MDS Aranesp Darbepoetin switched to MIRCERA

[Graham]

Although I had a prescription for Aranesp (Blood Growth factor) which I have been taking for 30 months. On collection in hospital it had been switched to Mircera. No one can explain fully why it was changed. Aranesp is an established EPO drug for MDS whilst Mircera has not been shown to treat anaemia caused by diseases other than for Chronic kidney disease. (info on package)

I know I was the only patient in the hospital being treated with Aranesp and was informed it was withdrawn due to rationlisation? I have spoken to a Haematology - advanced clinical nurse specialist who has informed me that she has never known it to be prescribed for MDS in her Hospital which is a center of excellence for MDS.

My local hospital is looking into the matter and a leading pharmacist there has shown concern, but as yet no decision has been made.

Ia anyone on Aranesp or Mircera or can throw light on my situation.

Sophie may know something and her contribution would be welcome.

Graham

[christina]

Although I had a prescription for Aranesp (Blood Growth factor) which I have been taking for 30 months. On collection in hospital it had been switched to Mircera. No one can explain fully why it was changed. Aranesp is an established EPO drug for MDS whilst Mircera has not been shown to treat anaemia caused by diseases other than for Chronic kidney disease. (info on package)

I know I was the only patient in the hospital being treated with Aranesp and was informed it was withdrawn due to rationlisation? I have spoken to a Haematology - advanced clinical nurse specialist who has informed me that she has never known it to be prescribed for MDS in her Hospital which is a center of excellence for MDS.

My local hospital is looking into the matter and a leading pharmacist there has shown concern, but as yet no decision has been made.

Ia anyone on Aranesp or Mircera or can throw light on my situation.

Sophie may know something and her contribution would be welcome.
Hi my name is Tina (Christina) and I am under Kings and at the moment am self medicating 500 mcg of Darbepoietin weekly and 263 mcg of GCSF weekly. For the last 3 months my Hb has been going down and is now 8.5 but as I am on the highest dose I have to wait until I go back to Kings next month, am interested in what you have written can you explain more please Regards Tina

Graham

[Graham]

Hi Tina,

It is odd that you are self medicating on 500 mg of Darbepoetin weekly, with Hb of 8.5. I am still on 500 mg Darbepoetin once every three weeks, whilst my Hb is higher at 9.7. (only two left in the fridge). My GCSF- Filigrastim 300 micrograms is injected three times a week.. I have been offered transfusions because I get tired, but I have resisted as I am trying to delay that eventuality for as long as possible. I do suffer some bone ache as a result of the filigrastim. My Neutrophils are still below the norm. 0.6 but now 1.7, it does depend at what cycle your injections are on.

You would appear to be on the highest dose of Darboetin being some three times higher than myself, with a lower Hb. I do hope that you too can delay the start of transfusions if that is what is offered. However every case is different and I would not presume your treatment.

I have often enquired as to Plan B , if/ when the blood Growth factors start not to work. The consultants never commit themselves, but tinker with doses etc. the offer of transfusions was out of the blue.

Mt local hospital which is not a center of excellence for MDS like Kings, only offer me 3 appointments a year of some 10 minutes each. That is 30 minutes per year. However I do have an excellent day center with specialist nurses where I can turn up at any time if I do not feel well. I am always seen by a Doctor (haematology ), who can admit me to hospital or prescribe antibiotics etc. I am well looked after although the resources allocate to MDS at consultants clinic could be improved. The waiting room is packed with a steady flow in and out. Obviously with a variety of disorders.

I have spoken to a specialist nurse at an MDS center who has suggested to me that now may be the time to request a second opinion if only to find out my options at this stage. Although in all probability it will confirm my present treatment. My consultants are not allocated enough time to go through this procedure or discuss matters at length..

You have not stated your sub-type, and as you can see on my Signature, I am RCMD. This will obviously have some bearing on any treatment.

I wish you all the very best Tina and will be interested to find out the results of your next appointment.

