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Jaypfei
03-16-2014, 02:53 AM
I've been dealing with this disease for a little over two years. I've been treated by my Rheumatologist now since December 2012. Mainly because my Pulmonary Dr. on post referred me to her.
My last flare was in August 2013 and took Solmederol infusions for three consecutive days before being started on a maintainence dose of Rituxan. Saw Rheumy in early December and was still having some issues so she had me do another maintainence dose as a precaution. One on Dec.26 2013 and the second dose was Jan. 9 2014. I should mention that I've been off Prednisone since the first week of November 2013.
Every time I'm taken off the Prednisone I experience horrific joint pain. Mostly in my hands and feet. From what I've read on this forum it seems a lot of us experience this.
In November I begain having issues with my lower back. I've had a history of lower back issues since my 30's. This episode in November was by far the worst that I've ever experienced. I had muscle spasms that locked my lower back up like it was a piece of armor. Long story short, Had MRI and referred to neurologist. I have four bulging disks from L1 - L5, severe scoliosis, and osteoarthritis. I took an MRI from '08 just as a reference to the MRI done Dec. '13. The thinning of the vertabrae was the most startling.....most likely from years of heavy lifting and of course the long term, high dose steriod. I'm currently in PT twice a week.

I have to be honest in saying that my Rheumy hasn't been forthcoming in giving me technical information on my labs. Other than telling me my Anca level. Which is why I'm posting today because I was so angry and upset when leaving her office this past Tuesday that I was ready to never go back and see her.
I'm sitting there in her office and I was about to ask her if there could be anything else going on to cause the joint pain. I've already test neg. for RA. She literally snapped at me by saying "No." Several moments of silence pass and then she is smiling and telling me that my anca is 148. Compared to last November at 190 that's a very good number. So good in fact that I will do labs again in May and when I see her in May if the number is the same, then she will give me an open date labs sheet and she will be done with me. In other words.....don't come back unless you're sick.

My question is....am I wrong in being appalled that she would consider 148 a low number? Or that she wouldn't even say the word remission?? I just feel like after nearly a year and a half, she can't get the disease under control and now doesn't want to have to deal with me.

Sorry for ranting. I'm just really lost as to why this Dr. feels that she shouldn't have to see me unless I get sick. I still see my Pulmonary Dr. every two months so that he can keep tabs and see how I am doing. And he's seen me since I was first diagnosed.

Thank you for any feed back.

Alysia
03-16-2014, 03:58 AM
Hi and welcome.
I agree that you need a doc who will listen and not dismiss you. waiting untill May is too far. and you need to continue to come to your wg-doc, maybe for life, so you need a good one.
anca is not the only thing to look at. how are you others labs results ? what are you suffering from ? what meds are you taking ? when are you going to have your next rtx ?

Jaypfei
03-16-2014, 04:22 AM
Hi Alysia,
Like I said, she's not forthcoming with my lab info. Currently she is only treating me with Bactrim three days a week and the Rituxan maintenance doses every three/four months. She told me if my anca was still at 148 then goodbye. If it's higher then another round of Rituxan.
Frankly, I'm ready to be done with her because I've been telling her about the joint pain/stiffness since last spring, but I'm ignored. The only time she listens is if I have bleeding nose or ear pain. I feel like I'm just a number on a lab sheet and as long as my number fits her sense of normal then everything is fine.
I should also mention that she didn't move herself to listen to my lungs, look in my ears. The normal.....check the patient over. For what she did, she could have just called and told me the lab results.

Dirty Don
03-16-2014, 04:25 AM
Hi Jaypfei, glad you found us so maybe you can get some better direction. This blog is by no means a cure-all, but it really helps, especially when you have questions or are in a panicky state over the WG...and other things...sheesh. Anyway, you do need a better more concerned Rheumy. While this doc has you on a good track right now, it's not enough and she needs to get to it or pass you on. Actually, YOU need to find another. Your numbers are still high and the symptoms are recurring, not good. You're nearer Jacksonville and the Mayo clinic if you'd like to get some specific help with WG. If you're at the Pensacola base, that's a long drive so maybe have your current doc consult with someone at Mayo, but if closer...it'd be worth your time and effort to go there & get help. It appears more docs nowadays are recognizing WG and learning how to deal with it, but not all are experienced enough yet to do anything other than read out of a book...sorry...that's what happens with 'strange diseases'! Ha! Best to you, get some better help soon!

