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My Bone Marrow Transplant

Pain is inevitable, suffering is optional.

Category Archives: Drugs

I forgot that I hadn’t posted this, it was in draft form until I remembered it today.

I had a normal check up last Tuesday in HK. My blood counts continue to surprise me by slowly and steadily getting better each check up. My RBC is at 3.16 and my Haemoglobin at 11.6. I haven’t seen an RBC above 3 since the transplant.

We have stopped Mycophenalate, one of the two immune suppressants that I have taken since the transplant, and will reduce the dosage of Ciclosporin from 50mg per day to 40mg per day in 2 months time. Every drug removed or dosage reduction is another small victory on the way to full recovery.

We are in the very north of the Philippines for Holy Week, staying at Sitio Remedios, a beautiful little resort of old Ilocano houses assembled on abeach by Dr. Cunanan. The last time I saw him was two years ago in the ICU in St. Luke’s Medical Centre, prior to my being airlifted to HK. It was great to meet him again in much better circumstances.

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Yesterday I went to see Dr. Ruth D at SLMC because she is a pulmonary specialist and I have a head and chest cold and cough. I haven’t seen her since I was in the ICU in SLMC last March. She was the doctor who kept me alive long enough for me to be airlifted to Hong Kong. She helped save my life. She’s a wonderful, cheery, chatty person who is a delight to be with.

The first words out of her mouth after the usual pleasantries were “what prednisolone dose are you on?” That threw me; I’m used to haematologists asking such things but from a pulmonary doctor it was something new. She took careful notes of my current drug regime, and from the questions it was obvious that she knew a lot about GvHD. She asked me where my GvHD presents and I told her the gut, mouth and infrequently the skin. She said she had a patient who had a transplant 8 years ago and the GvHD is only on her tongue. We had a discussion about bronchiolitis obliterans, the most dreaded GvHD, and also scleroderma. She listened to my chest, prescribed a whole lot of medication including a new antibiotic, nagged me to exercise more and sent me on my way.

My weight has increased a bit since I went back on the steroids, today I am 79.6kg, still over 10kg down on my pre-illness weight. But that’s a good thing for other health reasons.

No issues after reducing the steroid dose to 20mg per day. I am coughing but Sam has been sick with a cough as well so no surprises there. No more noticeable edema, sometimes I think my feet are slightly swollen but regular shoes still fit.

I have a tropical fish tank which I find very therapeutic. As I’ve never kept fish before I have started a separate blog cichlidsandme.wordpress.com to chronicle my journey. Why fish? It wasn’t through choice as you will read, but now that I have them I am determined to keep them healthy and alive.

I weighed myself first thing this morning; 78kg. That’s a 4kg drop in the past month. It’s all down to the fluid retention having ceased. My feet and lower legs are back to normal and the rest of my body isn’t as puffy as it used to be. As I’m eating well I am not concerned about what appears to be a drastic loss. I was 92kg before I got sick, so dropping all that weight is good for me. But I don’t recommend this route as part of your weight loss program.

I have no idea what caused this, possibly the cyclosporin dose reduction to 50mg per day a month ago? Let’s see what the check up next week brings.

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I have been given permission to reduce my daily steroid intake from 40mg to 35mg starting immediately. In a few days I can go down to 30mg after checking with the doctor again. Prednisolone is a wonderful drug for controlling GvHD, but the long term side effects make me want to use as little as possible.

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I am back on the steroid Prednisolone to control the gut GvHD, and it is doing a great job. I feel so much better without the constant gut discomfort. My appetite is much, much better and I am gaining weight again. However, I am not sleeping as well.

Unfortunately I was also instructed to go back on the dreaded Itraconazole! I have discovered that the liquid form is not available anywhere in Manila, so I have had to switch to the tablets which don’t absorb as well. I’ll pick up a large supply of the liquid form at my next check up in Singapore in 2 weeks time.

You can buy both medicines over the counter in Mercury Drug here. The Prednisolone is cheap, the Itraconazole is not!

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The Typhoon which hit HK overnight was the worst in 13 years, signal 10 went up for a few hours during the night apparently. By morning it was back to signal 8. To get a taxi to take me to the hospital for my check up I had to pay a premium.  The taxi had difficulty getting in and out of the apartment buildings as there were 3 trees down! There was a considerable amount of debris along all the roads.

I got to the hospital at 9:30am and went for my blood test and Chest X-ray.Then I went to the RHKYC for a late breakfast but everything was closed. Two huge trees outside the club entrance were down. Those trees have been there since I first joined as an Associate Member in 1985! So sad. I walked to Causeway Bay through the tunnel and got something to eat, by which time Signal 3 was up and the trams started to run again, so I took the tram back to the hospital.

Raymond saw me at 11:30! In all the years he has been looking after me this is, as far as I remember, the first time I have ever seen him before my actual appointment time. The consultation was quite long because we discussed the experimental Azacitidine treatment. He gave me another paper to read which reports on a small scale trial.  The upshot of the discussion was that my immunosuppressive drugs need to be tapered off some more before he feels comfortable starting the treatment, so no rush.

After the consultation I headed for the Pharmacy to pick up my 5 weeks supply of drugs. They were unable to fill the ciclosporin prescription. I need 280 10mg tablets and they only had 120. I have to call them tomorrow to see if they have sourced the rest. I have plenty of 25mg tablets left in Manila, so if they can’t fill the prescription I will use those and have a 45:35 dose instead of 40:40.

The good news is that my blood levels are OK, in fact my Haemoglobin is the highest that I have seen it since the transplant. The cyclosporin dose is reduced from 100mg to 80mg per day, the Itraconazole dose is halved (I really don’t like that drug!), and the Prednisolone is reduced from 7.5mg to 5mg but after 2 weeks I am to stop taking it.

I had lunch and dinner with friends and did some packing. Tomorrow is a shopping and seeing friends day.

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