Spleenectomy the only option left

Hi
I have been posting on this forum for a while and it has helped me a lot in dealing with ITP. It has been over 7 months since i was diagnosed with ITP and i have tried predinsone, dapsone, danazol, dexa and rituximab till now. My counts had been below 20 and since last nov they have been below 10 ( 2 weeks back it did go up to 24 but tat was cause of dexa). So now that my counts are still at 5k and all the above options have failed (ya even rituxi, it been almost 12 weeks since my first dose) my doc has said that i will invariably have to get a spleenectomy done. He did suggest that i could try cyclosporin till then but i am a lil unsure cause of its side effects. Also he said that i could get an IvIg shot but that would only be temp.
So now i can get a spleenectomy done in 2 weeks or start off with cyclosporin for now and then do a spleenectomy later. Thing is that my insurance kicks in in April so i am wondering whether it worth going onto cyclosporin till then and then go for a spleenectomy. I have so far not had any bleeding other than a few blisters that have come in my mouth a few times. Any opinion as to what i should do?

I took Cyclosporine for a couple of years. Prior to that, I took Cellcept (a similar immune suppressant) for a couple of years. Both worked fine until they stopped working. Side effects were not too bad really. Far less hassle than steroids. I tended to get colds and such a lot, but I was also fronting a biker bar blues-rock band at the time...which probably had more to do with my getting colds and sore throats than taking Cyclosporine did.

Your doctor hasn't suggested either of the two drugs created specifically for ITP (Promacta and Nplate.)? Or perhaps he has not because your insurance doesn't start for a month. Both run about $8,000 a month.
But Cyclosporine is relatively inexpensive in generic form. Trying it for a month certainly seems like a better option, than does irreversible surgery.
I totally disagree with your doctor. One does not "invariably have to get a splenectomy done". IMHO, It's the easy way out for doctors. Which would be great, if it worked 100%.
If he actually believes that it is invariable, I'd be looking for another Hematologist and a second opinion very quickly. But that is just me.

I like my spleen...we've been together a long time. There are too many other treatment options available for ITP, for me to to consider parting with dear Mr. Spleen. I've used Promacta for just over a year now, keeps me in the mid-50k count range so far.

Cyclosporine may be a good short term option. I took it for psoriasis for a while, and its effect was quite spectacular.

It does have many side effects, though. At modest doses (300 mg/day for a medium sized adult), it can cause tremors and neuropathy. My feet developed an 'icy hot' feeling. It also can cause kidney damage when taken for extended periods. It is a slightly fussy drug, in that changing your diet can change its effectiveness. For example, its absorption is strongly increased when taken with grapefruit juice, so the doctor will probably warn you off of that. (I took a different approach... grapefruit juice is cheaper than cyclosporin, so I reduced my dose and drank it with grapefruit juice. The doctor couldn't find an actual flaw in the logic. )

Given the side effects associated with any medication, I decided to accept a splenectomy for my ITP. So far (coming up on four years since it), it has worked fine, and given me a nice break from fiddling with ITP. Most likely, it will recur (splenectomies seems to last about 10 years for people over 40), and I will have to go back to medication, but for now there are no problems.

Madrid:

The splenectomy decision is a tough one, and a personal one. Some people are dead set against it and some go for it. I also disagree that it will 'inevitably have to be done' - there are still other choices. Even so, what do you think happens when people have gone through all of the treatments, have the splenectomy and it doesn't work? There is nothing else to remove at that point.

Just an FYI - grapefruit juice affects absorption of many drugs, not just Cyclosporine. I'm surprised there are not more warnings about mixing the two. I once read a book called "Bitter Pills" where a woman mixed grapefruit juice with an antibiotic and ended up with permanent neurological damage. I don't like it, so I never worry about that.

Mendenmh - I am forever the devils advocate, sorry, but - I'd say the flaw in the grapefruit juice logic is that you have no idea what dose you were actually getting.

www.sciencedaily.com/releases/2005/01/050124010803.htm

Madrid, the spleenectomy decision is a tough one and the last thing you need is me or others telling you what to do because there's no definitive answer. That's the risk, it may work, it may not, it might fail is a few months or last several years. If only we knew, the decision would be easier. All I'll say is to consider your personal circumstances, faith and personality and make the decision that's best for you. And once you make it, don't second guess as you will have made the best decision for yourself and based on the best information available to you.

If you decide to proceed with surgery, there's lots of experience here to help you prep for that and the subsequent recovery. Regardless of your decision, know that I, and lots of new friends here will be praying for you.

