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Tim Roberts
04-15-2010, 03:15 AM
I am seeking everyone's advice regarding an issue that just came up with my WG treatment that I am hoping someone can help me with.

Back in August of 2009, I was diagnosed with WG and started on the regime of 20 mg of methotrexate and 60 mg of prednisone. I remain on the methotrexate and in the beginning of April my doctor weaned me off the 2.5 mg of prednisone that I was currently taking. At that time, they also did the blood work that we all used to. I should also add that I suffer greatly with spring, tree pollen allergies and so this time of the year in Minnesota is tough as all the trees are blooming.

In any event, I received a call yesterday from my doctor that my SED rate was elevated in my April bood work. During my prednisone time, my SED rate was 1 and continued that way until my April blood work. My CRP was on the low side of normal and my ANCA was just slightly elevated. My SED rate in April was 41 so my doctor was very concerned although she thought it was odd that my CRP was normal.

Could my increased SED rate be resulting from my spring allergies? Or, could it be my body just adjusting back from going off prednisone completely? My doctor indicated a return visit in May to check my blood work again. I have no symptoms and I feel fine so all of this seems odd to me that one irritation test would be completely normal and the other test would be off the chart. Maybe a coincidence that we are during allergy time as well? Any thoughts folks? If you could please let me know, that would be wonderful. As always, thanks for the help!

Tim

Sangye
04-15-2010, 03:51 AM
Tim, Sed rate is affected by longer term inflammation. It's slower to increase than CrP and also slower to decrease. CRP detects acute changes in inflammation.

So yes, an elevated Sed rate in isolation could be due to bad allergies, as they cause inflammation in the upper respiratory system.

Tim Roberts
04-15-2010, 05:11 AM
Thanks so much Sangye and that was my thought too. To me, it is just too coincidential that the increase in my SED rate happens at the same time I am miserable with spring allergies that I have had for over 35 years. Thanks so much for the message and the ongoing help. I greatly appreciate it!

elephant
04-15-2010, 05:15 AM
I agree with Sangye, I was told the same thing by my doctor. Any type of on going inflammation can increase your sed rate.

Tim Roberts
04-15-2010, 05:21 AM
Thanks for the message elephant and I appreciate the help. I was greatly concerned about the increase in my SED rate and confused that my CRP was normal and I am experiencing no WEG symptoms. You have both made me feel better. Thanks again for the message and your insight.

JanW
04-15-2010, 08:33 AM
It's funny, even though the pollan is so bad this year, I am not suffering at all. My doc speculates than even such a small dose of mtx (I'm only on 15 starting this week, three prior weeks at 4.5) that my immune response is supressed enough that I am not responding to the allergens. Or, he says that the 'allergic reactions' I was having were simply more misdiagnosed WG (primarily nasal).

Tim Roberts
04-15-2010, 08:38 AM
Thanks Jan. I can only rely on my experiences as far as allergies and this spring in Minnesota has been one of the worst on record. I am on 20 mg. of methotrexate and it has done nothing to prevent all of my allergy symptoms. I was very hopeful that it would but so far, the runny nose, stinging eyes and pollen in my lungs has not been any different for me than before I was on methotrexate. I wonder if your "allergic reactions" were that darn Wegener's Disease in disguise. I appreciate the response.

JanW
04-15-2010, 08:41 AM
I think it probably was despite the raised bumps that showed I was allergic to several things and the four years of allergy shots. I never had itchy or red eyes, for instance, and didn't get worse indoors or out!

Tim Roberts
04-15-2010, 08:45 AM
I agree Jan. My own experierce with pollen allergies is that they are definitely worse if you move outdoors or surround yourself with the culprit plants or trees. I cannot believe that if you had severe enough of an allergy to warrant shots, that you wouldn't have the typical red, itchy eyes but who knows? I'm not a doctor but then again I've certainly seen my share that don't know much more than I do either :-)

JanW
04-15-2010, 08:49 AM
But I had the skin reaction...so it must have been allergies! That's what the docs always said. Don't get me started on the steroid sprays that were supposed to stop the (certainly WG related) nasal crusting. Or the inhaled steroids that were supposed to make me breathe easier through my misdiagnosed subglottic stenosis. That I never responded to asthma medicine meant that I was a hard case. Ha! (never had asthma either).

Four YEARS of shots....the first year was once a week.

Can you tell I'm bitter ;-)?

