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woodmere 05-31-2007 04:29 AM

Auto Immune hymolyptic aneamia (AIHA)
I am having my second bout of this blood disorder and wish to talk to other sufferers. If you have this problem, please contact me. I have had in once and got back to normal only for it to come back again. Does anyone know if it keeps coming back or how to prevent it happening. my blood count has risen to 10 and I am on 20 mg of prednisolone a day. I get this pounding in my ears which feels like palputations. I also get very tired and have difficulty sleeping. If anybody can give me advise I would appreciate it.

MissKris75 05-31-2007 08:20 AM

Re: Auto Immune hymolyptic aneamia (AIHA)
I was just diagnosed with this disease a week and a half ago and I'm also on 20 mg of pred and having some problems with insomnia. As for preventing it from coming back, has your doctor mentioned having your spleen removed? Mine said that if the anemia doesn't respond to the prednisone, splenectomy is the next step. It doesn't come with any guarantees, unfortunately, and surgery is a drastic step, but it must work for some people or doctors wouldn't recommend it.

It is good to talk to others who are going through the same thing you are. AIHA is no fun but at least we know we're not alone.

japlopper 05-31-2007 05:57 PM

Re: Auto Immune hymolyptic aneamia (AIHA)
I have AIHA - and I'm on 10mg of Pred, which is keeping my hemoglobin up. I'm tapering down from a month of 40mg, which was no picnic.

I had a splenectomy in 1995 for a different disorder, ITP, so it obviously didn't help the AIHA for me. I think the success rate of spleen removal for AIHA is much lower than what the drs quote you.

Woodmere - the pounding you're hearing in your ear could be due to low folic acid and low B12. (It was for me!!) Both are used up very quickly when you're hemolyzing, ie, when your body is destroying your red blood cells. You'll feel better if you get B12 shots and ask your dr for prescription strength folic acid. Neither are overly expensive, and they will make you feel better. (The sure sign to know if your B12 is very low is if you're having numbness or muscle twitching. B12 shots take awhile to have an effect, but if you're low, you need to get the shots.)

MissKris - Have you asked your dr about taking Ambien? My dr lets me take it when I'm on Pred, and I have to tell you, it's been a real life saver. Without it, I wouldn't be sleeping at all.

I've been through the wringer with this condition, so if you have questions, let er rip. Chances are, I've been there and gotten the medication for it.


MissKris75 05-31-2007 06:50 PM

Re: Auto Immune hymolyptic aneamia (AIHA)
Thanks Jill for the advice about sleep aids. Is Ambien prescription or OTC? I've used an OTC generic sleep aid and it makes me feel kinda fuzzy the next day so I've been a little reluctant to use it. Also, it's interesting you mention prescription strength folic acid. What is the strength/amount of folic acid in a prescription pill? My doc told me to take OTC folic acid and I'm wondering whether I should ask him for prescription. The OTC pill is 400 mcg.

It seems like the splenectomy is a rather controversial operation in treating AIHA. On the one hand, it could help, but on the other hand, it's not as successful as the doctors make it out to be and you're giving up a part of your immune system. Sounds like a tough decision if it comes to that for me. I worry about being on long-term prednisone, however.

One more question, speaking of prednisone, do you have any advice for preventing weight gain while on it, especially dreaded facial puffiness and "buffalo hump"? I haven't gained any weight yet, but I've only been on pred for a week and a half. I'm on 20 mg currently and hoping to stay at that dose as long as my hemoglobin keeps going upward. It hasn't gone up that much (8.7 from the pre-pred count of 8.4 last week) but at least it's going up and not down. Thank goodness for small miracles:)

Sorry for such a long post, but it's nice to have people to talk to about this that have "been there" and "done that".

japlopper 05-31-2007 07:41 PM

Re: Auto Immune hymolyptic aneamia (AIHA)
Ambien is prescription. I really like it. I don't feel fuzzy at all the next day, and I do not get a headache from it. It;s gotten a bad rap recently because people have been abusing it, but as long as you take it as prescribed, it's great. I've never had a problem with my hematologist letting me take it. It's important to get your rest when you have this or you're toast during the day.

The folic acid strength I take is 1 mg a day, but some people take up to 4mg. I don't know how much more that is than mcg, but I think my hema told me, it's significantly more. So, and it's cheap, which is nice.

My only other warning about the splenectomy is that if you do it and it doesn't put you in remission, then you'll probably be back on Pred and other immunosuppressant medications and you'll be without a spleen, so it can be dangerous. I do know someone who had no spleen and had many, many rounds of Rituxan and other chemo drugs. She got sepsis and died becasue her immune system was surppressed, and she had no spleen to help fight the infection. That's an anomaly, yet, it's something to consider. Consider trying all your options (One of which is Rituxan) before getting the splenectomy.

As far as Pred and the weight gain go, as long as you're drinking a ton of water, taking some exercise and go easy on the salt, you should be ok. The real trouble comes when people take 60mg or above for extended periods of time. Those people too probably don't know to up their water and exercise - even if it's just walking - that will help. When I was on 60mg, I ran every day to help with the jitters. I wound up losing 5 pounds. Unfortunately when I tapered, I gained it back, becasue my joints were too sore to run. I had to scale back to walking. But I had to move or my joints would lock up.

Anyway, on Pred, fiber and water are the best thing. It fills you up and prevents the bloat.(Also, one trick is that during tapering, eating red licorice helps! You should also eat bananas because licorice depletes potassium. I don't know if there's any science behind it, but anytime I step down on Pred, I make sure to eat a few pieces of red licorice every day. It helps with the side effects, but it might be in my head, lol. Anyway it's a great excuse to eat licorice.

