Anyone on Mycophenolate?: - LUPUS UK
Anyone on Mycophenolate?
Started on it in September and gradually went up to two 500g three times a day for 3 months. Now decreasing again so down tskeo two 500g twice a day. No real side effects just a bit of an upset tummy to start with but other than that been ok. Obviously catch everything going since immune system is compromised but nothing serious ... Just the odd cold tho had this one for five weeks which has gone into a bad cough. Seemingly its the new wonder drug for sle.
Are you getting put on it?
Sharon x
Thank you for responding Lucyloo023!
I was just wondering because nobody seems to mention it on this site or the facebook site as they all seem to be on Azioprene. I thought I was alone!
I take 1250 mg daily and it has really sorted a lot of my symptoms out since I started it about 18 months ago. When I began to feel better I reduced my Plaquinel to one tablet from two and gradually came off the dreaded steroids.
I am crossing my fingers that when I see the consultant this month I can reduce the Mycophenolate. (Fingers crossed!)
I too had the slightly upset tummy when I started it and I pick up minor bugs that sem to drag on a bit, but otherwise I have felt tons better.
I used to experience horrid feelings of anxiety all through the day and night and have terrible hot sweats and big time sleeplessnes . Now I sleep so much better. Other than I wake up with my dry eyes and mouth quite a bit because of Sjogrens, but I can tolorate that.
It has made a big difference to me and life is far more enjoyable now, but I do respect the fact that there are side effects and so it is important to come off sometime it if at all possible.
So if I am anything to go by you should feel much better the longer you are on it. I do hope so.
It was so nice of you to respond. At least I know I am not the only one now!
I hope you have a lovely day.
Margaret x
Hi Margaret, they are reducing my steroids alternatively with the mycophenolate so will probably be another year before I'm off them unfortunately. Just started hydroxy in January so that should kick in soon hopefully. It's good to speak to others in the same position and I haven't heard of many others in mycophenolate either.
Take care
Sharon x
Hi Lucylooo23!
Thank you for getting back to me.
It's so nice to interact with others who share the same medical problems. It makes you feel you are not alone. Good luck with coming off the dreaded steroids. I was delighted to come off mine! Stck with it and if you are like me it will be well worth it!
Mycophenolate has been really good for me.
Have a nice evening.
Margaret x
Hey Sharon,
Feel so much better to hear from other people taking mycophenolate and reducing steroids simultaneously. I've been on steroids for over 11 years now - don't ask how that catastrophe happened! Now my neurologists are putting me on this new drug with the hopes that it will work and ween me off steroids. I didn't like the looks of the side effects but I'm glad to speak to you all going through the same thing as you've made me breath so much easier because you're all here and some of the side effects have not been so awful.
Thank you so much and stay well!
Joanna
Hi Margaret,
We do have a few people on MMF here. I posted a question about it the other week. You might like to take a look here - lupusuk.healthunlocked.com/...
Paul
LUPUS UK
Hi Paul!
Thank you very much for kindly responding to my question.
I just had a look at the link and will get back to it soon when I have time to read it all.
You are doing a great job there, and thank you for that.
Margaret :O)
Hi, I have been on mycophenolate for just over 5 years now with my dose varying from 500mg twice daily to 1.5g twice daily. I'm currently reducing which is great but personally have fewer side effects with this medication than with the steroids I also take.
Apart from catching every bug going initially (which is not ideal when working with children!!) I have found that my body does appear to build up some kind of resistance/immunity regardless. I know that sounds absurd as the immune system is compromised but once I gave adjusted to the new dosages I find I don't pick things up as easily. On the plus side though it does mean if you have a good GP the don't tend to hesitate over giving you other medications early on to prevent infections from spreading. I hope this has been helpful.
Hello Wendymd,
This has been really helpful as it informs me about my situation from the patient's perspective and not doctors or notes. Thank you.
That's really great news, I'm happy for you. I've been on steroids for about 11 years, may I ask how long you've been on steroids please?
Thanks
Joanna
Hi Joanna
I have been on Steroids for almost 12 years now, although I did manage to come off all of my meds for 13 months in 2004. Not one of my better ideas I must say (don't worry it was with the consultants consent!!!) hence why I ended up on the immuno suppressants and 60mg daily of prednisolone for a short period of time, which I have managed to wean down to 10mg now.
How do u find the steroids and are you on mychopenolate too?
Wendy
Hey Wendy,
Thank you for responding!
I also tried to get off all of my meds once - with disasterous results of epic proportions! My consultant was not too happy with me in this situation. I take 15mg of prednisolone on alternate days currently for the next 3 months (being weaned off also) and by May I will be on Mycophenolate officially (maybe sooner).
