Headache after ATG, on oral steroids and cyclosporine

[SAA Mom]

My son was diagnosed with SAA 1 month ago. We completed 4 ATG treatments on July 1. Ten days ago he began having severe headaches. The doctors have prescribed Vicodin which does help the headaches but only to return in approx 5 hours. He is on a tapering dose of Prednisone. Today he will start taking 50 mg. Doctors are lowering his dose by 25mg every 7 days. He is on Cyclosporine 300mg every am and 200mg every evening. We are in a horrible cycle of headache.. Vicodin.. nap... headache... nap. This is not good in a 21 year old college student. Looking for suggestions.

[Marlene]

Make sure his magnesium level is good. Cyclo can cause low mag. Mag is used to treat migraines and may be helpful for him.

[curlygirl]

Hello! My son finished his ATG last week. I'm sorry your son had to have it, too. The headaches can be caused by high blood pressure, which like Marlene said can be caused by low magnesium levels, and cyclosporine can cause low magnesium levels. Are your doctors checking your son's blood pressure and magnesium levels? My son is 8 yrs old and around 60 pounds and he is on three 40mg magnesium tablets a day, one each with breakfast, lunch, and dinner. They started him on one magnesium tablet a day but his magnesium continued to fall. Good luck and I hope your son recovers soon!

[marmab]

I too had severe headaches and high blood pressure when I was on cyclosporine (CsA) after ATG. My liver seemingly really chewed up the CsA, thus requiring a rather high dosage for my body weight. The doctors were constantly fine-tuning my dosage to try and keep me at the recommended therapeutic level, but the high dosages of CsA required to do this gave me severe headaches. Interestingly, as it turns out, the doctors determined that I was one of those rare people in whom CsA has the tendency to decrease counts, rather than help them (it's a bit more complex, but that's the short story). So when it was decided to abruptly stop the CsA six months after my 2nd ATG, my red cell count immediately went up and has stayed above transfusion level for almost a year now. AND, no more headaches! I realize, however, that my reaction to CsA was unusual, and most people cannot discontinue it as I did. Unfortunately, my plts and whites are another story, which is too lengthy to go into here.

So from my experience, I would say, as others have, that CsA can definitely give you headaches. Whether it is the CsA itself, or its tendency to raise blood pressure and affect magnesium, which can cause headaches, is hard to say.

[ssdavi71416]

Hello. Sorry your son and family are going through this treatment. I had extreme headaches. Tramadol seemed to work for my headaches and did not put me to sleep. I tried the other narcotics an they didn't do much. Also the antfungals caused the worst headaches. If he is on other medications it could be one of those. Low Hgb counts will cause headaches and this treatment in general makes you very tired. Drink lots of water, 100 oz a day if possible. Best wishes.

[Hopeful]

Originally Posted by SAA Mom

My son was diagnosed with SAA 1 month ago. We completed 4 ATG treatments on July 1. Ten days ago he began having severe headaches. The doctors have prescribed Vicodin which does help the headaches but only to return in approx 5 hours. He is on a tapering dose of Prednisone. Today he will start taking 50 mg. Doctors are lowering his dose by 25mg every 7 days. He is on Cyclosporine 300mg every am and 200mg every evening. We are in a horrible cycle of headache.. Vicodin.. nap... headache... nap. This is not good in a 21 year old college student. Looking for suggestions.

What is your son's weight?

[SAA Mom]

Thank you for all your suggestions. He weighs approx 168 lbs and is 6 foot 3. His B/p is 110/70. I am not sure his magnesium level but will find out. The headaches have decreased a little over the past 48 hours. Once again, thank you for your time and answers. I truly appreciate it

[Connie]

Hello. I had terrible headaches after treatments and while still on meds. I was told I had them because my red blood cells were so low. After I would get a blood transfusion, they would go away. With time, they completely went away and my blood counts went up.

[SAA Mom]

I do not see a recent Magnesium level on my sons records. I asked the doctor and they are going to check this level with his next blood draw. Also, He is getting a new script for Ultram. His hemoglobin is slowly dropping. I believe his last level was 9.7. The orders are for transfusion of 2 units when level below 8. Thanks so much for every ones help.

[SAA Mom]

Has anyone heard of using medications called Beta blockers for these headaches? Meds like Metoprolol?

[marmab]

I have heard of beta blockers being used to prevent migraines. Might be worth a try. I was given various migraine meds for my CsA headaches, which did work for mild headaches, but really the only drugs that worked for me for severe headaches were oxycodone (OxyContin) and hydromorphone (Dilaudid) together, or IV Dilaudid alone (Dilaudid is more effective given intravenously than orally). My doctors tried to keep my CsA trough level at the low end of the therapeutic range, but I had frequent headaches nonetheless until the CsA was discontinued.

