Questions

[Victoriaitsnosecret]

Hi I was diagnosed with Wegner's about 18 months ago. I was prescribed prednisone and methotrexate. At my last appointment with the pulmonary doctor he said my lung was almost completely healed. I had had some very large cavitary lesions. He thought it would be okay if I started to go down on the methotrexate. I told him that I have been having some pain and stiffness in my hands and knees and legs and asked if he thought it could be related to the Wegener's and he said he didn't think so.
When I went to see the rheumatologist who was running an hour behind schedule and trying to catch up he felt that would be okay to decrease the methotrexate by .05. My last appointment I told him about my hands being stiff and my legs being stiff and my fingers being numb and he had given me some gloves to wear at night. I told him that the pain in my hands and knees and legs were worsening. I asked if he thought it was Wegner's he said he it could be but he usually sees more inflammation. I told him that my legs and feet are often swollen. He didn't have much to say at all about that. He really didn't give me time to ask questions. When my blood test came back my sed rate went from 32 up to 56 isn't that inflammation? That's the highest it's been even right when I was diagnosed it's really never been over that 33. So my question if I'm still having these new symptoms is it wise to start tapering off the methotrexate? He also said that tapering the methotrexate could lead to relapse and it was a really good chance that that would happen. Does anyone have any thoughts or advice for me? I'm planning to call my PCP tomorrow because the pain in my legs is getting worse and I almost feel like I won't be able to walk soon.
Thanks for reading-
Victoria



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[Alysia]

Hi Victoria,
I am sorry for your pains. if they are in the joints, then it can be the wg raising its head if this is the case, then lowering mtx is not the choice.....
also the blood test which is above the normal, can indicate an infection.... or flare....
I think that you need to go back to the doc and insist on getting answers, or maybe going to another doc to get a second opinion.

[Dirty Don]

First of all, I don't care if a doc is behind, do your job doc! What's your pred dose? It may be too low with the symptoms. As for mtx, I wouldn't even consider going off it until I had things under control, not even reducing it. You obviously are still symptomatic, so no drug reductions yet. Mtx is simply controlling the effects of the AI attacking your innards. The mtx may also not be enough, you may need another drug available. Pred is meant to take care of the pains, etc. If you have a proper dose, then the pains will go away fairly quickly. Best to you.

[drz]

Sed rate or ESR results are more long term indicators. The CRP is more short term and better indicator of current status. Unless your doctors are well experienced in treating Wegs, I would get a second opinion before reducing any meds while you are still possibly very symptomatic. I would certainly want a better explanation of why the swelling and increased pain.

Sometimes i have told a doctor I was not satisfied with their assessment, usually when they have told me what a symptom is not, but have not given me much explanation of what it is or what caused it to appear. I have then contacted a different doctor and charged him with diagnosing what it is and what I can or need to do about it if anything. This usually means finding a doctor with more skill and/or motivation to diagnose the symptom correctly. Giving them this challenge has seemed to help me in the past as they have worked harder than the ones who left me dissatisfied with no satisfactory explanation for my symptoms.

Sometimes problems are caused or exacerbated by a med and then reducing it or replacing it is often the appropriate response but you want to have trusted physician recommend it.

Welcome Victoria. I like your handle.

[Victoriaitsnosecret]

Thank you- I've been off prednisone since January. My new symptoms began late February or March. This is when I first reported them to the doc who I've always had mixed feelings about. I was expecting x-rays of my hands and knees and got nothing. Felt like the doc was saying "well since you're not visibly doubling over in pain or bleeding from the eyes I need to move on the the next patient. Anyway symptoms worsening and they want to reduce meds. Ummm. No thank you. Second opinion please. Looking back on my test results I haven't had a CRP done since my initial diagnosis. Hmmm. I will ask about that. Thanks again.


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[darl-p]

Victoria, sorry to hear that you are not finding satisfactory medical help. I have been dealing with this problem for seven years and currently have a medical team that responds positively to any concern that I have. They are aware that this disease manifests itself in various ways with different individuals. My initial symptom was severe leg pain and a foot problem which was misdiagnosed. I asked for further blood tests and they found that the CRP and SED were totally out of line and did further testing. After 18 months of cytoxin and 5 years of imuran along with prednisone I am finally being weaned off prednisone and then the imuran. In the mean time we will continue to monitor any symptoms and results of blood tests. I travel out of the country for a month each year and carry certain meds to self medicate since they do not feel comfortable with me going to a local foreign doctor. If I think I am having a flare I will up my prednisone to 80mg for several days until the pain is gone and then use a reducing protocol they have suggested. I also am in email contact if needed. In 7 years I have had 2 flares and each time I identified them, and the test showed the infection was abnormal. A SED of 56 seems to be high although I have had readings of 108 and 120 and all else seemed OK. When it was 80 and the WBC was high along with an 8.9 CRP, this was a time when we took action since a few other things were out of line. I definitely would have a conversation with my PCP or my primary Weg doctor. Keep us informed.

[Victoriaitsnosecret]

Thank you! 😃


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[annekat]

Victoria, I see you are in Boston. There should be some good Wegs docs in that area who would do a better job of overseeing your case. Maybe some forum members in that area can help you out with some suggestions, either by private message or out in the open, whatever they wish. There is also a database of member recommended docs being put together by Cindy (windchime), so watch for that thread. I live on the left coast so can't help you much.

[rebekah]

So sorry you aren't feeling well. Like others have said, I would get back on pred and see if that helps. You may also need something other than mtx for treatment... but I'm not a doctor...

You are in Boston, have you thought about going to see Dr. Paul Monarch? He's a rheumatologist at Boston University that has experience with wegs (I've heard great things about him). Also listed on the VF website is Dr. John Stone at Mass Gen. I would try to see one of them. Hope things get better soon!