Some ideas would be appreciated
 

Tonight my rheumatologist called. He says my "anemia from chronic illness" is getting worse. He's looking at bloodwork results from my last two draws. Last one being about a 2 weeks ago. I had new routine bloodwork done yesterday that he did not have yet. He said that with anemia from chronic illness he would expect the levels to stay about the same, not go up. He told me that I'm now at the level where just a little bit more means he would think I need to have tranfusions. Monday when I go in he will do a stool analysis in the office (Yuck!), order a blooddraw for my H & H (hemoglobin and hemocrit) and a urinalysis if this new bloodwork looks as bad as the others did.

He said he honestly didn't know what else to do, that if it continues he has to send me to a hematologist. What would a hematologist look for?

Other than blood lost thru the stool or urine, what other way does the body lose blood? (I've had a hysterectomy.)

Billye

You might not be making the cells in the first place, or the ones you are making aren't
the perfect specimens that they should be. That flaw could be from lack of fuel(food)
interference at the level of the bone marrow, renin isn't working, or even the spleen or liver is breaking down the good ones. this is just the ones I can think of. There are more.Hematologists read all that at a very much higher level. Do go. Soon. It is worth looking at. Hugs to you. Bon

Well, Billye, the one thing a Hematologist ...
 

KNOWS about is what all is in that blood stuff!

I had lots and lots of choices for oconologists w/my cancer f/y treatments and well...I didn't pick the 'area' star regarding ocon issues...the Ocon I chose had a hema background...IN you got it? Immune issues...A solid background mind you...w/creds at places that one want's such docs to have them from! I'd 'interviewed' docs about this aspect and she [the ocon/hema] did NOT bat an eye about the CIDP [hey, knew enuf about it to ask the right questions about it?] and thyroid issues and was the one who got me to the right endo to deal with my bone loss issues [osteoporsis onset fast?] I had a rocky start w/this doc as the NP thought she knew more than I did about prescribing some auxiliary meds to offset s/e's from the post-cancer meds...[that caused the osteo] but once, she knew that I KNEW what all was going on, and wasn't gonna be a doormat..we are getting along fine....Thing is 'hitting' the communication issues at just the rite time...Sometimes impossible..other times you get lucky..I got lucky again..BUT I was persistent?! That this one doc says "I DUNNO?" and see X Y or ZZ? means that that DOC knows it's NOT in his comfort zone and wants INPUT...That means that doc want's help and from the best they know of...
I'd say go for it? My own first reaction was DANG! ANOTHER DOC for the 'list'?!!! Like I just need one more? But Checking out that practice...I was satisfied...the docs were active in research and what seemed to b e PROactive practice...Didn't just hang up a shingle and pretend...they were really 'into' it.. Soo, the Ocon/Hema referred me to the Endo who, I hope is getting me on the 'road' to better stuffs [IF ONLY I can chomp down all those calcium thingies?]

INteresting, the anemia issue? I'd always been anemic until I had mono a loong time ago...since then I've not been..ever? Lo at times [know now because of the constant blood testings] I'm now taking the pre-natal vites to keep the B-6 goblin at bay, but, at the same time I'm getting extra iron in asorbable types...Sooo, what could be a new issue? I sure hope not...But worth a consideration for you maybe?

Back to the hematologist parts of your concerns...heck, what's ONE more doc at this point? I really FEEL for my GP at this point, the specialists aren't all talking to the GP. Actually I see the GP less than all the specs....So if issues happen..I really don't know which 'Ghostbuster' to call? Scary prospects... HUGS and all for sure - j

I agree j
 

I'm grateful that my rheumie is BIG enough to let me know that he isn't comfortable with where things are going and I'll CERTAINLY agree to the hematologist if he thinks I need it. We'll know for sure Monday when he gets the new bloodwork. He wants to know if it is a lab fluke first. He is one of those young fellows that you just want to hug and say "don't worry,..it'll be o.k." because he is so concerned about what is happening to me. He says he likes me as a patient because I'm an "interesting" one. Not sure if that's a compliment or not and I really wish I wasn't interesting.

But I'm still not sure what the hematologist would be looking for unless it is malasorption. And how does he tell that? I thought that would be in the field of the Gastro doctor.

It just seems as if I'm falling all to pieces in such a short time. Will there be dust left of me when this is over? :cool:

Thanks Bonnie and Dahlek. I learned some things from both of you.
Billye

Well Billye, I guess I am probably not the only one a little overwhelmed with all that goes on. I am sorry about this. I am grateful however, that you have a doctor who is on top of things and is willing to refer you on to someone who will seek out the source of your anemia.