Graham

[chris]

Hi Graham

Found this on Mircera - albeit it looks like a manufacturer's sales pitch to health professionals!! Unlike this info, if you Google clinical trials, there is info on the Roche trials site which seems to indicate higher levels of Adverse effects in the Mircera arm rather than the Darbepoetin arm. Yes, do ask Sophie about this. Both drugs seem to be ESAs but why the switch? Rationalisation sounds to me like "cost-cutting"?! Maybe if they are using Mircera for kidney patients they can save costs by bulk-buying rather than small orders for Aranesp -especially if you are the only recipient!? The main issue would seem to be whether the drug is licensed/trialled for use in MDS rather than for Chronic Kidney disease?

http://www.mircera.com.hk/professionals ... TUS_DA.pdf

Are you still into walking? And on the Real Ale? (Have I got this right?). We just did some walking in the Cinque Terre area in Italy! Intended to do gentle walks first - building up to the more strenuous ones but easy ones closed due to rockfalls etc so pitched in at the most difficult one and could hardly move the next day - more of a climb than a walk!! Still, I did it!!

Best wishes

Chris

[christina]

Hi Tina,

It is odd that you are self medicating on 500 mg of Darbepoetin weekly, with Hb of 8.5. I am still on 500 mg Darbepoetin once every three weeks, whilst my Hb is higher at 9.7. (only two left in the fridge). My GCSF- Filigrastim 300 micrograms is injected three times a week.. I have been offered transfusions because I get tired, but I have resisted as I am trying to delay that eventuality for as long as possible. I do suffer some bone ache as a result of the filigrastim. My Neutrophils are still below the norm. 0.6 but now 1.7, it does depend at what cycle your injections are on.

You would appear to be on the highest dose of Darboetin being some three times higher than myself, with a lower Hb. I do hope that you too can delay the start of transfusions if that is what is offered. However every case is different and I would not presume your treatment.

I have often enquired as to Plan B , if/ when the blood Growth factors start not to work. The consultants never commit themselves, but tinker with doses etc. the offer of transfusions was out of the blue.

Mt local hospital which is not a center of excellence for MDS like Kings, only offer me 3 appointments a year of some 10 minutes each. That is 30 minutes per year. However I do have an excellent day center with specialist nurses where I can turn up at any time if I do not feel well. I am always seen by a Doctor (haematology ), who can admit me to hospital or prescribe antibiotics etc. I am well looked after although the resources allocate to MDS at consultants clinic could be improved. The waiting room is packed with a steady flow in and out. Obviously with a variety of disorders.

I have spoken to a specialist nurse at an MDS center who has suggested to me that now may be the time to request a second opinion if only to find out my options at this stage. Although in all probability it will confirm my present treatment. My consultants are not allocated enough time to go through this procedure or discuss matters at length..

You have not stated your sub-type, and as you can see on my Signature, I am RCMD. This will obviously have some bearing on any treatment.

I wish you all the very best Tina and will be interested to find out the results of your next appointment.

Graham

Hi Graham thanks for the prompt reply, its all very interesting. I was diagnosed in 2009 at Worthing Hospital West Sussex with MDS/RARS and until I was referred to Kings a year later was being transfused every few months. When Kings put me onto Darbopoietin and GCSF I responded very well and at one point my Hb went up to 14 so they reduced the dose to 400 mcgs fortnightly and it went down to 9.2 so I then went to injecting every 10days, however over the next few months it kept going down, I must say that I felt fine and was able to travel overseas to visit family, then in November 2012 after it went down to 8.6 they put it back to 500 weekly. In December 2012 I travelled with all my medication to visit our daughters in Singapore and New Zealand, plus Xmas in Australia and felt fine, doing all I wanted to do and played golf, although had a buggy for the hilly courses. I had tests whilst I was away over the 3 months and my Hb was steady at around 9, but since then I am slowley going down again and at the last count was 8.5. I had a bone marrow test in April at Kings and there was no change from my first one in 2009, my white cellsand platlets are fine so am very pleased about that. I am back at Kings next month for a routine check up but yesterday I did go in to my local hospital and had a blood test and will get the results in a few days, thats just for my own peace of mind. So whats going on, I'm not sure maybe I am I am not responding to the Darbepoietin any more, and maybe i will need to have the odd transfusion but like you I am putting this off as long as possible. Yes I do get frustrated at not being able to do the long walks that I used to enjoy, but am trying to manage it and as I was told "don't do too much and don't do too little, I try to keep my stamia up and not give in to the MDS.
How about you we were told at one of the forums that you could choose your hospital, I can't fault Kings they have always been so supportive and I travel up every two months, hopefully this will become less and the forum meetings are always very informative, well worth going to. I am going to be 67 this month and most of the time feel very positive, thanks again for the reply, sorry if I have drawn it out, all the best Tina

[Graham]

Hi Chris, Tina,

Apologies to you Chris in that I did not see your Post until after my reply to Tina. I have studied some of the clinical trials but none support Mircera for treating anything other than anaemia associated with chronic kidney disease. The manufacturers claim that Mircera has a lower take up rate so avoiding a high spike/surge. I would have though that this would initially lower my Haemoglobin which although low is at least stable. I have contacted sophie, did so initially on incorrect Email.

