Sound familiar?

[mikebonella]

Hi. My name is Mike and I have had WG for about 13 years or so. I have been out of remission and back on methotrexarte for a while now and just want to see if any of what is going on with me this go around has happened to any of you. Just a couple of quick things...

1. I have high blood pressure. I have been seeing more and more that other WG patients have to take meds for this. Do you? Is this a common problem for those of us with WG? I was having horrible migraines and now that Im on meds for high BP, no more migraines (knocking on wood here).

2. My first onset of this disease began with horrible joint pain. So bad it was hard to walk. This started happening again, so back on methotrexate. I just am curious if any of you with arthritic symptoms have experienced the following:

Do you ever feel like your body is slow to respond? its difficult to describe this sensation, but i will do my best... When I have been stationary (sitting mostly) or laying in bed etc, when I get up, my body is sluggish. First my limbs are achy from not moving and stiff, but then after I get moving around some, my limbs seem like they are a half second behind my brain when it comes to simple things like walking or climbing stairs. Its like your body is completely exhausted, but your mind is alert. My muscles ache some along with this too and sometimes some joints. The joint pain, despite the mtx is concerning, the rest of this makes me wonder if Im crazy, hypochondriac, or if it is part of the disease and/or the methotrexate causing this.

Would appreciate very much hearing from anyone else feeling similarly.
Thanks.

I will try to post my story and intro a little later when I have more time. To keep it short... I was diagnosed with goodpasture's syndrome and WG. Nearly died from kidney failure the first time it occurred. Will post my longer version later tonight or tomorrow.
Mike in Kansas

[jola57]

Hi Mike and I bid you welcome to our forum. Yes, yes, yes and yes to answer all your questions. I and many others here have had all or some of your symptoms including the migranes, I used to get aura ones with frozen fingers and one side of face. Pain and more main. I am on my second round of chemotherapy with cyclophosphamide for 10 months now along with prednisone and bactrim, next moth I will go onto methotrexate.
You say you were diagnosed 13 years ago, so that means you have been in remission for almost that long? How was it, were there any symptoms during that time, did you take anything, were you painless?

[crackers]

hi mike.i too have high bp and take lisinopril which is working well.in my case it is muscle not joint pain but the effects are similar.when i get out of bed or if i've been sitting for a while the first few steps can only be described as the " zombie shuffle ".arms akimbo and feet not leaving the floor as i try to move forwards.like a cross between something from thriller and a very slow moonwalk.
john.

[mikebonella]

Hi again. Yes, I was in remission for about 11 and a half years when the arthritis came back. Since there was some confusion as to whether I was having problems with Goodpasture's or Wegeners or the other possibility of having RA, the docs werent exactly sure what to do. They began methotrexate after the pain became severe and nearly constant. I have been on it now for almost a year I guess. It was helping, but the arthritic symptoms are comng back despite the methotrexate. I am presently taking 6 tablets, cant remember how many mg. I saw my rheumatologist a couple of weeks ago and she thinks she will up it to 8 tabs for a while. The strange thing is that all of my blood work looks normal, (for me). I had sever kidney damage the first go around.

The first attack, they put me on cytoxan 300 mg per day and a huge dose of prednisone, daily. I also was on dyalisis for about 3-4 weeks. I continued the cytoxan for about 3 years and the prednisone for about 1.5 years if I remember correctly. I went into remission, where I felt pretty much normal again for around 11 years. I did have migraines throughout that time though.

The first attack, was BAD.. I had arthritis so painful, I cant begin to describe. It went on for about a year and a half with no other symptoms and i was told I had RA and couldnt do much about it. The pain kept getting worse, then the flu-like symptoms came about along with dizziness and shortness of breath and chest pain. At the time I was quite poor and had no insurance and was going to the community health center. I finally saw a good dr. when the chestpain etc started and he did x-rays and other tests and couldnt believe I was alive. He rushed by ambulane to Kansas City (about 2 hours away) where a team of specialists did a kidney biopsy which came back + for GP and WG. MMy kidneys were failing, my heart was doing weird stuff and I began having seizures because the capilaries on my brain were breaking. Later they told me that I made it within hours of dieing from the kidney failure and lungs filling with blood.

got to go finish making dinner... More later

[Terri]

Hi Mike and welcome to the forum
I've recently started my first round of Methotrexate after being on Cytoxin and then Imuran. I'm now up to 8 pills once a week and I don't know if I'm feeling the effects of it or what the heck is going on. My prednisone was upped from 5 mg to 60 mg but am tapering down now and am at 25 mg.
The only complaint I had on 60 was that I wasn't sleeping well but ever since I started to taper I can't seem to function well. I go through the motions
Does that sound weird or what?
I just can't find my "normal"

[Jack]

Hi,
Your symptoms and story sound all too familiar. Kidney damage will cause high BP and you should be taking Ramapril to both protect your remaining renal function and bring your blood pressure down. Keeping it as low as possible is very important for renal patients!

