Anyone else on Imuran/Azathioprine?

Hello guys, I havent posted in a while, I had a great summer and havent really had to think much about ITP. :laugh: But the 3 months of safe counts i got out of the IVIg infusion have passed and I'm back on treatment. (My count was almost 600 in May and it's just now reached 9)
I would like to hear if anyone has had experience with Imuran and what your side effects were and if you had any response to it at all?

My hemo put me on 100mg on Monday and so far so good!! (I'm not sure when the side effects, if any, are supposed to kick in though)...

Also, how long have you stayed on it to try to get in remission and how long were you on it after reaching remission before going off of the drug to see if your counts remain high enough?

Hope y'all are having a nice week! :laugh:

Hi Neve:

I didn't take Imuran for ITP, I took it for Lupus. The main side effect that I had was that I got sick all the time and couldn't kick it. I ended up stopping the drug because it didn't do any good and I was tired of fighting illnesses.

Good luck....

I agreed to try it about 4 years ago. I was reluctant as a sun worshipper but said I would give it a try.
It didn't work very well, never got a count over 40. Once I was up to the max dose for my weight (100mg a day) I had diarrhoea like you wouldn't believe so I came off it.

Neve did you get a TPMT test before you started it?

I hope I don't get sick alot while on it as uni is just about to start again Thank you, Sandi!

mrsb04, I haven't done that test, I did read about it somewhere online but I am not sure if they do it where I live. But since I get bloodwork each week I don't think bone marrow suppression is gonna go undetected, so I am not really concerned much.
How soon did you see the response (even if it was that small)?
The pancreatitis is the side effects that scares me... the rest are hopefully easily manageable after stopping the drug. But i hope I wont jave any and that Imuran will work..
Thank you!!!

Neve, just curious, are you in Europe (RS)?

Yeah I am, I live in Serbia :lol: I was surprised we even have NPlate and Promacta here :silly:

How is that Azathioprine going? Trying these ITP drugs is scary/sobering.

A friend of a friend retired in Split, Croatia. Just off the coast. You may have heard of it.

No side effects at all so far!
Doc checked my liver enzymes after 2 weeks and told me to come back in 3 months. In those 2 weeks my platelets did drop to 4 though (actually might've been zero bc there was a "plt-no possible interpretation" comment at the bottom of the paper). So I guess we'll see in December :lol:

Doc also told me to do the indium scan in the meantime, but I'm ready to fight them in case they start pushing for a splenectomy. I like my spleen where it is.

Oh, that sounds absolutely fantastic. I've heard of it for sure. The entire Croatian coast looks wonderful, I definitely wouldn't mind a 10h car ride to Split :silly:

Pa moraću da Vam pošaljem DM poruku. Srdačan pozdrav!

A PS / PSA: You may want to print out the latest guidance from elsewhere (US has a 2017 update, if I'm not mistaken) on splenectomy. Older physicians even here in the US still think of it as first line treatment but it's a matter of time before that thinking becomes obsolete.

Took me a while to work out how DMs work haha
Thank you, I'll try to find that. :lol:

Neve24 wrote: No side effects at all so far!
Doc checked my liver enzymes after 2 weeks and told me to come back in 3 months. In those 2 weeks my platelets did drop to 4 though (actually might've been zero bc there was a "plt-no possible interpretation" comment at the bottom of the paper). So I guess we'll see in December :lol:

Gosh 3 months is a long time when one is anxious about a possible success. Do you have symptoms that should go away with higher counts?

Doc also told me to do the indium scan in the meantime, but I'm ready to fight them in case they start pushing for a splenectomy. I like my spleen where it is.

Yea, I would think that test will show platelet destruction at spleen.

I like to hold up 'julia' as a good Azathioprine success story.
Spoiler alert. She was on 150mg initially but was able to drop to 50mg on response. Counts held around 275. Remission after 3 years.

