I feel ok, still on the vancomycin + rifampin for the c diff but I think this time it is going away. I feel like I'm getting stronger. I trotted my horse on Sunday for the first time in awhile. I wonder if the tacrolimus is doing anything since I don't feel any effects. I have another transfusion booked for this Saturday, after that it is every 2 weeks. I am hoping soon I won't need any. I still feel kind of dizzy / tired from the anemia, the usual, but at least that's kind of back to normal as opposed to having c diff on top of it all.

I have a job interview tomorrow, for my job here. I've been doing this job for 4 years now, hopefully I can get on permanently so I can have a drug plan, sick leave & vacation.

Deb

Good luck on the interview!!

And I interviewing for a new position at my job on Thursday. I am worried they will see all my time away as a negative and I won't get it. But at least I can try!

Laura

Good luck with the interview!

Thanks, the interview went ok yesterday.

Today: HGB 87 Retics 11.3 WBC 1.2 Neuts 0.7 Platelets 270

I can't help but think my counts are right back to where they were pre-ATG. It's now been 2 months. I had some improvement for awhile, but now I'm back to where I was before. If it can take 6 months to kick in, do your counts remain in the toilet until suddenly they magically improve, or do you normally see slow but steady improvement?

Does the bone marrow have to "heal"? It seems like the tacrolimus is doing nothing.

Thanks,
Deb

I just looked up side effects from the abx I've been taking for c diff. The rifampin can cause destruction of RBCs and vancomycin can cause neutropenia. The last 2 weeks my HGB has been dropping what seems like faster than ever (16 points one week) and my WBCs are back to what they used to be - 1.2 and ANC of 0.7.

I just took the last of the abx this morning, maybe my counts will improve. Maybe also my dizziness, which has only come on recently.

Deb

Counts this week:

HGB 88, Retics 8.0, WBC 0.9, Neut 0.5, Platelets 202

I'm really annoyed and frustrated. Now I am needing transfusions weekly instead of every 2 weeks. I wasn't this bad before. I see the local hematologist tomorrow morning, but I'm starting to wonder about any of these so called treatments.

Deb

Hi Deb,

These diseases can be frustrating can't they? The "treatment" can be slow and unpredictible, even more frustrating.

I have no answers for you except, hang in there.

Best of luck to you.

Chirley

I am sorry to hear the news...please let us know what the doctors have to say.

Laura

Well you'll never guess what. I saw the hematologist and she said because my tacrolimus levels were so low, she looked up drug interactions. Turns out, rifampin is a metabolic inducer of tacrolimus, so it makes your body metabolize it way too fast and keeps the trough levels low.

This week my level has been rising after I stopped the rifampin. She says we may even need to reduce the dose of tacrolimus, I am currently taking 10mg a day and it is $$$$$. I'm kind of annoyed at wasting 2 weeks of expensive tacrolimus while taking rifampin, and I was right about not feeling any effects from it.

She thinks my counts were bad due to not having enough immunosuppression. (I have a philosophical problem with immunosuppression but I am doing it anyway, 75-80% chance of remission seems like good math to me). So then I asked - does that mean the ATG did not work? (my burning question)

She said my lymphocyte count of 0.3 shows the ATG is working.

I am not sure why, if the ATG is working, that my counts are so bad, but I am willing to accept that and see what happens.

Interestingly, I had been on minocycline for the 5-6 weeks before my ATG treatment as part of the Marshall Protocol. My lymphocyte count went down to 0.4, which was my lowest count to that date. I wasn't on it long enough or at a high enough dose to see if it would have helped, and I was also only taking 25mg every 2 days (I have to work up to 100mg every 2 days). Also interestingly, my other counts weren't trashed by the minocycline. Mino is also cheap, which is really only of any consequence if it works.

There are studies showing mino modulates T cells, which is why I am mentioning it.

Anyway, she wants me to take bactrim to prevent PCP (pneumonia). Bactrim is one of the MP antibiotics, so I will be taking that on Mondays & Thursdays. I am back on 25mg mino on Mon, Wed & Fri.

I refused to take acyclovir, as it makes me feel sick. I have had shingles before and it is NO fun. If I get shingles again I will take acyclovir but until then, I think I am on enough meds.