[mikebonella]

Hi guys. Thanks for your replies. I am taking a med for my BP. Its called Bystollic and the blood pressure is MUCH better, not perfect, but much better. Interestingly, I haven't had a single migraine since I got on this new med. Been almost 6 weeks and Ive gone from 1-2 migraines per week to 0!!!! Im ecstatic about that.

Ive been seeing a rheumatologiost in Lawrence KS and I used to see a nephrologist in Kansas City regularly after my stint in the hospital the first go around. I saw him about 6 months ago just to touch base that the disease was coming out of remission. I have a great physician in Manhattan, where I live who keeps in touch with the other docs and really listens to me when I see him. I am thinking however, that it is time to contact the vasculitis foundation and find a specialist who really knows the ins and outs of WG. I just want to see a doctor who is more familiar with the disease. My rheumatologist is great, but admits that Im somewhat of a mystery to her.

I dont know if any of you are familiar with goodpasture's syndrome, but it is a bit more severe than WG, google it if you are curious. Its interesting when I go to the ER or new docs, they get soooooooo excited to meet a goodpastures survivor. I also laugh when I hear that name and WG come up on shows like House .

I went to the ER about a month ago because I thought I was having a heart attack. Had really bad chest pain all night. They took my BP when I got there and it was 201/96. Thats when my doc changed my BP med. They said it wasnt a heart attack, but that something was wrong. They gave me a handout about muscle pain and sent me home once the BP came down to 160/92. Again, NO familiarity with GP or WG. This incident as well as the arthritis coming back make me think its time to call in a pro (specialist) on vasculitis.

Im grateful to finally find an ACTIVE forum for WG. Its such a weird disease. Its a relief to hear that the symptoms Im experiencing are common for us. I sometimes think Im crazy or a hypochondriac when I see the Rheumatologist and she says the blood work looks ok (for me) and that the joints arent swollen. Which leads to another question... Do you guys find that the pain starts in the early evening then subsides quite a bit by later morning????

[CanadianGuy]

Hey Mike,
I'm new to this forum (I'm a father to a Weggie daughter).... but welcome none-the-less!
I was wondering if you had thought of injectable Methotraxate? It is my understanding that it works much better than in pill form with much less side effects. Also... your comment on early evening problems reminds me of my daughters cough. It seems to get worse in the evening and then subsides in early morning. I wonder what the cause of the "evening increase" is?? Do you have a persistent cough as a symptom... and if so... what do you do about it??
Once again... welcome! There are a lot of great people here!!!

[mikebonella]

I dont have a regular cough, but I do get bronchitis a couple of times a year. How long has your daughter had this cough? Seen a specialist for the lungs? Durring my first attack, the capilaries in my lungs were breaking and they were filling with blood. I did have a cough then. I hope your daughter's doc is doing x-rays and really keeping an eye on things.

I have thought about the injections and if I do the increase in methotrexate, will likely bring it up with my docs because the 6 tabs are sometimes rough on my stomach. I think Ive been getting used to the methotrexate latley though. My stomach has been better lately, but man, it really zaps the energy from you. I take 2 tabswith meals. Im fine after the first at breakfast, then after lunch I start to not feel so great and by the 3rd dose I just want to lay on the couch. Unfortunately, as the owner of 3 retail stores and the father of a fantastic 2 1/2 year old, I rarely am able to lay around.

I think a lot of illnesses surge in the evening (thinking about fevers for my daughter when she has a bug). Its a strange phenomenon. Anyway, keep an eye on that cough! Also keep in mind that methotrexate works by knocking back the immune system. Your daughter is much more susceptible to getting viruses while she is on it. Hopefully, thats all the cough is, but even so, her body cant fight viruses very easily due to the methotrexate. I hope you have a great doc keeping an eye on her. I couldnt imagine watching my little girl go through this. My thoughts are with you.

[CanadianGuy]

This disease is so random in how it affects people sooo differently!
My daughter has had this cough for about three months. She's seen her rheumotolgist who said she could bump up her prednisone to 50mg for a week to see if it does anything. She's seen her nephrologist who says all is well re:bloodwork with her kidneys. She's seen her pulmonary specialist who says all her pulmonary tests show up as normal. The ENT specialist who did her throat "stretching" says her throat is clear and her sinuses look fine (even though she has a stuffed nose constantly).

She was taking the injectable methotrexate... but stopped taking it about two weeks ago when her Liver enzymes were elevated... but overall, she reacted quite well to the injectable version. She had been taking Immuran for quite a while before... but the rheumatologist thought that methotrexate would be better over the long haul. CELECPT did not work well for her at all... with too many side effects.

Thanks for the kind and supportive words Mike! I think it works both ways... I'm sure your daughter doesn't like to see Daddy sick either. We live in miraculous times with stem cell research, new drug regimens, and new treatments being established in a couple of years.... whereas, in the past it would have taken decades! Hang in there... I just know that things are going to get better for all who suffer with WG!!!