New Rheumatologist

Saw the new rheumatologist today and he's very thorough. Not friendly, but very specific in his questioning and exam.

He thinks I might have Churg Strauss Syndrome, which is a vasculitis in the lungs and seen as late onset allergies and asthma. I've had wheezing and rahls in my lungs for a while, but when I saw the immunologist they had settled down. Probably because I had upped my prednisone. I told the immunologist about the wheezing, but since it wasn't happening then, he really didn't seem to even listen to me. He was more focused on the skin symptoms.

Well, I've been really wheezing in the last couple of weeks. In fact it seems to be calming again, but it's still pretty pronounced. As soon as I drop my prednisone, it returns. Sometimes I can't sleep laying down because the wheezing get so much worse. It even wakes Jim sometimes. The rheumatologist got a listen to it today and was concerned and really gave my lungs and heart a double listen.

I've been having problems with reticularus again too, which has been really purple and lazy. My hands have been really bothered with the cold too, so Raynauds has been acting up too. Even though it was reasonable today, my reticularus and raynauds were really bad, so he saw that too. One thing he did, which I've never had done before. At least I don't recall. He took a small light and really looked at the small vessels in my hands and remarked that they were not good. He looked at each finger with the light to see the small vessels in my fingers.

The combination of all these things leads him to think I've got some form of vasculitis going on and since he heard the wheezing and the shortness of breath, he suspect Churg Straus Syndrom. I had a ANCA which is an autoantbody test for Churg STrauss. In the mean time, he wants me back up to 15mg of prednsione. That will make me feel better and probably help reduce the wheezing, but generally it does not go away unless I'm at 30mg or above, but as soon as I taper it returns. Apparently the treatment for this is high dose steroids, generally or a longer period of time and often that does not resolve the vasculitis, so cytoxan for a year is often needed along with the steroids. I guess it depends on how advanced the Churg Strauss is. Often theses a drop in platelets from a person normal, but not severe enough to call it thrombocytopenia and I had a recent drop from 250 to 150. There's also an increase in eosinophils, which I've also experienced, although with steroids both seem to correct back to normal.

Once i read about Churg STrauss, I can see why he suspects it. All my symptoms do point towards it. Even the skin rash is seen in Churg Strauss, but biopsies don't generally pick up the vasculitis in skin tissues, because the rash is from the degranulation of mast cells, from the elevated eosinophils. Biopsy picks up the eosinophils in skin tissues, which is what my biopsy had.

I guess I'll just wait for the lab results and go from there. I can't believe I've seen a rheumatologist, hematologist and immunologist and none of them picked up on this. I guess I should be thankful the last rheumatologist quit the practice and I had to see a new one. If he had not left, I might still be working with him and no answers. I saw the immunologist first, because he was local and easy enough to see. At last he had a combination of medications to help manage the skin rash and symptoms and he insisted I see the rheumatologist and got me in earlier then I might have been able to get in without his referral.

I really hate these autoimmune diseases. Such an intrusion into my life, I don't know how I just keep rolling with all this crap and wonder if one day I'll just totally go insane.

We will allow no insanity here, so just forget that idea.

I'm sorry, Kim. You can't get a break. Please let me know when you get the results.

Kim wrote:

I guess I should be thankful the last rheumatologist quit the practice and I had to see a new one. If he had not left, I might still be working with him and no answers.

Kim that's why I tell people who are mad their doctor moved or retired or no longer takes their insurance that chances are the new doctor will be better. The new doctor [usually] is listening to you instead of being so used to you all they are hearing is buzzbuzzbuzzbuzzbuzz when you are talking to them. I know I didn't want to change from my MD of 22 years but we had to change medical insurance to an HMO - I would also have to leave my hematologist who I really liked, and my endocrinologist who I liked because she was a hard-nose and didn't take crap [can I say that] & like your new rheumatologist not very friendly. Those were the only 2 specialists I had at the time.

Anyway we started with the new MD and she listened to me - I know if I had been with my old MD he never would have heard me ask why would my feet be tingling? Because of my new MD I have THE most wonderful neurologist, one of the top in the state [yep, and he's with my HMO]. That's just one example.

I am delighted your new rheumatologist is listeing to what you are telling him, that he has some ideas, that he is checking things out!! What I am sad about it you are still having problems.

You're right Melinda, sometimes it's better to change. I was always a little unsure of the other guy anyway. In fact, 5 years ago I switched from him to a rheumatologist in Milwaukee, because he always gave me the impression that he just wasn't all that into rheumatology, especially the more difficult cases.

Good news...I already received a call from the rheumatologist. He called around 7:00. He said the ANCA was negative, so no vasculitis. It's probably just another autoimmune process, but not vasculitis. He said to continue on the 15mg for another 2 days, then try and taper as I can tolerate and follow up with him in 4 months and the immunologist as scheduled. I'm scheduled to see the immunologist in 3 weeks.

Thank goodness, as the whole vasculitis thing had me totally spooked. I guess I'll just have to get used to the symptoms and deal with them. The itching is greatly improved, so maybe in time the other symptoms and the remaining itch and rash will resolve. One can hope!

Sandi,
I saw that you went home from work early. So sorry to hear that. How are you feeling now? What's up? I hope everything is OK. As best as it could be anyway.