There are a lot of reasons that you could be anemic, other than what we normally think of as blood loss. There can be a decrease in the life of red cells because of a defiency in iron metabolism (got to have iron to make new RBC) or in the body's resistance to the hormone that prompts the bone marrow to make more.

There can be damage to red blood cells (which reduces their numbers) when they pass through tissues that are injured by the disease process itself. The red blood cells can be destroyed prematurely, or anemia could be caused by an infection. These are just a few of the ways that anemia could be caused. There are others. My red blood cells, at one time, were not living as long as they should.

The Hematologist's job is to seek out the source/reason and treat or recommend treatment for this. If your doc says go see one, hang in there and go.

If you do have to go, I don't know if you would plan to see someone in your own area, or if you would like to see someone just across from your Neurologist, but if this is the case, I will email a name and number to you. You will absolutely love her.

Take care,
Cathie

Thanks Cathie
 

Thanks for the email and doctor's name. It would be good to have one that is close to my network of doctors. Well I learned a few more things from you. I've done some googling and have some other ideas. I always like to know as much as possible when I'm seeing a different type of doctor and this will be the first time I have to see a hematologist (if that happens).

For some reason I have a sneaking suspicion that the Nexium I've been taking since Dec. is causing all of this. I tried for three days to stop taking the Indomethacin so that I could stop taking the Nexium. But the pain got so bad I had to start taking it again. I'm asking for a new anti-inflammatory when I see the doctor. I'd rather have the risks associated with the cox-2 ones than have all of this happen. I think it could be causing the toenails to fall off, the neuropathy to be worse, the blood problems, the vitamin D shortage, etc. In short, causing my body to die because it's not getting the right vitamins.

Billye

methotrexate?
 

This drug can cause anemia.

Indocin can cause bleeds from the GI tract, many silent.

Long term acid blocking drugs reduce iron absorption.

Low copper levels cause anemia.

Kidney issues.

I hope the new doctor finds your cause! You might find it with the occult stool test.:hug:

Mrs. D
 

For Mrs. D and anyone I've missed thanking. Many thanks now. Mrs. D, I'm writing this list down because my rheumie just out and out states he doesn't know what is going on. And he doesn't mind me asking questions. He doesn't agree with me a lot of the time. But he's willing to read, learn and be educated with things he's not had time to catch up on. We started backing off on the methotrexate and look where I am now with the inflammation. Not good at all.

Anyway, thanks all. I'll see him on Monday. We'll see what the latest is on bloodwork. Have a great weekend!

Billye

Let us know what transpires. Hopefully, it will be something simple to take care of. I admire him for saying he doesn't know what is going on... I would a lot rather hear an honest statement like that.

Cathie

I sure hope you don't end up with
 

injectable iron. These injections are very painful to endure.

So if possible exhaust any other solutions before accepting that.

There is a movement now to use Procrit for the elderly who have simple anemia.
This is still controversial...and very expensive, but it works.
If it works too well, then there is risk of thickening the blood and stroke.

Here is an explanation:
http://www.webmd.com/healthy-aging/n...ed-to-declines

However, just recently it was suggested to only use low doses, in the elderly.
Another product is Aranesp (very similar and longer acting). Very expensive also.

This is the drug typically used in "doping" in the Olympics, and the Tour de France BTW.

EPO levels
 

John has used Procrit in the past for his anemia. Depending on the what's been diagnosed will depend on whether or not medicare/insurance pays for it. Medicare usually will authorize it if your Hemaglobin (HGB) is less than 12. This is because there's an increase risk of stroke when you continue to use it when your HGB is above 12. This mostly applies to cancer patients.

Even though procrit is not considered an approved "treatment" for John's aplastic anemia, it has been known to help those whose "natural" levels of EPO produced by the kidneys is less than 200 in the presence of anemia. The normal EPO range is very low....I think 4 -19. John's was only 99. So even though it is considered "high" he did use procrit and it did work to get him transfusion independent. People with anemia can have EPO levels as high as 1000.

It would be a good idea for your doc to check your EPO level. This is a blood serum test. It can be part of the work-up the hematologist does. You may have to ask to have this run. If they have not checked your iron, B12, Folate, B6 and copper levels, they should do that also. Rule out the easy stuff first.

