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purr6
04-19-2010, 06:53 AM
Hello Everyone,

First of all, let me say that I am extremely appreciative of the existence of this website. I was diagnosed with Wegener's in December 2009 and have found it difficult to find information about this disease even with the team of medical doctors that I have such regular contact with now. This website has provided me with soooo much valuable information, so I would like to say thank you!

I DO have a couple of questions. I have had numbness in my right foot since being diagnosed in December and was wondering if anyone else has this situation. While the numbness has improved somewhat, it is still an issue. Some of my doctors think it will resolve itself but have given me the rate of 1cm per month improvement and others tell me that it may never get better. Does anyone have any information or experience to share on this.

Also, I am presently being "weened off" of the prednisone (and I might add that it can't happen fast enough). My doctor has chosen to do this by lowering the dosage every other day. I began at 50 mg each day and then went to 50/40 (every other day), then 50/30......then 50/20..then 50/10 and am now at 50/0.......He will then lower the 50 dosage and keep the alternate day at zero. My question is, has anyone else every had this experience of lowering prednisone dosages? I am curious.

Thank you sooooo much and let's all keep trying to make lemonade out of lemons!

Purr6

elephant
04-19-2010, 07:04 AM
Hi Purr6, No I never heard of that type of weaning. How are you feeling with that prednisone weaning? Purr did you start out with cytoxan? Are you on Cellcept, Imuran or methotrexate as a maintenance dose? Who is your WG specialist?
I personally have not had numbness but some tingling to the feet last year...it went away......shhhhh I hope the wegeners didn't hear that. :)

purr6
04-19-2010, 07:29 AM
Hi Elephant,

Thanks so much for your response! I am feeling extremely "up and down" consistent with the prednisone weaning it seems. It seems as if I don't know which end is up with the extreme differences in how I am feeling. I am also on cytoxan and have been since being diagnosed in December--my doctor seems to feel it would be beneficial to be on the cytoxan for 2 years, but I am concerned with this and am going to ask for something else since the long -term effects scare me. I don't have a Wegener's specialist--I am not even sure if one exists in Ontario. I know in reading these posts, there are many available in the US, but unfortunately, I am limited to my rheumatologist.

I am glad that your numbness went away...and don't worry, your secret is safe with me from the dreaded Wegeners....LOL!

elephant
04-19-2010, 08:18 AM
As you know Purr6 being on Cytoxan for two years is not good. Sangye and the others on this forum would agree, I think you need to contact the Vasculitis Foundation and see if you or your doctor can call a WG speicialist. When I was weaned down last year from prednisone the Rheumy started me with 60 mg for a month then 50 mg for a month, then 40 mg for two weeks, 30 mg for two weeks, 25 mg for two weeks 20mg for two weeks, 17 1/2 for two weeks, 15 mg for two weeks, 12 1/2 for two weeks, 10 mg for a month, 9 mg for a month, 8 mg for a month, ect till you get down to 1 mg a month. But I did not make it that far. I got to 5mg of Prednisone and I started to have sinus and ear problems so it was increased to 10 mg of prednisone a monthe, now I am doing a slower taper 9 mg for six weeks and so forth. Hope I did not confuse you.

Sangye
04-19-2010, 08:20 AM
Welcome, purr. I'm glad you found us.

So wow, I really think you need to bring in some new help. I've never heard of alternating dosages like that. Usually they start alternating doses when you're down to 15mg or less, and it goes more like 15mg-14mg-15mg-- so a difference of 1 mg, maybe 2mg. I think the swing from 50mg to zero is unbelievably extreme. I know if I were doing that even for a week my Wegs symptoms would go wild.

I also think keeping you on ctx for 2 years is a sign that this doc is in over his/her head. Ctx is a very toxic drug with serious long-term risks. There's a lifetime limit to how much you can have. For those reasons, Wegs docs get patients off ctx as fast as possible-- aiming for 6 months or less. If the Wegs is still active at that point, they switch to a milder drug like imuran, mtx or Cellcept.

Please email or call the VF and ask for guidance on finding a Wegs doc in Ontario or consulting with one in the US.