The steroids are fine, they live with me as once I got over the side effects, I went back to being as active as possible. I didn't realise until it was too late that they affect your appetite and so I didn't understand why I was eating 6 meals a day! The weight piled on and my face blew up, once I realised what was happening to me, I put the food away and started exercising and managing my natural appetite.
Now, 11 years later, I pushed most of the weight off but it is a struggle to maintain as if I don't work out or eat healthily then my weight goes the wrong side of north! This new drug presents a chance to maybe work out and eat practically without wondering if the drugs are an influencing factor.
How did you find the steroids after 12 years like me? Wow, I thought it was just me on the planet!
Joanna
Hi Wendymd!
Thank you for reponding to my question.
I have been ok on Mycophenolate and feel much, much better for taking it.
I was interested in how others may be responding to it and your comments have been most helpful.
My bugs have not been terrible and fingers crossed it stays that way.
I am pleased to hear that you are doing well on it.
I have an appointment at the hospital soon so as I am doing well I am hoping they can wean me off a few of the tablets!
I do hope yopu keep really well, and thank you again for your kind comments.
Margaret x
I have been on it for just over 12 months. 2 x 500mg per day and with be increasing this by 500mg on March. This is so i can be weaned off the steriods. So far so good!
Good luck Lulabelle!
it worked for me and I came off them after being weaned off. You will feel tons better.
Thank you for getting back to me.
Have a lovely evening.
Margaret x
Hiya!
I've been on 1g twice a day for a couple of years with the hope to cut down on the steroids but with no luck so far. I think I'll try doing that again sometime this year....with the ok from the rheumy of course! Good to hear about you guys on Mycophenolate.
Emma
x
Hi bigbeautifuldoll! (love your name!!!LOL)
Thank you for your response. I am sorry to hear you have to keep taking steroids. I think we all know how that feels. Fingers crossed that all will be well when you visit the doctor and that you can cut down soon.
Keep flare free and have a really nice day.
Margaret x
Hello!
'Tis quite a cute name I think! lol I like to describe myself as that but it's also the name of a WWII plane!
Anyhoo, thanks for your reply and I hope you have a lovely day too, Keep warm,
Emma
x
Hiya LupyLupus, I have been on mycophenolate for just over 4 years now with my dose currently at 2500 mg. I have had no side effects (or none that I have noticed anyway !!) and it seems to be keeping my Lupus/Polyarteritis Nodosa fairly well controlled. I still get flares, but I think that you will whatever medication you are on. It is the nature of the beast of Lupus.
Good luck with it and I am sure that it will work well for you too.
Hi Kentish Man
Thank you for your response.
Its so nice to hear that in the main we have positive feedback from each other. That goes to show that the drug must be good. Although it would be nice not to have to take it at all! We all sem to be ok on it and hopefully one day we can all come off it.
Keep well.
Have a great day.
Margaret x
Have been on Mycophenolate for 3 years. Weight gain has been my main concern, don't cope well being heavier.. Had the stomach upset at beginning. I also take prednisolone. Had a couple of urine infections. Its my Kidneys that has been affected by Lupus.. Need some sunshine.
Hi MaryMcculloch!
Thank you for responding.
I also had a slightly iffy stomach when I first stated taking Mycophenolate. So did Lucyloo (the first response) I think that seems to be quite normal.
I have not put on weight with it. However, it is well recognised that prednisilone helps to increase weight. That is because it tricks you into thinking you are hungry! So best to try and outwit it if you can!
I always want to eat more when I am on steroids.
I hope you are well at the moment and that you get the sunshine you want. (Don't we all?)
Keep warm and well.
Margaret x
Hi, I've been on Mycophenolate for over 10 years now - one thing you have to be aware of is the effect it can have on your skin. I've had 3 skin grafts due to SCC 's & BCC's and numerous other lumps & bumps removed,, so please take care in the sun & use sun bloc. keep well
Hi bevp27!
Thank you so much for your valuable advice.
I was not aware of the serious side effects regading the sun. I know it is a problem anyway as I have lupus, but this obviously makes it worse!
I will be even more careful now!
have a nice day and be well.
Margaret x
Hi Margaret
Are you aware that you can get high factor suncream on prescription from your GP. I have been getting factor 50 waterproof for approx the last 4-5 years. Saves an absolute fortune.
Take care
Wendy
Hi all
I am also on Cellcept 2000mg/ day with 15mg steriods but would like to get down off steriods but every time they try to reduce me the pains all come back in my joints and i feel awful. but what i would like to know is those of you that are now steriod free did you loose any of the access weight that steriods cause
thanks Fiona
Hi Fiona
Sorry to hear you are stuck on the dreaded steroids. I did lose my fat face and gradually some of the extra weight I gained around my waist.
