Mycophenolate MoFetil (MMF) belongs to a group of drugs known as immunosuppressants. MMF is the same drug used by transplant patients to prevent the donor organs from being rejected. In the case of Pemphigus, then for some people they’ve been very effective at allowing the patient to reduce or even remove the need for steroids altogether, and that’s a good thing. It works by inhibiting an enzyme needed for the growth of T cells (in your Thymus) and B cells (in your Bone marrow) both of which are part of your lymph system. These two types of cells are responsible for cellular level immunity (T cells) and antibodies (B cells). Stop them from growing and you’ve taken a big step towards reducing your immune system’s ability to attack your own skin. This can take up to four months unfortunately, so you need something faster acting to fill in the gap before the MMF becomes effective.
(Is it only me or do many drugs take a shotgun approach to functioning? Targeting isn’t really a high priority it seems, but if it works, it works, and for that we have to be thankful.)
Just to recap if you haven’t already read the page on steroids, they’re the first line attack and mainstay of treating Pemphigus for three reasons. They act quickly, they reduce inflammation, and they suppress the immune system which then means your skin starts to return to normal. Unfortunately steroids come with their own set of problems in the form of some very unpleasant side-effects any one of which may eventually kill you or permanently destroy your quality of life. It’s a gamble taking them, but you may die of a skin infection if you don’t.
What’s needed is to get off the steroids ASAP and replace them with something else which does the same kind of thing but without the disastrous side-effects.
Mycophenolate MoFetil is one of the possible candidates. It comes with its own set of side-effects, but nowhere near as bad as those from steroids, and maybe even less likely to happen too. MMF also leaves you open to infection as it reduces your ability to cope. Another double-edged sword. As the kids say, “it protecc, and it also attac.”
Personally, I would rather be taking MMF and not steroids. I suspect that most of the side-effects are an allergic reaction to MMF more than anything else, and fortunately I’ve never been allergic to anything other than more recently, my own skin. So MMF right now seems to be the next step for me. The only problem is that MMF is slow acting and can take up to FOUR months before it really gets working. This is why you have to take steroids to begin with as they work almost immediately. Once the steroids are taking care of your skin problem, then the next step is to get off them as soon as you can, and as I write this, I’m in the very early days of taking both.
The biggest downside to MMF is you become susceptible to either lymph or skin cancer. This is because your immune system becomes reduced (via inhibiting T cell and B cell production in your lymph system, as mentioned above) and can’t protect you properly from these. You can’t do much about getting lymph cancer – you will or you won’t, but my guess is it’s unlikely, and as your doctor will be monitoring you closely, something can be done about it fairly quickly. As for skin cancer you can help prevent it by staying out of sunlight and use powerful sunblock and ideally clothing to protect yourself from the UV rays of the sun if you MUST go outside. Personally I think this is a minor compared to how badly you can fare with steroids.
Among the lesser side effects of MMF are:-
Nausea, vomiting, stomach pain, diarrhea, or constipation. I’ve so far been lucky in 10 days of taking MMF of not experiencing any of these.
Headache, mild weakness. I had not so much of a headache as a bit of tension in my head a few days ago, but I was more concerned that it was the steroids causing it rather than the MMF.
Swelling in your hands or feet. As I’ve started going for regular walks, then maybe this is helping me but I’ve not had any swelling at all. Again, this seems to be an allergic reaction to the drug, so I think I’m okay.
Numbness or tingly feeling. Nope, I’m all in the clear on that one too.
Anxiety, sleep problems (insomnia). No anxiety for me thanks, just a general feeling of upset and sheer bloody annoyance that I have PF. As for insomnia being a problem, it only becomes that if it’s something you don’t want. I’m currently only needing about 4 hours sleep a day which I find extremely deep and restful. I suspect it’s actually the steroids causing this, as when I’m awake I feel pretty damn good – one of the positive side-effects that can occur with steroids. So if the build up doses of MMF ARE causing the insomnia, I don’t give a damn. It alows me to stay up all night working (self-employed work-at-home), go for a walk early morning before it’s properly light, take my medication with my breakfast and then sleep for 3-4 hours. I wake up competely refreshed, as if I’d had 8-10 hours deep sleep, and ready to start again. I guess I’ve been lucky.
There are also a set of more serious side-effects which if you experience any of these, you should stop staking MMF and call your doctor. Again, these all seem like allergic reactions to me, so if you’re not an allergic type person like me, then you could be in the clear. I have been lucky on that front.
Fever, chills, body aches, flu symptoms.
Pale skin, easy bruising or bleeding, unusual weakness, trouble breathing, fast heart rate.
Bloody, black, or tarry stools.
Coughing up blood or vomit that looks like coffee grounds.
Painful or difficult urination.
Chest pain.
Feeling like you might pass out.
Problems with vision, speech, balance, or memory.
Weakness in your legs, or a lack of coordination.
I’ve not experienced any of these, and as I suspect the root of them may be allergic reactions, I think I’m probably in the clear and safe to continue taking MMF. Small mercies.