Hi I don't usually post but read everyday. I have lupus fibro and Parkinson's. I have just read dragonflys post re side effects and stopping drugs. I just want to say I know how tempting this is ...
I stopped my drugs a few years back and within weeks had meningitis which left me in itu for weeks and lasting problems. So please please be careful
Much love take care Bea x
I fully agree with you Bea - but Dragonfly did explain that this was with the full support of GP. Dragonfly also did explain very clearly the reasons for this decision including that a rheumatolgist hadn't seen them in nearly a year. I would always explain any decision to my GP and rheumatolgist first though because they can explain the possible consequences of stopping and how best to taper off medications.
Hi oh please don't think I was disagreeing with her reasons in any way... I just worry for her. As I paid a very heavy price. I still wish I could stop my meds if my body would allow !
This is the reason I don't post maybe I don't express myself very well as my Parkinson's makes this difficult. Words don't come easy but I was coming from a caring place as I too stopped meds with gp support. I so hope it works for her.
No no no Bea6 please don't feel I was criticising you for this post whatsoever - I absolutely wasn't! It's really important, as you say, that people do this with support of their doctors who are prescribing the meds. I am in full agreement with both of you and think you both expressed your perspectives very well and they don't conflict at all.
I just didn't want Dragonfly to feel any more isolated or get paranoid, as I did once when I made a similar decision and was criticised by the NRAS community quite vitriolically even though I made it abundantly clear that my GPs (and reluctant rheumy!) supported me in my decision.
Dragonfly is very experienced at living with these diseases and it's so helpful to me to have her and yourself to discuss this thorny matter with and hear how she gets on.
It's good to be able to use such a wonderfully supportive community to express ourselves truly.
I would never like to see drug intolerences as a taboo subject here. But as you say we do always have to point out to newcomers, who may be only just starting their medications, that we who can't tolerate these drugs or don't feel in control after a long time on them are not doing this lightly or being non compliant with our prescribed medicines .
Whew it's such a difficult balancing act I know! X
Absolutely agree. We forget how any adjustment in our chemical make up (by adding or withdrawing drugs) could create a systemic imbalance. We forget how precisely calibrated our bodies are.
Before I was ill I was taking ibuprofens for any little headache and not worry at all. Now I agonise over every little thing that could affect the fragile chemical equilibrium that my body has achieved so far. Even food.
Any withdrawal of drugs can cause imbalance, as with any addition. No one knows how our bodies will respond to add/remove. We hope that they'll respond well but sometimes they don't, no matter how careful we are in doing that.
It gives us a sense of control over our body, though, and that's not to be underestimated.
How terrible for you and your loved ones. I always seek medical advice even if I think I know what I'm doing having done research first and if given green light ok. But always reduced slowly.
Did the meningitis make you perminantly disabled through the blood poisoning? I'm so sorry lovey to hear of your nightmare.
Hx
Hi
Yes it left me in a wheelchair and had to have a brain op which was not easy. I'm a nurse by profession and as such reduced meds by the book but came very unstuck!
The body is a complicated machine hey!
Hope you are having a good day 
Much love Bea
Bea,that's truly shocking! Of course given your back ground you would have done everything carefully. Was no other reason given for this other than reduction of meds,?
Heather x
Hi heather,
No they feel that reducing the cellcept and steroids sent my autoimmune system into overdrive and I ended up with lupus meningitis which does not react in same way to treatment. I feel so frustrated by the side effects of drugs that seem to be our only defence against our own bodies!
Much love Bea
So it gets much more darker. Lupus meningitis? I'm kinda not surprised oddly, as seeing how my body reacted to a virus/chest infection a few weeks on goingly, when I developed the deep, red, angry,hot burns from my shoulders to my wrists that my antibodies 'created' I can see that your antibodies really went into overdrive!!!
Wow. So what dose the future holds for you,?
Hx
Bea you're amazing to post so positively under the circs. I'm so sorry about what you have been through and , as I said earlier, I think it's really important that we are warned and supported well by our doctors when we make these kind of decisions.
A few years ago I came off Duloxetine, which had been doing nothing for my nerve pain and had been worsening my gastritis and Sicca. I asked my GP and he just shrugged and said "if you must then just stop" but there was no advice to taper slowly. I'd been on many other drugs such as Methotrexate and Prednisolone, to name but a few - and had lots of advice about this from my doctors so I took his shrug as meaning I was on a low dose so could just stop overnight.
I ended up going a little psychotic with such a terrible migraine that I developed blood spots all over my eyes from retching - so I had to go back on it (advice from a colleague who was a psychiatric nurse - GPs no help at all) and empty each capsule down the sink a tiny bit at a time.
A few weeks after finally getting off it I developed pneumonia followed by two lots of sepsis and then, pancreatitis.
Absolutely nothing compared to your nightmare because I'm still mobile. But I always warn friends and anyone who asks about them, to taper off these type of medications very slowly indeed.
Twitchy x
Hi twitchy
Oh that sounds so dreadful. Meds are our lifeline so often but come at a price too. It's a mine field when you often feel so desperate and vulnerable.