I hope you can get off them soon......I know just how you feel! I gradually reduced mine. i.e. reduced one each week. Then every other day and then one every three days and one every four days etc until I came off them. I did it very, very gradually so my body wouldn't notice what I was up to!!! LOL! I simply weaned myself off really gradually not trying to rush things and it seemed to work.
Fingers crossed you will be able to come off yours really soon.
Kindest wishes
Margaret
I was on cellcept 1g twice a day wwfor about 1 year unfortunately it didn't agree with me at all. My skin was covered with a rash which I found out was discord lupus. I had just about every side affect listed. Got very sickly on this drug so cease taking. I guesss everyone is different but it wasn't for me. Take care x
Hi All
I have been on cellcept for 6 years now as well as a cocktail of various other drugs. However I would say that the cellcept together with the anti-seizure drugs have been the most effective in my case and over time have made a real difference. When I compare myself now to 7 years ago there is a marked improvement. I would add that mindfulness, meditation and some couselling have all helped with accepting the Lupus and with pacing (how I dislike that term!). Fatigue is still an issue but then again we all know about that one don't we.
Good luck with it all and I hope cellcept works for you.
Hi Cloggy73!
Thank yu for your message.
I have been on it for a year now and have been very interested in all the feedback I have been offered from everyone on this site. It is so interesting to hear how everyone else has been getting on with it. Until then I didn'y know anyone else who was taking it.
It has made me feel better and halted my hair loss. I wish I had taken it long before and I would most likely have had a full head of hair! Still......I am grateful I feel better anyway.
I too have the fatigue issue to deal with. Sometimes worse than other times, but I have always just put up with it. It could be much worse I am sure.
I am pleased to hear you have had some benefit from your counselling etc.
Thanks again for your comments. They are most valued.
Keep well.
Margaret x
Whoa,
This just changed the game for me.
The steroids gave me hair loss and weight gain, especially around my stomach and face. I combated them by wearing wigs and working out like a demon but it's a challenge. Does this mean that maybe I'll be able to grow hair and achieve something more balanced in my weight?
Sorry to bombard you with the questions but it's rare for me to speak to people who take my cocktail of drugs and deal the same things. Plus I'm not expecting you to have all the answers - your experiences are just great to hear and learn from as they encourage my sense of hope that the things I learned to accept as permanent - hair loss and weight gain; may not be so permanent.
Stay well,
Joanna
Hi there Joanna!
Thank you for your message.
I posted a comment (2nd one down from the top) explaining a little about my experience. That might help. Also; regarding hair loss I have posted my experiences about that too and you should be able to look under 'Hair Loss' on this site to read it.
I understand fully what it feels like to look in the mirror and see a fat face that doesn't seem to be yours and see that your hair is thinning at the same time. So please be reassured that when I say 'I understand' I really do. x
I no longer take steroids because my medication is working ok now without them.
On my last visit to both my consultants they advised me not to reduce my dose of Mycophenolate (Cellcept) so as not to rock the boat. So I am still on the same dose with everything. (Other than steroids.)
It is important to keep your intake of Vitamin D up if you are going to keep out of the sun this summer.
My hair will never return. I wish I could tell you otherwise, but however, you may not be the same as me as it was not steroids that made me lose my hair. It may have contributed, but it was Lupus that seemed to do that without any help!
I have a volumiser fitted and it is the best thing I could have done. You must have some hair left to attach it to, but when fitted you just can't see any evidence that it is being worn. It just blends in and you wash it and treat it just like your own hair. Much better than a wig as it really feels like your own hair and it does not make you feel hot.
It is a bit costly to begin with, but then again the upkeep is not much different to what a lot of women spend by going to the hairdressers anyway.
Have a look at this site as this is where I go to. They can create a miracle!
hairextensionsberkshire.co.uk/
The weight gain reduced once I came off steroids. You just have to learn how to curb your appetite, as steroids fool you into thinking you are hungry, apart from the fact they put weight on you anyway.
I am more or less back to how I was now and of course I have hair into the bargain. It's just that it is not all my own......LOL!!ce you are off steroids you will feel better as they do tend to make you feel a bit low and fed up.
Life is much better. I have not had a flare since being on this drug and so I am sure if you stick with it and do all the right things you will feel better too.
I hope this helped.
Good luck.
Margaret x :O)
Hello Margaret,
I do believe you may be a guardian angel in disguise! Thank you so very much for kindly sharing your knowledge and experience. Much relief about the facial weight gain situation. Despite my conditions - I have Hyperthyroidism and Myasthenia Gravis, I've been taking spin cycling classes 5 days a week for the last 2 months to manage my weight and steroids. I enjoy it as it's fun and not something that people in my situation can usually do with the drug cocktail and weakness. My sister - not really her fault - made the nice comment that she expected me to had lost more weight! I completely forgot in that moment that I have been taking steroids for some time so it does tend to play havoc on your body weight and apetite.