Good luck. I hope the headaches taper off on their own. These drugs are no fun.

[SAA Mom]

Do you know the therapeutic range for Cyclosporin? Where did they try to keep you?

[marmab]

The outside lab that my hospital uses defines the target therapeutic range as 200-400 ng/mL (12 hour trough measurement). In my readings, I have also seen 150-400 listed as the desired range. We aimed for my trough measurement to be at 150-200 ng/mL. There were times when it spiked to over 400, and that is generally when I would get the severe headaches.

[SAA Mom]

My sons levels are around 250. I was hoping they would lower his dose of Cyclosporine since his level is high but I imagine they won't after hearing how high your levels got. I can't imagine imagine the headaches with 400. His magnesium level was a little low... 1.4 so they started him on a supplement. Tomorrow I am going to ask about a Beta Blocker.

[Hopeful]

Hi SAA Mom,

At 168 lbs, your son is slightly above the therapeutic range for cyclosporine. He is taking 7 mg/kg/day while the suggested max therapeutic dosage is 5 mg/kg/day.

If he went down to 400 mg/day of cyclosporine, he would be at the suggested dosage and possibly have less side effects. Something to discuss with his doctor...

[dfantle]

Hello, I hope your son is starting to feel a bit better.

In answer to your question about Metroprolol, this is typically used to lower high blood pressure & his seems fine so I don't think this would be recommended. The headaches could be from the cyclosporine or low magnesium. I had a lot of head pressure while on the higher doses of cyclosporine which he will be on for a bit of time still after the ATG, before the doses are lowered . I particularly noticed the head pressure would start to occur within an hour after taking the cyclosporine and it would settle after several hours.

While taking cyclosporine both the cyclosporine and magnesium levels really must be checked weekly. The reason to check the cyclosporine levels weekly is to ensure the dosing is correct-not too high & not too low. The timing to check this level is about 11-12 hours after the last dose & before the next dose is taken. As others said, the cyclosporine wastes magnesium (his Dr should know this) & if the magnesium is low, this could cause headaches, tingling in hands and lips, muscle aches. This us why the magnesium levels should also be checked weekly. Some of these same symptoms can also be caused by the cyclosporine. Particularly for me I had hand tingling and burning from the cyclosporine, as well as the head and neck pressure. Luckily these symptoms will reduce when the Dr is able to lower the cyclosporine levels

Regarding the magnesium, While on cyclosporine, I was on 1000mg/day & many adults are on higher doses. This high dose was necessary to keep my magnesium at normal levels. I found 100mg capsules of magnesium glycinate, which I've been told is the preferred type, though it can be hard to find. Magnesium can cause a temporary "flushing" feeling for a short time after taking it. It can also be hard on the stomach for some & cause lower digestive issues for most, depending on the dose. So finding a balance between how much is needed to maintain levels in the body and trying to minimize digestive issues may take a while to figure out. With the 100 mg capsules, I was able to spread the dose throughout the day so rarely had digestive issues once I figured it all out.

Also, the magnesium is best taken with food to help with absorption, and at least 30 minutes prior to the Cyclosporine so it can start to absorb before the cyclosporine "hits".

Good luck!!

[SAA Mom]

Dena,
I truly appreciate your info. We asked his NP at Barnes. She seemed surprised I request a Mag level from our local hematologist explaining she never checks this level and did not feel Cyclosporine lowered Magnesium. She said the Magnesium could make him feel fatigued. Now I do not completely agree with her on this issue , I know several people who take Magnesium who are not feeling overly tired and his Mag level was low for the first time in his life so I am glad we checked it.
What would we do without Marrow Forums? Thanks for your help. Thanks to all the people who take time to share their knowledge on Marrow Forums.

[KMac]

Hi SAA Mom,

One more AA patient confirming that cyclosporine lowers magnesium. If that NP thought otherwise, she was mistaken. I've been on cyclosporine for 18 months, and I need to take supplements to keep my Mg in the proper range. Every time I go for blood tests they check my magnesium for this reason. I used to actually need magnesium infusions, but am doing much better now. Also, when I googled 'cyclosporine lowers magnesium', one published article after another came up on this.

[KMac]

Hi again SAA Mom,

Also, as per your initial post 'Headache after ATG, on oral steroids and cyclosporine', I have been there! I think I know how your son feels. I responded to the ATG/Cylosporine very slowly and was exhausted with terrible headaches for several months. 18 months post-ATG I still have fatigue and headaches, but how I feel has improved by 90%.

I believe severe anemia contributed to my headaches and certainly my fatigue, as I hovered just above transfusion levels for months. It felt like a miracle for the blood to finally come back into my body, and I hope very much this treatment will have the same effect for your son.

I personally have found no medicine at all to help my headaches. But exercise, eating well, staying hydrated (I try for a gallon of liquid a day) - for me sticking to that regimen is what helped.