Found this in one of the trials. "the safety and efficacy of mircera therapy in other indications has not been established." so would not be licensed for MDS.

Still waiting for decision from Hillingdon but have made mind up to request second opinion. 3 consultations a year of 10 minutes does not seem long enougth and consultants refuse to discuss long term strategy. Although they seem to want to go along transfusion path. Again they have not discussed pitfalls or downside of transfusions. e.g. iron overload. It is only my attendance at forums etc that one gets the full picture. It would seem that yourself and Tina at least get to a Hospital which is a center of excellence for MDS and overall probable get in total a greater chance of asking questions etc.

Hillingdon in fairness does have a good day center for Haematology with dedicated nurses, which I can attend if there is a problem, it is at consultation level that it falls down. It is just so busy with 98% Bed Occupancy and morning clinic is a madhouse.

Yes still enjoy walking and drinking real ale. I do experience difficulties on hills which have worsened. I think Tina is right you should not give in to MDS. Like you Tina I have a daughter and grandchildren now in Malaysia (visited them too in Singapore and New Zealand- teachers) Have put off visiting since my Sepsis and other infection which can come on very suddenly and if not treated urgently could lead to severe problems. White cells are low. Travel Insurance could be a problem. Depressurisation in the aircraft. always seems to effect me.

Hope the Darbepoetin holds out for you Tina, and I note no current treatment for you Chris save monitoring.

Graham

[chris]

Hi Graham and Tina

Yes, do hope you get some joy from a second opinion re your proposed treatment, Graham. I have to say that, although the waiting times at Addenbrookes sound at least as "mad" as yours, when I do see the Prof/Consultant, I do get plenty of time for questions and discussion so that is helpful in allaying anxiety at least.

Glad that everything else is normal, Tina, so travel not such an issue as for those of us with low white cells and platelets! Infection an ever-present threat especially in "exotic" places and long-haul - hence my staying closer to home. No loss for me but must be frustrating for you if you have close family you want to see, Graham.

Keep up with the walking - choose lower hills!!

Best wishes

Chris

[christina]

Hi Graham and Tina

Yes, do hope you get some joy from a second opinion re your proposed treatment, Graham. I have to say that, although the waiting times at Addenbrookes sound at least as "mad" as yours, when I do see the Prof/Consultant, I do get plenty of time for questions and discussion so that is helpful in allaying anxiety at least.

Glad that everything else is normal, Tina, so travel not such an issue as for those of us with low white cells and platelets! Infection an ever-present threat especially in "exotic" places and long-haul - hence my staying closer to home. No loss for me but must be frustrating for you if you have close family you want to see, Graham.

Keep up with the walking - choose lower hills!!

Best wishes

Hi Graham and Chris good to have your input, unfortunatley my last blood count was down to 7.6 the lowest its ever been and thats with 500 weekly doses of Darbepoeitin so it looks as though its not working for me any more so I will discuss this with Kings mid June, as whats the point of being on it. I am booked in to my local hospital for a transfusion on friday so hopefully this will make me feel less tired, although I have to say I played 18 holes of golf on a very hilly course last week and managed it, but I feel that was real bloody mindness and determination, so watch this space, I will be interested to see what they say next month up at Kings have to say they are so good and I have plenty of time to ask questions etc. So keep well regards Tina

Chris

[christina]

Hi Graham and Chris many thanks for your input. Had the results from my last blood test and I am now down to 7.6 which is the lowest I have ever been even though I am on 500mcg weekly of Darbepoietin so it looks as though its not now working for me. So am going to have a transfusion on friday and then up to Kings next month so hopefull they will sort something out. they are very good and give me plenty of time for questions. So watch this space, hope all is well with you regards Tina

[christina]

Sorry didn't think my first message had gone through, so you got me twice Tina