PDA

View Full Version : Blood Counts



rkm001
05-27-2009, 02:11 AM
Took Mother to dyalysis today. Her rbc is 3.40, creat 5.73, hemotocrit 33.6, hemoglobin 10.7. The creat has been consistant since she began dyalysis. The doc was hopeful for some recovery, but i am getting discouraged. I have noticed her short term memory is not very good, I assume maybe because of her blood counts? ( any input about this is greatly appreciated) She cannot hardly walk and complains her feet and stomach hurt. Also, she is complaining again about the head and ears bothering her. Giving Tylenol for pain, seems to help some.

Sangye
05-27-2009, 04:42 AM
Tell me again (I lost track)-- is she seeing a Wegs specialist yet?

What meds is she on?

If she's on pred, she should be taking a prescription-strength acid blocker. Pred will destroy the stomach lining fast. Very painful.

rkm001
05-27-2009, 05:40 AM
She is on 30mg pred now, 25mg Cytoxan, prilosec, cumadin, vitamins. When I lay her down she moans and when ask why she says my stomach hurts. We saw a specialist last Thursday, but he did not have time to view her records. He ask for 2 weeks to come up with a plan for her, next appt. June 5th.
The memory loss is becoming more prevalent as with her knowledge of bowels. I want her to be again on her own, I believe this is getting more far fetched. She needs 24 hr care and unfortunately I cannot stay with her. Im afraid going to a nursing home will only diminish any or all reality of a recovery.

andrew
05-27-2009, 06:04 AM
The Prilosec will be for the stomach acid issue. I'd be making a scene if I were you. Two weeks to come up with a plan is a bit of a stretch. Get an appointment with the specialist soon so you can chat to him and make it clear what's going on. Alternatively, you're fully entitled to find another specialist.

Sangye
05-27-2009, 07:30 AM
I agree with Andrew. Two weeks is too long for the shape she's in. A scene is in order.

Her pred and Cytoxan doses are not very high-- might be allowing the Wegs to be active enough to cause her pain, etc....

There are a lot of possibilities that might explain her symptoms-- Wegener's, concurrent infection, etc.... None of which will wait 2 weeks to be addressed.

rkm001
05-29-2009, 10:02 PM
Well back to the hospital we go. Mother woke up yesterday early morning with terrible stomach problems, I just decided why suffer and took her to emergency. They did a CT scan of her abdomen and found dyviticulitis, so they are giving IV antibiotics. Her wbc is down again so no more Cytoxan for awhile. Something that was mentioned was her Sed Rate is high, if anyone knows more about this let me know.The best thing was they gave her IV pred of 125mg and dilotta for pain. She slept like a baby all day. I requested an ENT doc look at her and make sure this was ok and it was, but now i feel better. Mother is so miserable. She is so weak walking is almost dimished, eating is very hard, and I hope my complaints to the docs will get some results now.
By the way, her PC doc actually came to see us at the hospital. I had not talked to him since she was diagnosed in late March. Probably because of me mentioning to his staff the misdiagnosis.

Doug
05-30-2009, 12:32 AM
Erythrocyte sedimentation rate - Wikipedia, the free encyclopedia (http://en.wikipedia.org/wiki/Erythrocyte_sedimentation_rate)

http://www.nlm.nih.gov/medlineplus/ency/article/003643.htm

http://www.mayoclinic.com/health/diverticulitis-diet/HQ00548

The top one will take you to a description of the Sed rate measurement. It mentions "normal" rates at different ages, by sex.
The second one will take you to a full explanation of wbc.
The third one is a bonus, I guess, and is what the Mayo Clinic says about diverticulitis; I bet Sangye can add a lot to this one, too.

Your mother is very fortunate to have you following up and through on her on-going battle. Bless you!

rkm001
05-30-2009, 07:50 AM
Thanks Doug for the attached websites. Mom had an upper GI this morning which verified a large ulcer. We believe this added to her not wanting to eat. They are targeting this with an initial dose of something and then a more powerful acid blocker. The kidney docs have started to reduce her pred intake, down to 10mg daily. Hoping to start the Cytoxzn back up soon.

