change immunosuppressant to methotrexate or immuran, which are milder. Good luck. I'm glad I went the CTX route.... RTX was still a bit in limbo at the time as far as whatever approval it needed in order to be easily available to people, and was VERY expensive and still is, though I think it has gone down. So a lot depends on the person's financial situation and their insurance.... some need to make special arrangements or work with the drug company to get this drug. CTX could be started immediately, didn't involve special appointments for infusions and the time involved, and went to work right away, which is what I think I needed. I was fully aware of the bladder issues, and that drinking LOTS of water is the way to counteract those, so I did that.

[Jaha]

I think you have a great plan to call about your biopsies and they are at the right place to come up with the answers. When I was finally dx'ed after 7 months of guessing from the locals,a lung biopsy and a lung resection. I was still very sick and they thought I had pneumonitis and various other things.I had to self referr to CC and the pulmy sent for my biopsies and a team of doctors reviewed them and my ct scans, and come up with the dx. I am one of the 20% of wegs who show a neg ANCA. Good luck to you.

[Jaha]

Sorry I did it again posted under the wrong thread this was meant for Nikki. How do I keep doing this? Predhead!

[annekat]

Sorry I did it again posted under the wrong thread this was meant for Nikki. How do I keep doing this? Predhead! Well, there are so many people posting right now and the subjects of the threads are getting intermingled! So I don't blame you, I have done similar things lately, addressing the wrong person on an issue, etc. I guess if I were you I would copy what I just wrote and paste it in a reply to the thread I intended it for. And I think it is possible to delete posts, though I haven't done it and am not sure how.

Also, I see that Nikki's biopsy IS being discussed on this thread! So you aren't out of line by replying about it!

[Jaha]

Anne,
Thank you for clearing me up. Maybe I'm not as crazy as I think I am! Sure is nice to have you guys to talk to and understand this maddess...:drool:

[drz]

From my experience with lung involvement, oral CTX, along with the high dose pred, did a pretty good job of "kicking its ass", and pretty quickly. Pred by itself would not be expected to do the trick.

These two work for me but the CTX did cause some problems along the way for me but eventually the bleeding in lungs and kidneys stopped and anemia improved and i was switched to azathioprine.

[Marci]

Wanted to report that my lab results came back and I got a call from Dr. Villa Forte yesterday to discuss. My kidney function test came back okay(Yeah) so she is putting me on 2.5mg MTX with the 60mg prednisone. I'm going to take my first dose tonight with supper. The pharmatist told me to take it with my biggest meal. Also will be taking folic acid and generic prilosec (sp). Will be on the prednisone for 4 weeks and then start to taper. She says we will work towards a remission using these two drugs. I ask her how she would classify my condition and she said because I do have it in my kidney that she would rate me as moderator. Still waiting to hear about the auth. for my chest cat scan. Hoping to hear today. Have an appt. with an optomalogist later today to check out health of my eyes. I will have to say I love "My Chart". Put together a notebook with all my lab results, the Vasculitis Foundation Info Book and highlighted all the important parts.

Wishing you all a good day today , Marci

[annekat]

Marci, glad to hear you your test results and are now on treatment! Are you on 2.5mgMTX/day along with the pred? It's more usual to take the MTX in a bigger dose once weekly or in two close installments. Just curious, not saying there is anything wrong with it, since I don't know. If the pred interferes with your sleep, maybe she'll let you take it earlier in the day with a smaller meal. I think a lot of us take it in the AM, and I do it with or without food. Perhaps the food was in relation to the MTX side effects. Also, a large pred dose can be split into two over the course of the day. But if you follow the doc's orders and it works for you, no reason to change anything!

[Alysia]

Hi Marci.
I am taking MTX 2.5 mg a day, 6 days a week. I check it again with my WG doc after I read here about taking it differently, and he said that in low doses it is o.k.
If Im taking pred more then 5 mg, then Im taking it with Omperadex to protect the stomach.
It is good news about the kidneys.
I wish you feeling better soon.

[Marci]

Alysia, yes that is what I am taking. 2.5 mg each MTX, 6 tablets once a week(starting tonight after I eat dinner) and 60mg prednisone daily (in morning after I eat breakfast so doesn't effect my sleep so much) for the next four weeks then the start to taper. She wants to use the lowest dosage first to see if that will work. Lab test will tell. Also taking the omeprazole to protect the stomach. I'm curious to see how I will feel tomorrow and during the next few days. I'm a bit nervous about if I'll get nausea and vomit(I hate that). Actually right now I feel pretty good. I think it's the pred. The eye doctor I saw this afternoon says my eyes are okay. No underlying problems and didn't see signs of WG but she did say the pred I've been on may have cleared that up. She's sending report to Cleveland.