Sangye
04-15-2010, 09:01 AM
Jan, holistic docs give two thumbs down to allergy skin tests. Unless you're testing something that would normally be injected into the skin in nature (eg beesting) it's a ridiculous scenario. We also think allergy shots are a waste of time and money, and may even create more allergies or autoimmune diseases by dysregulating the immune system. Constantly exposing the body to an allergen--even in small amounts-- keeps the immune system in a constant state of alarm.

The holistic treatment for allergies is (surprise!) exactly opposite to the medical approach. From a holistic viewpoint, allergies result from a weakened immune system that overreacts to its environment. The way we treat that is to regulate the immune system with treatments, nutrients and/ or herbs that support a healthy immune system. The typical person who does the medical approach for allergies has them forever and needs to jump from drug to drug to keep them under control. The typical person who does the holistic approach gets rid of the allergies altogether.

Unfortunately, a Weggie can't take the holistic approach with allergies. It would oppose our Wegs drugs.

Tim Roberts
04-16-2010, 12:13 AM
Jan, you have ever right to be bitter as the shots are no picnic. I had them for 17 years and they helped me greatly. My medical plan pressured my allergist to take me off of them as he indicated they didn't really help after 5 years. My allergies have now returned in full force and I am bitter about that as well. FYI, skin testing reveals that you have some type of reaction against certain things but it does not measure how much you are reacting. I still would be suspicious that you had allergies at all or was it just Wegener's creeping in? All in all, you have every right to be bitter.

Coco
04-16-2010, 03:43 PM
I understand being bitter, I walked around for almost 5 years with breathing getting progressively worse. I became a vegetable, basically sitting at my desk all day at work and then sitting in front of the TV at night because I could no longer do anything as I could not breathe. I had test after test after test which showed nothing. My Dr. telling me to take anti-depressants because nothing was wrong with me. Trust me, I understand being bitter. It's like living half a life, half of you has died. What are you taking or doing now?, now that you know that you have subglottic stenosis? Do they know for sure it is caused by WG? In my case (SS) they think its WG, but they don't know for sure.

elephant
04-16-2010, 08:50 PM
Jan, I have to admit but I have been bitter for years. Sometimes to make things right we need to stand up to those people who did us wrong....but in some ways I don't really blame some of the doctors who didn't pick up on it because our disease is so rare. I try to think of all the good that has happened because I have this disease. Believe me it is hard to think of the good when your in severe pain and waiting for the medicines to work. Yesterday I had a CT of my lungs, so I am hoping for good news!

JanW
04-16-2010, 11:58 PM
Was it a routine CT elephant?

Coco, I answered you in the sores in mouth thread.

elephant
04-17-2010, 01:36 AM
Yes, because last year I had a nice size lung nodule that they removed by- video assisted thoracic surgery (VATS). The Pulmonolgist and my local Rhuemy agreed that I should have it checked out since I am not quiet in remission but almost there ( that is what the WG specialist said). I will get the results hopefully Monday if not I will call them. I am glad I had it done yesterday. :)

pberggren1
04-17-2010, 08:37 AM
Coco:

I hope it wasn't your WG doc that said to just take antidepressants when it was SS.

Sangye
04-17-2010, 09:22 AM
I hope your CT shows excellent improvement, Elephant. I bet it will. :)

elephant
04-18-2010, 12:15 AM
Thanks Sangye, I am calling my pulmonologist Monday to find out my results. I am sure that my CT is good. :)

coffeelover
04-24-2010, 09:40 AM
I hope your CT shows excellent improvement, Elephant. I bet it will. :)

Ditto on the results of your CT scan.

Allergies during the spring bloom affect many people...always makes me wonder why I live in MN. This year, maybe because of my medicines I am on, I have had limited allergy problems so far. (knock on wood!) Although, I could just be getting used to the clogged sinuses and the nasal rinses are probably a plus for the nasal passsages.

elephant
04-24-2010, 12:27 PM
I found out that there are no nodules, my pulmonologist left a message on my answering machine and to call Monday if I want to discuss it. So I am glad he left that message. It made me feel so much better! Yippee!!

Sangye
04-24-2010, 12:30 PM
YAY for no nodules!!! I'm so happy for you, Elephant! How nice of your doc to call and let you know. :)

pberggren1
04-24-2010, 03:13 PM
No nodules is always good news!!!!

jola57
04-24-2010, 04:12 PM
Good doc, now you have a worry free weekend