Deborah T
03-16-2014, 04:34 AM
Hello Jay -
So sorry to hear what you are going through. :sad: Not all rheumatologists are "into" WG. I recommend talking to your primary or pulmonologist for a different Rheum for "2nd opinion". Many rheumatologists have wonderful nurse practitioners or RNs in the office that can help with the "teaching" element of the disease. Many times doctors treat and nurses teach. You may benefit from an office that has a doctor or staff that have interest in WG and that will take the time to take your
concerns seriously. This is a hard dz to live with, a good doctor will understand that and work with you to educate and treat and keep you up to date on the status of your WG.

If you post where you live (city/state), perhaps some Weggies on this forum can make some Rheumatologist recommendations.

Prayers your way -
Blessings - Deborah T.

Jaypfei
03-16-2014, 04:53 AM
Thanks Don,

I've been a silent member of the forum for awhile now. Just becoming vocal now. I'm 8 miles away from Eglin Regional hospital. Yep, Jacksonville is a loooooong drive away. But maybe I can see if my Pulmonary Doc can get me a referral.
I should tell you that I am only one of two rare disease patients at this military hospital. While I'm not out beating a drum to raise awareness, my medical file/case is required study for all new residents at Eglin Regional. So in some sense I am educating new doctors.

Dirty Don
03-16-2014, 05:08 AM
I understand the 'special' treatment attention you're getting...wish everyone on here could be as fortunate. I'm considered a 'poster boy' at Mayo here in PHX due to my 'amazing' non damaged recovery of badly damaged lungs. My pulmy just loves me cuz he has to deal with so many who haven't recovered as well or as quickly...to the point of maintenance that is. Enjoy it for what it is and if it gets you any bennies, take them! Glad you're becoming more vocal now...we need input from all peoples! Best to you!

windchime
03-16-2014, 05:20 AM
Welcome Jaypfei. Sorry to hear you are going through such a hard time. Are you currently retired? Unless your insurance requires it you don't need a referral to Mayo. You can just call and make an appointment. You can ask your doc, any of them, for a copy of your labs. You can also call her office and ask for a copy of all your records which would be handy to have if you are going to another doc. She may charge for them, but in the long run it's worth it. I just paid $29 to get copies from my endo, none of the others charge me. Now I get copies from my docs after each visit, of course I have to give them time about a week or so before I request them. My pulm and endo both give me copies of my labs without having to ask for them at the time of my visits. I suggest you get copies of all your doc records for the last two years to follow the wegs. It will come in handy at some point, trust me.

I was diagnosed in 1972 at Madigan Army Hospital so you can only imagine what kind of an anomaly I was back then. I did get good care and ended up being sent to Wilford Hall in San Antonio for further evals. They finally decided to discharge me. I too was included on all the rounds in the hospital and discussed at many a meeting.

In the meantime you do need a good Rheumy. Can you share what your initial treatment plan was? How many RTX treatments etc. Also what areas are involved? It sounds like sinus, ears and lungs. As well as your joints. What exactly is your pulmonary doc doing for you? Were you ever actually in remission? It doesn't sound like it. Sorry for all the questions but they will help to determine what direction to head you in. Again sorry you have to be here, but it's the best place to be under the circumstances.

renidrag
03-16-2014, 06:30 AM
Sounds to me like you have a great relationship with your Pulmy, perhaps he/she would be open to conversing with Jacksonville or Mayo. I am very happy with my Pulmonologist and he was diagnosing doctor also. i still see him, mine presented in lungs, and he is terrific. That being said most of us have a Rheumy, ENT some have Opthalmologists and whatever else we need. Strongly suggest finding a specialist. Gee I sound like Sangye.
Dale

Jaypfei
03-16-2014, 06:48 AM
Hi Cindy,

My hubby is retired AF. I posted some where on here. New Wegs. I was hospitalized Feb 2012 with lesions on my lungs horrific ear pain and bleeding from nose. The disease first presented as a resistant ear infection. But kept getting the typical run around. Lung biopsy, mastoidectomy both showed granuloma. That with anca, I was dx Wegener's GPA. First treatment was Cytoxen, pred and Bactrim. Was on Cytoxen until CT scans showed no lesions. May 2012. Stayed on Pred till early Aug. 2012. Flared in Oct. 2012. Horrific ear pain, bloody/crusty nose. Weird indent in bridge of nose. Yes, saddle nose. Nasal/sinus biopsy showed granuloma. Start 60mg prednisone. See rheumy for first time Dec 2012. Starts me on Rituxan once week for 4 weeks. Inflammation levels still high so I go in for three days straight for 70 mg somederol infusions. Feb 2013 she begins me on Imuran and methotrexate. Imuran is 50mg twice daily. Methotrexate 1cc once a week. Mind you I'm still taking prednisone. Suppose to step down on prednisone and Imuran will replace it. By mid March 2013 I'm having liver distress. Taken off Imuran and methotrexate. Put on Cellcept for approx two weeks before I get a call and told to stop taking it. By this time I'm so pumped full of drugs I'm miserable. Rheumy starts stepping me down off prednisone and off by Apr 2013. Started on Forteo 20mmg daily injection for osteoporosis. Bone density test showed significant bone loss. Of course taking 1000mg Oscal prior to dx
When I stepped down from pred, I immediately started having joint pain. At this point I'm only seeing rheumy once every two months. And that's my schedule with her.
June 2013 I have BAHA surgery, no problem. By August 2013 I have crusty nose and sent for 3 days infusion of somederol. ...again. Then I start 60 mg of pred and maintenance doses of rituxin. Stepped down from pred and off early Nov 2013. Rituxan again in Dec 26 and second dose Jan 9. All I am taking currently is Bactrim 3 times a week.
Apologize for the length, but that's as condensed as I can get.