I hope to lose the chubbiness in my face when I move over to Mycophenolate eventually.Thank you for the wonderful referral to Rupunzel's. Unfortunately I do not think they will cater to my hair texture as I am British African - the Indian hair possibly but I may have to go to New York or Atlanta but you've given me some real ideas and hope as my brother helped shave my head last year when my hair just fell out over the years and just looked awful and patchy. It started to grow back but in clumps and tufts - I suppose due to non-steroid and steroid based reasons combined. Like you, I imagine that my hair probably won't come back so I have to look at other options that work for my confidence. Even with the steroids, I've just focused on having a normal life - my conditions live with me and I give them hell!
I'm currently reducing my steroids to 15mg on alternate days until my next consultation with my Neurologist in 2 months. I've told my family the news about the new drug and they've been really fantastic as they have with everything. I was a bit concerned with the side effects of Mycophenolate but after reading everyone's experiences - especially yours - I feel so much better as I've worked really hard to keep my life active. My sisters tried on my first wigs with me and my brother even tried one on for moral support -they even gave the wigs names. I make jokes about my lack of hair but it's personal thing for women so thanks to you, I'm going to look into this some more and see if I can either grow hair again or have the next best thing.
You've been an incredible help, thank you so much!
Joanna
Hi again Joanna!
Thank you for your nice message.
Last time I was at Rapunzel I asked them if they catered for Afro hair as I have a friend from Jamaica who might be interested and they said that they do.
The best thing is to just give them a call as people travel from the USA and all over the UK to go there.
They will most likely ask you to go in for a consultation, but if you live miles away tell them you can't make it just in-case you decide against it. It can get a bit expensive. A bit like keeping an exotic pet on your head......LOL!!
They may well then answer your questions over the phone.
There must be other places that do the same, but they are so nice there and will treat you in complete privacy. They don't allow men in there (they chucked my husband out) and they see people with all types of hair loss inclucing people with cancer.
I am sure it will all get better soon.
Margaret x
Hello again Margaret,
Wow- like I said - guardian angel - you already have the answer to my question for Repunzel's in regard to afro hair. Thank you! I will give them a call this week and ask for a phone consultation.
The privacy element is also fantastic as no matter how much you laugh about it, showing hair loss to strangers is still hard -even if they are professionals used to providing treatment.
Thank you for your words of support.
Joanna
Good luck Joanna!
I hope they will chat to you on the phone.
Tell them I have recommended you as they know me very well now (unfortunately!) (Margaret Spencer)
Have a lovely day and chin up....it got better for me and it will for you too. x x x
Hello Margaret,
Everything you said worked - not that I doubted it!
Called them today and spoke to Ashley who was very helpful and I mentioned you to her (she remembered instantly!). I explained that I lived a little out of the way and that I am African.
Ashley asked me to send photos of my scalp via email and from there she could assess exactly what would be best. She also gave me a thorough breakdown of costs and products for me. All great stuff plus she was really positive that somehow my near baldness could be covered!
Feel so much better - thank you again! Hope you did too.
Joanna
Hi Jonanna!
I am delighted that you are feeling better about things today! :O)
It is a bit on the costly side but when you stat feeling better about yourself it all seems to be worth it. As long as you can afford it. (I allways found hairdressers expensive anyway.)
I have just washed my hair and I use straighteners on it. You just can't tell my own hair from the volumiser when I have finished with it.
I would say the only problem would be getting back to the salon every few weeks (mostly I manage 4-5 weeks between visits (as you have to have it tightened as your hair grows) so you have the cost of your journey to factor in to the cost of the appointment. (It usually costs me £30.00 each visit.
They are all really nice there and it is a very girlie place to go to. When they see you they will draw curtains around you so that you have complete privacy.
They make you feel very welcome and before you know it you will feel very much at home there.
Ashley has a sweet little dog called Oscar and he is the size of a fluffy ball of cotton!
The door is always locked to keep men out and the dog in!!!! LOL
Good luck and thank you for keeping me in the picture.
Keep well and I hope you feel better really soon.
Margaret x x x
Hi there.I am suffering from chronic Idiopathic Thrombocytopenic Purpura and have been taking 1g of mycophenolate a day since 6 months now.I am starting to feel there is a sudden weight gain.I was on steroids too before for almost 5 years.But the weight gain wasn't so much.Is it really because of the medicine or do I need to get my thyroid levels checked?
Please reply!
Regards.
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