Also starting back on exjade any day now. I am half scared to start it because I've been off the c diff abx just over a week. After my first round of flagyl, it took about 10 days for the c diff to come back. Since exjade gives you diarrhea, I thought I would wait another couple of days, but I think the c diff is gone now.

Deb

Acyclovir pills made my wife horribly sick to her stomach, but she was fine taking acyclovir by IV.

We don't know why that was the case. In any case, oral acyclovir is still on her personal "drugs to avoid" list, while she'd take the IV form if she ever needed it again.

Hi Neil,

Being horribly sick on top of everything else is something we can all do without. I did have shingles before, so I'll take my chances. I couldn't afford acyclovir the last time, but I guess they are off patent now. I had it while I was on cyclosporine and I had horrible mouth sores, but it didn't help, just made me feel sick.

Deb

This week my HGB only dropped 9 points. I suppose that is an improvement. Now I am back to my pre-ATG condition except for the expense of the tacrolimus, which I could do without. I'll be at the 3 month mark in 10 days and so far I only had my platelets go up for about 2 weeks and that was about it.

I really don't want to have to do ATG again any time soon, as it's taken me months to get over all the complications.

I hope it works but right now it's not looking too promising.

Deb

Well, I am still not seeing any improvement.

Yesterday:
HGB 85, WBC 1.7, Neut 1.0, Lymph 0.5, Platelets 157

This was after my transfusion on Saturday. It seems like the ATG has done nothing, and it seems like my HGB is dropping faster than ever.

My tacrolimus trough level is 3.5. Does anyone know what it should be?

Deb

My place likes to keep Tac level between 6-10 I think? if I remember correctly?

How long ago was ATG?

Your counts look pretty decent to me.

Laura

Hi Deb,
Everyone's case is different so there no "rules" I guess. I had my (h)ATG almost 10 months ago and HG, Platelets, RBC, and WBC all stayed at pre ATG levels or dropped for a month following hospitalization. I was transfusion dependent for 1-2 months and all CBC levels came to pre ATG levels and stayed there till last month. I'm seeing a slow increase in almost all values in spite of being off tacrolimus for 2 months because of side effects. Hang in there and don't even think of a second ATG for 9 months or so if you can avoid it. It's a strange illness that we have.
Flyguy-- HG 9.3 and platelets 46,000

Thanks Flyguy. I have to admit I do not like the thoughts of a 2nd ATG after what I've been through, I feel like I am just getting back to normal after 3 months.

I have some dr's appts coming up so we will see what they say. I see my GP, the Dr in Toronto (who ordered the ATG), and the Dr in Ottawa.

Today I am feeling pretty good, not sure why. Maybe the tacrolimus is finally kicking in (I am now on 16mg a day), or maybe I have endorphins from riding my horse this morning. I don't know how long it'll last. I only know that I managed to empty and stack the dishwasher a couple times, get dinner started, and cleaned the kitchen counters (while humming).

So far - thank goodness - I am not having much side effects from the tacrolimus. But man is it ever expensive!

Deb

My tacrolimus levels are up and my HGB drop has slowed a bit, only dropped 7 points last week and I felt a bit better. My counts yesterday were:

HGB 78, WBC 1.6, Neut 0.8, Platelets 91, Creatinine 89
tac 5.4

I am on a low dose of exjade, 500mg a day.

I have increased my minocycline to 100mg Mon, Wed & Fri. The rationale behind mino is this: http://www.ncbi.nlm.nih.gov/pubmed/20173028 (mino is a PXR activator). I'm also taking septra, olmesartan, and am now up to 16mg of tacrolimus a day.

I am having some minor side effects from tacrolimus that I also had on cyclosporine - temperature sensitivity in fingers and toes. I can handle that.

Also having a less minor side effect return: pain in right hip. Not so thrilled about this one.

Transfusion tomorrow, hopefully my last!

Deb

The HGB slowing effect
 

Hi again,

I'm in the same boat as you regarding hemoglobin. In September, I needed at least 6-7 units of PRBC to keep my counts in the mid 7's. This month, just 1 so far maybe another one at the end of October.

I just can't wait for the day that it starts coming up on its own.

Yeah, I can't wait too!

Deb

Counts today:

HGB 91, WBC 1.7, Neut 0.9, Lymph 0.6, Plat 107, Creat 125
tac 7.4

I had a transfusion last Sat and expected my HGB to be about 105 then, so it is still quite a drop. I got about 650 ml of red cells. It usually is good for 30 points, at least I think. You never know how much you will get, sometimes you get small bags and sometimes you get a lot more.