[annekat]

Alysia, yes that is what I am taking. 2.5 mg each MTX, 6 tablets once a week(starting tonight after I eat dinner) and 60mg prednisone daily (in morning after I eat breakfast so doesn't effect my sleep so much) for the next four weeks then the start to taper. She wants to use the lowest dosage first to see if that will work. Lab test will tell. Also taking the omeprazole to protect the stomach. I'm curious to see how I will feel tomorrow and during the next few days. I'm a bit nervous about if I'll get nausea and vomit(I hate that). Actually right now I feel pretty good. I think it's the pred. The eye doctor I saw this afternoon says my eyes are okay. No underlying problems and didn't see signs of WG but she did say the pred I've been on may have cleared that up. She's sending report to Cleveland. Marci, what I'm getting here is that you are taking six 2.5mg. tablets of MTX once a week, in other words, 15mg. MTX once a week. This the same as what I'm currently taking, and it is not one 2.5mg tablet each day as Alysia is doing. So, correct me if I'm wrong, but I think I misunderstood, and you are taking it the way most of us take it, once a week. At bedtime is good, because you will sleep through the worst of the side effects! I was advised by my doc to split the dose to minimize side effects, but it might be just as good to take it all at bedtime. I currently take 4 pills at bedtime and then 2 more sometime the next day. I did feel a little wonky when first taking MTX, especially if during the day. But I think I am pretty much over that now, and you will be, too. It can cause a bit of nausea and I'm not sure what else for different people. I'm glad you seem to be enjoying the pred! I quite enjoy it, too, most of the time, and maybe you are also one of the lucky ones that doesn't hate it too much. And glad your kidneys and eyes are doing OK.

[Marci]

Annekat, yes I'm taking six 2.5mg tablet all at once on one day a week. So I am taking it the way most people do. Just took my first dose 1 1/2 hours ago and no nausea yet. Checked with my sister who also has auto-immune disease (not sure what) and takes MTX and she says she never gets nausea just the bathroom trots. Curious by what you mean by you felt a bit wonky. I guess the main reason I like the pred is because it took away the joint pain and stiffness and it doesn't seem to make me sad. The joint pain and stiffness got really bad in Jan. before pred. Sometime I'll have to tell you all what the first ENT specialist I was referred to after my dx gave me as a treatment plan. I almost feel now like it was malpractice. At that time it was only in my nasal area and didn't start having the pain until a week after I saw him. So gald I dumped him. Wasted one whole month and went through lots of pain for nothing.

[annekat]

Sounds good! By "wonky", I think I meant just a little goofy, not thinking or concentrating really well, maybe slightly dizzy. And I forgot to mention I did have a lot of fatigue the first few weeks, especially for the few days after taking it. I might have had a little nausea but not enough to make me throw up. All these things happened with CTX, too, and did get better with time, though I noticed when my MTX dose was increased a month or more ago, the "wonky" feeling returned a bit, just for a week or so. Pred usually makes me feel pretty good, more energetic and outgoing. Sometimes after a long day I will snap at someone a bit, like I did in the grocery store last night at the guy working there who was trying to "teach" me how to use the self-checker machine when I already knew how but was just moving a little slow. I can't remember pred ever making me feel sad, but I suppose it is possible, as I haven't always felt like a million bucks while on it. Right now I'm on 20mg./day, up from 10mg., increased along with the MTX when I had a flare recently. My doc is giving me the leeway to decide when I'm ready to start tapering to 15mg. and then to 10mg. with some little steps in between. He'd like me back to 10mg. by April 15 when I see him next, but I don't know. I do feel better, and I find that what I eat really affects how I feel, so maybe if I'm careful about that, I can do it. I've never been below 10mg. since being dx'd.

I could tell you some things my non-WG-specialist doc has said that would make your hair curl, too, but I know from this forum that the treatment plan he's had me on is pretty standard, the only possible fault being prescribing slightly too low doses of some of the meds. He's a believer in "as few drugs as possible" and says I'm "not a very big person", though I'm a bit overweight for my short height. But he actually listens to me more than he used to, and I'm doing pretty well. I have a moderate case of WG that seems to respond well to standard treatments. This does not mean I don't need to find someone closer to being a specialist. But it sure helps to have this forum to get information from and have some sort of starting point when talking to any doc.

[Debbie C]

Marci,glad to hear everything came back good..When are u supposed to go back up or are you just going to have your labs done where you live and sent to them. I have to go the end of July. I saw my pulm dr. today and he said my lungs look excellent and I don't need to see him for a year YEAH !!

[Pete]

Hi Marci,

Glad to hear all is ok. With respect to drug side effects, you may not experience any. I take my mtx at dinner on Wednesdays. No problems, and I had none with ctx either. My wife attributes this to a "cast iron" stomach.

Watch your appetite with the high dose of pred. When I was taking 60 of pred, I gained back the 20 lbs I lost before dx plus about 10 more. I want to lose about 15 pounds once I get off pred.

[NikkiNicole]

Yay Marci for getting things rolling as far as treating you! I am curious to see how you are feeling. I look forward to the day I start my CTX. I want to feel better and I want to feel better NOW!