Wishing you best.....Marlene

Great info
 

Thank you both for all the info. My Hemoglobin is 9.6 right now, so it looks like I would be eligible if that's what is necessary. I'm anxiously awaiting the Monday doctor's visit. But we will only be addressing the tip of the iceberg I'm afraid. There are just so many things to be ruled out and checked. I feel rather anxious, depressed and frightened. Naturally this has flared the neuropathy.

Anyway, thanks for all the info. I'm printing this out for my rheumatologist.

Billye

Plan of action
 

I saw the rheumie today. My new bloodwork was no better. His thinking is that the flare of the rheumatoid arthritis/spondylarthropathy/sjogren's and whatever the heck the rest of the stuff is, is causing my anemia. He has raised my methotrexate back to the level that it was when I was at Mayo, 20 mg.

If I'm not feeling better in two weeks, he's going to put me on a daily dose of 7.5 mg. of prednisone for a few months to bring the inflammation down. But we are both hoping that the methotrexate will bring it down. I am just in a lot of pain. All the joints,.. but primarily the sacro/sacroilliac joint, hip area. The swelling is causing me a lot of pain too in my ankles. And the neuropathy is out of sight!!

If the bloodwork doesn't come down with the inflammation relief in 4 weeks, then he is sending me to a hematologist and will get another rheumatology opinion. I can tell he's frustrated. He says he has me on methotrexate and Humira which European studies have said for years is the best for my diseases. But then I'm getting no better, only worse. The prednisone is not good because of my bones but he says the inflammation isn't good either. Kind of a d*mned if you don't and a d*mned if you do situation.

Anyway, that's the plan.

EDIT: OOps! quick change. The testwork he thought he was looking at just came in this afternoon. Hemo. and Hemocrit is dangerously low. He's hospitalizing me and giving me blood. I'll know more in a day or two. And....I'VE GOT MY LAPTOP for when I can use it.

Billye

Oh my, Billye:

Nothing much I can say except send warm hugs and wishes that you feel better soon.

Thank goodness you can take your laptop with you.

Take care hon.

Melody

Billye, yes it's overwhelming at times....
 

but you are getting good care, be grateful for that!
Others aren't so lucky as you know.

Only thing about it all is DURN! Hospital....isn't that were SICK people are? The kinds who 'share'? Maybe that can get you some useful home helps...infusions and nurse aide...far cheaper than a hospital and not so many SICK people...not to mention that it's HOME!

Get out SOON! Get Better SOON! and Take Care! - j

:hug::hug::hug::hug:

Can't do that
 

I was told that they are no longer allowed to give whole blood products in the office. He told me I'd have to be hospitalized to do this. And he's calling in a gastro and a hematologist to take a look at me. It's not just low, it's dangerously low. He really wanted to start it today, but I put it off until tomorrow because I could not get ready in time. Husband wasn't even home. I'll just have to take my chances with things. I've asked for a private room. The room charges are the only things we'll be elegible to pay. We've gone over the maximum out of pocket expenses this year already. Insurance is paying 100% of everything allowable. Just cross your fingers I don't catch anything. I'll make sure that anyone checking me washes their hands.

There are always chances that the home help and aides will spread the germs anyway.

Billye

Bring some of those hand sanitizer gel thingees.

They come in very handy.

Mel

Man oh man, I am really sorry, Billye. This must be very scary for you. And you must feel terrible. I don't know how you have the energy to worry about "getting ready". I would have just called a cab and walked out the door. Please be careful until you get the blood transfusion. Hugs and kisses. I hope you feel like checking in with us.

billye, you can also request that anyone entering your room wear a face mask. it takes them no time to slip one on. better safe than sorry. since school just started...it's the beggining of so many people getting sick.

i carry a zip lock baggy with chlorox clean ups.

sending you lots of prayers and :hug:

sorry for the turn of events...
 

I sure hope your doctors get a handle on this quickly.

I am worried that you have a bleed somewhere in the GI tract.
Taking prednisone on top of that, worries me!

I am crossing fingers and toes for you!:hug:

Oh Billye... I hope and pray you will not have to take the steroids. I am really sorry to hear of all of this. I am impressed with your doctor though. So many of the Rheumatologists simply turn a blind eye, if your testing doesn't fit into the grid....

Much love,
Cathie

I hope your hospital stay is short and they get to the bottom of what is happening with you and you feel much better soon.

I'm a little late to this--
 

--been busy as a bee, with the October SAT four days away, but I add my wishes for a short hospital stay and a getting-to-the-bottom of your situation.