Mycophenolate update after Rheumy appt

[panda2]

Hi all,

It's the wee hours of the morning. Can't sleep -- but that's another story.

I saw my Rheumatologist earlier today to review my experience on Mycophenolate. I was feeling quite bright as I'd had encouraging results since a few weeks after starting it. My sun sensitivity went way down, which was the biggest and best surprise. The fatigue seemed to dry up -- amazing. My facial flushing-come-overactive nerves after temperature changes, in the sea or pool, had almost fully stopped. I noted my low grade fevers were lower grade and the sweating was more intermittent. My complaint was that when I felt awful, boy did I feel awful. Curled up in a ball cramping, diahrrea or many loose stools throughout the day/night, nausea...

I wasn't prepared for her response. She wanted me off the Mychophenolate. Off it! After all that positive! There was an issue regarding the fact that I had been put on Leukotriene inhibitors (Montelukast) and antihistamines by my Dermatologist because of suspected mast cell disorder only a week after I started the Myco. This was not enough time to see if it was the Myco that was making me feel better. And I have since seen info about Montelukast, which does potentially help sun sensitivity. As well I've been having such terrible bloating on a regular basis and found that mast cell problems can affect the gut. After no let up on the bloating for months, wouldn't it disappear today -- for my appointment, along with 2 kg! But I suspect that is due to the Myco side-effects, though it could be because the Montelukast is working. Gheesh.

I was stunned into protesting, which I probably wouldn't have done otherwise. Maybe we could take me off the Montelukast and the antihistamines instead to trial it that way? She couldn't undo another consultant's prescribing. And she was impressed by this Dermy's conclusions. However, I had the very forearm rash again that this was also supposed to eliminate, making it questionable, if only in my mind. And I had got myself into such a good place beforehand, imagining she might just reduce the Myco dose or change the medication as some of you so helpfully explained to me in my previous post about feeling awful. She said she could put me back on Myco in the form of Cellcept, but not until I trialled time off it. I get this, I really do.

But the thing is (and I did not say this aloud) my sister is coming to stay with me for a month next week from Canada. She was with me all through my cancer treatment 6 years ago -- gave up her life there for me -- and I can't bear the thoughts of her having to go through me having all my bizarre symptoms back again which would seriously impede us from having the fun she deserves to have next month. (Of course she would understand -- that's not the point.)

Exasperation had crept into my Rheumy's tone. "Do you not want to know what is wrong?"

"Of course, but I don't want to lose my summer and go backwards to the place I had no idea just a few weeks ago that I could ever get away from again."

So she switched streams, halved the dose and told me because of the side-efffects, she had to act. This was not going to eliminate anything, but it was a step. She then axed many of my medications. CalcichewD3, Vit D (both prescribed by my oncologist incidentally), Amitriptyline, Movicol (which granted I've not needed during the 'loose' stage this past week+). Of course I'm thrilled to cut down my meds so we can unclog me, but the Amitriptyline is for sleep. And so here I am in the wee hours...

I guess what happens in those appointments and what gets forgotten sometimes when a consultant has a medical plan, is the human element. The human element on our side of the desk who has to live through all the symptoms, worry about and monitor them, have them intimately investigated, and who has become tablet numb. We are the human who does have a life we're desperate to get back to. And if it can't be forever, sometimes it just has to be for now.

So though I've gone back and forth wondering if I should do her plan -- we'd get there quicker in the long run -- I think I have to do my plan this time. My month with my sister. I hope I'm not wrong.

Thanks all.

Panda x

[whisperit]

Hello Panda,

That's a really good post. Isn't that exactly what respecting us as patients (and more importantly, as people) and involving us in our own care is all about? Not to mention 'informed consent'. If we aren't helped into a position where we can choose to take a risk, or go against our medics' advice, then we might as well not get told anything at all. It's fair enough if our medic says 'I won't support this decision', and it's perfectly reasonable for us to worry that we might be choosing an option that is not, objectively speaking, 'clinically optimal'. But we should not feel guilty or bad simply because we decline the advice of the man (or woman) in the white coat. To repeat an overused phrase, 'Whose life is it anyway?' x

[panda2 in reply to whisperit]

Thanks Mike. I really appreciated that. : ) x

[panda2 in reply to whisperit]

Your reminder of the phrase, "Whose life it is anyway?" keeps rolling around and around in my head! It's a potent reminder to take our own reins. x

[Hidden]

I’m in transit just now on way to son’s graduation ceremony - but just wanted to say I can relate to this completely, having been taken abruptly off Myco (3g to nothing overnight) in February. Big hugs, more anon xx

[panda2 in reply to Hidden]

Thank you so much for relating; and the hugs.