I know! especially now that i'm used to my weekly visits... :lol:
I don't have many symptoms when I'm low, just bruises and petechiae. I personally wouldnt mind living with platelets under 5, so anything around 20/30 would be perfect. I mostly need a higher count so that i can get my teeth fixed and get a couple of moles removed, nothing urgent tho.

As for the indium scan, I agree, I think I am a classic example of the first row of your table (based on my steroid and ivig respose).

I'm on 100mg, it might be bc of weight difference though. Hope that's enough for my body to react to the drug!

Maybe three months is fortuitous for the next lab test.
I recall that 'mrsb04' and 'Ann' ended up quitting Azo because of side effects. Perhaps if it gives you problems too you can experiment with lower doses. Cut the dose in half and see if it becomes more tolerable. Or even skipping every other day with half the dose. Keep in mind. A useful goal could be just the 20 to 30 count you mention.

I think I'm just gonna do a couple of blood tests privately.. They are 5 buck after all. I'll update you all definitely.
Right now I take 50mg with breakfast and 50mg before bed, maybe that's helped me not get any side effects, i heard some people take the whole dose at once, idk.

One has to wonder. Is it when one notices side effects, that is when counts will rise.

Your mention of counts going to 600 on IVIG in another thread is amazing. That makes me wonder that younger folks have a much higher TPO reserve/production than older folks.

Yes! Our marrow really is exceptional... but unfortunately so is our spleen :lol:

i read a study yesterday that humans produce 1x10^11 platelets in one day (im bad at math but i think that's 100x10^9) which can increase a LOT (10 to 20 fold when needed, plus an additional 5 to 10 fold when on TPOs)... i really wonder how my spleen doesn't get tired :silly:

Well, Neve. If I've counted the weeks right, it's been 8 weeks since you started Aza. I note that user Ann got sick at 6 weeks and had to stop the drug.
How are you doing?

Hey, Hal! Thank you for asking, I wasnt aware it's been 8 weeks already ahhh.
I still have no side effects but I neither have a response to the drug sadly.
I had a period of 1 week when my counts were 40k (!!!) but now I'm getting petechiae again which only happens to me when I'm under 10k. I really hope Imuran starts working since it seems like it won't give me any side effects.
I probably won't have much to report on till my appointment (dec 4th) or until my indium scan (if it happens before december).
Hope you're well!

Ok, blah. If it's of any consequence, one document I've seen said for Aza:
Time to initial response: 30-90 days
Time to peak response: 30-180 days
For me, I get a count test result for 4wks on Danazol (and Promacta) later to day. Expecting 65.

Hoping for the best for you, soon.

Update:

My last cbc showed a count of 21 after 3. 5 months on Imuran.

I've had my check up 5 days ago and my hematologist increased the dose from 100mg to 150mg. Maybe it'll start working better (there were a couple of times my platelets were around 50) but I'm not that optimistic anymore.

The crazy part is that she told me to go schedule the indium scan after the appointment. I expected they'd tell me to come back in 2 months to do it, but they actually made me do it that same day. I stayed there from 8am till 8pm. And came 3 times after.

The results are (as best as i can translate):
average life of platelets: 0.5 days (normal: 7-10)
index of production: 1.5 (normal: 1.0) so my bone marrow is trying to compensate.
index of sequestration: 4.6
under 0.8 is liver, between 0.8 and 1.4 is mixed, between 1.4 and 2 is predominantly spleen and anything above 2 is purely spleen

My spleen is also enlarged (14.5cm x 6.5 cm).
I'm assuming if imuran truly fails my hemo will want me to the splenectomy. We'll see.
I'll update again after I see her on Dec 25th.

Terribly disappointing Neve. A valiant try. A few things come to mind.
- a higher dose, as suggested
- T cells have become a problem
- row 2, or another, antibody has become involved
Now on the higher dose, perhaps things are better (finger's crossed)? If not, have you or your doctor any ideas what may be the problem? Got a gut feeling on the hold up? Just off hand, if another antibody is at work, seems like one would loose their steroid response.

