Flashes- Has anyone heard of this?

[JodyW]

HI,
My son Trevor was diagnosed with VSAA in march had ATG and is currenly on cyclosporin. He recently started to have his left arm and leg turn red and get very hot. He described it like frost bite when your hands are so cold it burns if you run it under water. The Dr told him it was Flashes. I looked up flashes and could only find hot flashes which doesnt seem to apply.

Unfortunatly my son is in prison and he has limited access to the hemotologist , no specialist in AA and a prison Dr who knows nothing about AA. Any idea on what that response may be. Im concerned the prison is giving him the cheepest blood they can find and may be having some effect.

[Neil Cuadra]

Jody,

It's more likely the cyclosporine, not transfused blood, that is producing this side effect. Read the Cyclosporine and shower issues thread by another mom. You can post there too if you'd like to compare notes.

After ATG, patients usually need to stay on cyclosporine for many months, with 6 months to a year being typical (every case is different since it depends on the patient's rate of recovery). However, doctors usually reduce the cyclosporine dose over that time, tapering gradually. Trevor's cyclosporine side effects should lessen as the dose lessens. If they don't think there's a real danger they probably aren't going to want to reduce his cyclosporine simply because of side effects. That's because it would increase the risk of an VSAA relapse.

It's very good that you are gathering information for Trevor since he doesn't have access to an aplastic anemia specialist. Despite the unusual circumstances it sounds like he's gotten the correct treatment so far. ATG and cyclosporine is the standard approach because it has a good success rate.

If you haven't already gotten it, order the free booklet Your Guide to Understanding Aplastic Anemia (https://www.aamds.org/aplastic/disease_information/educational_material/index.php) from the Aplastic Anemia & MDS International Foundation. You, Trevor, and his hematologist should all know that help and expertise are available just for the asking.

[BerryP]

Hi all, I can definetely concur that ciclosporin gives flashes. Sometimes I get them in the back of my left thigh and its as if I have sat on something really hot that has made my leg too hot to stay sitting. I also have to take baths instead of showers for the sensitivity. Sometimes you get such bizarre effects that you could think you were going mad. I get muscle tremors when my leg decides to dance on its own or my fingers tap out a rhythm without my permission. I used to try to hide this when it happened but now I think sod it i'm ill, I will be a little bit weird. Good luck to your son, I have SAA/hypo MDS and I am on the same treatment. Hope his ATG works for him.:)

[JodyW]

Neil,

I can't thank you enough for this site. It has been a nightmare having no access to information other then what Trevor tells me in a 15 minute phone call and what I could research on the internet. The link to the shower thread was very helpful in putting the tainted blood theory to rest. With budget cuts I was afraid they were giving him less expensive non lucocyte poor blood. Still not sure, but now we know this at least.

I do know that the Dr. wanted to raise the cyclosporin on Trevor but they decided against it because of the side effect. I have no idea on his dose or why they wanted to raise it. In March when this was discovered his Hbg was 2.2, plateletts 5, ANC .01 and cellularity 4%. After 3 months his Hbg was 8.9 , ANC 1.0 , plateletts 96. and I think WBC 3.2. They said they wont consider Trevor for a BMT because he is in prison and since he doesnt get out for 3 more years I am assuming they will just keep him on cyclosporin. From reading everyone's post it looks like they are on it for a long time, but they talk about taking him off it after 6 months to see if it worked. Which doesnt make sense to me. But it may be getting lost in translation. I got a court order for his medical records so I could see whats going on myself.

I also saw the conference in Tampa in Oct I will be attending. Again, thanks for the info it is very helpful.

[JodyW]

Berry,

Thank you very much for your reply. Letting Trevor know he isnt crazy, that this is something that will happen to him and that it happens to others, will Im sure reduce some of his fears around it.

Good luck to you.

[Karenish]

HI,
My son Trevor was diagnosed with VSAA in march had ATG and is currenly on cyclosporin. He recently started to have his left arm and leg turn red and get very hot. He described it like frost bite when your hands are so cold it burns if you run it under water. The Dr told him it was Flashes. I looked up flashes and could only find hot flashes which doesnt seem to apply.

Unfortunatly my son is in prison and he has limited access to the hemotologist , no specialist in AA and a prison Dr who knows nothing about AA. Any idea on what that response may be. Im concerned the prison is giving him the cheepest blood they can find and may be having some effect.

Absolutely concur with the others. tell your son that he may get "hot spots" I tend to get them round my knees and arms, they go hot and red out of the blue and then they go back to normal. Also if I pick up something really cold or walk barefoot, I get that hot feeling....like chillblains (uk term). If I was my hands in really hot water they sort of ache for a while...I have also got soft downy hair on my shoulders, arms and side of face (I am female). Also get the tremors in the hands and sometimes my legs are "restless" - all classic cyclosporin side effects!! Hope that puts his mind at rest xx

[JodyW]

karenish,

Thanks for the reply. It does help. He also says his sight is going. Is that also a side effect. Do you know if it is permanent and how bad it can get?How long do the side effects last, as long as you are on the drug? Does it get better as time goes on , do they tend to go away after a while or is this it from now on?