Take care,

MissKris75 05-31-2007 08:44 PM

Re: Auto Immune hymolyptic aneamia (AIHA)
Jill, thanks so much for the advice. I am upping my water intake which is a good thing since I probably wasn't getting enough water before I went up. I try to take walks too, when it's not too hot out. That's interesting about the licorice and pred tapering. I'll make sure to start eating bananas too. Bananas in cereal...there's my fiber and potassium!:D

A question about Rituxan: Is it a stronger immunosuppressant than pred? Going on these strong immunosupressants scares me; I'm afraid I'd be vulnerable to just about anything. Having a spleen while being on those meds would help. If it comes to my doctor recommending the splenectomy I'll definitely be asking him some questions. He's used to those from me. ;)

Thanks again,


woodmere 06-01-2007 12:44 AM

Re: Auto Immune hymolyptic aneamia (AIHA)

Thanks for the advice about the B12 I will ask my doc. She has mentioned the removal of the spleen, but I really do not want to go down the surgery route. My work involves hospitals and that would be a very last resort for me. Also I have heard that it is no guarantee of succes and it leaves you open to infections.

japlopper 06-01-2007 06:42 AM

Re: Auto Immune hymolyptic aneamia (AIHA)
Rituxan is a different kind of immunosuppressant entirely than Pred. Rituxan targets your B-cells, which I'm told is like erasing your memory - it works like tricking your body into forgetting - like erasing immunity. Sometimes it works like a charm, sometimes it doesn't work at all. It's a common treatment for lymphoma and now even Lupus. But it does fool with your immune system. I think the comparison I heard was like - PRed is a hammer - where it just universally slows down your entire immune system, whereas the Rituxan only targets certain cells. The trouble is, it's a new med, and it's expensive. If I still had my spleen, and all else failed, I'd try that before splenectomy, simply because I've heard so few people who've had success with splenectomy with AIHA.

Yes, you are wise to seriously think before getting your spleen removed, and explore all other options first. I will tell you, however, that I haven't been unusually sick without a spleen. (Knock wood). Save for the occasional sinus infection, and the AIHA, I've been pretty healthy. But, if I get a fever above 100, I make sure to head to the dr, because you don't want infections to get out of control.


Mel52 06-01-2007 08:41 PM

Re: Auto Immune hymolyptic aneamia (AIHA)
Hi my husband had his spleen removed Wednesday because his blood count kept going down in spite of folic acid and predisone. His spleen was getting enlarged. The doctor suspected non hodgkins lympoma. Surgery went very well. They did a bone marrow biopsy, liver biopsy checked other organs and removed the spleen noting it was enlarged and abnormal. We were braced for the bad news. Today everything came back normal. NO CANCER. My husband is no longer yellow or light-headed. In fact he is doing so well he came home today. We will need to have him monitered to make sure nothing develops but it was a bad spleen. He had a pneumonia shot and he will have to be careful with protecting his health. He just looks sooooo much better. We have high hopes now of some normalcy and no more fatigue!:blob_fire

MissKris75 06-01-2007 08:53 PM

Re: Auto Immune hymolyptic aneamia (AIHA)
Mel 52, great to hear your husband did so well with the surgery. Here's hoping he enjoys good health and renewed energy in his recovery and beyond. :)

japlopper 06-03-2007 05:58 AM

Re: Auto Immune hymolyptic aneamia (AIHA)
That is very great news! IT does sound like it was a bad spleen.
Life without a spleen isn't that bad. The main thing is that if he ever gets a fever, don't ignore it. He may need antibiotics more than the next person, but really it shouldn't affect him too much.

Here's to a speedy recovery.


Mel52 06-03-2007 07:48 PM

Re: Auto Immune hymolyptic aneamia (AIHA)
Thank you Jill and Kris. My hubby is doing pretty well just feeling the typical aftermath of a surgery. The jaundice appears to be gone. His skin has some normal color in it. He said the dizziness is gone. Wednesday he has the stitches taken out and in a few weeks he will see the hemotologist and have his blood counts checked. We are starting to feel like he will have his life back. I will always wonder though if this whole hemolytic anemia was caused by the plastic cup on his artificial hips breaking down that triggered inflammation around his hips. It makes sense to me a foreign object breaking down would cause an autoimmune reaction. The doctors said probably not, but because hemolytic anemia is so rare and having artificial hips break down there aren't case studies. Well, the hips are redone and the spleen gone and retirement is 10 months away. Ehaw!:cool:

woodmere 06-04-2007 02:42 AM

Re: Auto Immune hymolyptic aneamia (AIHA)

Thanks for advice. I am seeing the doctor later today. I have been quite bad this week, getting dizzy and short of breath. I think that my blood count may have fallen for the third time in a row even with increasing the prednisolone. I think that she may push me on the spleen removal, but I am very unsure about it.


Good news about your husband, hope everything turns out OK for you.

MissKris75 06-04-2007 08:12 AM

Re: Auto Immune hymolyptic aneamia (AIHA)
Woodmere, wishing you the best for your doctor's appointment. I just came back from one and my counts are the same as last week, but my doc's going to keep me on 20 mg just to give it a little longer to kick in. He'll check again in another 2 weeks.

Jill, thanks again about the Ambien advice. I had my doctor give me a prescription.


Mel52 06-04-2007 08:16 PM

Re: Auto Immune hymolyptic aneamia (AIHA)
How did the dr appointment go Woodmere?

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