Speaking of splenectomy, I haven't kept up in that area. Does the doctor, or things you've read, suggest a reason why it is enlarged?

Comparing your Indium scan to Jason's, these numbers point much stronger to a spleen issue. I guess the strong 'index to production' number suggest that a row 3 or 4 antibody is NOT the issue.

Hi Hal,
Still no response based on my current symptoms.
Hemo was surprised abt the enlarged spleen but she didn't seem concerned at all since it isn't palpable. She also told be that Imuran won't help me probably.
I don't know about my current steroid response, I don't plan on taking them ever again :silly:
Unfortunately I'll probably try splenectomy next, since I can't get promacta or nplate without it first.
I still don't know when exactly though.
Best wishes to you in 2019!!!

In the UK guidelines have changed so one can get either without having a splenectomy. I refuse point blank to part with my spleen, therefore in my opinion it is splenectomy is contraindicated. My haemo started me on N Plate without one and then Promacta when that didn't work. Both of these were before the guideline changes.

Oh that would be great, I'm glad the guidlines have changed before you got it taken out!

Unfortunately I'm in Serbia and the healthcare budget is tragic. NPlate is only administred at the main hospital in the capital and everyone (maybe 6 people) who receive it have to travel there once a week to get it. It wouldn't surprise me if they use one vial for multiple people (in my opinion, the less that's wasted the better).
I'll see what I can do, maybe no one else actually refused the surgery before. I have an appointment to talk abt the splenectomy with hemo on the 29th. Crossing my fingers :silly:

Neve, have you ruled out Dapsone?

Haha, the mayor of New York recently made a statement that one can get free health care by just coming to his city. Maybe that would include a bottle of Promacta? I need to become a politician so I can give things away and everyone will love me for it.

Hal 2020, i like that!! :silly:

Sorry for the late reply!
I've only read about Dapsone on here, when I googled it I only found it on the list unregistrated medications. So I'm guessing I won't be trying that one any time soon. The good news is, all of my symptoms have disappeared 3 days ago, I hope it's a good sign!

Promacta And Nplate For All ! Do you like my slogan?

Is there some sort of European or Serbian registration for drugs? Wikipedia says it is on the ' World Health Organization's List of Essential Medicines'.

There should be a tipping point somewhere. You're certainly on the right drug to upset the balance. Cheer's to no more symptoms.

Neve, FYI...
I stumbled across this on Epstein Barr virus which lists an enlarged/swollen spleen as a symptom.
www.vinehealthcare.com/2018/02/28/reactivated-epstein-barr-virus-need-know/

Also, this study abstract talks about those that have temporary thrombocytopenia because of Epstein Barr virus, respond to steroids.
link.springer.com/article/10.1007%2FBF03040424

Then, once upon a time, I theorized that Epstein Barr virus may be a trigger for steroid and Dapsone responding ITP.
pdsa.org/discussion-group/7-treatment-general/29145-dapsone-lyme-disease-itp-connection.html#57945

Finally, I've posted this before as well. Epstein Barr virus inflammation can be controlled using the supplement NAC, aka N-Acetyl-Cysteine.
www.researchgate.net/publication/321735025_N-acetylcysteine_NAC_ameliorates_Epstein-Barr_virus_latent_membrane_protein_1_induced_chronic_inflammation

Again sorry for the late reply, Hal, just finished with all my exams.
I have my appointment tomorrow, I don't think I can choose treatment I want to have here (except to refuse it), one down side of free health care. I'll update you tomorrow on my count (I have a feeling Imuran has finally kicked in at least a little bit!!)

As for the EB virus, thank you for the links! I'll check them out and let you know my thoughts on it. Is there a test to know if I've been exposed to the virus in the past? I have never had mononucleosis, I am pretty sure, nor have I ever had a leukemoid reaction (which I think is what EB causes).

Best wishes to you!