[Tom]

Lots to learn but cit can be intersesting. I will tell you from experience that you will need to watch the moods with with the Prednisone. In 2006 when I took my first chemo treatment for cancer, I got a bad case of a bad mood and couldnt figure out why. I was jumping on everyone and it all came to a head on that first Sunday morning, I wanted to start destroying anything or everyone in my way. I knew I was out of sorts when the Pastor greeted me. I felt such a rage I didnt know how to react. When we got home I told my wife that I couldnt shake this feeling and about church. The next day I had an appt with the oncoligist and he asked how I was doing, I told him I was fine, he asked how I was doing on the pred and I said fine but my wife stepped in and I got it reduced. I felt better the next day. When I started my wegs treatment, I was on 60 mg pred and still on a high dose since 2011 but I am aware of the effects on me ans I manage fine because I can recognize roid rage now. The pred can make a Jeckyl and Hyde out of you. Just when you think you have leveled off, an event happens that sends you into a mood. Had a trucker at a hospital construction site toot his horn at me because I would turn right after stopping at a red light. Good thing there was a 10 ft fence between us when I caught up to him because I told him if he would come around the fence I was going to stick that horn someplace he wont like. If you are feeling buggy, tell your Dr. Besides that food is not safe and my bathroom scale is getting a workout. Good ending to the trucker event, turns out he is friends with my BIL and he heard both stories and put them together, Now the trucker and I speak on a cicil level now. Says hes going to get me a t shirt from the company as a measure of good will. Anyway, watch the pred.

[annekat]

Interesting pred stories, Tom. When I was on 60mg., I was too sick to go anywhere so couldn't get in much trouble. Still gotta watch it though, even apparently at 20mg. or less. Sometimes catch myself being a little testy. I live alone so if anyone here gets yelled at, it's my cats. Usually when they do something annoying.

As for food, yes it can be a problem, especially when living alone and having no one to witness my binges. Lately, I've been cooking for someone else, too, temporarily. I'm making better meals and not just eating whatever's in sight, and I'm eating a more moderate amount. It was definitely more of a problem on the higher doses, but still an issue sometimes.

[drz]

High dosages of prednisone can create great mood swings and extremes in emotions. I remember laughing at silly things and getting real tearful over any sad news. At real high dosages a steroid induced manic psychosis is very likely but those places that use such treatment are familiar with it and know how to handle it quite well. A euphoric state and feeling of elation is typical but periods of "roid rage" can be extremely disturbing to everyone. The elation and higher energy might feel good for awhile but when you run out of energy and crash it can be a real nightmare. Be sure you have some good friends or family to counsel and console you if this happens. Don't make any important decisions while under the influence either. It is, however, a great learning experience and new adventure.

[Alysia]

another strange pred phenomenom I have when on high doses: my cooking changes: with no pred my cooking is boring, but with pred, I got inspiration in the kitchen, using many spices, inventing delicatessen, my sense of taste is totaly different. so when I cook somthing very good, my big child (19) asks how much pred Im taking...:thumbup:

[annekat]

That sounds like me, too, drz. It can be pretty unpredictable. One good thing is I seem to know when I've reached the level where I need to taper. I think I've reached that level just now. I took my 20mg. for today but it is already making me nervous. If I still needed that much I think it wouldn't be bothering me as much. I think I feel good enough that tomorrow I can take 15mg. and then maybe 20mg. the next day, alternating, for an average of 17.5 a day. And maybe get down to a solid 15mg. within a week or so. I haven't been on 20mg. very long so shouldn't be as hard to taper. (Was at a steady 10mg. and increased it to 20 for a flare just a month and a half ago.) My doc seems to trust me on regulating the taper myself, which I like.

[annekat]

another strange pred phenomenom I have when on high doses: my cooking changes: with no pred my cooking is boring, but with pred, I got inspiration in the kitchen, using many spices, inventing delicatessen, my sense of taste is totaly diffrent. so when I cook somthing very good, my big child (19) asks how much pred Im taking...:thumbup: That's funny, Alysia! My sense of taste is really different, too, but I don't know if it's just from the pred, though could be partially. It makes it hard for me to cook for someone else because what they are tasting is probably different from what I'm tasting! I'm glad it's working out so well with your "big child", though!

[Marci]

First of all, I am loving all the Pred stories. What a great place we have here.

I was going to come on yesterday and give you an update on how I was doing on the MTX but I spent most of yesterday shedding old EOB's and utility bill receipts that I had from my inlaws before they died. I did bill paying and insurance stuff. Could not believe all there was. Felt good to clean up the desk. Also we are finally getting our kitchen out of the 70's. Good bye harvest gold appliances. My hubby does all the work himself (only way we can afford to do it...cost half the price) so it takes quite awhile. We were discussing what lighting we want to use and wear to put it.

It was a good day. Two days on MTX and no bad side effects and my energy level is still good. Still getting use to my lineup of pills. Taking one day at a time.

[Jaha]

Marci,

Glad to hear you are doing well on the meds. Thoughs Preds are good for something!:thumbsup: