Lab Results

[NikkiNicole]

The results are all in from my labwork on Monday.

I'm frustrated because the basic tests don't explain how I'm feeling. White Blood Cells normal, etc. No sign of infection which is good. My Thyroid even seems to have leveled out and is functioning normally.

My CRP is climbing back up but not dramatically and my PR-3 has shot back up to where it was when this all began.

I've emailed my doctor to see if I need a medication change or what? Somethings gotta give. I can't go on like this.

[mishb]

Nikki, I'm glad you finally had your blood work done.

So you have some inflammation going on somewhere - at least this explains why you have been feeling so crap :sad:

Hopefully your doctor gets back to you quickly, so that you can enjoy 2014 and your new working arrangements.

[pberggren1]

I need to swear....bear with me please **** **** **** **** **** **** ****.....okay, that should do it. I'm so sorry sweetie you are flaring. I wish I could take it all away for you......:thumbdn:

[NikkiNicole]

Is this flaring? I don't even know anymore. I feel out of it, dizzy, nauseous, TIRED, barely hungry ... but my tests except for the CRP and PR-3 was all fine. My CRP wasn't even very high. It's supposed to be less than 0.5 and it's 1.2. So, not very high.
I don't know. I know I feel absolutely dreadful, to the point of wanting to just stay home forever and never leave my room. It's not been this bad for a LOOOOONG time. I know I've said I've felt bad but not like this.

[NikkiNicole]

I see my doctor on Thursday. I took that day off since she's an hour drive down and back. I'll come home and being in pajamas for the rest of the night ....... and all of the next day.

[mishb]

Is this flaring? I don't even know anymore. I feel out of it, dizzy, nauseous, TIRED, barely hungry ... but my tests except for the CRP and PR-3 was all fine. My CRP wasn't even very high. It's supposed to be less than 0.5 and it's 1.2. So, not very high.
I don't know. I know I feel absolutely dreadful, to the point of wanting to just stay home forever and never leave my room. It's not been this bad for a LOOOOONG time. I know I've said I've felt bad but not like this.

Yep afraid so :crying:

Have you heard back from your doctor yet? You really need to get things moving before some serious damage starts to happen.
You may not to put off the hospital much longer - I know you don't want to go,

Have you reduced your pred lately? I can't remember what you were on. My guess is that it will be increased........sorry

[NikkiNicole]

I'm not on any prednisone right now. I've been off for almost two months now. I see the doctor on Thursday afternoon and I took that day off so I can come home and be in my pajamas right away.

I don't even like driving because I feel so .... not with it!

[pberggren1]

Ya, I think so too hun. With the spiked PR3 and the way you are feeling I'd bet the farm you are flaring.

[NikkiNicole]

I just hope she can do something ... change my meds, do something. I hate feeling like my brain is scrambled.

[pberggren1]

What meds are you on now Nikki?

[NikkiNicole]

20MG of MTX every week, that's it. No Prednisone for the last two months. I've never felt normal. Or ... even something that could be called a new normal.

[pberggren1]

The trouble with Wegs is that for some the new normal is always changing. So that is what can make it so hard to really know what is going on all the time. Is it Wegs activity, is it an infection, is it this or that?......it gets very frustrating at times.

[Alysia]

maybe it is not a flare but smoldering. it means that there IS activity of WG but not acute enough to show itself in the blood results. I have it for years. the problem is that docs might neglect this state (as it was with me). mtx didnt help me. only rtx. maybe it is your time for it, Nikki.
one of the signS to WG activity is the massive bleeding of nose: "fresh" red red blood, "jumping"..... (sorry for the description). do you have some, Nikki ?

[Alysia]

**** **** **** **** **** **** ****

curious: is that the magical software of andrew, changing tough words into stars ?
more curious: what were the original words ? no, don't tell....

[pberggren1]

Yes, magical software........:thumbsup: I think you know the words.

[windchime]

Aw Nikki hate to hear this, but with some different treatment you should be feeling better soon.. It seems like you were weaned to a maintenance dose very fast in comparison to others on here. Maybe being on it longer or changing to a different tx will help. Hang in there sweetie it WILL get better. :hug1:

[annekat]

No prednisone at all seems a little unusual at this stage, also. I'm only on 15mg. of MTX but on around 8 or 9mg. of pred... trying to wean to 5mg. But I've been at this for 2.5 years, a lot longer than you, Nikki, I think. If you can get by without pred, great..... but you seem to feel rotten most of the time. I hope they can give you a little more attention and figure it out.

[Debbie C]

I'm glad you have an appt. I wish it were sooner for your sake. Is there someone to drive you or at least go with ? I also think you need to be on some pred and it seems like that mtx never agreed with you anyway so maybe they need to change that also. I looked back at my monthly blood work and my PR-3 is never checked.....does anyone else have that checked all the time? Hope you feel better and can get some rest soon.

[NikkiNicole]

My doc does the ANCA/PR-3 every two months with my routine blood work. I do CBC, Liver Function, Creatinine, Urinalysis, CRP, ANCA, and a thyroid panel (as I have Hashimoto's as well). Everything but CRP and ANCA/PR-3 were within normal range. Yay my kidneys are still fine.
I am going to ask about RTX. I'm willing to go more drastic to feel betterish. I know I'll never feel 100% normal again, but to at least be able to not go "ugh ... I feel like hell" every single day. Or ... to turn my head without feeling dizzy, or nauseous. Even if I move my eyes too fast I get nauseous. I got dizzy looking at eBay the other day.
I am driving myself at this point. I may see if my husband can be off early and take me. I don't know. Everyone else is working.

[JeanMarie]

Niki,
Good luck at the doc tmo. (((((((((((Hugs)))))))))))))))

[Dirty Don]

Good luck Nik...baby steps forward...you're getting there...

[drz]

I'm glad you have an appt. I wish it were sooner for your sake. Is there someone to drive you or at least go with ? I also think you need to be on some pred and it seems like that mtx never agreed with you anyway so maybe they need to change that also. I looked back at my monthly blood work and my PR-3 is never checked.....does anyone else have that checked all the time? Hope you feel better and can get some rest soon.

My treating doctors for Wegs don't check it unless i am having some big symptoms. Mayo checks it and a lot of other things every time I see them as part of their longitudinal study on treating Wegs.

[drz]

The trouble with Wegs is that for some the new normal is always changing. So that is what can make it so hard to really know what is going on all the time. Is it Wegs activity, is it an infection, is it this or that?......it gets very frustrating at times.

GPA ---the gift that keeps on giving, right? It is like playing hide and seek with a moving target, right?

[pberggren1]

Ya, so true drz. Right now my nose and sinuses are hurting......think it might be sinus infection.

[NikkiNicole]

We just had another person go home, hacking, stuffed up, and feeling achy. He says he's been here for two days feeling like this ... and he MADE ME LUNCH TODAY! WHAT?! Why is he making lunch if he's sick?!
My nose feels like cavern again with stalagmites. It does bleed if touched. So far no random bleeding though. I feel the sinus pain in my face. And ... the telltale sore throat is starting to creep back in.
Grrrrrr

[pberggren1]

There should be a policy that sick people go home or you get to kick in in the nuts.......:laugh:

[Alysia]

GPA ---the gift that keeps on giving, right? It is like playing hide and seek with a moving target, right?

thanks, drz, I like that metaphor :cool1:
as long as we are playing, it means that we are still alive in all meannings :unsure:

Phil, you play that game too well, sorry about your sinus and nose issue :crying:
isn't it time to you to feel better ? lots of hugs and prayers on your way :hug1::hug1::hug1:
take care and update....

Nikki, good luck with you appt. insist on getting best treatment.
it is also YOUR time to feel better :hug2:

[pberggren1]

Nose feels a bit better this morning. Irrigated already now nebulizing. I'm using bactroban for the nose. Hopefully that will clear it up. I see the ENT on Wednesday and will go for labs on Monday then see the Wegs doc on the 13th.