Jaypfei
03-16-2014, 07:01 AM
That's most likely what I will do if my rheumy gives me the brush off in May. Or if I get sick before then.

windchime
03-16-2014, 07:20 AM
Wow, you've done the round of meds that's for sure. At this point my suggestion would be to definitely get to an academic center such as Mayo or Cleveland clinic. I assume you're on Tri-Care for insurance. I'm not sure how it works for referrals. If your doctors are open to consulting with docs from the vasculitis foundation that would work too. However, your rheumy doesn't sound like she would do that. I would think with where you're at your rheumy would want to see you once a month at least. It sounds as if she can't figure it out so she is washing her hands of the situation. So I like others would suggest a new rheumy. Sounds as if you definitely still have a lot of inflammation going on. Are you taking Ibuprofen or any over the counter meds for it? They might help a little to knock out the worst.

I'm getting ready to do a second opinion at Mayo in Jax myself. However, I'm going to request an appt with a pulmonologist and a rheumatologist. They can schedule them both on the same day. I'm about 3 hours away and plan to go up the night before and spend the night then drive home the next day. You're a little further and might have to spend two nights, but I think it would be worth it in your case. It will take a month or two before you can get in at Mayo, I would make the appt now and cancel if you need to. Good luck whatever you decide to do and please keep us posted. Hugs to you. :hug2:

Dirty Don
03-16-2014, 09:15 AM
It will take a month or two before you can get in at Mayo, I would make the appt now and cancel if you need to.

In addition, if you really want to get into Mayo earlier than the appt they give you, call everyday...someone always cancels with them...was just about 2 months out on appt they initially gave me, kept calling, got in in 3 weeks...having them on your side along w/good locals docs is your best bet for sure.

woz
03-16-2014, 04:20 PM
Hi Jaypfei, a ANCA reading of 148, is fine as long as your CRP (infection) is low, I would still get a second opinion, elsewhere, if possible, because not all doctors are mistake free here's a piece out of The Churg-Strauss Syndrome Association, that might help.

Discussion among members of the CSSISG about ANCA test
To add to the confusion: the literature shows that some vasculitis patients have continuously positive ANCA without disease activity, while others test negative on ANCA even when they do have active disease.

Now, what does that mean for us, should we pay attention to it, or not?
Most of our doctors check eosinophil level, CRP, sed.rate etc. very regularly, and ANCA level seldom, or not at all.
What vasculitis specialists seem to agree on is that the ANCA test could provide valuable supportive evidence for a vasculitis, meaning that being tested ANCA positive could be helpful, if there is still doubt, in diagnosing an autoimmune vasculitis.
When it comes to the ANCA test being useful in monitoring disease activity there seems to be some controversy, and the specialists are less certain. A significant rise in ANCA may proceed a relapse, but this is not always the case, so a persistence of or a rise in ANCA is not a definite warning signal for disease activity!

It seems reasonable to say that the ANCA test - for the time being - should at best serve as a complementary piece of information to a thorough clinical assessment, evidence of disease activity, and the measurement of inflammatory markers, such as CRP.

Regards Woz...

Alysia
03-16-2014, 05:38 PM
. I'm considered a 'poster boy' at Mayo here in PHX due to my 'amazing' non damaged recovery of badly damaged lungs. My pulmy just loves me

same here :wub:

Jaypfei
04-28-2014, 11:06 AM
An update on my rheumy. I received a letter from her yesterday, April 26, stating that she valued me as a patient, and that my appt on May 21 would be my last as she is leaving the medical group that I currently go to off base. She also enclosed a list of other rheumatologist from Panama City to Pensacola.
I'll be seeing my pulmonary Dr on base this Wednesday, and give him a copy of the letter so he can help me with a referral. Don't you just love having to start from square one? I'm going to look at it as a blessing, especially after my last appt. Maybe a new Dr will actually listen to me and not keep me on a roller coaster of treatment and taking me off drugs too soon.

windchime
04-28-2014, 02:17 PM
An update on my rheumy. I received a letter from her yesterday, April 26, stating that she valued me as a patient, and that my appt on May 21 would be my last as she is leaving the medical group that I currently go to off base. She also enclosed a list of other rheumatologist from Panama City to Pensacola.
I'll be seeing my pulmonary Dr on base this Wednesday, and give him a copy of the letter so he can help me with a referral. Don't you just love having to start from square one? I'm going to look at it as a blessing, especially after my last appt. Maybe a new Dr will actually listen to me and not keep me on a roller coaster of treatment and taking me off drugs too soon.