(And glad to know you're well enough today to make it to son's graduation!)

x

[Hidden in reply to panda2]

On Valium lol - never thought I’d beg for this but my bum muscles were spasming, causing such pain i couldn’t cope. Baking heat - 28 degrees driving across Scotland with my mini roof down.

I have to admit that my tummy has mostly been less bloated and I have only had nausea and tummy pain for the past week - first time since stopping Myco 4 months ago. And I did feel I wanted to know what this or other drugs were actually helping with and the benefits for me were too unclear as my rheum and vascular doctor felt too.

That said things haven’t been great since stopping either - mainly with neuropathy and lower back and pelvis.

Because of history of anaphylaxis and pancreatitis I get scared of all chemicals now. I take these drugs in good faith but I come off them with a sense of relief too. The GP couldn’t believe all my chemical sensitivities yesterday when I asked for diazepam as last resort to tide me over for a few days. I’m not feeling well but will hopefully muddle through. At a certain point I think we have to respect the fact that our body’s say no to all this Pharma toxicity. It’s a scary balkanvibg act and I do understand about your sister of course. But she loves you and this has to include your chronic health problems as well as acute stuff like cancer - I’m

Sure she will love being with you whatever your body decides to do. X

[panda2 in reply to Hidden]

There's always room in life for a little diazepam! I hope it gets you through today.

Yes, I'm thinking a lot about that tablet toxicity pile-up you mention. Having gone through chemo and gotten used to the idea that one is very sick while on immunosuppressants, I suspect that is why I was in such shock over the idea of stopping the toxicity. But then I also wonder that chemo is responsible for this whole mess I'm in now anyway. So it's all given me food for thought today. And I'm trying to work out a happy medium. i.e. maybe reduce for a couple weeks (so I still get the Myco benefits at the front end of sister's visit), then come off and be off for a whole month by the time I see my Rheumatologist again in 6 weeks. God, I must be a nightmare patient -- making up my own rules! I guess it's just par for the course when you spend so much time on your health.

Thanks for the contact and the reminder that my sister will be just fine. : )

x

[ange726]

Hi panda2

You did exactly what I have done a few times over. My friends and family are precious to me. I don't see them a lot due to distance and occupation. I have delayed taking new medication because I did not want to worry about the side effects etc. I know this will sound trivial but I also love a glass of wine or 2, especially with friends and family so have delayed taking a new dose of a current med because of a special occasion I have been looking forward to. If a Dr told me it was really super important to do as they have asked I would obviously have taken that into consideration.

You have to live your life and feel 'normal' that means spending time with your sister, having fun. Being happy is a great distraction technique for pain.

The great thing is that if things did get the better of you, your sister would also understand if you had to slow it down a smidge.

Have a wonderful time with her and just listen to your body.

Ax

[panda2]

ange-- you really do understand. And couldn't agree more about the wine.. : ) Thank you.

I live an ocean away from all my family and some of my very closest friends. So when they come to stay I just want to absorb every single minute we have and trot them all over Cornwall to see and do everything. It's just such a magnificent life here and they are magnificent people and frankly I miss them. The visits energise me and hold me up until the next one comes to stay. To have managed to have got to a state where the sun doesn't hurt and the fatigue is at bay at present is all I need to have a wonderful time. So therein has been my dilemma. I'm working on a plan. *see above reply to Twitchy.

You make a very excellent point about how being happy is actually an important component in our overall health. I shall hang on to that. x

[Melba1]

Hi Panda, a difficult dilemma and one lots of us have no doubt shared and sympathise with!

