ITP AND AIHA

I am gradually becoming anaemic and am awaiting the result of tests to see if I now have AIHA as well as Itp.
I am a woman of 68 in Scotland , Uk ,treated at a large teaching hospital.
Can anyone give me some guidance ,based on experience , of the treatment options for the two together after the failure of steroids, ivig, Eltrombopag and Romiplostin to deal with the ITP. Etrombopag worked for about 30 months then my count gradually dropped.
I have been told that splenectomy is less effective at my age. Rituximab would be a possibility I believe. At present my platelet count is 12 and haemo globulin is 104. What treatments are best avoided?

Have you had your ferritin level checked?

You are right that splenectomy does not have a good response rate after age of about 40 but if you wanted to consider it you could ask for the indium test to see where the platelets are being killed off.

You've probably already told us but I forget who said what, so how long did you try romiplostim for? It took me 7 months to get stable on it.

Thanks Ann. I have had an indium scan which showed both spleen and liver destruction.My consultant said even so he might have tried splenectomy if I had been younger. I have had B12 and folate tests and they are ok. I haven 't had a ferritin test, should I? I am awaiting the result of a DAT test. My Haemoglobin was 104 last week and platelets were 12 after 4 weeks at max dose for my weight on Romiplostin. I started Romiplostin on 3/ 7 /15 and peaked at 32 on 24/7/15. Despite increasing the dose I fell back to 12-15 over the next 2 months. Consultant says the protocol advises discontinuation if no improvement after 4 weeks at max dose. Seems that the options are to do nothing( if I choose) if I don't turn out to have AIHA or to go for an immunosuppressant if I do. Eltrombopag gradually stopped being effective for me ; I only got up to 13 finally on max dose.

Yes, you should have your ferritin checked. Mine has been low a few times. If the ferritin is low, it will cause anemia. It's an easy fix with iron pills.

I had a positive DAT screen a few years ago. I'm not sure what it meant. I can't remember why we were testing for it but nothing was said about it again.

Ann: if memory serves me correctly a DAT used to be called a direct combes test checking for antibodies to red cells.


Margaret: if indium scans shows liver destruction not much point having a splenectomy. Mine showed only splenic destruction but I'm still not going to have one. Have you tried immunosuppressant medications yet. They didn't work for me I'm afraid but every one is different

Yes that is what a DAT shows, antibodies to red cells, but I don't know if it means much. I mean some 'normal' people have a positive DAT so I'm not sure how much notice they take of it.

I remember why I had it now. It was when the hep B vaccination caused my platelets and my neutrophils to crash. I suppose I also made antibodies against the reds as well as all the other cells but it didn't seem to cause a problem.

Is the name Coombs the American terminology? I know it confused the hell out of me when I first came here but I soon learnt.

I always heard it was the Coombs test. They either changed the name or it's different in other places. I think anyone can have positive antibody tests, but that doesn't mean the antibodies are going to actually cause a problem.

Hello, thanks for your input. Consultant says that despite the liver involvement splenectomy still can have a positive effect in a good percentage of patients but he feels I am too old and if I don't need immunosuppressants I could at least at first try doing nothing. He seems to think the DAT test will help with info about the reasons for my anaemia. Will ask for a ferritin test on Thurs when I have routine CBC.

According to the Royal London doctors, (Provan included), a mixed ie splenic and liver, result at indium test gives a splenectomy about 16% chance of success. So not great, even presuming age wasn't a factor.

I suppose it depends on the criterion of success one is looking for. At present my consultant( the haematology professor) and I are just hoping to find a treatment that will keep me above 20 . Even at 13 I don't have petechiae or large mouth purpura so at 20 I would be quite well, safer and more confident about travelling away from home.

I'm with Ann on that one. Even 100% splenic destruction does not guarantee splenectomy success.

I'm surprised that he didn't test your ferritin. I would think that would be more common than AIHA. I'm also a bit anemic and even with my higher risk of another autoimmune disorder, I'd still think ferritin first.

When my ferritin was low the last time, it hadn't affected the red cells yet, but would have if I'd let it go. My doctor at the time didn't see any reason to treat it because my reds were still normal. However, I decided to look up the symptoms of low ferritin. One of the symptoms was RLS. I'd had RLS for two years at that point and was so frustrated because I never got more than 3 to 4 hours of sleep every night. It was more like all-over RLS because my entire body felt crawly and achy. I told doctor after doctor and every single one told me that it was 'just one of those things related to Lupus' and shrugged. I started taking iron and within two weeks, the RLS was gone. I still get the problem from time to time and when I do, I start taking iron again. Just an example of how it pays to do research so you don't have to suffer needlessly. Doctors many times overlook very simple things.

Sorry, got totally off track here!

Response to splenectomy ordinarily means normal counts and failure means back where you started. To do a splenectomy hoping for a partial response would be like.. oops.. I nearly said pissing in the wind, but I can't say that..

Ann: oh yes you can, my platelet destruction is 100% by spleen but I'm not parting with it.

I didn't see anything. :whistle: :whistle: :whistle:

Don't worry folks I have no intention of getting my spleen out, I will get the ferritin done tomorrow. We have talked about my diet and I said I thought it was good. As we are both in the same allotment club and I said I also eat lots of meat I suppose the prof assumed my diet was high in iron. I expect that he wanted to see the DAT first. I am at the hospital clinic every week at present so investigation is ongoing.I don't have restless legs but do have lots of back ache at night .I assumed that was a legacy of having had a herniated disc removed, but maybe not.
All I am hoping for in the near future is a better count. I have no expectation of ever having a normal count again.

Many people with ITP seem to also have problems absorbing vitamins from food. I really have that problem and need a lot of additional supplements to keep normal levels. Good luck with your tests.

Have now had lots of tests. Ferritin is ok as is B12 and folates. The antibody test was not strongly indicative of red cell destruction and my baby red cell count was within normal limits. Haemoglobin has been stable at about 104 for a month. Platelets were12 for 3weeks and now 9 on no meds but I have no bleeding, petechiae, or purpura in my mouth so I have decided to take nothing and see what happens. My main symptom is fatigue; I just can't walk uphill without difficulty. No one has suggested iron supplements what do you all think? Should I try that?

If you aren't anaemic then you don't need iron supplement. It'll just make you constipated!

But strictly speaking I am anaemic- a Haemoglobin count of 104 is outside normal limits,it's just that there seems to be no clear reason for it. Being a bit more constipated might not be a problem as I tend to err in the other direction. I've been thinking I may have a malabsorption issue .

So if you're anaemic then take it! I'm not sure what 104 means in haemoglobin terms. It's not the measurement I'm used to. I'll look it up.

LOL.. I looked. It's just 10.4 doh! Mildly anaemic but not greatly so. Take some iron but don't take too much as it's mostly just washed away in the urine anyway and not used.