At the risk of beating a dead horse, I can't help but ask about splenectomy success rates among the members of the forum. Here's my stats and may some of you have these things or have used these treatments and hopefully these will register with someone:
Conditions: Type One Diabetes (1995) - A1C 5.8-6.0% consistently, hypo-thyroid (1981), ITP (2011), high triglycerides, high HDL cholesterol
Medications: Insulin Pump (Humalog), Synthroid (.2), Dexamethasone (occasionally), Potassium Citrate, Vitamin D , Imuran (75)
My hematologist seems to think that I'm a great candidate for splenectomy and has once again been encouraging me to consider it. I've been dealing with ITP since 2011 and at times feel defeated when treatments fail. I was reasonably stable from 2011-2017 with IVIG (Privigen/Octagam) but for some unknown reason they stopped working and since then I have not found a consistently steady form of treatment. Dexamethasone works when they go low but I'm still not convinced that it's a long term solution. I'm also tired of the bloating and feeling like the Incredible Hulk all the time.
Having been a type one diabetic for 25 years (almost), I'm concerned about having a splenectomy due to already having a compromised immune system. What wisdom can you share?
Splenectomy is going out of fashion very slowly. They don't do them much in the UK now. They used to think that the spleen didn't do very much but they have recently learnt that it does useful things like sending out certain protective blood cells after a heart attack. The splenectomised are also more prone to having blood clots than normal.
We see people here having splenectomies with some working, some immediately failing and others coming back having relapsed after years. It's known to work best in younger people.
Diagnosed in 2000, at 59, after being on moderately high doses of NSAIDs for arthritis. Splenectomy and rituxan both failed (2004). Did well on prednisone till summer 2018--then terrible reactions. Promacta since 11-19.
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I'm one of the forum's failed splenectomies. In fact, OTHER surgeries I've had to have kept my platelets higher longer than the splenectomy! I was in my 60s when I had the splenectomy, which, unknown to me then, decreased my chances of success. You can probably find some current success results online. (Splenectomy itself wasn't much trouble--laproscopic, easy to recover from. And I've not noticed that I have more tendency to get sick than others who have their spleens. Still--unless I had a pretty good chance of success for 5 years or so, I wouldn't consider one again.)
My splenectomy failed too. But I have to admit, I'm not sorry I did it. I wanted off the prednisone so bad I was willing to do anything. I don't get sick any more often than I did before that, but it made a big difference when I had to have IVIG. In 2011 I did Rituxan and have been in remission since.
Counts have been as low as 6,000 and after 4 days of dechadron (20 mg/day), I went back up to 54,000. 54,000 is fine and I can live with that. But 6,000 is too low. Currently taking Imuran, which is similar to Rituximab. Here's hoping.
I think they think I'm a good candidate based on my age and the ineffectiveness of the medications that I've tried. One of the hematologists at Mayo Clinic told me that Rituximab had statistically worked better in people without their spleens. I've never heard of anyone going into remission after that, but that's awesome.
I refused a splenectomy in 1989 when the only treatments at the time were that or prednisone - they couldn't promise me it was a cure so I kept it and still have it. A splenectomy will work, a splenectomy will not work - I wasn't willing to take the chance it would not work.
I have no idea about Rituxan because I've never had it, do have a friend who had it back when it was 8 infusions and she hasn't had to treat since, it also helped her rheumatoid arthritis.
What was your last count - is Imuran keeping it above 50k? I know nothing about Imuran either - all I've had was prednisone and WinRho.
The main thing is do your research and be comfortable with whatever decision you make!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use
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When a doctor tells you anything ask for the evidence base. If one cannot be provided don’t trust the doctor.
I refused one when my Hemo suggested it but back in 2017 I had surgery and at that time my spleen was enlarged so was removed then I was very upset but have dealt with living without a spleen. I went into remission 2 months after surgery and as of today still in remission. I lived with ITP for 18 yrs and glad I never have to take prednisone again. I am quarantined at home due to Covid19 and also with flu season. I hate this part of my life but will survive. It's an individual decision if you want to live with or without.
33 yo with counts 45k-160k on 75mg Promacta. Recent splenectomy.
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I'd love to hear more about your recovery 2 months after splenectomy if you are up for sharing.
I also refused splenectomy when I was first diagnosed in 2012 but I recently went for it in hopes of getting off promacta to have children. Even a short remission would be all I'd need. Interestingly they also told me my spleen was enlarged, which was unexpected in otherwise healthy ITP patients. They had to make an extra incision just to take it out. I haven't had any bleeding or bruising symptoms since my splenectomy but my counts slowly made their way down below 20k in the 2 weeks since surgery so I am back on the meds for safety. How did your counts fluctuate after your unexpected splenectomy? And what other treatments, if any, did you continue in those 2 months between splenectomy and remission?
Thanks and hope you are having a safe winter,
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