Help with ATG/cyclosporine side effects

[Chandra4intx]

Hi all. I was finally diagnosed with SAA in December 2013 and just recently went through my first ATG treatment January 7, 2014. I am about 2 weeks and 2 days out and I am feeling pretty cruddy. I just wanted to check with others who have gone through this to see what their experiences were. I am currently taking 100 mg of Cyclosporine 2 x per day, 40 mg Prednisone, Cipro, Diflucan, Provera(to stop menstrual cycle), Valcyclovir, Protonix(acid reflux), magnesium, BP meds, and tylenol and benadryl as needed. My RBC's and WBC's, and ANC are coming up slowly. Still requiring transfusions of platelets and RBC's approximately 1x week. The problem is, I feel like I am feeling worse instead of better each day. I have absolutely no energy. Can't walk up my stairs without stopping in the middle, feel dizzy and fuzzy headed most of the day. I can't sleep because about 1.5 hours after taking my cyclosporine I have terrible burning in my stomach and chest, hot flashes, sweating, headache, pounding heart. I also have tingling in my hands and feet and my temperature sensation is off. My question is, Is this normal for 2 weeks out? How long will it last? Any suggestions on how to manage/deal with these terrible side effects?

Chandra, 40 year old mother of 2 girls, DX SAA Dec 2013, ATG Jan 2014

[Relentless Against SAA]

I feel your pain. You will feel better. Please keep us posted on your progress.
My son felt horrible after his ATG.
He was on a lot higher dose of Prednisone than you and I blame some of the misery on them. He was on Prednisone 100mg for 2 weeks then decreased the dose by 25mg every week. Full 2 months of steriods. Cushings symptoms by 6 weeks of steriod treatment.
Couldn't sleep very well, when he did he had horrible nightmares.
Terrible headaches. Very Very tired. Extremely moody.

Question
How much Prednisone were you taking right after the ATG and how are they tapering it?
I have read that Dr Neil Young at NIH is concerned that some facilities are prescribing excessively high doses of steroids post ATG. I am wondering what the correct dose of Prednisone post ATG is.

[Chandra4intx]

Thank you for your response. I was on 50 mg when I left the hospital and doc dropped it down to 40mg 3 days ago. So, he is starting to taper it.

[StephM]

I don't know if my answer might be of any help but my brother felt the same way after his ATG in September- though he didn't take so much prednisone if I remember well.
The shortness of breath while walking up the stairs gradually stopped as his RBC rose and became close to normal. He has less headache and does not really feel dizzy anymore. The stomach and bowels problems are gone.
He stayed in hospital for 5 weeks and got out when his blood counts were rising, so it didn't last very long at home.
Other problems like the tingling in his hands and feet, the swelling of the gums went slowly away as he got used to cyclosporin. He is still tired and has to rest in the afternoon, which he never did before.
What remains is terrible joint pain, especially in the knees. He went to see the hematologist yesterday who told him that he didn't know how long the pain would last, and if it would go away at all. It may be residual, he explained, from the ATG treatment, even 5 months later. He gave him a small dose of prednisone to see if it helps.
So, it seems that most of your problems are normal 2 weeks post ATG and many will soon go away. But some problems might remain, who can be really annoying. I hope it won't be the case with you!
And the most important of all is that your counts are rising.

[KMac]

Hi Chandra4intx,

I've been through much of what you are going through. I am close to two years post-ATG.

One thought, is that as awful as the side effects of Cyclosporine can be, they may really seem less awful to you once you are off the prednisone. I say that because personally the prednisone put me in a terrible state of mind, and made everything seem worse. I understand many people have that effect from prednisone. Also, I found it very hard to sleep on the prednisone. Once I was off the prednisone, the side-effects of the other drugs seemed more tolerable, and I was able to sleep more easily.

Are you taking anything to help you sleep? I am of the mind that it's best to take as few drugs as possible, especially since with SAA we already have to take so many, but without a strong dose (10 Mg) of Ambien each night, I literally wouldn't sleep a wink while on the prednisone. I stayed on the Ambien for months afterwards too, but now can sleep fine without it.

All that said, prednisone can be crucial post-ATG. I have a long story I won't get into fully here, but in short I had one abortive attempt at ATG, in which they only got about 75% of one day's dose into me before the side-effects became serious enough that they stopped the infusion. Since that was just a partial dose, I basically begged my doctor to let me taper the prednisone early, and regretted it because I promptly got a pretty awful case of the serum sickness. A few weeks later I redid the ATG, and that time, with the help of huge amounts of steroids, they were able to get 4 full days' doses into me as intended. I stayed on the prednisone full force for two weeks after that! For me, full dose was 100 mg/day, with a taper after two weeks, down to 0 mg/day by week 4 post-ATG (I am 5'10", about 175 pounds).

I believe you are very close to being out of the woods for the serum sickness, so it seems the time is right for you to start the taper. But, my doctors warned me that I would also probably feel crappy during and just after the taper, as my body had built up a dependency on it.

Also, I did begin to tolerate the cyclosporine better after time. My gums stopped swelling and my headaches became less severe. Unlike you, my counts improved very slowly, with the greatest increases not until months 8 and 9 post-ATG. While my reds and platelets are now near normal, my ANC has only partially recovered, and as such I did not begin my taper until 18 months post-ATG. I am slowly tapering now, down from 500 mg/day to 350 mg/day.