Doug
05-30-2009, 02:51 PM
Glad I was able to help you out. Now, let's hope and pray the ulcer can be put in order so she can concentrate on getting the WG in control. Whew! That's a big order, but you know, at least, what's she's up against now. An interesting observation on the doctor showing up after the mention of misdiagnosis! I've noticed doctors don't walk on water yet they are never wrong! Ha! That's just some of them. :)

germaine
05-31-2009, 09:51 AM
For what it's worth, and I may be a healthier case than your mom, I am on 150 mg procytox, presently on 20 mg pred and going down, 160 grams of sulfatrim, 25 gms hydrosclorothiazide, (high blood pressure) ranitidine 2twice aday at 150 mg, plus 1000 units calcium and 200 units Vitamin D. I know the doctor seems to calculate body weight to determine dosage. I can't let pride get in the way of someones health so I will bashfully admit I weigh approx 175 lbs.

Sangye
05-31-2009, 10:16 AM
So glad your mom got her GI problems addressed. No wonder she was in pain and wouldn't eat.

A sed rate will be elevated in the presence of any inflammation. Certainly would be higher with a stomach ulcer and/or diverticulitis. As they treat those, it should go down within a few days. If not, it would indicate an inflammatory process elsewhere, and Wegs would be high on that list.

Doug
06-01-2009, 11:13 AM
For what it's worth, and I may be a healthier case than your mom, I am on 150 mg procytox, presently on 20 mg pred and going down, 160 grams of sulfatrim, 25 gms hydrosclorothiazide, (high blood pressure) ranitidine 2twice aday at 150 mg, plus 1000 units calcium and 200 units Vitamin D. I know the doctor seems to calculate body weight to determine dosage. I can't let pride get in the way of someones health so I will bashfully admit I weigh approx 175 lbs.


Haw! My doctors politely stated my weight in SI values! Which would you rather be: 100kg or 220 lbs.? I guarantee I definitely prefer SI now! But you are right. For maximum efficacy of drugs, bite yor lip, uncinch your belt (and the top button if necessary!), and accept your weight in whatever unit of measure your doctor prefers. Your health depends on it. Maybe even your long term surviveability. :D:eek::cool::)

rkm001
06-02-2009, 08:33 PM
You were right! The prednisone has thinned the lining of Mother stomach, she has a huge deep ulcer, still has colon problems with bleeding either from the ulcer or the colon. She is to unstable to perform a colonoscopy, platelets are down to 67,000. Things are not looking very good and she is asking to quit. Also, a couple of spots on the liver.

Sangye
06-02-2009, 11:43 PM
That is outrageous. Putting a patient on stomach protective drugs while on pred is standard of care. Even my worst docs knew that.

(They hadn't explained that I needed them while I was first hospitalized on 1,000 mg pred. The nurse brought them with my other drugs and said, "Every patient gets this because hospital food is so bad." I refused it for a couple days before developing horrific stomach pain. My doc found out and screamed at me in the middle of the night. Once I explained that I was never told about the necessity of them, he apologized. I nearly destroyed my stomach for good. It's never been quite right.)

What were the circumstances behind this? Did they prescribe it but she didn't take it? Was she informed about the need for it? This is serious business. You may need to take further action.

Surely these aren't Wegs specialists treating her.

Luce
06-03-2009, 02:18 AM
I take omeprazole to protect my stomach, I was given it along with my first prescription of pred while I was still in hospital. The chief pharmacist was brilliant and explained they were to prevent the pred eating my stomach lining.
However every doctor I've seen since then has questioned why I'm on the omeprazole and tried to get me off of it. They say the pred is enterically coated so I shouldnt need anything else.
I argue that I've tried not taking it and end up crippled with indigestion and acid reflux all day. They accept that but don't believe it's the medication causing it.

It annoys me that doctors don't always know the side effects of the medication they're prescribing - the pharmacist was obviously well aware of the danger and I am grateful to him.

Sangye
06-03-2009, 02:35 AM
(I've never heard of enterically-coated pred. That doesn't mean it doesn't exist, though!)

I'm always amazed at how many side effects docs don't know about. I think it's because they prescribe so many drugs, they can't keep up. Still, there are "classics" like acid-blockers with pred that no one should miss. Pharmacists have helped me tons, too.

