For those of you who are taking mycophenolate, did you have any increase in the number of infections you've suffered since you've taken this? What about the suns sensitivity, are you religiously protecting yourself because of taking myco?
I've started taking this today at the lowest dose of 500mg a day. I'm terrified of adding another drug to my Plaquenil but I keep taking short courses of steroids and my lupus doesn't seem to settle. So my rheumatologist believes myco is better than steroids in the long term. But I'm anxious about it, as we all are when starting new drugs.
Any help would be much appreciated, many thanks.
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Purpletop
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Hi Purpletop, I started Myco in March and have had no infections apart from a tummy bug at the beginning of this week, but I think that was more something I ate.
I started on 250mg and worked up to 1g. I did have a flare in April not long after I started it but with highsight I think that was a co-incidence. I have had no side effects. The only drawback has been that I needed an iron transfusion and had to stop the Myco for that and then build it up again. I did notice that the time I was off it I could tell a difference. Symptoms reappeared that I had not noticed had gone. It is worth giving it a go, even though you do need weekly blood tests!
That's good to know, thank you. Weekly blood tests? My rheumatologist said to have them every 2 weeks for the first month and then monthly. I'm hoping all will be ok!
I have actually a decrease in the amount of infections since being on MMF the only problem I have found with virus etc is that when I do get them I become very ill very quickly but so long as I act as soon as I feel unwell then I can usually nip it in the bud, I have a very good GP who helps as much as he can and any sign of me being unwell and it is hit hard with the relevant medication. I am on 2000mg per day plus 8mg pred this seems to keep me fairly stable and as my rheumy says if the treatment is working then don't mess with it.
Hope you get on ok with MMF I have found it a lot better than azathioprine which did causes me a long run of infections and never got me out of flare plus it inflamed my liver and pancreas.
I already suffer from elevated liver function tests (although at the moment those seem to have calmed down a bit) so aza was not an option. When you say that at the first sign of feeling unwell your GP prescribes the relevant meds, do you mean infections? Isn't this disease a nightmare, we need to be constantly vigilant for all kind of things!
That's sweet of you, thank you. I do hope so, although I feel like a fraud once the steroids work because I feel fine and then I wonder what the big deal is. Then I remember that steroids are not dogs, so not for life
This is a sort of puzzle in my mind. A high eneogh dose of steroids will work but there must be point where as you say, you stop them as not good for whole life. But when do they get replaced by something else? Are some doctors more prepared to prescribe them than others. Mine promised I would get off them, then gave up, when I couldn't, so low dose now but it goes up gradually to get the same effect. do you know why you were told not to take them long term?
Why would a short course work? is it meant to get the flare under control then you stop them? If that's the case I've had a 5 year flare!
i do hope it works for you, though you're right it is a nightmare!
In some cases a short course of steroids taken as soon as the flare symptoms appear can stop that flare before it goes too far. Usually that is also helped by Plaquenil/hydroxyl in the background. I have successfully had this since December up until April this year. But then in April I flared again and the short course didn't stop it, only dampened it, so I flared yet again a week ago and took steroids again. Steroids are bad for us for many reasons but the ones that worry me include cardiovascular disease, bone loss and muscle weakness. As I understand it, even a short dose of 20mg of steroids can increase the risk of cardiovascular disease, so if we pair that with the already increased risk due to lupus, you can see why I'm reluctant to continue and why doctors are careful. But all depends on the severity of the disease we each have and a balance of risk v benefits. Some people suffer from lupus attacks to organs to such an extent that taking steroids is the only thing that could keep them alive, so in that case there is actually not much choice.
I think all doctors are aiming to beat the lupus by bringing it into remission. Whether that remission is medicated or natural, they are keen to achieve it. Firstly they will try to achieve a medicated remission, i.e. a stabilisation of the symptoms (reduction both in frequency of symptoms and in criticality). Once that's achieved they will seek to slowly reduce/retract the medication in the hope that the immune system remains dormant and the toxic effect of medication is extinguished.