I saw my GP yesterday and he said having C difficile 3 times could still be wreaking havoc with everything.

I'm debating going to ride my horse, but I can hardly get my butt off the sofa for anything today. Ah well, there's always tomorrow.

Deb

I saw Dr Wells on Friday. It's not looking like the ATG / tacrolimus has worked and he asked if I'd consider a BMT. I said no. He said it was only 50/50 anyway.

Basically, there's no more treatments. I was surprised he'd give up so easily.

We're going to give it to March to see if the ATG kicks in, but it's not looking promising.

I don't want to keep trying treatment after treatment and possibly making it worse, but I didn't think this would be it.

Deb

Hi Deb,
I'm so sorry you are frustrated and anxious about your limbo condition. It's part of the diagnosis, I think. When my onc told me the same thing about running out of viable treatment options I was depressed and a bit angry. It doesn't seem that we should have to deal with something that can't be treated. Of course there are no rules for this illness, so my anger was not helpful. My onc said BMT would be 50% chance of survival and if successful would raise blood numbers but not quality of life.
I've sort of gotten a handle on that and taken it as good advise rather than pursuing something that's dangerous and not practical. OTOH, doing nothing, getting off tacrolimus, and just monitoring CBC every month has stopped the decline in blood numbers and made me feel better. My ATG treatment was almost a year ago. Who can say if it's helped since it was so long ago, but don't assume you are in a sinking boat. My platelets are yet to reach 50 but I've found that just doing what I can with my activity level is good psychological therapy for me. Once in a while I can climb our local Stone Mountain which is 600 feet high and over a mile of trail. I have to rest for a day or two afterward but It's a decision I make, knowing I'll pay for the next day. For me it's worth it to have the fresh memory of doing something "normal" again. I kept thinking my doc should know what to do-- Well they have more experience with others with our illness, but each of us is different. Be sure and put your own two cents in about treatment, or no treatment. "We" decided not to do another ATG and get off tacrolimus and my numbers went up. For me it worked out well to watch and wait rather than grasping for more aggressive treatment options. but just being involved in the decision give me some ego boost. Watch and wait IS a treatment, but hard to live with until your realize it.
Best of luck with this difficult time.
Flyguy

Thanks Flyguy. I spent the weekend kinda bummed out but just got back from riding my horse and now I feel a lot better. I don't want to do treatment after treatment just for the sake of it, I don't think that's good either. I would rather step back for awhile and see what happens. I see my other hematologist next Tuesday. She may have some other ideas. My big concern is not making the condition worse, and a lot of those meds are pretty heavy duty. I still feel better now with HGB in the 70s than I felt with HGB at 100 on cyclosporine.

Deb

I started reading your posts. In the beginning I already know you have AA. I do not know what treatment you have right now. Have you tried low dosage of cyclosporine with ATG which seem to fit treatment for AA as have read so much scholarly literature and also NIH site source. I have PRCA and I am taking low dosage of Cyclosporine (100 mg/day) which is tolerable for me instead of 300mg/day but since I started 3 wks ago, there is still no progress with my retic counts. I got my PRCA secondary to Parvovirus infection which was successfully treated by IVIG. I am thinking that maybe I still need to have one more day of IVIG treatment to neutralize more my immunity with Parvovirus.

Blessing to you.

I had ATG Horse in April. Hives after first dose. Don't remember much for the next four days after. Apparently, the next day my heart rate dropped, nurses pushed some med (atafen..spelling?) and my heart rate shot up, felt like I was having a heart attack, I do remember that. Then apparently the next day I coughed up blood so they stopped the ATG horse after two doses. I was in ICU for three days. Then had ATG rabbit for four doses over four days. That was fine. Slept a lot and had trouble focusing on anything but no problems since. Had one infusion of red about two and a half weeks after the hospital and they gave me platelets as well just for a boost. Havent' needed anything since. May have to repeat ATG in spring, though, due to recent bone marrow biopsy showing a return in q13 deletion cells, although my platelets are at 253K last check, ANC fine and HCT at 35.5

Seems everyone is different. Don't be surprised with the unexpected. And take magazines with lots of pictures because reading may be hard. And, of course, take your computer. Hulu and netflix are a must. Good luck.