Luce
06-03-2009, 03:54 AM
What colour pred tablets are you familiar with? The first batch I received were white and didn't mention being enterically coated, all refills I've received however have been maroon coloured and do mention the coating.
Perhaps that's why the docs are keen to get me off the omeprazole, but if I suffer from indigestion and acid reflux without it then surely the coating isn't enough on it's own?
I know I'd rather be safe than sorry!

On a side note, two weeks until I start CellCept - already have the drugs looking at me waiting to be taken, and I can't wait to get off the cyclo!

Sangye
06-03-2009, 04:06 AM
SO happy you're getting off cyclo. Cellcept is a breeze.

What dose of pred are you on? They told me the stomach danger was at higher doses-- I think above 10 mg but not sure. All my pred are white, so I guess yours probably is coated.

Cellcept gives me a little heartburn. Since none of my drugs actually damage the stomach (I'm off pred), I relieve the heartburn by drinking 2 oz of aloe vera gel 2-3 times a day (Add it to a glass of water and whisk it to dissolve. A little fruit juice is okay, if you don't like the taste). Very soothing and heals the stomach lining. Aloe vera is safe with pred.

Luce
06-03-2009, 04:12 AM
I've just switched down to 10mg of pred - I am hoping the plan is to taper me off of it completely if Cellcept works for me.
I will try stopping the omeprazole again once I come off of the cytoxan, I also think it may be helping to stop the nausea I get from time to time whilst on that.
It is possible for me to half the dose first before stopping completely so I'll try that - I don't want to be taking any more pills than is necessary but on the other hand I don't want to suffer.

Is the aloe vera gel the 98% stuff in a tube? If so my partner has used that for dry skin on his hands, I wouldn't have dreamed of diluting it and drinking it though!

Sangye
06-03-2009, 04:18 AM
Is the aloe vera gel the 98% stuff in a tube? If so my partner has used that for dry skin on his hands, I wouldn't have dreamed of diluting it and drinking it though!

You're right--that's not for drinking!! :eek:

Get a bottle at a health food store. It says you can drink it on the directions. (Ask a clerk) You can get aloe juice or gel, but the gel works better for this.

Jack
06-03-2009, 05:24 AM
There is a notice on the wall at the clinic I attend warning against the use of coated prednisolone. Not sure of the reason, but it has come up more than once during my visits so they obviously believe it to be important. :confused:

Luce
06-03-2009, 06:25 AM
Thank you for the advice Sangye - I may just try this in a few weeks time.

Jack - I'm now slightly concerned, I wonder why there is a warning about it?

Luce
06-03-2009, 06:31 AM
http://www.formulary.cht.nhs.uk/pdf,_doc_files_etc/MMC/059_Prednisolone.pdf

Ok, this goes a little way to explaining the pred issue.

Jack
06-03-2009, 07:16 AM
Good find Luce.

The clinic I was refering to is a Renal Transplant Clinic so your link explains the reason. Sounds like the non coated ones give a more controled / reliable dose.

Sangye
06-03-2009, 07:40 AM
Great find Luce! I suggest you print it out and give it to your docs ASAP. It might protect their other patients, too.

And because they're bombarded with info all day, I'd highlight the section that says, "Prescribers have written enteric-coated prednisolone in the past in the misguided belief that there are fewer gastrointestinal side effects. There is a lack of evidence that EC prednisolone is less likely to cause dyspepsia than the plain preparation. It is doubtful whether the coating prevents ulceration. It has been suggested that the lower incidence of ulceration of EC compared with plain prednisolone tablets may be due to poorer absorption from the former."

Bet it feels good to know that your symptoms have been validated! It's so upsetting that we have to even have such discussions about not being believed.

crackers
06-03-2009, 09:02 AM
i can only speak from personal experience.i have been on ec pred from day one but on one occasion the chemist gave me uncoated instead and the consequences of that were very unpleasant.so along with the omeprazole my gastro history has been ok.
john.

jola57
06-04-2009, 08:58 AM
I've been taking uncoated from the beginning but ALWAYS take esomeprazole, if I forget, by the evening I have one horrific reflux that takes ages to control.