Sorry this is such a long post, but I wanted to give you a 'brain dump' of what I experienced. In short, what you are experiencing is quite normal in the context of this very abnormal and mysterious disease we have, and in all likelihood your side effects will improve in the weeks and months ahead. Patience is key. We have been conscripted to run a very long race, and endurance counts. But of course, figuring out how best to alleviate your side effects matters too.

[KMac]

...one more thing I'd add. I found exercise to be crucial to improve mood & energy levels, decrease side-effects, and enable sleep. That included when I felt crappy and exercise was the last thing I wanted to to. While the particular preference in exercise type is up to the individual, it seems some form of exercise is crucial.

I still find this to be the case. In my path from health, to SAA, back towards restored health, I went from running, skiing, and backpacking - to literally being unable to stand up in the shower - to bundling up in the cold after transfusions and walking as much as I could (doctor's orders, I've had some very good doctors) - to slowly weaning off the transfusions and walking a bit further, then slowly jogging, then going on longer hikes. As many push-ups and sit-ups as I could do. Some yoga.

This past summer I climbed mountains with my sons with our packs full of camping gear. Last weekend I went skiing with my son. I am about to take my dogs on a 4 mile jog over hilly terrain. I also work full time again. So although the effects of aplastic anemia persist in me, I am immensely grateful for my improvements. I have my life back.

I remember how overwhelmingly frightening everything was when I was at your point in treatment. But in all likelihood, things are going to get MUCH better for you in the weeks, months, and years ahead. Improvement may be very slow, but I believe it can be helped along by outlook, endurance, and exercise.

[DanL]

I know that this is not a direct answer, but it was my experience on predisone. For about 6 months prior to my MDS diagnosis, I was being treated for ITP with prednisone, imuran, and rituxan. Although it was a difficult experience I did find that getting daily exercise, focusing the highest dose of prednisone into the morning, and splitting the dose up so that it was not all one big hit really helped me the most. Once I was able to integrate the drugs into my body's daily pattern, I was able to sleep, wasn't quite as moody, and didn't feel like my heart was going to pound its way right out of my chest.

[Chandra4intx]

Thank you all so much for your replies! I am having a much better day today. I finally slept last night which was a huge relief! And I feel that my body may be getting a bit more used to the cyclosporine. I definitely agree that exercise plays a huge role. Even though I have had NO energy for it, I have at least tried to walk each day and do about 30 minutes of gentle yoga. The breathing helps me tremendously with my anxiety as well. Drinking a lot of water seems to make a difference too. I can't wait to get off of the steroids, but as with this whole thing, I am just going to have to be patient. It is so nice to have a sounding board to talk with others going through such a rare disease! It makes one feel not so alone! KMac, it is great to hear you are getting back to a normal active life!

I have a question. I have noticed that with a lot of people who post on here, they don't have improvement in numbers sometimes until 2 years post ATG. Or they will do several rounds of ATG. Is this because they do not have a related bone marrow match to do SCT? My doctor is saying that if we don't see vast improvement within 3 months we will probably think about moving towards SCT. My sister is a match. What are your thoughts?

[Hopeful]

Hi Chandra4intx,

I would question how many AA patients your doctor has treated if he is suggesting going to transplant after 3 months. Early responses may occur at 3 months but many take 6-9 months and sometimes longer. Also, a "response" at 3 months could just mean an uptick in some of your blood lines or transfusion independence. The responses usually aren't complete so early on.

At 40, you are young, but not in the AA world. So your risks of death or serious GVHD complications from a transplant are higher. I had two sibling matches at diagnosis, and my doctors consider a transplant as a last resort.

You are on a lot of drugs right now. Question your doctor as to whether they are all necessary. Sometimes they forget to take you off! Your dose of cyclosporine is not excessive. So, I agree with the others that you will feel significantly better when off prednisone and some of the other drugs. As a point of reference, I was only on cyclosporine and prednisone after ATG.

[BobbyJD]

You are not alone. My sister had serum sickness unfortunately and I believe it lasted for at least a couple weeks post ATG. The first several weeks, even couple months are tough. There are so many meds and your body is going through a lot, but it does get better. Your almost there, from what I remember once the serum sickness past and my sister was off all the steroids and other various meds she improved quickly and was back to her normal self. Just remained on cyclosporine for a year but that usually becomes very tolerable for most people.

As for the transplant, from what I've read and heard, if there is absolutely no response by 6 months post ATG its considered a failure. The important thing is seeing any improvement at all, it does not have to be significant it just has to be a step in the right direction. Some people, like my sister, have counts that rise quickly in 4 - 6 months almost to normal, others it does take a year or more but as long as they are moving in the right direction you are in good shape. Our Dr. always mentions BMT as a last resort, unless your very young (sub 30) and have a sibling match. Get another opinion from another Dr. that specializes in AA if you are uncomfortable. If you don't need transfusions and you can manage the meds with counts that are just enough your doing ok in the AA sense. I feel only transfusion dependent people with dire counts should only be considering BMT. hope this helps. good luck

[poornimaprakash]

HI,

My father has undergone atg injections 1 month ago.He is having too much muscle ache in the legs.Is this common?Doctors said this will gradually go off... but he is unable to walk also cozz of pain... He had temperature of 100F 2 days ago... a lil panic anyone who had similar experience do reply as this can boost self confidence....