Low lymphocytes, should I worry?

[Angrybird]

Hi everyone, I have had my GP on the phone today (do they ever have a day off??) and she has seen my bloods results from the 26th and my lymphocytes are now low at 0.57, I don't know if this is a little low or a lot.... They were considered normal on my results from the 20th so this has happened is a short time span. I have been re-started on Azathioprine and went up to 50mg on the 25th, I really don't think it would be able to affect things that quickly though? I am to call my IBD nurse first thing in the morning to confirm that I can continue with the Aza. THIS is where I am now a bit panicky, I developed neutropenia last time on this drug and now this today is making me think I will have to stop it again I really don't want to have to do this as this is my only chance of avoiding Humira. Am I perhaps getting wound up over nothing? Any info/advice would be appreciated.

 

[littlemissh]

My consultant says 0.5 or above is fine though needs monitoring .

 

[robbo87]

I had to stop azathioprine because of low lymphocytes. I cant remember the exact levels, but i was taking 150mg which was needed to keep things at bay.. but that was to high for my lymphocyte count to stay high enough. my lymphocyte count improved as i lowered to 50mg but that wasn't enough to stop my symptoms.so i ended up on infliximab. I'm not sure how quickly it can affect your blood but it sounds to me like its probably something to do with the aza, although im no doctor so i would see what your IDB nurse says. they may see how things go without the aza for a short while to see if the count improves and maybe put you on pred in the meantime to keep you symptom free.

 

[carolhew]

AB, sorry to hear about you lab results. Try not to worry to much until you talk with the IBD nurse and can get more information! I know easier said than done! :hug:

 

[Angrybird]

Thanks chappies, feeling a little calmer now I must try to not allow what happened before to cloud my thinking on what is happening now.

Robbo - was on 200mg last time which is quite different to my current dose so hopefully this is just a little glitch, if things are ok the plan is to have me on a max of 125mg - surely not a high enough dose to cause problems.........

Will let you know what the nurse says.

 

[Manzyb]

Hi AB! I don't really have any information for you about this, but I wanted to say try not to worry too much!

I tried 6-MP and Imuran both and had really bad reactions to the both of them. I got pancreatitis and something with my liver counts got really bad. Both of them ended up putting me in the emergency room with some pretty severe symptoms. I don't remember the dosage of either, I was only able to take them for a short time.

I hope things work out well for you with the Aza. Humira isn't bad though! Why do you want to avoid it so bad? I'm just curious!! Not making any judgment, just so you know I had a good experience with Humira. It worked fairly well, while it worked.

 

[Angrybird]

Hi Manzyb, I suppose it's because I feel I am running out of meds to try, I want Humira to be something to have left in my arsenal in case of problems a few yrs down the line. I was also concerned that I wouldn't be allowed to have children with it, were you on it when Sadie came along? (btw she is still one of the most GORGEOUS babies I have ever seen ) Also how are you doing at the moment?

 

[littlemissh]

I know exactly where you are coming from angry bird, I felt that the biologics should be kept back as a last resort. It does worry me that I am already going on it only 18 months after diagnosis. But I am at the point where I don't care now.
Hopefully it is a blip particularly as you were ok on a much higher dose then. Are you a similar weight to then? They (counts)have got a habit of yo yo-ing, and docs fret more about dropping neutrophil counts.
Fingers crossed your next check will be better.

 

[DustyKat]

Hey AB,

Perhaps you could discuss with the doctor about using Allopurinol in combination with the Aza as a means of keeping your Aza dose lower if the higher doses become problematic.

Allopurinol blocks one of the pathways that inactivates Aza, so adding the Allopurinol means the Aza needs to be reduced to about a quarter of the original. If you were on 100mg of Aza then you would need to reduce the dose to 25mg. I hope that makes sense!

Dusty. xxx

 

[Angrybird]

LM - I would say I am about 24lbs lighter than I was the first time round so perhaps this is playing a part in things....

Dusty - thanks for the info! I will ask the nurse about it when she calls back

 

[Angrybird]

FYI, have spoken to the nurse (although not the one I usually deal with) and she said the level is fine and I can stay on the Aza...YAY!! So chuffed about this although I really wish I didn't have to deal with this particular nurse, she made me feel a bit of an idiot for calling in the first place. At the end of the day I only called because my GP TOLD me to.

The last time she said my levels were not much to worry about (therefore making me feel like my issues were all in my head) I ended up needing an op for a stricture!! I think she is the type of person who only looks at the numbers and not at the person and how they are feeling.

 

[Artificial]

yay! that's good news!

My IBD nurse is great but there have been a few times when I've been made to feel a bit stupid for querying my blood results to! x

 

[littlemissh]

Sometimes you can't win. What's the betting you've been in trouble for not seeing someone soon enough!
Glad all ok. Are you still on weekly tests?

 

[Angrybird]

Yeah which is a complete pain in the bum biggrin If I go the the GP it means taking 2hrs away from work (travel and waiting time included in this) every week and I am trying not to take too much time away due to how busy we are. I therefore have to remind the nurse at the GP's to post blood forms to be so I can then go to the hospital blood test place after work which means traffic and gettng home late.

 

[Manzyb]

That is great news for you!! I'm glad you can continue to take it

As for the Humira. I totally understnad what you are saying. I was upset because, at the time, when I started taking it it was my last option. Now of course I've had my surgery and am going on Tysabri. It is all scary!!!

I was on Humira while I was pregnant. I took it the entire time and had one healthy little baby girl!!! She hasn't hardly even gotten a cold in the almost 10 months she's been alive. I'm blessed to have such a healthy baby.

Thank you for the compliment on her!! She is just an amazing little baby!! I wish I could post a video on here of her in the bath tub. She is absolutely hilarious. Or I have one where she is laughing really hard at the dog Anyway, I am so lucky to have had such a healthy and happy baby!

 

[rob101]

Hi Angry bird , which nurse is that ? just so I can try and avoid her .She sounds pretty horrible ..

 

[Angrybird]

Hi Rob, it is Sr Alison Nightingale at Addenbrooke's Hospital. Her colleague Kathy is really nice though so I am hoping I see her when I have my appt on the 13th Feb.

 

[carolhew]

Great news! Just remember to try and not worry but, always listen to your inner voice! It is usually right on! To hell with the evil nurses of the world!

 

[rob101]

Fingers crossed you get Kathy on your next appointment ,hope it all go's well for you . I have to go on the 21st for a colonoscopy...... urgh ! cant wait for that prepto start bubbling away.

 

[Angrybird]

Oh that sucks Let us know how you get on.