[Hopeful]

Hi Jody,

It sure seems like your son is responding to cyclosporine alone. Typically, cyclosporine isn't tapered until counts have stabilized for 3 months... not when they are still going up. The marrow needs time to recover so that it can fight the battles without help of the drug. So, there is a significant risk of relapse if the cyclosporine is doing most of the work, and it is stopped too early.

Cyclosporine is expensive. So, cost may be a factor in their 6 month decision. Perhaps they just plan on lowering his dosage rather than stopping cold turkey???

The lower the dosage of cyclosporine, the less side effects, in my experience.

[JodyW]

Hopefull,
How does one know what the normal range for Cyclosporin should be? Increase,taper,add , subtract? My biggest battle is not the disease at this point but in making sure Trevor gets the medical care he needs under difficult circumstances. If stopping cold turkey in 6 months to"see what happens " is the plan and its not a good one, then I will work on that.

Thanks

[Hopeful]

Jody,

I have read and been told that 5 mg/kg/day is the "standard" therapeutic dose. (I say "standard" because there aren't really any established standards for cyclosporine and bone marrow failure diseases.) It is thought that if you are above that dosage, you will have more side effects than therapeutic benefits. Here is a good article comparing cyclosporine alone to ATG/cyclosporine. If you read it, you will note that the intention was to stop the cyclosporine-only group cold turkey at 6 months. However, if their counts were still increasing, they continued them on the cyclosporine at the therapeutic dose of 5 mg/kg/day :

http://bloodjournal.hematologylibrary.org/content/93/7/2191.full

Typically, cyclosporine trough measurements and creatinine/BUN tests are done to check that the cyclosporine dosage isn't too high. If you also have access to those numbers (along with your son's current weight and dosage), that would be beneficial.

In summary, I think the thing to determine now is whether your son is on too high a cyclosporine dosage. (It isn't too low, as he has had a good response.) You also want to come up with a game plan to extend the cyclosporine beyond 6 months if his counts are still increasing at that point.

[JodyW]

Hopeful,

Thanks for the info. So Trev did have ATG in March and has been on the cyclosporin since. I read the study and appreciate the info on the standard dosage. Today a Hemotologist from The James CC is suppose to see him so hopefully he will speak with me afterwards. It is good to know what questions I should be asking.

Where does everyone on these forum find so much info. Do you just surf the internet ?

[evansmom]

My son Evan would turn very red even during a lukewarm shower when he was on cyclosporin, happened with every shower and caused some transient tingling sensations also.

With your son's extreme side effects including vision problems, I'd be most concerned about his cyclosporin level in his blood. It almost sounds like it may be too high. How often is his level checked? No matter where the person resides, it seems to me that they still need to have their cyclosporin levels monitored routinely. Too low and the AA flares, too high and the body gets injured, namely the kidneys.

An abrupt discontinuation of cyclosporin should be avoided, especially if one has had a favourable response. Weaning slowly allows the person's immune cells to gradually become re-introduced to the stem cells they were attacking before, and the hope is that they can cohabitate nicely again. A sudden influx of unrestrained lymphocytes can put a person back to square one again.

[Neil Cuadra]

Where does everyone on these forum find so much info. Do you just surf the internet ?
You can find lots of reference information on the Internet, but it's not all useful and you have to watch out for commercial sites that are interested in selling to you rather than informing you. The major drug information sites are generally pretty good. Some sites, such as PubMed.gov (http://www.ncbi.nlm.nih.gov/pubmed/) and ClinicalTrials.gov (http://clinicaltrials.gov/) are excellent resources but are full of medical language that's often hard for laypeople to understand. Over time we learn to understand more of it.

We get excellent information from the Aplastic Anemia & MDS International Foundation (http://www.aamds.org/), whose focus is specific to the diseases we're battling.

Relying on each other also helps us sift out the information we're looking for. If one of us posts something we learned from our doctor or another source, we all learn it. We don't know all of the answers, and we're not qualified to act as doctors for each other, but as well-informed patients and family members we know the right questions to ask!

[JodyW]

I was able to talk to Trevor yesterday,he did not see the Hemotologist but he did tell me that they cut his does from 350 2x a day to 350 once a day when he was transferred to the corrections hospital(cmc) on May 1. He started ATG/Cyclosporin March 26 at the James where he was at 700 . The flashes started at the cmc.
Since I couldnt talk to Dr. I called the local pharmasist who said based on the formula of 5mg/kg/day with his weight at 225 the dose would be 500. I am not sure why he had a drop other then the transfer but I cant be sure. I asked Trev about his other numbers and he only gets CBC numbers if he askes.
The good news is now I have info I need to ask good questions. Thanks guys.

[Hopeful]

Jody,

One more thing to mention...

With Cyclosporine, the goal is to maintain a constant level in the blood. This is according to the package insert.

2 hours after taking it, the level in the blood is peaked. By 11 hours, it is at the trough. So ideally, Trevor would be taking the 500 mg in a divided dose: 250 mg in the AM and 250 mg in the PM, at the same time each day.

[JodyW]

Hopeful,
THank you , this is very helpful. The fact that it is cut in half may be one problem but that it is only given one time per day clearly sounds like a second. I really appreciate your info. I will continue to push for answers and good treatment.