JanW
04-19-2010, 10:48 PM
Hi, purr6. How was your WG diagnosed? What are your 'classical' clinical symptoms (e.g. nose, throat, kidneys, etc.). I too am one of the Weggies suffering with my feet right now -- truly if my foot pain is related to my WGs (which I believe it is) it is my most significant (by far) clincical symptom. I had surgery for subglottic stenosis last month so I can breathe easy again, and I have a saddle nose which causes me no problem (except aesthetic ones of course). I have never heard of the taper you describe (though I hasten to add that I am not on pred), and what I've heard about ctx is anywhere from 3 to 6 months is what docs think is the safest course -- it is very toxic. I am currently on 15 mg per week or mtx, mostly because my symptoms aren't severe and neither SS nor SN track disease progression. Sangye is right -- it would be great if your rheumy could contact the VF -- there is much to learn.

jola57
04-24-2010, 04:13 PM
Hi purr6, one doc in ontario is doing Weg research so should be a ble to tell you of Weg specialist in Toronto. Like JanW I have foot pain and also numbness. I had what is termed a dropped foot (look it up on the internet) and now have tingly feeling only, no real sensation in both feet. It has been like that for 3 years. There has been very limited improvement. Don't get discouraged, we are all different and some have totaly recovered their feeling in feet.

Doug
04-25-2010, 01:27 AM
I had the foot numbness so bad it was like walking on bruises. If I stood still for a short time, I'd actually grow nauseated because of the sensation described. The condition continued from sometime before i was diagnosed in December 2003 until October 2007. Two weeks before I had a severe herpes zoster attack, the numbness in the left foot (never as bad as the right) was virtually gone and the numbness in the right was segregated to a small part in the instep. After the herpes zoster attack, the numbness returned to the right foot to levels nearly as bad as the WG stage earlier, but not so bad in the left. Two-and-a-half years later, today, I still have numbness in my right foot, though improved.

purr6
04-26-2010, 03:38 AM
Thanks so much, Elephant for sharing your weaning process. It wasn't confusing at all--as a matter of fact, it was the process I was expecting. Sorry about the delay in getting back to you. My dosages have now been switched to 20mg daily and next week, I will be at 15 mg daily for two weeks. Can't wait to hopefully get to zero and I hope you get to zero soon as well!

purr6
04-26-2010, 03:43 AM
Hello Sangye,

Thank you for your response and sorry about the delay in getting back to you. I am now at 20mg daily for the rest of this week and will be at 15mg daily for two weeks beginning next week. This happened after having an appt with my rheumatologist this past week. I also questioned the ctx and mentioned that it should not be for longer than six months. My rheumatologist is seeking the advice of my other doctors now and one is very strong on the opinion of being on it for only six months, so I hope that I will be on the right track soon. I will check the VF for a Wegs doc in Ontario, but at first glance, I was unable to see one on the list.

I greatly appreciate your good advice!

purr6
04-26-2010, 03:52 AM
Hi Jan,
My Wegeners was diagnosed after a trip to ER coughing up blood. I also had the numb foot at that time, skin lesions, sinus issues for 9 weeks prior to that, fever, weight loss, dehydration, slight kidney involvement and severe joint pain. The Anca result was what they really went on for the diagnosis, but a skin biopsy was taken as well. I DID start treatment prior to the skin biopsy results coming back, but I am unsure as to why that was the case.

The foot pain is something that none of the doctors really can give me any definite answer about. I am going to physio twice per week and things have improved, but not to the point of feeling "normal" again (if that is even possible). Initially, shower water on my foot was excruciating, but now that has improved. I DO believe that the foot issue is a Wegeners thing definitely. I am sorry to hear that you have had so many other issues as well. Do you feel that your foot has improved at all? I am taking Gabapentin for pain. Are you able to take something for the pain to help? I am in the process of hopefully switching to mtx from the ctx at my request to my rheumatologist.

Stay positive and thanks so very much for sharing your story! I appreciate it sooooo much!

purr6
04-26-2010, 03:56 AM
Hi Jolanta,

Thank you for your response! Do you happen to know the name of the doctor doing WG research in Ontario?
Sorry to hear about your foot pain and numbness. I know how difficult it is. Wow, Three years is a long time to live with that numbness. It is such an odd feeling. It has been 4 months for me and sometimes it is easy to get discouraged.

I hope that other than the foot pain, you are feeling well!