[whatthewhat]

How did that appointment go, N?

[NikkiNicole]

Hi Guys,
Saw the doctor on Thursday afternoon. She went over all my symptoms and says she feels it's just "smoldering" right now. It's not raging out of control, and it's not under control either. I also have a major depression issue and have started taking medication for that. She is giving my antidepressants 2 more weeks to see if my physical problems are related to my depression. If I am no better, then I will do a week of prednisone to see if there is an inflammatory issue. If I feel better then I'll be switching medications.
She didn't mention RTX. She said I would be switching laterally to something that started with AZ.
The right side of my nose was inflamed but everything else felt good.
I have been given the OK to walk for 20-30 minutes at a time and move up from there. I am hoping getting out and walking helps with everything too.
Today I just feel like I might be fighting off a cold. Which would make sense since I spend most of my days surrounded by coughing and sneezing!!!!!!!!!!!!!!!

[Pete]

Med starting with AZ is likely azathioprine - aka immuran. Hope all goes well.

[NikkiNicole]

That's it!!! Is that any better than Methotrexate?
She said if I couldn't do either of those my only other option was Cytoxan? I keep thinking of how to broach the RTX thing. Should I just email her that I heard of people using it? I will if it comes to that. Right now, I want to see if it is truly my depression that's making me physically wonky.

[annekat]

I would think that if you have smoldering Wegs, you WOULD have inflammatory issues and SHOULD be on prednisone. Regardless of whether you are on antidepressants or not. Unless you have a real problem with pred. But then, I am not a doctor. It will be interesting to see if going back on pred would make you feel better. I'm sorry about the depression. That is something I have struggled with, too, though maybe not as bad as some people, but bad enough to make me feel pretty bad and to affect my life. I do know the sinking feeling of it. I hope it gets better soon.

[Dirty Don]

Good luck Nik...first of all, it's a great start and now you have a program/protocol to achieve. If not, there's still the rtx. I'd just tell my docs I've heard of 'such and such', it seems to work for many people, am I eligible for it? Do I even need it? Get her opinion of it earlier rather than later. I have anxiety/depression and am on Lexapro with Xanax for an immediate backup...they work for me well...keeps my chin off the ground some days! Oh, no side effects for me, especially the X. This will all take a bit to start feeling better, but you will soon enough...keep on keepin on!

[annekat]

That's it!!! Is that any better than Methotrexate?
She said if I couldn't do either of those my only other option was Cytoxan? I keep thinking of how to broach the RTX thing. Should I just email her that I heard of people using it? I will if it comes to that. Right now, I want to see if it is truly my depression that's making me physically wonky. Cytoxan isn't as terrible as people may say, and it works, and none of our drugs are really good for us other than suppressing the broken immune system. But I hope the AZA works... and it is milder than CTX and maybe on the level with MTX. Perhaps you would tolerate it better, I'm sure she's thinking. But I wonder, too, why she hasn't mentioned RTX. You wouldn't be out of line to bring it up. I assume you have decent insurance that would cover at least a good part of it if not all, but I don't know how that works, even for people with decent insurance.

[drz]

Azathioprine has worked well for me and I found it much easier to take than CTX. They usually give you test first to be sure your body can process it OK and then start it at a very low dosage and work up to treatment dosage. Some people also use Cellcept if they don't tolerate MTX or AZA. I think RTX has less problems than CTX but it is more expensive and doctors often like to save it as a last resort in case things gets real serious. Many people do end up usually it as a maintenance med after they have exhausted the other alternatives.

Good luck in your treatment regime.

[Alysia]

Hi Nikki, the problem with smoldering is that the docs not using the bigger meds like ctx or rtx. but smoldering can cause permanent damage, like my poor saddle nose.
as for rtx, In Israel, the law said that if a woman wants to get pregnanat in the future, she can choose rtx and refused ctx.
as for the depression: I think that you are feelling depressed because you are feeling sick and NOT that you are feeling sick because you are feeling depressed. I hate it when docs dare to argue this when there is a real illness.