The rheumatologist suggested Lyrica for my fibromyalgia pain. He also suggested neurontin, but neurontin didn't do much before, so I really don't want to start that up again. Not so sure about the Lyrica either. It has warnings about allergic reactions and I hate to start a new medication and risk itching and hives again. My fibro pain has gotten pretty bad and I can't take any of the pain meds for it, because of hives, so the pain does get to me. Have you considered Lyrica for pain? Anyone else reading this, chime in, if you're taking Lyrica or have tried it.

Let me know how you're doing...I worried, never heard you say you've left work early. Must have been a bad day. Take care.

Kim - good news! I'm glad to hear it's not vasculitis. Whew!

My Rheumatologist did give me a script for Lyrica about a year ago. Then I found out that my insurance didn't cover it. I was going to appeal, but then began reading side effects and it freaked me out, so I didn't persue it. I have spoken to Curt about it since and he takes it with no problems, so I might revisit that option with a low dose.

Yes, I left work early. I am having a personal crisis that I can't discuss right now, but it's huge. Add that to normal work stress and Lupus and I'm a mess. I needed a slight break before I crack.

Hope you're better today and that personal crisis is being managed. I'm here if you need to talk.

I'll have to look at the side effects of Lyrica and give it a thought. It's hard to think about a new drug, when you're at the doctors office, especially when you're still not sure if symptoms you're having might not be from current drugs. I've added so many new antihistamine drugs, I just hated to add yet another one. The goal was to eliminate drugs, not keep adding new ones to replace the old ones.

This new rheumatologist feels my lupus is more active then what my labs indicate and that they are misleadingly low due to my continued use of steroids and plaquenil. He also said my fibromyalgia is causing most of the pain, but flaring because lupus is still active. That's why he suggested the Lyrica. I certainly could use a reduction in this pain, so I might consider it, although I think I'll wait until I see him again in 4 months. Maybe once I get this rash, itching, lung and sinus symptoms managed I'll feel better. I'm just so relieved it's not Churg Strauss Syndrom. The thought of a reemerging vasculitis had me concerned, although at least it would have provided a reason for all these symptoms. But what the heck, it's lupus and we don't know what causes most of the symptoms. These sinus and lung symptoms are really annoying. I keep getting asked if I have a cold and told how terrible I sound. Maybe that's effecting my psyche and making me feel worse.

Hi Kim, I just read down here today. Sorry to hear you are having all these problems and Sandi too. I have been thinking about you and I watched this video on AOL about that little girl who couldn't stop sneezing. A doctor finally said it was autoimmune caused by a bacteria. He treated her with IVIG and she stopped sneezing. I know that your case is very complicated but thought I would mention this. Amazing what our bodies can do. I have psorasis and sometimes have itching in the winter and really hate it. Hope you are feeling better soon. Hope to see you in Las Vegas, Debbie

Thanks Debbie. Actually, I have read that hives and autoimmune itching has been treated with IVIG, but generally it's not, because an extended round of antihistamines can generally eradicate it. Sometimes it takes weeks, or months and sometimes it takes a year or longer. I'm having some success with antihistamines, but the itching can flare and waxes and wanes, just as my lupus does. I'll just keep taking the antihistamines and hope eventually the whole thing will go away.

Kim I'm glad the new guy seems to be thinking outside the box...
The girl i sit next to at work keeps reminding me that while they may all have MD after their name that doesnt mean they all got A's.

Since i broke out in what they said was "shingles" I itch & bruise everywhere. the itching is not going away even a little. Its burn like and makes my skin feel all grainy and weird.

I've been so weirded out about fevers, abdominal pains & the weird skin... when i read how much crud you all are going thru it makes me feel bad that i've been whinning and self involved.

I'm glad to hear that you are feeling more hopeful.

Have you considered an immunologist? The combination prescribed combination of antihistamines, which were prescribed by the immunologist I saw have really helped with a lot of my symptoms.

Sometimes I get so annoyed with my own whining, I'll go months without saying anything and suffer in silence. I'm not sure that's a good idea, because I tend to not tell my doctor how much I'm annoyed with the symptoms. Waiting until you're about to go crazy isn't wise. So, whining can be good thing too, if it's constructive. Whining here gets results too! You can't necessarily say one persons symptoms are worse then another's, because it's all relevant and so personal.

Kim

Kim I was so glad to hear the ANCA was negative - it is a relief to know you don't have Churg Straus Syndrome!

Neurontin doesn't do much for me either - but then I won't take the huge dose that "may" do some good.

The girl with the sneezing - it was called a sneezing tic [she really didn't sneeze like the rest of us, no eye closing etc], they found out/feel she has PANDAS which is associated with strep and rare. IVIg has stopped the sneezing tic and they hope it is forever but they don't know.
www.adhd.com.au/PANDAS.htm

Kim, as Sandi says, no insanity allowed, we need you here to balance us out!

Sorry to hear that you have something new to deal with, but the good news is now you have a diagnosis, you can institute a plan. (or at least a framework, since autoimmunity can't be predicted).

I would love to be able to do that i have no insurance. I am hopefully changing jobs and will have lovely full coverage then but right now today until like july 1st no coverage.

the issues that i'm having come & go the last doctor i saw said he believed it was all ITP related <yeah right> that the fevers & the side pain are my ITP flaring. Ok the fevers i can see that might be platelet destruction. But the pain in my side? really???
I live in a very small town and women of a certain age 50ish are pretty much all treated the same... like we are all insane & post menopausal. grrr :blink:
Ok i aagree that i could be a bit crazy but in a good way <lol> Anyway i'm thinking as soon as it is humanly possible i will start taking better care of myself.

ITP "flare" - I have never heard of that before [did you bite that doctor in the knees?]