Hard decision between the good it’s doing (how lovely to read that you feel so much better despite thinking you would never would again 🙂🙂) but balancing all the side effects and tummy problems. I thought some of these side effects would resolve though especially with a lower dose so fingers crossed. Not sure about the Adcal/ vit D decision though as they don’t have side effects for you do they? I thought we all needed those really.

I am always arguing (nicely) with my rheumy over his clinical view that I need more steroids than I’d like for my personal view! He used to let me negotiate but I’ve got really ill 3 times now from dropping them too quickly so he is completely impermeable to my negotiation now! I’m finding methotrexate is working amazingly for me - just like you said with MMF, I didn’t think I’d feel like that again but am dreading him taking me off it next week if my test results are bad. My immunity is very low and I had a week where I bled from every orifice (except eyes!) so my GPs told me to stop it immediately but I didn’t because I would put up with a lot of bleeding to have this level of energy the methotrexate has given me back!!

I hope you get the balance right and keep feeling well enough to have a lovely time with your sister 🙂

X

[panda2]

Hi Melba1,

What a lovely reply. Thank you. You are definitely in the middle of it yourself! It's incredible what we will put up with just to feel like ourselves again -- for the rest of the time. Bleeding from every orifice would definitely put the GPs on alert, but something in us just has to fight for our right to feel well, doesn't it. That's wonderful news that the methotrexate has given you such energy.

Yes, I'm of the same mind about the Calcium and Vit D. I think her plan is to detoxify me as a trial and then maybe reintroduce? I've never had a single side-effect from Vit D (as I don't think anyone does). So it might all be for not, but perhaps she just needs to try this for her own clarity? As she said, it's summertime -- I will get Vit D from those flashes of sunshine we all get from going here and there. I really can't fault how absolutely thorough she has been with me.

So -- I've made a decision! I suddenly knew what to do this morning. Yestderday my letter finally arrived from the Dermatologist explaining that I likely did have Urticarial Vasculitis (so there will be yet MORE meds) and saying he'd see me in about 3 months after he brought my case up at the Pathology meeting because it was unique. This time frame seemed to clinch it for me.

I rang up the surgery and booked a GP slot this morning. I chose a different GP than my usual one because this one is more overtly caring and understanding. My husband sees her. My GP is extremely efficient for getting things done and sorting out my meds, but we don't have a real relationship and she counts on me to figure myself out; either that or I've trained her to do that... There is definitely a plus in that, but when I get into these kinds of issues that I'm in now, I have realised I need a relatable doctor. Already yy Rheumy, Dermy and Neurologist could all possibly be on the spectrum when it comes to being personal. : ) Fantasic doctors! And I'd rather that in a doctor if it has to be either/or, but it can leave one a little lonely and lost with the emotion of all of this sometimes.

So my appointment was good. I covered virtually all the ground (in 8 minutes I might add!) and told her that I had panicked when the Rheumatologist told me I had to come off the Myco due to side-effects, because of my sister visiting and feeling so good despite feeling so awful. (It was nice to be able to explain that.) She understood. I also explained about the confusion over which med could be healing me and she seemed to know about Montelukast and that it is a mast cell inhibitor (my GP does not know that and glazes over if I mention mast cells). She could see my latest rash and knew why I was assuming it was the MMF that might be helping not the Montelukast. But I also understood what my Rheumy was doing with the lay of the land that she had (particularly now that I knew roughly when my next Derm appt will be) and so I said I wanted to follow the Rheumatologist's instructions after all. I see that it will take about a month for the MMF to exit my system anyway, so I should be ok at least early on with my sister. Because in the end, I DO really want to know what is wrong and as fast as possible. I just needed time to absorb the instruction and think out how it would affect me. I think from now on, if I'm shocked by a decision, I will ask for both options and if I can decide myself in the next day or so.

I have to say I'm nervous about what's ahead without the MMF. But I feel better supported now, not only because of this GP, who will write to the Rheumatologist for me and tell her I've changed my mind, but because of this lovely place where absolutely ALL of you understand.

Thanks again. P x