[NikkiNicole]

Today starts the first day of my new/temporary "Week". I work today and tomorrow, I have a small daytime overtime shift on Wednesday but I will then be home every night for the rest of the week. I feel absolutely horrific today! I also had to take my meds and I cannot even begin to tell you how much I dreaded taking my meds because I was already feeling awful.
I did get out for a walk today, which was lovely!!!
Spoke w/ my supervisor today and I'm going to do this trade "temporarily". I'll be doing this til the end of May and then if it is helping, I'll talk to the doctor about getting a note to make a permanent move. If it's not helping, I'll go back to my regular shift because I am a training officer and we'll have some new people that need to be trained.
I am hoping that this helps because ... ultimately, I need to feel better.

[Pete]

Got my monthly labs back Friday. A couple areas of concern for me:

Creatinine is back up to 1.47 mg/dL - 0.07 above top of normal range and up from 1.30 last month. This was one of the early warning signs that I was flaring and had kidney involvement.

CRP is 10.5 mg/dL when it should be <3.0 mg/dL. Last month it was 5.3. This has been all over the place for several months. I'm wondering if what may be going on in my sensitive molar (that may need a root canal) has anything to do with this?

The red blood cell count, hemoglobin, hematocrit, and mean platelet volume continue to be just below the low point of the normal range.

The good news is that I feel good and am able to do pretty much what I want. My latest urinalysis was completely normal with no signs of blood in the urine.

I'm taking 20 mg/wk mtx, down to 10 mg/day pred. Planning to go to 9 mg/day of pred next Sunday. I had two rtx infusions in October. I would think by now that they are taking full effect.

Thoughts????

[Debbie C]

Pete,there are alot of other things they go by,my kidney dr. said to look at the BUN,calcium range and if the grf is at 60 you should be fine. It may be very well your tooth that has in infection causing haveck with your results. You should go see your dentist before your next blood work and see if there is a difference. But in the meantime I would ask your dr. just to be on the safe side. Hope everything will be fine.

[Dirty Don]

Pete, I would be extremely concerned about an infection in the mouth. Low grade stuff like your numbers can be just that. And, not to be scary, but those sore areas need to be checked for squamous cell damage...it can be just like a toothache but sitting under or near a tooth. Just sayin, not trying to add concern. My numbers sometimes get near the edge nowadays, but lately, even with my teeth extractions recently, they have remained very normal...sheesh. But, one MUST be aware of infection, even low grade ones. Best to you.

[pberggren1]

That sensitive molar could be infected and making the CRP go up, but what is your WCC at?

[Pete]

That sensitive molar could be infected and making the CRP go up, but what is your WCC at?

Phil, my labs don't show a WCC. However, if you're asking about white blood cell count, it's 8.1 k/uL - right in the middle of the normal range.

Tooth seems a little better today, so I'm hopeful about avoiding the root canal. The extraction of the wisdom tooth is definitely going to happen.

I have a call into Dr Villa Forte to discuss lab results and the tooth issues.

[stephwest]

"my PR-3 has shot back up to where it was when this all began"

Hi Nikki. I am in Europe I dont know what PR-3 test is?
I have----CRP, HB, MCV, WBC, N/PHILS, PLATLETS, CREATININE, AL.T, ALK PHOS, GGT, ESR, is it one of these under another name?
All best
Stephwest

[NikkiNicole]

The PR-3 is part of my ANCA test. Proteinase-3 levels. I will be having those all run again on March 1st

[Pete]

Talked to Dr Villa Forte a little while ago. Current labs, while outside normal limits, did not provide reason to be concerned. Fluctuations are to be expected.

Also talked about dental work. No need to pre-medicate as long as there are no signs of infection. The sensitive molar is less sensitive each day. The wisdom tooth will be history at some point.