Must be that time of year. I got a letter last week from my PCP saying she was leaving the practice and changing specialities to Infectious Disease. I just found her a year and half ago and I love her. I hate the thought of searching for a new one especially right now with so much going on with me. Good luck to you in finding a new qualified and interested Rheumy. :unsure:

Jaypfei
04-28-2014, 03:05 PM
Oh Cindy, I'm so sorry you're in the same situation. I started looking up the list of Drs that I was sent, and the one that has the best reviews doesn't have experience with vasculitis/Wegener's. The three that do have experience are old as Moses and not the best reviews. I don't want to see someone that will likely retire a year or two after I see them. I can't image any of us would. Hopefully Pulmonary Dr can help sort this out.
Wishing you luck as well in your search for a new doctor.

drz
04-28-2014, 03:32 PM
Must be that time of year. I got a letter last week from my PCP saying she was leaving the practice and changing specialities to Infectious Disease. I just found her a year and half ago and I love her. I hate the thought of searching for a new one especially right now with so much going on with me. Good luck to you in finding a new qualified and interested Rheumy. :unsure:

I find replacing physicians stressful but often necessary as when you have several different specialists some one is often moving on or some times changes in insurance plans require it. I have started trying to build up dual coverage in some areas when i can so I will have a back up and won't be feeling bereft and lost when one leaves. I just lost my endocrinologist after several years and worried about finding one that would be willing to do all the paperwork necessary to get diabetic supplies when on Medicare. Over the last five years I have had to replace one physician a year from loss plus a couple others I had to fire for incompetence or lack of trust. I almost fired my pharmacy today but decided to give them another chance after they fixed their screw ups. I will just need to watch them closer to make sure they are doing things right and in a timely manner. They had done well until this year when they went through some growing pains from taking on new staff to gear up for another pharmacy closing down and hope they got bugs out now. Many of the problems seem from their web site and not actually pharmacy staff.

Maintaining a good health care team is a necessary part of maintaining your health and often takes a lot of work. Some times it is difficult to know when to end a relationship and when to to try fix it or improve it to make it work better.

Jaypfei
05-02-2014, 08:37 AM
Well I saw my pulmonary dr today. Was supposed to see him yesterday, but the weather and all the rain, they closed the base. Rescheduled for this afternoon. I gave him a copy of the letter that rheumy sent. We talked for a bit. Ideally the Mayo Jacksonville would be his choice but said military won't send me there. He's got some ideas on who he wants me to see in Pensacola. I'll give it a go. He also mentioned Ochsner clinic New Orleans? I'll have to look it up.
He did another breathing test as I mentioned some issues that I've been having. Namely shortness of breath when out and about and even while talking. Lung CT scan next week. A referral for a new ENT because I've also had some really strange intermittent throbbing in ears. Anyone else ever experience that? As well as a referral for ophthalmologist. About 2 weeks ago had an incident where I had a prism like obstruction in field of vision of left eye. The periphral vision was strobing. Lasted about 20 minutes and then headache and tired. The vision in eye is off since incident.
Anyway, that's where I stand at the moment.
All the rain this way has left a lake on the side and back of yard. I swear I saw a periscope come up out there! Lol. Hopefully everyone affected by the weather is okay?

Jaypfei
05-02-2014, 08:53 AM
Forgot to mention that as I was walking from parking lot to hospital I was walking along side another woman and she did a double take when looking at me . She lifted her hair and she had a brown BAHA. It was really kind of neat. We both laughed and she said that I was the first person that she'd ever seen or met with one.

Alysia
05-02-2014, 04:52 PM
thanks for sharing. it seems much better now. I am glad that you are going to do all the tests and appt needed. :hug1:

drz
05-03-2014, 02:05 AM
Hope you get eyes checked soon as vision loss can happen in day or two if there is a serious problem from a Wegs attack or other causes.

kelly anne
05-03-2014, 10:48 PM
My doc gives me a copy of my labs when I leave each appointment and the results are also available to me on the University of Miami myuhealth website.