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Polly S
Mon May 28, 2012, 10:37 AM
Hi All,

I have been on sub Q Desferral 5 days a week for about 5 months and up until recently I have not really had any major problems.

In the last couple of weeks I have been suffering from very severe pain when I have been on the infusion for 2 or more days in a row. The pain is in the sides of my back, my lower back, across my abdomen and in the tops of my legs. It is a really unusual pain, it feels like I am very badly bruised.

Has anyone else experienced this? I am giving the infusions a rest for a few days because to be honest I am frightented of it happening again. No amount of painkillers helped. I could really have done with some ibuprofen but cant because my platelets are low.

Thanks in advance for your advice.

Polly

Marlene
Mon May 28, 2012, 01:20 PM
It's a good idea to stop until you can get your kidneys and liver assessed. And also, find out what your ferritin level is. You may need to have your dose adjusted or maybe stop all together.

If you are maintaining a HGB of 10+, you can try phlebotomies to reduce the iron.

Polly S
Fri Jun 15, 2012, 08:22 AM
Hi Marlene,

Thank you for the reply. My renal function is off so it may have been down to that. Cant have phlebotomies as my consultant thiunks my bone marrow wouldn't take the stress.

Thanks again

Polly x

Marlene
Fri Jun 15, 2012, 09:18 AM
If your serum Fe is below 1000, then you can experience more side effects with desferal.


Also, John's BM cannot handle full phlebotomies either. So instead of getting 500 ml removed monthly, he get 250 ml removed every other month.

Mary4Mike
Fri Jun 15, 2012, 09:12 PM
May I ask what you mean by his bone marrow can not handle a full phlebotomy? Mike had been doing 250 ml on a monthly basis since 6 months post transplant. We were in Florida for 4 months this past winter and saw the doc that we usually used while down there prior to transplant. She ordered up 500 ml to be drawn off. I was a little nervous, but she said that it would take forever at 250. He hasn't experienced any problems with this amount being taken, however, his FE is rising! Any ideas?

Marlene
Sat Jun 16, 2012, 09:53 AM
What we found is that after about three months of doing 450 ml, his bone marrow couldn't produce enough red cells fast enough to make up for the loss. But John's bone marrow was hypo because of the SAA. I think he will always have some level of hypo especially since his HGB still remains in the 12's and platelets stay below 100K.

And yes, 250ml every other month is painfully slow. It's been 8 years since he's been transfusion free and John has done everything you can to get the iron off but he could never tolerate full doses of the drugs because of side effects either.

How high is his FE and what was it when he started phlebotomies. When John's FE was over 1500, the FE would bounce around a lot and at time seemed to remain static. It wasn't until he got close to 1000 that you actually saw it stabilize. Inflammation will mess with the FE readings and high iron causes inflammation.

So what is Mike's HGB now. If it's normal, then you can try 500 ml. If he's able to make it back by the next phlebotomy three or four months in row, then you are probably ok. You just have to keep an eye on it. If not back off to find the right amount. Maybe 500 ml every six weeks or every other month may work.

Mary4Mike
Sat Jun 16, 2012, 10:42 AM
Thanks for responding, Marlene. Mike's FE was over 6000 one year prior to transplant and was put on Exjade. That brought it down, but we switched over to desferral because of the cost and safety issues. At transplant he was over 2000. In January this year, he was at 1200 with a HGB of 18.8. Feb - 1144 - HGB 17.8, April - 1023 - HGB 16.8, May - 1132 - HGB 16.7, June - 1205 - HGB 16.8. He did 500 ml every 4 weeks for the last 3 months. As you can see, his HGB stabilized, but his FE is creeping up. We will see the transplant doc in July and get her take on this. All in all, he feels wonderful. They were actually a bit concerned about his HGB being so high, because it was trending upward at each visit. They did a BMB to check for fibrosis, but everything came back normal. We asked the Florida doc at what point would she stop the phlebotomies and she said when he was below 50. The transplant doctor said when it gets around 500. I guess we will have to see. Again, thanks for responding.

Marlene
Sat Jun 16, 2012, 11:23 AM
One theory on the FE increase is that more of the iron stored in the organs can now be stored as ferritin which is how the body stores iron safely. I've known others who have seen this happen when they get down to a safe level, the FE has small increases and then eventually stabilizes to normal levels. At some point, ask them to run a full iron panel and maybe check to make sure he does not have hemochromatosis.

Also, the mild GVHD can cause it to fluctuate.

Our doc thinks John can stop now but we also want to get the iron down to at least 70-100.

Glad Mike is doing so well. I know it's a big relief for you also.

Mary4Mike
Sat Jun 16, 2012, 01:34 PM
Thanks, Marlene, for your input. Mike has been tested for hemochromatosis and he doesn't have it. I will suggest running a full iron panel at his next appointment.

It sounds as though John has stabilized and is doing well. We are enjoying each day for the gift that they are. There were so many that weren't as enjoyable as these.