I have been taking mycophenolate for the last 3 months, the myfortic brand. Last time I renewed my prescription they changed the brand, i was really unwell with it. I tried for a couple of days but did some research and spoke to you guys and was able to get my local pharmacist to order myfortic in, as it's bad to change. I collected my prescription yesterday but it's now not a normal one that I take to my pharmacist, it can only be filled by the hospital pharmacy... and they don't stock myfortic.
When I explained my problem and asked if they'd order it they said in no uncertain terms no. Apparently they don't have that option and can only stock what they're told to! I phoned the rheumatology secretary and she said others have had the same issue but my rheumatologist when asked says there's no issue in changing, and to take it!!!!!
I've obviously got no choice - either take it and get really sick, or don't, and get really sick!
So now I'm waiting for it (it's really busy so no doubt 3 years and a day waiting!)
Have any of you had this problem?
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soootired
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Hi there, I've been taking mycofenolate for the past 9 months now and i also started to receive a different brand of MMF tablets. I didn't have any side effects from this (same bloody annoying side effect regardless of which brand unfortunately) I phoned my GP who looked all my medication up and found that 3 of my tablets once they get prescribed should be brand specific at all times. I haven't had any problems since the phonecall and my chemist is actually very good too as they were unsure about the brand specific thing when pinpointed it out. Apparently they all do the same but there's a slight difference in each brand I was told.
My brand is myfenax and is in a green box, like BillScotland is I'm in Scotland but I never have any problems getting mines. I left Lloyds to go to omnicare pharmacy as Lloyds were just utter terrible for everything. Hope you get it sorted, stay strong and demand the correct brand, there's a reason why they give you it. Good luck
I changed from cellcept to myfortic ( which is apparently the same but is a slow release version) and have terrible trouble with getting prescription on time. It takes my chemist 2 weeks to get them and I have had to resort back to cellcept for a few days while waiting.
I don't seem to suffer any I'll effects thankfully but I find this unacceptable.
I complained to Lloyd's chemist but just get told Myfortic is a ' special' and they won't stock it. Being in Scotland seems to be an issue too as the English bank holidays get blamed for further delays.
My rheumatologist phoned me and apologized, he said that they're only allowed to write the out patient prescriptions that can only be used at the hospital pharmacy. They're not allowed to use the other kind anymore. The problem with this is that the hospital pharmacy is Lloyds and they are only allowed to use what's on a list from head office which is all generic.
I'm supposed to be increasing my dose too, to 3 a day, his advice was take and see if I can tolerate it over time.
If I absolutely can't, he'll write a letter instructing my GP to administer it.
I had real problems when the hospital changed Cellcept to the generic brand of Myco. I took the generic brand for a month and I became exceptionally ill. I kept telling the doctors it was the change of tablets, but they didn't believe me, and put me through a massive amount of tests to find out what was wrong - after six months and me deteriorating badly, I contacted the renal pharmacist at the hospital and she put me back onto Cellcept. Within a few weeks I started to feel better,but it took 9 months for me to get back to normal and 18 months to regain all the weight I'd lost! There's now a note on my file which says that I should not be given non-branded myco, or anything other tablets. Doctors do NOT realise that Lupus patients can become 'allergic' to many different medications like anti-biotics and once we have meds which agree with us, they should not be changed. Its awful to think I had to become seriously ill before anyone would listen to me. Keep pressing for the drugs you need - don't take non branded meds if they make you sick. Don't believe a lot of what you are told, basically the doctors and hospitals want to save money. If you have any problems go to PALS and complain. I wish you well xx
That's sounds aweful! The best my rheumatologist will do is write a letter of instruction to my GP to issue the prescriptions for me, this way i can go to any pharmacy thus choosing the one who stocks myfortic.
I still don't understand why he's only allowed to use these outpatient prescriptions as opposed to the usual green ones.
I'm just glad I don't pay for my prescriptions, otherwise I'd essentially be paying for something I don't want - As a "consumer" I should at least be able to choose!