Take care and thanks for sharing your story with me!

purr6
04-26-2010, 03:59 AM
Hi Doug,
I know the feeling of walking on bruises--or I guess I have sometimes thought of it as walking on pins and needles. Were you taking anything to help with the pain associated with it? I know how uncomfortable it can be. I am glad to hear that you have had some improvement and I hope that continues for you!

Sangye
04-26-2010, 11:26 AM
Purr6--I suggest calling and/or emailing the VF to ask for their help. The Ontario doc is at Mt Sinai. I think the study (and contact person) is listed on the VF website. VF folks are very good at guiding Weggies from all over the world.

I imagine they started your treatment before waiting on the biopsy result because you had alveoloar hemorrhage. That can be deadly very quickly, so there's no time to lose waiting for results.

jola57
04-26-2010, 04:55 PM
purr6 her name is Dr. Katherine Siminovitch.

purr6
04-27-2010, 09:34 AM
Thank you Sangye. I appreciate you sharing your knowledge on this. I will check out the VF for the doctor at Mt. Sinai. It was good to know about the alveolar hemorrhage as well as the urgency of things was never relayed to me. Now I will know to act accordingly (considering it can be deadly quite quickly) if I have a recurrence. I think that is one of the most challenging aspects of all of this--not knowing what to look for in a recurrence.

Thanks again!

purr6
04-27-2010, 09:35 AM
Thank you Jolanta,

I will check into contacting her!

Sangye
04-27-2010, 12:42 PM
Purr, last summer I knew I was flaring but my docs weren't sure. I was going downhill for several months. One morning I was much worse and I paged my Wegs doc to ask if I should go to the ER. While I was waiting for him to call I coughed up some blood. When he called I told him about it and he said to get to the nearest ER immediately--preferably by ambulance. You can go from coughing up blood to massive pulmonary hemorrhage instantly. My local hospitals are horrible and I'm too far to take an ambulance to JHU. I told him I'd have a friend drive me to JHU as fast as possible. He was really upset-- I live 1.5 hrs away. I knew the risk but took it anyway. My local hospital are that bad!

He said coughing up blood is ALWAYS a trip to the ER. So now you know at least one thing to look for! :)

pberggren1
04-28-2010, 05:56 AM
My local hospital is bad too. I wish I lived in Saskatoon where my Rheumy is.

purr6
04-28-2010, 08:33 AM
Thanks so much for the info. I am sorry to hear that you have had such a terrible time with things. I agree that it is soooo difficult to be treated properly when no one really knows much about this disease. As a result, sometimes we are at the mercy of the health care professionals. I have tried to make it my mission to find out as much is possible myself about this disease so I can at least know what is happening to me.

My hopes are that you will not have to have any more trips to ER, Sangye!

Sangye
04-28-2010, 10:52 PM
Thanks, purr! My ER trips have definitely slowed down the last couple years. The first year I was constantly in the ER. I have no idea how many times! Many resulted in hospital stays (I've had at least 20 in 4 yrs) but not all.

Good for you for educating yourself about Wegs. We have to learn about the disease, the drugs and how they each affect us.

Doug
04-29-2010, 01:45 AM
Hi Doug,
I know the feeling of walking on bruises--or I guess I have sometimes thought of it as walking on pins and needles. Were you taking anything to help with the pain associated with it? I know how uncomfortable it can be. I am glad to hear that you have had some improvement and I hope that continues for you!

Actually, I wasn't prescribed anything for that discomfort/pain, probably because I resisted drugs when I could. Until recently, I was on Gabapentin (600mg, four times daily, with a 60mg Cymbalta on top of the bedtime Gabapentin for good measure, I guess), but it was presecribed for postherpetic neuralgia that started in November 2007, but went untreated until August 2008, when the pain got to be such an issue, I saw a physiatrist. I'm still taking the Gabapentin on a reduced level- as needed- but note that it does help me with the WG-caused peripheral neurapathy, such as that is.

JanW
04-29-2010, 02:02 AM
I don't take anything for the foot pain other than a couple of Tylenol after PT. The PT does seem to be helping me regain mobility, and the foot doesn't hurt at all at rest -- and most of the time it's at rest. It's just annoying not to be able to do the things I'd like to do, but I wouldn't term it a chronic pain condition.

jeriorleans
05-05-2010, 06:57 AM
A.J. was weaned off the predisone the same way 60/50 for a week then 60/40, then we did 60/0 and started dropping the every other day by 5 if that makes sense.