I doubt there is a tried and tested approach that applies to everyone the same way. We all suffer differently and react differently to treatment.
The conundrum will always be there - should we start on immunosuppressants early so that lupus doesn't get to organs and does irreparable damage or should we avoid the toxicity of them in the hope that the lupus will naturally die down by its own accord and/or with minimal medication. I've tried the latter for 10 months, now here I am trying this. I don't know if it is the right thing to do but I'll give it a go and see.
I get that totally......I too had this dilemma as to whether to do the methotrexate or not due to the toxicity. But it's working in the main sofar......and for the moment my philosophy is if it aint broke then don't try to fix it.
Thank you for such a detailed reply, I understand a bit more now.
Is it usual though for blood tests specific to lupus to be normal or near normal when I am clearly in pain stiff joints etc...
my GP says you still have lupus when bloods are normal but the steroids are keeping it dampened down just not completely.
The Rheumy seems to see normal bloods and say you're OK when I am not! I am clearly better than when diagnosed as I couldn't get out of bed then so I can see that steroids were v. useful. i have not really had faith in the concept of remission but maybe it will happen. good luck with your treatment it seems to suit many folk on this site.
By blood tests are all normal and the rheumatologist still put me on myco, he goes by how I feel rather than bloods. He's more of a preventative measures guy than wait and see and hope for the best. He doesn't want the lupus to go crazy and then too difficult to manage, rather hit it now and put it to bed. Here's hoping!
I take 2000 mg a day and yes my skin is sun sensitive, use a sun block as I tend to burn very easy but I don't have any infections, well the only prob I seem to have is every time I go to the dentist I end up with a abcess not sure if this is related to the drug or not but only happens sins taking the micr, went dentist yesterday and woke up few time in the nite and this morning my face is swallow and sore antibiotics it is again, see if it settles down if not another tooth out that 3 in the last 3 years
Oh no, that's dreadful, it is sometimes advisable to take some antibiotics before having a dental intervention, you might want to consider that next time you're seeing the dentist. But it is very good point, I have always had issues with my teeth and I was already worried about infection due to steroids taking. I'll definitely bear it in mind, thank you for raising it.
My Rheumy might just be being cautious, I suppose they all work differently. I was told at the first sign of infection to go see my GP for assessment. I had a sore throat (but then again I usually do) and went to my GP. On exam there was no indication of infection but he gave me a prescription for antibiotics and said if I thought it worsened and became more than a Lupus sore throat to take the tablets.
Everything with this disease is a matter of assessing the degree of each symptom - we all end up becoming specialists in our bodies and their responses. ok, I will make a note to make sure I see the GP in time - I very rarely have a sore throat but now I'll be on the lookout. Thank you.
I was put on 2000mg a day, by slowly increasing from 500 - 2000mg over a course of 4 weeks. I had weekly blood tests for the first month then went to fortnightly for a month and then to monthly.
There was a massive improvement but not good enough, so my rheumy increased it to 2500mg for 6 weeks, back to fortnightly blood tests, even more improvement, but still only coping on 15mg steroids alongside it.
Rheumy then put me up to 3000mg but I just lost my appetite and felt so queasy so i reduced it back to 2500 and am down to 10mg of steroids.
This is the best i've felt for years, ( I am waiting for the bubble to burst) so give them a go.
You are right about the sun though, I have to totally avoid it now, sit in the back of a car with tinted windows (good job I'm not allowed to drive anymore otherwise I wouldn't reach the pedals!) and go out early morning and evenings.
Just realised after all my waffling didn't answer your other question, no I haven't had an increase in infections but when I get a virus it hits home hard and takes a very long time to go, just like us other lupies.
You made me smile with the second answer, thank you for letting me know about both issues. I'm hoping I will only need a small dose but then we all hope that.
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