IT's really interesting you comment on this. A long while ago when I was in hospital the renal pharmacist said it was important to take the same brand of Tacrolimus. I have also been on MMF for about 11 years now and take Myfenax by "Teva". I have been well and stable but when I read your post I phoned the pharmacist up and asked her. She said it didn't matter as much for MMF if I remained well. Is there a pharmacist with a specialty in renal who could help or can you split the dose? i.e I used to take the whole dose at breakfast time but now take a 250mg capsule 3 times a day. This lessened the symptoms for me when I first took it and now I don't get problems. I see that Myfortic is also known as Mycophenolic acid as (mycophelolate sodium). What sort of side effects do you get? Can you take something prescribed for the side effect which will continue to allow you to take the MMF? Is your Myfortic long acting? The BNF states: "Equivalence to Mycophenalate Mofetil. Mycophenolic acid 720 mg is approx equivalent to Mycophenalate mofetil 1g but avoid unnecessary switching because of pharmacokinetic differences." So Myfortic is not quite the same as Mycophenalate Mofetil (MMF) and I wonder if you are on the correct dose or even the correct medication. Good luck and hope you get something sorted soon xx
I'm a plonker, it's myfenax, not myfortic... That's what happens when you allow predictive text to take over on here!
It's a cost thing I think. It just feels so wrong to be given a prescription that can only be used at a certain pharmacy. It isn't even the same hospital as where my rheumatology appointment is! I have to drive to the hospital where I see my rheumatologist to collect the prescription, then, drive to this other hospital - It then takes ages to park, then walk to the hospital pharmacy, then queue for ages to hand it in, then over an hour's wait to receive the medication....
If I'm going to have to do that each time it's a real headache. It just makes you feel penalised for having an illness you don't even want anyway!
This is unbelievable and not on. So let me get this straight. You have taken Myfenax the last 9 months but they keep changing to other brands which make you feel ill. You spoke to your local pharmacist who was able to order it in but when you went to collect it it was still the wrong brand. The hospital are the only ones who can fill the prescription but they don't stock it and you rheumatologist says just to take what is in stock. Which is what? You get your prescription given to you in one hospital but have to go to another to get it. Can you order in advance? You should be able to set up a repeat prescription with your GP practice. I'm assuming you are on other medication. How do you get those? Hospital pharmacies and GP surgeries do have their own budgets so they are aware of cost and you just want to be able to get the Myfenax in your local area. After 9 months, assuming you are stable, does your own GP not issue the prescription now? You could change to a different consultant (ask you GP to do this). I wonder if a rheumatology consultant is right for you. I see a renal/medical consultant because renal is my main issue with lupus. i just don't understand why you have to see the rheumatologist to issue the prescription. Let me know xx
It does sound rather ridiculous when you put it like that! I've been told that the GP can't issue MMF though they do all my other meds and used to issue azathioprine, but apparently only my rheumatologist can do the script for MMF. And yes, it's a different hospital, so basically I phone the rheumatology Secretary, request a prescription and am told when to go to the hospital to collect it. This was fine when it was a normal prescription, then could go to my local pharmacy to collect it with my other meds etc. However, now it would seem I need to do all the above and then after collecting it from that hospital, I have to go out of my way to this other hospital to its pharmacy because it's not a normal prescription, it's an outpatient prescription, not the usual green one, and it only works at this particular hospital pharmacy (there are 3 hospitals that are all part of the same trust) which is a couple of miles from the one I see my rheumatologist in.
Yes they should be ashamed. Why can't your gp issue the MMF?. Mine does. There must be a simpler way. Does your gp know what you actually have to do to get your MMF and how exhausting it is? It sounds ridiculous because it is! I think you need to make more of a fuss. Write/e-mail your doctors practice and your consultant and insist on an easier way to get this prescription. There may be an advocacy service at the hospital who you can use to help put your case and provide support. Keep asking questions and be a niggling thorn. You have every right to get this sorted xx
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