Madridista, have you tried Win-Rho yet? I have regretted that I didn't try it before my splenectomy (which failed to put me into even a three-month remission). After a splenectomy, Win-Rho usually isn't an option, and some people have had good luck with that treatment.

Before you consider losing your body parts (that may or may not work anyway), have you looked into homeopathy? If you feel like you've tried everything else, it might be worth trying something more natural and very inexpensive before letting go of your spleen.

My splenectomy didn't even last a month! The first week after surgery, counts were in the 200's. Within two weeks of that, counts were back down. I waited two years before agreeing to going that route. I can't say that I'm sorry I did it, but I am definitely disappointed that it didn't work. Last Sept./Oct. I did Rituxan and counts are finally in the normal range.

Good luck with your decision. We're here for you whatever you decide to do.

fortunately, the doses used for psoriasis are a lot lower than those used for organ transplant. For organ transplant, they have to take blood samples to measure the absorbed levels to be safe, since individuals are so extremely variable anyways. For short-term use at psoriasis doses, the safety issue is not so severe. I am not really promoting this as a general strategy. Also, there are papers where they have roughly quantified the enhanced absorption of CsA associated with grapefruit juice.

Hi all,

I just have a comment about splenectomy. So many of you seem to hate the idea of having your spleen removed. Sure, it's no fun - and maybe a last resort - but it does work for many, including me.

I'm a 24-year-old woman and, although I was dead-set against splenectomy at first, I finally agreed to have it done in October of 2010, after trying out different treatments for a year and a half. I had tried Decadron (worst medication of my life - severe depression, insomnia, anxiety, crying, crazy mood changes, etc.); Prednisone (awful digestive problems, crazy appetite, swollen face, heavy breathing); IVIg (had an allergy - shortness of breath, hives) and two rounds (8 infusions) of Rituxan, which didn't work. Finally, after so many treatments and visiting my hematologists sometimes a couple times a week for almost two years, I did what my doctors had been in support of for so long - I got the splenectomy, and now, 4 months later, a platelet count of 304,000!

I acknowledge the fact that splenectomy doesn't work for a sizeable minority of ITP patients. However, I have had great success SO FAR. It was a laparoscopic surgery, and it went very well. I was left with four teeny, tiny scars, and my immune system really doesn't seem to be too weakened. I had a couple insignificant complications, but a full reovery took me only a month or so My doctors had told me that, although I had had an allergic reaction to IVIg, the infusion had actually temporarily elevated my platelet count quite a bit, and that often is an indicator that splenectomy will work.

My point is that splenectomy is never favorable, but either are the years of treatments and doctor's appointments... and the worrying that you and your family constantly do. Even if my splenectomy doesn't last me a lifetime, I wouldn't mind a good 10 years or so not having ITP. It's really nice not to worry about bumping my head or just playing soccer or having kids in the future.

Good luck, and please send questions my way if you have any regarding my experience.
Christine

My reason for not wanting a splenectomy wasn't because "it's no fun" but because no one could guarantee that it would work, would "cure" me. Right after I was diagnosed I met someone with ITP, splenectomy that didn't work, count real low - so I didn't want to go through major surgery [lap is still major surgery] and not have it work.

I'm glad 4 months after your splenectomy your count is good and I hope it stays good forever!

Continued success to you Christine! You also have age on your side, the success rates for those over 40 decline rapidly.

My reason for avoiding splenectomy in addition to low probability for success is a deathly fear of serious infection. It's interesting how we get scared of different things - I never had the fear of bleeds at low counts like I do a fear of contracting life threatening infection if I don't have a spleen.
Erica

My reason for not having a splenectomy is that I read too much. I always feared ending up with a Lupus diagnosis that included APS (clotting antibodies), and a splenectomy would have been the worst choice in that scenario. 8 years after my ITP diagnosis, I did get a Lupus diagnosis with APS antibodies. I had no way of knowing that would happen when I turned down the splenectomy option.

I took cyclosporin when I was in my teens and I hated all the side effects, I got a lot if them, not sure if my normal changing teenage hormones had an effect on how I felt the side effects of the drug, but those drugs were the the final straw that finally made me swear off treatment for a long time until about Nov 2009. I got tired all the time, but then to make things worse I also got insomnia and lots of other bad things. Not everyone has the same reactions, but thought I'd let u know a different opinion. It also worked for a while till my body got used to them and then I had to take higher doses to try to get similar results.