Terri
06-04-2009, 11:12 AM
I wish I had some of that a few weeks ago when my docs upped my Prednisone from 5 mg to 60 mg and I ended up with a U.T.I. and had to be on Cipro for five days and your not supposed to take any type of antacid within 6 hrs. before or 2 hrs after. I was SOOOO miserable.
Speaking of meds.....any words of wisdom out there?
I am taking 30 mg Pred in a.m., and 20 at p.m.. The docs are changing me from 100 mgs of Imuran daily to 4x 2.5 Methotrexate weekly for 2 weeks, then 6x 2.5, then 8x 2.5 while coming down 10 mgs Prednisone every two weeks to 30 a day by the end of the month. It's so confusing.:confused:
Right now I feel like my mind and body doesn't want to be together:eek:
My mind races constantly but my body can't keep up. Does that make sense?
Take any advice I can get. Thanks.

Jack
06-04-2009, 03:56 PM
Write it all down in calendar format so that you know which combination to take. Things will improve once they get you stable! :)

You MUST take some form of protection for you digestive system. The drugs will not do it any good at all. I think most of us who have been on long term medication have developed some form of sensitivity. I have developed problems from my throat, right through to the other end! :eek:

Sangye
06-05-2009, 12:13 AM
Uh, yeah... the other end..... Well, since you brought it up (and out) I can actually tell when my Wegs is more fired up because the exit route feels fired up, too. After eating "fire-increasing" foods (from Ayurveda), like spicy foods (duh), oily foods, nuts, etc... I usually get more joint pains and leg rashes within the hour.

I agree with Jack-- you've got to take something to protect your stomach on high pred.

We all totally understand the mind racing (that's the pred) and the body not being able to keep up (that's the disease and drug drain on the body). Just remember, pred gives you the illusion of energy but is weakening the body physically. So, don't spend that energy! The mind racing gets better as you lower the pred.

There are folks on here who can give you great advice about how to taper the pred. (I didn't know better when I was tapering)

jola57
06-05-2009, 04:51 PM
Terri, defeinitely get something protecting your stomach, regular antacids do nothing for us and you need mega protection. Splitting the pred, I have read some studies that do not support splitting. There is no evidence that splitting is either more effective or gentler on the stomach but may be actualy slightly less effective. When did you start Imuran, and why the change to methotrexate and not cyclo right away, is you doc going slowly?

Terri
06-06-2009, 01:14 PM
I was mostly wondering if this regime of meds were the normal?
When I was diagnosed in 07, I started on 60 mg of Pred and 100 mg of Cytoxan. After about 9 months I had tapered to 5 mg of Pred and I think that is when I started to take Imuran.
Since around Nov.08 a new granuloma on my leg, which for some reason it always affects my right leg. The doc says better my leg then kidneys, sinus, etc..:rolleyes: A few weeks ago they raised my Pred from 5mg to 60 split 30/30
In a few more weeks I will be taking 30 daily in the a.m. only and they have me on Metotrexate instead of the Imuran. They claim it is less toxic:eek:
I remember these weird feelings from before and I know eventually they will pass. I just feel as if I could build a house even though I know that is physically impossible:D
Also, I do take 150 mg of Zantac now that I am off of Cipro.

I have some exciting news to share with you all!
Check out: Book Publishing Company | Book Publishers (http://www.authorhouse.com)
look up Eye on the Prize: author- Candace Ross
She is a local gal who happened to be my first contact when I was diagnosed and gave me some hope to go on. She has written a book and I am so proud to say I know her.
I received my book today and couldn't put it down. She is one of the reasons I have the medical help today because she was a fighter.
If you would want to e-mail her personnaly to get a signed book, I'm sure she wouldn't mind. Her address is listed with the Vasculitis Foundation under Pennsyvania contacts.

Jack
06-06-2009, 03:24 PM
There is no "normal" for Wegener's medication, it has to be adjusted to your particular circumstances, but your's sounds OK to me. :)

I think that Zantac is quite an old drug now, I used to take it , but find that Lansoprazole is much better. I also take Co-Trimoxazole (antibiotic) daily to keep the minor infections away. It works well and I have had less of the bothersome infections since starting it (about 10 years ago).

I also take a lot of other stuff that is probably not relavent to your symptoms. For instance, Ramapril keeps the blood pressure down and protects the kindeys.

jola57
06-07-2009, 10:48 AM
Terri, Candace's book looks interesting, I'm sure she has a story just like ours to tell. I'm with Jack on Zantac, its good for regular people, but for our stomachs wee need realy good protection.