I'm still on a full dose of cyclosporine (500 mg/day like your son). Reason being that I'm often moderately neutropenic (ANC 600-1000) although my other counts have recovered better - my doctor is concerned of relapse if I taper. I've came to tolerate the cyclosporine better with time, but it can be a rough drug and I am sure looking forward to taking less of it!

[SAA Mom]

Kevin,
How long did it take for you to respond to the ATG/cyclosporine? Do you have a sib match or will you have a MUD BMT? Do you have PNH in addition to your SAA?

My son headaches are improving since they dropped his dose to 200 mg 2x/day. He does still have headaches and has some tingling in extermities on and off.
Thanks.

[KMac]

SAA Mom,

'Response Time' is such a tricky thing with ATG/Cyclosporine. It can happen so slowly, that you don't even know for sure it is happening until you look back on it. At least that was my case as it happened so slowly, I'll try to clarify with details below....

I received my last platelet transfusion 2 months post-ATG. I received my last RBC transfusion 3 1/2 months post-ATG. I recall being shattered that day, as I understood that if the ATG was going to work, it would probably work in the first 3 months. So a transfusion post 3 months felt like failure. But if only I had known that'd be my last transfusion, I sure would have felt better about it!

At 6 months post-ATG, my platelets were about 50, Hgb about 8.5, and my doctor felt my response was sub-optimal enough we were considering another round of ATG. He said it was unlikely to see significant gains 6 months post-ATG. Yet it wasn't until months 8-10 that my counts really started rising. My platelets hit normal around month 8, my Hgb went over 13 in month 10.

And my ANC/WBC response is still only partial. My ANC rises to about 2000 when I get sick (which I do only occasionally), then falls back down to 600 once I feel better.

I don't have a sibling donor. We tested my two brothers immediately upon my diagnosis and they did not match, but my hospital found several probably 10/10 matches for me on the registry. Now that we have went the immunosuppressive route though, we sure are hoping I can avoid a transplant.

I understand you frustration with differing opinions on whether a transplant is best for your son. I would think the protocol now that he has had ATG would be to wait 6 months or so to make a decision.

I don't have any sign of PNH or other issues in my Bone Marrow biopsies (I've had three, in which cellularity has climbed from 1% to 5% to 25%). Just straight aplastic anemia knock on wood!

I wish you and your son the best as you fight this thing. It is so hard to be patient for the treatment to work, but sometimes it seems patience is what is needed.

[KMac]

...one other thing, so far as watching for signs of response - looking back I think I had subtle signs in my blood tests signifying that I was responding. Namely, my RDW (red cell distribution width) and MCV (mean red cell volume) started to rise significantly above the normal range. Along with that, they started flagging occasional blasts in the peripheral blood, nucleated red blood cells, and other abnormalities in my blood tests.

If you google all of these things, it isn't comforting, as they often signify things like MDS and leukemia. So of course that scared the crap out of me at the time. However, I have a wonderful doctor and he explained it to me differently, and he was correct in my case. He basically said, "your marrow is fighting for it's life to produce blood, it is probably 1) creating large cells to make up for the lack of cells (hence the high MCV and RDW) and 2) occasionally making some mistakes (hence the other abnormalities in my tests)."

...in short, our blood donors in all likelihood have normally sized and shaped blood cells, so abnormalities in MCV and RDW probably mean it's blood from our own marrow showing up, which in aplastic anemia response is likely a good sign.

Also, glad your son's headaches have improved some with the decrease in cyclosporine.

[dfantle]

Originally Posted by SAA Mom

Dena,
I truly appreciate your info. We asked his NP at Barnes. She seemed surprised I request a Mag level from our local hematologist explaining she never checks this level and did not feel Cyclosporine lowered Magnesium. She said the Magnesium could make him feel fatigued. Now I do not completely agree with her on this issue , I know several people who take Magnesium who are not feeling overly tired and his Mag level was low for the first time in his life so I am glad we checked it.
What would we do without Marrow Forums? Thanks for your help. Thanks to all the people who take time to share their knowledge on Marrow Forums.

Hi SSA Mom, you are so right, Marrow Forums is such a blessing and I have learned so much here from others. I'm always surprised when my NP doesn't know these types of things, though they don't always & it surprises me. Recommend you ask your sons Hematologist or pharmacist about this.

I do not feel tired from the low magnesium, just the symptoms I mentioned in my earlier post. My transplant team and hematologist automatically prescribe magnesium while on cyclosporine, even after my ATG. This is done daily via infusion for the first few months post transplant so it is easier on the stomach and once the stomach has settled, they switch to oral. I would think this is particularly important with someone your sons age who may still be growing...

Best,

[sues]

I have found that eating raw pumpkin seeds really helps. Just a few handfuls, they are very high in magnesium.