I also now have Parkinson's which changes things too. But my motto is find joy in the little things. 😍 Xx
You're a brave woman and it's great to have you here. I'm having a major meds wobble myself just now so it's really helpful to me to be reminded not to do anything rash. X
Good morning twitchy
Hope you are ok this morning. Is there anything I can try to help you with regards your drugs wobble.
Even if it's just to listen
Much love Bea
Oh how lovely of you Bea.
Well since you offer!! My problem really is to do with having a highly sensitive and allergic disposition. So all these powerful drugs seem to floor me in different ways. With some I'm fine for a while (18 months with Hydroxichloraquine, 2 years with Methotrexate) and then get a slow form of anaphylaxis but with others it's quite a rapid response - anaphylaxis or pancreatitis or severe nausea.
So my wobble is really just a wobble which has no resolution - unless I quit my drugs with my medical team's support and try an alternative approach.
I've moved recently and am with my fourth rheumatolgist - and I know that like the others she will become increasingly wary about treating me if I get another severe reaction or just can't hack the latest regime. And I can understandthis and am grateful that they don't just give up on me - but it makes me feel like I'm self harming nonetheless. Because ultimately I don't know if these drugs help me much or just make things worse.
I don't have Lupus but I was previously diagnosed with RA and this has changed to primary Sjögren's now. I'm on Mycophenolate and my new rheum would like me to raise my dose to 3000mg - the maximum. I appear to be tolerating it quite well so far (5 months) but have just had a spate of ENT infections with two courses of antibiotics and lots of paracetamol and my liver isn't happy so rheum is waiting until my ALT settles before this hike. But to be honest I don't feel well at all and have a hugely flaring small fibre neuropathyeverywhere with horrid GI issues. I'm also newly on Sildenafil (viagra) for my secondary Raynaud's along with Losartan and Ranitidine.
It just feels as if I'm back on a truck which I've been before - drugged to the gunnels and feeling rubbish. No really bad reactions to any of my new drugs yet - but I do know something really isn't agreeing with me and worry I'm heading for a melt down of some sort with them all.
I was told by someone on the BSSA helpline recently that it's very common for people with Sjögren's to be drug intolerant because we don't flush away the toxins as easily because of the lack of moisture in our systems. Or perhaps it's the link with Mast Cell Activation - but I haven't been tested for this despite having always been very allergic with eczema and alopecia and Hashimotos.
I had a year or two off most of these drugs but the neuropathic pain and fear of its consequences (disequillibrium from death of my tiny nerve fibres) , usually leads me back towards medication like a moth towards the flame!
There that's my sorry drugs wobble tale told in brief Bea.
I hope you don't mind me asking- but was your Parkinson's triggeted by the Lupus Meningitis that you suffered or was this just an awful coincidence? And did you have to resume your Lupus and Parkinson's medications - if so how are you coping with them now? Twitchy xx
Hi twitchy
Firstly please forgive me if this doesn't come out very well as I am using voice dictation as my hands aren't working this evening. I few things for you to consider I have a similar problem and develop intolerance of many drugs and I have tried many different ways to solve this. One thing I have discovered is we are often allergic to the binding ingredients so if we look at this and stick to the make that agrees with us we can often overcome it. As in Hydroxychloroquine I can only take Teva brand. Often our problems can be the brand that can be swappedby the pharmacy. And yes I'm now on all my meds and many new ones! The parky is a sad coincidence.
Much love Bea
Also the cellcept is often better toleratedin its 250mg form as bonded differently. I take four twice daily. Xx
Oh thanks very much for this advice Bea. You are far more coherent with voice recognition than I am with my weirdly painful fkngertips (chilblains or Pompholyx never certain) but I need a stylus now and it isn't as responsive as tips were. I must try voice recognition too as I'm writing with my pinky knuckle just now!
I had a slow form of anaphylaxis with Hydroxy - I think it was the Tiva brand actually but can't recall as it was a while ago now. The pharmacists I've spoken to are always adamant that it can't be filler related because I did ask about this in relation to Levothyroxine once.
Neither I nor my liver couldn't tolerate Methotrexate in any form finally - includinginjectable. Nor can my liver tolerate paracetamol and Codeine is like poison for me!
So i am a bit stuck just now re pain control - rely badly on mind over matter!
I will definitely speak to the pharmacist as you suggest. I'm really not sure that Mycophenolate is the cause of my GI problems or if it's just the disease itself. I am living on prunes, Lactulose and Senna but still have severe bloating and discomfort up until late afternoon when it eases. Then overnight again meaningI'm getting very little sleep ever.
Myco itself is 500 white lilac coloured torpedos brand Myfenax by Tiva. I'm on 2 twice daily - to move up to 3000mg when liver settles back down again.
I really must try and be more methodical in working out my symptoms re drugs, brands etc. I usuallly folllow my instincts but not until lips swell or I'm put back in hospital twice for sepsis or cholecystitis - assuming that the doctors would surely realise if it was actually Azathioprine induced pancreatitis as my instincts correctly indicated?!
Hugs and thanks for taking the trouble to reply when it's hard for you to. I'm really touched that someone who has been through so much that is ongoing takes this kind of trouble to help and advise. Xx
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