AIHA question

[jackie_girl]

Karen,

I'm glad you mentioned your thoughts about starting a family. It is always in my mind right now.

I have had a few difficult years in the baby department -- two miscarriages in 2000 following a year of attempting to get pregnant. Several investigations led to me finding out that I had a hormonal problem-elevated prolactin. I was put on medication to get that under control and told to wait a couple more years before trying to get pregnant again. My endocrinologist gave us the green light in August...around the time I must have been getting very ill with AIHA (as far as I can figure). My periods had all but stopped and of course, I was too sick to conceive. Irony is a lovely thing.

Now, having talked to my internist (one treating me for AIHA), he thinks that the miscarriages could have had something to do with another immune problem (it's possible that my body developed antibodies to the babies), which isn't uncommon wth women with autoimmune problems. The treatment is prednisone, of course.

So what do I do now? I am obviously waiting until we can get a more definite picture of what will happen in the next 6 months or more with the AIHA. It needs to get under control before I do anything. I will ask my GP for a referral to a high-risk obstetrician and get that in the works. At the very least, I'd like a few more opinions on the matter.

Then, there's that nasty issue around me getting older. 33 isn't old but I'll be 34 in a matter of days and I don't want to be parenting a young baby much past the age of 40 or so. We've been married almost 8 years and have enjoyed the freedom that being childless brings, but of course, the heartbreak of watching my good friends having babies is always there, too.

There IS medication to help prevent osteoporosis. Little old ladies (like my beloved grandmother) take it all the time. It is incredibly expensive (I have the good fortune of being on a great drug plan and being Canadian with our controlled prices) so I can manage to pay for it.

Yeah, yoga and swimming were once a huge part of my life. I have been thinking that I'm not exercising and therefore getting weaker so when I do get out for a walk, I feel weak. Vicious cycle. I will remember to do only what I can for that day.

It's great talking to you,
Jackie

[Ouise]

Hi, all--

Just a note about prednisone and bone density (whatever). My regular doctor kept wanting me to take one of the bone pills (like Fosamax, I think is the name), but my hematologist has said no, not wanting to add more pills to the mix, I guess. But I do take a multivitamin AND extra calcium daily (I like the chewy calcium "candy"--it comes under a variety of names, like Viactiv, and is sold at most drugstores I think). I understand that prednisone isn't good to the bones, so make sure you get calcium in your diet.

For exercise, I walk my little old dog. I've gone from about a half a block (and wiped out) to about three blocks and feeling good (took a few months though). I had Rituxan treatments, and they seem to have helped a lot.

Thanks to all of you for your information and sharing.

Ouise

[babyfish]

Jackie - I'm so sorry that you've had such a horrid time in the baby-making department. I'm sure that there's nothing I can write that will be of any help. But it sounds like you are doing all the right things and have a very healthy attitude to it all. We've only just started trying but I'm totally aware that we could be in for a very similar journey.
I have a friend who is also trying to get pregnant and we laugh saying that all our friends seem to be joining a special pregnant club that we haven't been invited to join! Everyone is pregnant so I know what you mean when you say how painful it is to watch your friends happily pro-creating! BUT - our time will come - one way or another.

I think you mentioned in one of your earlier posts that your doctor was keen to do a splenectomy soon. My feeling is that surgery should really be the last resort and there are many other options to try beforehand. I would definitely talk to him/her about Azothioprin (sp?) Rituxan - definitely worth a shot and neither of these drugs affects fertility. Losing an organ (albeit a non-essential one) is quite a big deal and not a definite cure. I'm testament to that. So I would give the drugs a shot first. I did it the other way round. There have been some very interesting results with Rituxan and although it hasn't cured me, I'm certainly better since taking it. I took it in September 2003 and prior to that was having blood transfusions every 4-6 weeks. I wasn't better immediately and in fact the doctors and I decided that it hadn't worked at all. However, I haven't had a transfusion since November. So something worked - even if very slowly! My blood levels are better than they've ever been and I'm stable on 12mg pred per day. Slowly reducing - will start 11mg tomorrow. Ouise - it sounds like it really worked for you? I'm so pleased. J/O - Let me know your thoughts.

Love Karen x

[jbee6]

Hi all,

When I was first diagnosed I couldn't find anything about this disease....It's comforting reading your similar stories and feelings....I have just relapsed after a 6 year healthy stint....Back on the 50mg prednisolone and anzothioprin again :\ as of last Monday....Caught it early this time

Wanted to reply because I have the same feeling...my count is stabilised and going up slowly however I still feel tired and run down...my heart just aint in things anymore....Despite it feeling like it's thumping on the outside of my chest at times....

I had a splenectomy 6 years ago when I was in yr 11 but this didn't fix the problem....once they weaned me off the steroids I was back in Brizzy....God I hate that place....hospital city I call it....

What did work for me in the past was weaning me off steroids whilst being on Imuran/Anzothioprin and then very very slowly weaning me off that too....

Thankyou in advance for all the posts....They are providing me with a great sense of comfort...wishing you well....

Love From, Jae.

[sicco]

Hi,
I've had AIHA for about 3 years now. I have been in hospital quite a few times before for blood transfusions which at one stage would get every 4 weeks.
What worked for me to slow the AIHA was a combination of Azathoiprine and Cyclosporine. But after weaning them off the AIHA relapsed quite severely. I went back on them with the prednisone but we all know prednisone doesn't seem to do much good especially at high doses.

My doctor was pressuring me to do a splenectomy about 1 yr after my diagnosis but I kept refusing even though at times i was so sick that i was willing to do anything to make it better. Sure, the cocktail of drugs i was taking was much more harmful in the long term than living without a spleen but i feel i it may have been the right decision. I started taking rituxan treatments a couple of months ago and it seems to have slowed the AIHA down quite reasonably. I have been able to come off the azathioprine and most of the cyclosporine for now and only taking 10mg of pred.

You never know if there will be a better treatment tomorrow or what not, but you should always consider your options and decide for yourself what you are ready for, taking into account your age as well. I am fairly young, 21, so i figured i wouldn't rush into a splenectomy since i still have a long way to go and dont want to increase my chances of a serious infection from such a young age, no matter how unlikely. However, its worth taking it out if you have no other safe options, its still better than taking drugs all your life.


Good luck to all and i wish every1 many years of good health!
Ehsan